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LUPUS UK
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LUPUS UK Community Survey - Question Three - Were you told it was "in your head"?

Hi everyone,

Thanks so much for your fantastic, enthusiastic responses last week. For all these research questions, please do feel free to comment on each other's responses as you do for other posts as getting a conversation going about all these issues is also really helpful. For information about the research this is linked to, please go to healthunlocked.com/lupusuk/... or contact MelanieSloan.

Many people have had long, difficult journeys to diagnosis and report great distress at some of the misdiagnoses, especially "in your head", hypochondria, mental health and functional disorders. We would like to highlight the impact of these misdiagnoses;

If you experienced this from a clinicians, can you please share a few words about how they made you feel? Did it change your attitude to doctors in the future? Did it change the way you could cope with the disease or the way you seek medical help for/report new symptoms?

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Paul, gosh this topic is, even after all these years, deeply emotional for me. Simply yes to all the dismissive retorts you mention, in my case, a couple of others to include an attention seeker, too much of an active imagination, and the worst one ever, by a Neurologist, I needed to go away and have children to occupy my mind, little did he know that I had been diagnosed with renal disease (prior to Lupus) a week before seeing him, and advised not to have children.

How did it make feel at the time, worthless, timewaster, doubted my own sanity, emotionally and physically drained, depressed, and to this day, has made me unbelievably distrusting of medics, and all this was revisited by me last Dec when I was dismissed 3 x for a pulmonary embolism and received appalling treatment at A & E.

I am in Counselling and have been for the last 2 years, not all for Lupus and the above, but we do discuss it, a term I have seen mentioned here, medical PTSD is very real, well it is for me.

Unless I know the Consultant well, I dread new appts, I am always on my guard, and whilst I have my own way now of dealing with sub-standard doctors, it still causes me immense stress, 10 years of being dismissed is hard to live through, and had it not been for the unrelenting belief in me by my GP and husband, I would have given up.

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That's a heartbreaking read, like you say emotional being treated like you are a fraud, also terrifying not being believed and dismissed. Please tell how you deal with sub standard professionals lupuskaren. I have an appointment with a different rhematologist in may and already fearful that I will say the wrong things and thus have another winter like this one.

I have had a nasty a&e experience too, to the extent that I would travel to another a&e in another city if I needed to.

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Wow this made me very emotional. I have children and can’t snap out of this dark place this illness keeps dragging me too. I really need to see a gp but just like you I can’t bring myself to sit in front of a different face and go through it all again just to be sent of back home with the feeling of hopelessness. X

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Oh Karen.. that was so sad to read.. Wonderful you have someone professional to talk to about the impact on you, when you feel able. I drew in my breath.. was quite shocked. Just wanted to send a virtual hug. D

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Karen, like the others who have responded, I find your experiences are heartbreaking. The time the Neurologist dismissed you with the kind of response that is at least 80 yrs out of date truly horrified me. I really can’t say or do anything more than tell you, as you know, you have a keeper there, and send a hug x

The responses to this survey are stomach wrenching to read, but incredibly important.

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I really feel for you. I was ten years till I got my diagnosis in that time I was bounced around from gp,s to various hospital appointments. For 3 years I was on such strong medication for pain & to help me sleep I was a zombie. To the point of falling off kerbs, burning myself when attempting to cook etc. I couldn’t drive, work and didn’t know what day of the week it was. Like you if it wasn’t for my Husband I’d have given up completely. He saw me everyday suffering and knew instinctively it was my immune system he pushed very strongly for my gp to arrange for a rheumatologist to see me. Thankfully I was diagnosed after 10 tortuous years of pain, upset and sheer exhaustion. If I have to see anyone new I dread it, going over the same old ground and trying to explain my medical history etc. I wish you all the best for the future and gentle hugs 💜

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Oh LupusKaren, that is indeed heartbreaking to read. Some people with similar experiences to yours have said that it takes many many positive appointments for any trust to be rebuilt but just one negative, disbelieving appointment (or A&E visit as in your case) to bring back all the memories and undo some/ all of the rebuilt trust. If it's not too painful to share, is that what you mean when you say it was all revisited in A&E last year with the PE?

So pleased you have a supportive GP and husband.

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Told somatism, we will prescribe Prozac. Need to exercise and will feel better. Alcoholic ! I felt angry, dispair and unsupported medically. But also determined as have a strong family history of AI conditions. After too long a time I was seen by a consultant who got what was going on . Very grateful. I still get worked up before seeing anyone new .

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I was told I was malingering " you don't like school do you." - had growing pains. ( also stopped growing ) That was when I was 13. Now I'm 51 I've walked away from a top neurology department who told me I had Fuctional Neurolological disorder....for 'flips' sake. I accessed the MRI, PET and SPECT scans from their department myself - showed them to my GP and a Psychiatrist. They were both in total disbelief because - mostly because - this dept. didn't share some pretty important Neuro info. ( some damage ) 🙃 - lucky me - I dodged a new moronic label. Lucky I've got enough neurons left to see through them after so many repeats of history.

Just very very angry and genuinely bewildered that it just never never ******g stops !!

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Its an awful situation and well done for hanging in there. xx

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Thanks for sharing this Louise-a, did you feel at the time that the somatism 'diagnosis' was wrong or believe it? Some people are saying that misdiagnoses like these made them doubt their own symptoms? When you say you still get worked up before seeing someone new, do you think that it changes how you behave with doctors? In terms of reporting your symptoms, trust etc?

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No I did not buy the somatism stuff, but would have a good cry about being given that label-not in front of them. It made me more determined to get to the bottom of what was going on. One time even told a consultant point blank "your wrong" and just walked out. I get worked up in the days before a visit but i switch into another mode these days when with a doctor. Do not talk to much, stick to the really difficult symptoms, never say i think i have .........and so on. x

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I can remember being 10 years old and having so much joint pain I was told it was growing pains and when I got really bad headache all they could say was that it couldn’t be that bad and I was being a drama queen. When I was so shattered I was told I was lazy. When I couldn’t do the country dancing I was being awkward. I lived all my life being told how lazy and difficult I was. My Lupus wasn’t diagnosed until I was 45. I’m now 66 and still apologising for being ill 😷

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Yes i was told growing pains too. Funny thing was i was not growing, very poor wight and height flagged by my parents to no avail.

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I was told growing pains too! Trouble is I never grew any taller. I felt it was just a way to dismiss what I have as being trivial.

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yes i am short too. My familiy are tall. All through teens awful tonsilitis and making my legs pains worse. Now i know its a trigger for making this type of arthritis worse, skin too. All so obvious once you know what it is. I really get what you say about trivial. But it is not at all as we know. x

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now have the MCTD and sjogrens and vasculitis which has come off the back of my arthritis, maybe. Plus hypermobility and CVID. Lupus is still at the ?? stage but many drugs the same so treat the symptoms these days. x

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What age were you Teddym when you were told that please? How did it make you feel?

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I was about 13. I felt like it was all in my head and I was being dramatic. It made me reluctant to see the doctor. It was like he was dismissing me as a young foolish girl making a fuss.

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Did your parents believe there was a reason for the pains etc but not the Drs Louise-a?

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I do not know as young when began. I remember the trips to gps and call out to home when very poorly and on it went. Sometimes things dampeded down pretty well and life went on. Later in life just a storm of stuff going on.

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I was told growing pains as well. I was 14 when it all started!. I'm 47 now!. Doctors also thought I was afraid of growing up !. It's shocking how it can make us feel and how the medics haven't changed over time.it doesn't leave you even if later on we've had better doctor experiences does it?. X

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Yes I agree . when I see a consultant who is all I would want in a doctor I feel very very lucky. x

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Over the years Louise I've had experiences of both good and bad as I expect you have too!. I've got a good team of specialists now who make it less nerve wracking but I'm always on my guard as you don't forget the bad ones do you?. I'm glad you have a goid team too. X

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I have what i call a mixed bag, and as good as it will get. gp v good too. x

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Gosh that's tough Louise but I'm glad you have such a good GP. That's vital as they are the gateway to so much. X

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Thanks for sharing this Crystal 11. So sorry to hear this, it must have been very difficult and upsetting. Our questionnaire and interview study is showing that many of those who had lupus symptoms as a child and had them dismissed (often as attention seeking, growing pains and being difficult) feel that it can change their whole developing identity and future behaviour. Do you think this happened to you because of the way you were treated? Was it family, friends and/or doctors who said these things to you? How did that feel to be told those things when you were ill?

Sorry for all the questions, please only answer if it's not upsetting

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It’s ok for me to talk about now. I have gone through about 6 years of counselling and had a lot of help from various self help Facebook sites. Growing up was painful in lots of ways. I remember one doctor saying to my Mother just don’t take any notice of her she is just attention seeking there is nothing wrong with her. After that o thought that everyone had the sort of pain I lived with only I was a wimp and couldn’t take it. Life was difficult for me until I got my diagnosis I had been going to doctors for years saying how ill I was but they just dismissed it. Mum would tell me I was just lazy and to get up and do something I would feel better. Even now I have problems with resting and will push my self to do something Hope all this helps for people to understand what it’s like to live with Lupus 😘

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It took me years to pluck up the courage to ask a GP if I might have lupus. She scoffed and that made me feel embarrassed and ridiculous. It was another 10 years of worsening symptoms before I was diagnosed, all that time afraid to ask another AI question for fear of further ridicule. My eventual diagnosis came through a different GP thinking to run the right bloods.

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Thanks for sharing that Justinealexx, When you said you were then afraid to ask another AI question, did you feel within yourself that something was wrong yet not feel comfortable asking? Did it change how you reported your symptoms?

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My GP kept on telling me I had stress and anxiety (I was reporting tiredness, aches and pains that would move around my body, palpitations, intolerance to heat and sun, brain fog). She did blood tests (but not the ones that would diagnose Lupus) and told me nothing was wrong.

This delayed diagnosis for about three years about I fell into a major flare. I was then correctly diagnosed by another GP and referred.

Ironically since being on meds and stabilising, my emotional symptoms have disappeared mostly, which shows it was about disease activity.

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Me too. Amazing how getting the medications right - and recovering from organically based delirium mixed with justified anxiety of having - a flare that can kill you - can help you're psychological state.

I think we undersestimate how important immunosupressants are to our mental health if we possibly have SLE related neuropsychological issues.

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Thanks for sharing this Treetop33

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No one has said it in words but their body language says I am being difficult or imagining symptoms. for example I have all the symptoms of neuromas in both feet but nothing shows on an ultra sound so it is dismissed and I am left with the pain.

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Thanks suzannah16, sorry to hear you're still in pain

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Not directly but often felt scepticism or given unasked for motivational comments or references to how much worse other illnesses were or 'look all right' stuff - very wearing

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Yep. I was told with abject scorn and contempt " What's so special about you" and why cant you deal with youre chronic illness like other people ? when I presented to - a fourth Doctor with difficulties breathing. This was followed by a list of psychologists I could see. It was ACTUALLY a magic combo of being low on iron and blood vessel dilation - constriction problems.

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Thanks milliecox, are these comments from friends/family and/or drs?

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I had a number of misdiagnosis including fibromyalgia without any examination, this was on my third referral to rheumatology.Since my symptoms were not those of fibromyalgia and I felt ignored dismissed not believed and so upset that despite worsening symptoms I would not go back to see rheumatologist for years until I was very ill I was frightened of being sent away again.Since my diagnosis eventually took me being referred 4 times to rheumatologist I spent years in pain getting more and more illl and each time I was sent away had I not been repeatedly discharged by rheumatology I might have had a quicker diagnosis and treatment.This would have saved me a lot of pain and possibly I would still have my career as I became so ill prior to bring diagnosed and treated that I had to stop working I remain angry about the doctor who said I had fibromyalgia without examining me I think she had made her mind up before she met me because I had been seen before and discharged.In my opinion on the whole doctors would get further if they listened to and believed their patients!I was repeatedly told ANA tests were negative but it later turned out they weren't they had just only tested for the common ones and mine was unusual.The evidence was there when my current doctor tried to find it, positive ANA, ANCA MPO, raised CRP , damage to salivary glands and enlarged lymph nodes.So why did it take 4 rheumatologist referrals and years to get help?I believe it was because the first 3 times I was not properly assessed or listened to.I am very grateful to my current consultant but it should never have taken such a long time and so many doctors.

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yes it seems once a rheumy says fibromyalgia there is a bit of a heard mentality, unless you get a think outside of the box consultant or one that runs better tests. So glad you got there in the end. x

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Yes....Came extremely close to loosing my kidneys with this one. Years worth of other damage as well. Total hatred and distrust of Doctors. We need our own dedicated specialists - not a group of Doctors that are into facinsating concepts and voodoo. Apologies to those practicing voodoo. It's not that I don't believe fibro is real - it's just misused by many Doctors.

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Thanks very much for sharing this jane1964, so sorry you had such a tough journey to diagnosis

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I would agree with the comments about medical PTSD. The best word I can think of that sums up my experience is probably traumatised. But the irony is, I'm very uncomfortable admitting that, because I'm automatically waiting for someone to say it's too dramatic.

I'm about to move into year 10 of my diagnostic journey, and it does now look like I'm reaching the end. But those 10 years have been hell. I've mentioned sone if my prior doctor's best phrases before, but the best was definitely "is it possible that everyone feels like this but you're less able to cope?", "You seem very tearful", and the never ending supply of anti depressants he tried to cram down my neck. At a specialist appointment last year to review ultrasound images of my liver (taken due to severe abdominal pain), I realised something had been written in a letter about me having previously worked in the health field and having health anxiety. That specialist didn't even examine me. He talked about pain people can experience in their ribs, and looked it up on WebMD in front of me. Had he examined me he would have realised the pain was below my ribs. I didn't challenge him.

I'm so paranoid about not being believed, I find it hard to talk about how ill I'm really feeling. It just feels like an opportunity to be questioned or discredited, and being unwell is exhausting enough. I stopped in at work to hand in my new batch of sick notes this morning and chat to my boss. She asked how I was and I said "I'm okay". What a ridiculous response. She just gently said "but you're not" and I swear I could have sobbed at her acknowledgement.

I've paid for years of therapy as my last doctor convinced me so deeply that the problem was in my mind. I'm hypersensitive to comments from everyone, my friends, my partner. I'm currently off work because I didn't feel able to give myself permission to slow down when I started to feel unwell, because I'm not diagnosed and still feel like I have no right to be sick. My new doctor is making big steps in helping me move forward, but it's going to be a long road.

My mental health has suffered because of this illness. In part because I felt like I was robbed of my life. But mostly because I was told that I was doing it to myself.

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So sad. well done though for keep going and seeking the help you deserve. I hope sometime in the near future you start to live a better healthier life. x

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Yes I can remember many of those comments you have written here. So wrong to be treated this way. Tearful , she has been looking on the internet, poor coping , oh my !!!!I Hope you get the help you deserve soon. x

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Hang in there bubble. It's not you - it's them. They're the ones who should be doubting themselves. Try and remember this one fact whenever you see a Doctor. I have to remind myself constantly - it's easy to forget.

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Thanks so much Bubble89 for sharing your difficult story and articulating it so well. You are certainly not alone in this, many people in our study have felt the same. I really hope you are very close to receiving a diagnosis, support and compassion.

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Thanks Melanie, I hope so too! This forum has made things much better for me though, it's a real life line. It feels good to be able to feed into this research, I'm sure for a lot of us it's the first time we've been asked for our opinions! 😄

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It’s taken me a few hours to reply to you due to how doctors have made me feel aswell as all the upset and tears. I have had depression from a very young age aswell as Borderline Personality Disorder. Years before I got my lupus diagnosis I had various random symptoms, one of which was getting near enough constant UTI’s and being in pain. When I did go to see a doctor, whether a GP or a doctor at a hospital, I was either fobbed off or literally told it was all in my head on quite a few occasions. To be honest I thought I was going mad. I was struggling to cope and didn’t want to live anymore. I stopped going to see any doctors, but my symptoms were getting worse. Anyway, a new GP started at my surgery and decided to see her. She is such a great doctor who believed my symptoms were real and not all in my head. But by this time I had been trying to cope with my bladder issues for about 15 years and in the end had to have my bladder removed. One doctor said to me that my back and knee pain were due to me being too fat, they were his actual words. I hated him but I felt disgust about myself which I shouldn’t have done because I wasn’t that overweight at the time. Now of course I know my pain is due to lupus. My experiences has left me fearful of seeing new doctors just in case they don’t believe me and either fob me off or say it’s all in my head. I no longer want to see other doctors at my doctors practice, unless it’s an absolute emergency, and would rather wait weeks to see my usual GP. It’s the same in A and E too. I had chest pain one time and a consultant said to me that there was nothing wrong with me and if I had proper chest pain I would know about it, whatever that meant. Luckily I wasn’t sent home again because a heart doctor found that I had did indeed have heart disease, admitted me and started me on even more medication! Sorry it’s such a long message but I thought it was important to share the things myself and other people with lupus have to put up with.

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I know from my own experience that experiencing abuse in childhood - and all abuse is technically invalidation, tends to make me more prone to being abused in adulthood. It's just so awful that the more vulnerable you are - the more bullies can pick up on it and protract the trauma cycle. You're message is so caring - sensitive and powerful - you shouldn't apologize for the length of it.

I have a hard time convincing myself I'm not faulty in some way in part because of how people have treated me.

ps . You may have a Borderline diagnosis - but - just my opinion - I hate that good people who have suffered at the hands of others and had such grindingly hard lives are also labelled as having a personality disorder. It doesn't exactly give you back the confidence & self esteem you deserve ? I dont believe anybody is a disorder.

I really hope you're getting good psychological support that makes you feel less marginalised, more equal and more able to get to Doctors earlier.

x

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very wise words Freckle, thank you so much for sharing your difficult experiences and views on how to improve the situation.

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I’m so sorry to hear that you have had similar experiences to my own. Having had 4 children of my own, I cannot get my head around how supposedly people who love us can treat us like they did. Thankyou for sharing your story too. Yes unfortunately it is true that people who have been abused at a young age, are either abused or bullied as their life goes on. I know because I picked a husband who abused me aswell! It’s left me not trusting anyone and basically not feeling very good about myself. Thankyou for your kind words about my message and I do hope that you now feel better about yourself and that it wasn’t your fault, it was down to the people who abused you. X

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Thankyou for you're very kind and very true words. Its often very hard to remember I'm not the one at fault - no matter how very logical that statement is - it's easy to forget.

Sometimes I wonder wether it's a bit like ' being conditioned ' ? to pick the wrong partners in life ( me too ) - and wether because of our poor early role models - ( abuse and not so nice people being our normal ) we might not be quick enough to pick up on bad Doctor behavior too, especially when we're sick on top of it all. I'm getting a bit better - ( but not as self assured as others ) at sorting out who's decent and who isn't . It's harder to trust my own judgement - even when I do find a good Doctor.

x

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That's a very difficult story to read. So sorry you went through all of this. Thank you so much for sharing; hopefully putting all these stories together will raise awareness and help reduce the chances of it happening to other people.

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I certainly hope it does raise awareness because that was the main reason I replied in the first place. I also have fibromyalgia and have found that the pain from that is sometimes much harder to try to convince doctors it’s not all in my head!

People who have lupus, fibromyalgia or similar issues have a hard enough time coping with their symptoms, let alone trying to deal with doctors who don’t believe anything we are telling them.

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Hi Paul yes this has happened to me. Drs treating me like a child making a fuss. Many have said my health issues were caused by depression another claimed it was also psychological. Many other Drs treated me like a needy demanding patient and having a unhealthy medical obsession as I was presenting with more and more health problems and so many symptoms. I have had to fight every step of the way to get a diagnosis. It took years. I now have a fear of Drs, consultants and specialists and hate having to go into Drs surgeries or hospitals. I am more withdrawn and untrusting of anyone involved in my care especially as I have been told I am ok and test results were fine yet when I got my medical records I was shocked to find they had lied as it was there in black and white that I had been diagnosed with gerd, bleeds on the brain, problems with polyps fibroids and cysts blood results that were high and protein in my water were abnormal. Omg the list goes on and on. I was referred to a lupus specialist who was so nasty asked me why I was here and what did I want. The nurse never spoke and the consultant was so abrupt, rude and uninterested in me that I said I am sorry I wasted your time I don’t need your help and I am ok and just worrying over nothing I politely nodded and left. Fast forward 10 years and I attempted to see another lupus specialist with great anxiety and feeling fearful I had to force myself when multiple symptoms made it impossible to function. I now have my lupus diagnosis I had it all along and for a long long time. I started with lupus symptoms when I was 17 I am now 53. I also went to see a private alternative practitioner after being fobbed off and told by my Drs for years I was depressed and I was fine who told me I needed to a CFS specialist. Only when I went back and told them I had paid privately and informed them the I had M. E (CFS) that I was sent to a specialist they then said I was depressed and nothing more I came home went back home and had to get back on that phone and insist I have a second opinion I then got the head consultant who said I was quite severe and was diagnosed with M.E. Years later the alternative practitioner said I had developed fibromyalgia after a lady at college told me I was just like her. I went back to the Drs and it took 2 years of being told it was just the CFS that I had to insist as I got more and more unwell that I saw another specialist I was then referred to a neurologist who told me I was quite unwell and yes I had fibromyalgia. This has happened so many times I now don’t trust my Drs or specialists and it’s only by being on this site that’s kept me sane. Thank you Paul and everyone on here. 😀

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Thanks so much for sharing your story, so sorry to hear how difficult it's been

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Over seven years prior to diagnosis, I saw all four GPs with various manifestations - some visible - but these were written off as medically unexplained symptoms latterly: 'multiple symptoms, multiple systems, multiple times' is the diagnostic criteria for MUS in very recent GP learning material*

Then I saw a new GP, and despite positive ANA/dsDNA, he was convinced my problem was 'health anxiety' for four years....because, as he said, he knows nothing about lupus.

My worst fear about the legacy of inaccurate records came true when I saw a locum last time: I had wild insomnia but she wrote it off as anxiety, as per my notes, which was dangerous, because I realised after I stopped it to be a side effect of HCQ - one I'd had before, alongside palpitations, all-over rash, swollen lips

As one writer says: 'there seems to have been a remarkable proliferation of articles, and medical CPD events, around the issues of managing patients with medically unexplained symptoms.'..............how many of these are people with undiagnosed auto-immune disease ?

HUGE THANKS for this research - it's very much needed xxx

*https://bmcfampract.biomedcentral.com/articles/10.1186/s12875-017-0592-6

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Thanks very much eekt, very interesting to hear that about the definition of medically unexplained symptoms in some articles being 'multiple symptoms, multiple systems, multiple times' when that is also very true of CTDs

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Oh eekt, I couldn't agree more. I worry constantly about the 'inaccuracies' in my medical notes and the implications of that for future referrals. There's no opportunity to challenge those inaccuracies which assumes that you can access the records at all!

The interaction between patient and doctor/health professional is an unhealthy (no pun intended!) imbalanced power relationship. Mostly, I'm reluctant to say much in case it is misinterpreted as health anxiety/ depression/ just complaining. Yes, the current anti-d prescriptions suggest that but I didn't want to take them in the first place and, on many occasions, I've been told 'my world will end' (I paraphrase) if I ask to come off them. Sorry, I've gone off on one!

Whose health is it anyway?

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I received a letter from rheumatologist last week telling me my mri of legs was normal. This week I got a letter from dermatologist saying I have swelling and tendinitis in my legs! What one is the correct results? I had leg issues since jan 2018, but I’ve no idea how I would get tendinitis?

I had Hospital today and completely fell apart, just had enough of it all. During my meltdown I felt the need to tell him I’m taking antidepressants before the usual red flags for him come out in all there glory.

I’m just stuck in an utter whirlwind of confusion x

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Oh Lisalou, very much hoping you can make some progress...keep posting, we're all backing you, you're not alone! xxx

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In my physical journey, never have I been more glad to have been bipolar most of my life and been seen regularly by a psychiatrist, who prescribes a medication GPs are not allowed to. The irony of that is a bit bizarre.

It’s meant that I can look consultants straight in the face and say my crazy is well controlled, which forces them to think harder. Mind you, my psychiatrist is the one to throw his hands up in despair because he feels the rest of my body consultants are not doing enough.

To be honest, that means I’ve only been slightly dismissed once, being told by a rheumy my low VitD levels could be the answer. I wasn’t discharged so I just thought bad words in my head.

What annoys me most is not being treated like an intelligent human being. I’ve just got a copy of the most recent rheumy letter to my GP ( not copied to me, of course) It runs to three pages and is full of information nobody thought fit to communicate with me. I’m not the delicate little flower they seem to think I am.

Compared to others, I’ve had a far easier time because they haven’t been able to “all in the head” me.

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Yep. I so so wish they would be more open about whats going on. They think I'm going to crumple into a little withering thing if they actually tell me - so I spend a lot of time wondering just how unwell am I ? - or are they even doing there job ?

It's so patronizing. They have no idea of the strength you need to get through this illness in the first place. They could eliminate so much trauma and uncertainty if they could just be open. One of my fears is being in a potentially life threatening situation and just not being told about it. Feel like I'm in this situation right now actually. All hushed and cautious when I ask a question about the state of my brain. I have no idea what my future holds.

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I do hope things get better. With me, it’s the competence I worry about unless I see evidence, much as I may not like the evidence.

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Ditto on that concern also.

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Ooh thanks Lupiknits, you have just given me hope for my rhematology appointment in May. I have depression and anxiety (and getting better slowly) but you seem to make your mental health issues into a positive where I just usually act pathetically (being under mental health services has seriously knocked my confidence to say the least), and so I suppose the health professionals do just see this weak, fragile person, which I am so not normally. So I'm planning to walk in to this appointment head held high, and probably the first thing I will say will be to inform him that I am so much better mentally and I am here to try and make my physical health better and happy to work with him to try and make my life better and get back to work.

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Go for it! I’ve survived mental health services many a time and it’s my latest psychiatrist who takes a huge interest to get me over a lot of it. Community Psychiatric Nurses have been some of the worst.

With the physical chaps, head high, look ‘em in the eye and tell them all that’s well controlled.

You may find that makes them try harder!

As to the recent letter it seems I was too fragile to see, it actually says “This pleasant lady looks extremely unwell”. When will they ever understand that’s a score in our world? 😂😂

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Totally agreeing about CPN's. Whenever I mentioned my physical health my exCPN just talked to me like a small child and said that it was all psychosomatic. I was in such a bad place I believed everything she said. The power imbalance in mental health services is profound but they insist that "it's a partnership", it never is! I have been slowly getting better since I self discharged.

So glad you have a good psych doc, I've been lucky and have only met kind psychiatrists.

Thank you I will re read these posts before I go to my appointment, and how terribly sad they all are but shows that we are all strong and persistant and we need to be eh ;-)

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True, very very true. In the psychiatric world the power is in their hands: they have the legal right to detain you involuntarily. Swine 😠

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It's been a while since I've seen 'pleasant' in my letters. 😁

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They don’t mean it 😂

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Thanks Lupiknits, so valuable to get your perspective. Several people have said it's their psychiatrist who has ensured they get the right treatment for the lupus or have been sent to psychiatrists or psychologists because the Dr initially thought the symptoms were psychosomatic but the psychiatrist quickly ruled that out.

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In a fudging - hinting - indirect kind of kind of way. This has happened to me twice.

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Disbelief from clinicians has been a part of my health narrative for nearly 30 years. I even experienced one clinician simply pretending that he hadn't heard me when I plucked up the courage to tell him that I was experiencing flashbacks and nightmares as a result of physical and sexual abuse many years earlier. I had already been disempowered by the abusers and here he was, doing exactly the same thing. I kept my PTSD to myself after that and found a counsellor privately 20 years later who helped me to live normally again.

I rarely mention to any clinician now how my mental health is impacted by my physical health as any symptom is written off a as psychosomatic.

I was nearly killed by an infected gallbladder as another clinician was convinced that I was too young to have any health issues despite the fact that I was in agony in visits to her over several months. It wasn't until I called out an out of hours gp who administered heavy painkillers and suggested that I saw a different GP to organise a referral. New GP took one look at my yellow, sweaty, emaciated body and sent me straight into hospital for an emergency op.

In the case of my Lupus diagnosis, I almost ended up in a pain clinic rather than rheumatology as the GP that I saw initially attributed all of my symptoms to the chronic back pain that I also experience. I had to be strong and insist on blood tests. A physio that he sent me to (again) actually spotted that something else was very wrong and pushed for my urgent referral to a specialist.

Far too often the relationships we have with clinicians are based on a system that has a foundation on an imbalance of power and control. I have noticed that the word 'gaslighting' has come up so often and it is terrible that a technique used by abusers within a relationship based on coercive control is being used in relation to the interactions we have with our health professionals. Although I am a reasonably confident woman, I am often infantiized by clinicians. I lost years to various illnesses because it was "all in my head". And yes, I was told at one point to go away and have a baby. It beggars belief.

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I was helped enormously by a psychiatrist whom my GP referred me to out of area ( because the previous one told me he could “cure” me if I went private: he was struck off eventually) . The out of area shrink saw me weekly for a couple of years, which strengthened me enough to go to the police about the abuse which had taken place about 30 yrs before. I think the police were the greatest help: they went after him like a rat up a drainpipe.

Until then, the abuse was something I “imagined” or something “to just forget”. Things have come a long way since then, but I still get PTSD. If I have anything intimate that has to be done I write a little note and ask them to read it first because I can’t say it out loud without crumpling up. The note works.

Sorry everyone, getting a bit off track but this is another discussion I feel strongly about.

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That first step off track got you a result in the first place so please continue ❤

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❤️

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Please don't apologise for going off track in these discussions. That's often how we can find out more in depth about how people feel and learn from each other to raise awareness to help others in the future.

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This is exactly it flap7. I work with perpetrators of domestic abuse so I'm familiar, and the power imbalances when someone puts on a white coat are scary. I've seen people's comments about gaslighting before and I definitely feel it. The number of times I have left appointments completely crushed, but unable to explain what it is that has happened. Because it's not always the words. But saying "it's not what he said, it's how he said it" results in eye rolling and sideways glances. Sometimes if that power imbalance is well bedded in, they don't even need to say anything at all. Their silences are filled with meaning. Especially to those of us who are all too familiar with how that relationship works.

The doctor sits in a room with the power to make our lives better or worse. And we need to get through encounters without putting a foot wrong to protect ourselves. It's no wonder so many of us are crippled with anxiety

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Do you worry about putting a foot wrong with the Drs bubble89? How does it change your behaviour with them?

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Definitely, I worry about it in the run up to every appointment. To manage my anxieties I plan everything I'm going to say. sometimes I take in notes to help me make sure I remember everything I want to say, as I find I'm easily talked over once in there and it makes me clam up.

I also tend to focus on what isn't highest priority, and I don't ask about anything else so there's no distraction. Whilst it sometimes helps get a solution to what's bothering me it often means I manage a lot of my symptoms until they're higher on my priority list. For example, last year I started thyroxine for Hashimotos. This has been gradually increased, but I don't feel my dose is sufficient. However, my levels are better than they were, and I want to focus on the progress were making on the lupus side of things, so I've 'picked my battles' so to speak. I'm hoping to revisit my thyroxine disease post Rhumatology.

I also now request copies of all my blood work, which I started doing because I never felt I was being told the full picture. Which as it turned out I wasn't 😆. This is a double edged sword though, as the secretary I deal with seems to have an opinion about this and each request gets more difficult. She's recently started saying she won't give me copies unless the gp signs them, and often questions why I need them. Which feeds back into the anxiety hypochondria thing. It's an unhelpful cycle. But having copies has let me feel like I have some element of control in what's happening, so I won't be put off!

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That’s such a good explanation. Thanks

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So sorry to hear this. Thank you for sharing your difficult diagnostic journey

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Yes: for 40 years i was told i was a hypochondriac by my own family, my inlaws, my friends & my colleagues. Meanwhile the medical fraternity was blaming all my multisystem emergencies, persistent infections & progressive debilitation on my early onset spine conditions. From childhood my mother taught me to lifestyle manage a go go...so i concentrated on getting the best complementary therapy help i could afford, which helped, but the deterioration & emergencies just increased

Over the decades I became increasingly physically housebound + alienated, depressed and bewildered....i knew i wasn’t inventing all the chronic multi-system stuff the NHS was helping me with at various clinics from neurology to dermatology to ENT to gastro to ortho surgery to gynaecology....and i couldn’t see how all that was caused by my spine stuff.

Finally my depression got so bad i felt too near the edge to keep going...so i sought counselling privately from a wonderful psychosynthesis therapist. We worked together for 15 years until FINALLY my long time Pain Consultant suspected an underlying immune disorder and told my GP to refer me to rheumatology for investigations in 2010

But by then i was so exhausted by 40+ years of all that suffering that i had lost all hope. I was just putting 1 foot in front of the other trying not to give up altogether. Well, Surprise Surprise: i saw a brilliant NHS lupus expert rheumatologist who promptly figured out i had v early onset lupus and took me into care....AND, as the months passed, I immediately responded pos to the lupus med she prescribed at our first appt...AND THEN my mother revealed i’d been diagnosed with lupus as a toddler in my home country in the early 1950s...

My therapist & i CELEBRATED this AMAZING revelation, my rheumy confirmed it made sense, i discovered the Lupus UK community...since then my life has improved enormously...and my feeling is that the old friends + family & co + the members of the health fraternity who STILL think i have always been & still am a hypochondriac can all go JUMP IN A LAKE.

sending a BIG THANK YOU to EVERYONE HERE & IN THE LUPUS UK COMMUNITY AT LARGE...+ to all the health system & complementary therapy practitioners who support & encourage me now 🍀❤️🍀❤️ Coco

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This is why we must never give up and keep searching as long as we are able to. You are living proof of that. But so horrible for you too. xx

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SO TRUE lou...and this is where the solidarity & info sharing here are INVALUABLE....and i do wonder how much sooner my case could’ve been figured out if the internet had been as available as it is now....

Yes, horrible for me, and no fun at at for anyone who really cared about me. I was very lucky to have an extremely supportive, tolerant long term boss who let me work from home back when there weren’t so many doing this

XOXOXO

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We share much in common I too was very lucky to work with a fantastic boss who helped me cope and altered my shift patterns. In fact there were some people I worked with who could see i was struggling a lot with my health and were so supportive more than some of my familiy . I guess it was a mix of both but it did really highlight as you say those that really cared. Re the internet it is so valuable and when we all share our experiences it really goes to my heart the struggles, long road to diagnosis, etc. Support is key in all of this. Take care. xx

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👍👍👍👍💐🍀❤️

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Thanks very much for sharing your story Coco. Do you think it is more damaging to those of you who this disbelief happens to as children?

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I wonder how to generalised about this. I’ve been puzzling over this question all my life...even more so since therapy began to gradually help me understand my background & reality “better”... and my feeling is that each case is unique due to individual nature/nurture characteristics. But i do suspect that those of us nurtured in relatively more stable, loving settings perhaps may tend to weather all this with a bit more resilience & somewhat less “damage”

Eg. for my first 6-7 years after that official infancy lupus diagnosis, i’m told i was an outgoing, confident, cheerful young thing, despite what i assume was relatively mild relapsing & remitting systemic lupus + antibody deficiency disease.

But my family was deeply dysfunctional (maternal familial bipolar + paternal alcoholism & depression) and i was molested at 7 by my father when he thought i was asleep.

Because everyone including me adored him, i felt i had to keep the molestation totally secret (he was a deeply troubled but lovely man & relatively more rational + reliable than my deeply troubled totally erratic mother)...of course back then abuse etc was hush hush like cancer, so, basically, i was doomed to a lonely road with this molestation secret blighting life - It was only a “once off”, but, even so, it shattered me physically & emotionally...giving me early onset PTSD (diagnosed by our local university psych dept when i was 13...along with the lupus, this was another diagnosis kept secret from me).

Anyway, those closest to me when i was growing up tell me that at 7 i changed over night into a withdrawn, insecure, depressed kid. Which puzzled them.

As the years passed, i learned to put a brave, cheery face on life, be self reliant & independent, keep calm, carry on etc, but i’d lost all ability to “trust” anyone even a little bit, including medics...and my own instincts. And i felt extremely sad inside all the time. In many ways, i think i was very like the abused rescue dogs my husband & i have known

So, like others here whose lives have involved stuff like mine, my reaction to medics has always been & still is coloured by my genes as much as my dysfunction family life + the old fashioned repressive society around me (and that includes the paternalistic health establishment).

And 65 years of living with birth defects + onslaught of relentless progressive multisystem debilitation due to 5 months of daily inutero exposure to the notorious endocrine disrupting artificial oestrogen diethylstilbestrol + to inherited Hypermobile Ehlers Danlos Syndrome + to early onset lupus + antibody deficiency disease hasn’t made life easier....but, hey, as expert medics like to remind me: science is only JUST BEGINNING to understand my 3 primary conditions & the fuller implications of DES exposure, so...give the medical fraternity a break!

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So sorry you've had such a traumatic time Coco

You are definitely helping improving understanding of your rare conditions, amongst your drs and with other patients.

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Thanks mel: means a lot. inspired by you & everyone here, i try to do my best ✊🤞✌️💐🥰

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I agree stress when young will impact the undiagnosed poorly child. The smiling , brave, dont let them see your upset child, kept it all in. I often wonder if my AI would have manifested later in life if not had such unstable early years. Big hug to you Coco. xx

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Thanks dear lou. In my 8 years here i’ve met others like us. It’s wonderful to feel so much less alone. XOXO

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Yes it really does help. xx

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In my mid 20's a GP dismissed my episodes of extreme fatigue as "depression". I just stopped seeing that GP, but it did then make me more reluctant to discuss or raise fatigue and exhaustion symptoms with other GP's and drs later on in my life. Possibly leading to years where I "soldiered on" and didn't admit my chronic fatigue.

Fortunately my new GP took me very seriously once in my mid 30's when I started reporting the exhaustion. The fatigue just because "never ending", and even time off work, resting, recouperating from exhaustion bouts etc did not give any improvement, so I did get relatively quick diagnosis once I started "admitting I had abnormal fatigue" once again.

Whilst awaiting diagnosis the "limitations" of fatigue and pain, worry about "what was wrong", etc etc, did cause genuine "mild depression", which I told my drs about.

Unfortunately shortly post diagnosis I then developed very bad hypomania ( now thought to be one of my NPSLE symptoms). The previous depression being on my medical record , plus a couple of future depression episodes linked to coping with diagnosis, and to losing my career due to the SLE, resulted in mental health professionals concentration on my mental health "diagnosis", as things like "bipolar disorder", "non affective disorder". Lupus and mental health / NPSLE symptoms were not acknowledged for many years. This did make my "journey" involving mental health services, and adequate mental health treatment much more "difficult" than it needed to be.

Plus I almost ended up wishing I'd never mentioned the depression, because to this day whether I'm depressed as in 'medical depression', or sleeping not because of depression but because fatigued due to Lupus / due to non resorititve sleep, still gets confused and "mixed up" ( for some reason worse so by the psychiatric consultants who I rarely have to see these days thankfully)

It is obviously a fine line that drs have to walk, as mental health and lupus can be very interlinked, and it must be terrible for anyone told "it's all in your head".

I would encourage that people do discuss mental health as well as physical with their drs. Mental health is just as important as physical health

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Thanks very much for sharing this fabwheelie.

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My god.

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Indeed

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I suffer from flat line anxiety the day before and depending on how it went - several days after an appointment. This is due to about 18 years worth of delays in treatment. Absolutely no faith in a helpfull Doctor response, no inability to trust them. I tend to sit there trying not to glare at them with sheer hatred because Im just so used to being abused by these people and whenever I gut my medical record I feel like I'm actually surrounded by a mass of shallow minded schoolyard bullies and petty gossips - not people with God knows how many years of university and in a position of profound responsibility. (Bit rambley - just back from seeing a Psychiatrist- who was surprisingly lovely - but ultimately I didn't have to see - due to - as I discussed with him - being misdirected into the psychiatric system for so many years ?

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Wow. No words. I hope they read all of this.

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I don't deny having psychological problems - I've been DSMed so many times on so many branches of that manuals tree - that a psychologist- after me telling her about all the labels - quite seriously thought I had dissociative identity disorder ( multiple personality) . I said no....🙃 there' s another reason for all the labels. 😖

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No words. Just no words.

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Too sad - something needs to change and soon. Hopefully this research will help.

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What made the psychiatrist lovely Freckle?

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I was never told it was in my head but my gp dismissed the facts when I told her I wasn't feeling well, left me feeling upset and frustrated.

Its some years since I heard myself saying my hair was falling out and she said "oh that's natural"...not for me its not. She offered to send me off for a scalp/hair test but it was done in such an off hand way as if I was making a big fuss about nothing, I declined. Does Lupus show up in hair follicle tests???

Terrible night sweats, tests were done for hormonal probs and nothing showed up so that was that, nothing more was done. Assumptions of RA proved wrong when a locum sent me very quickly for blood tests after months and months of trying to make sense of why I was unwell. A positive for mild SLE came back by which time the damage was done. My hair is still thin on top and I have to take a gastric tablet for the rest of my life.

My gp was very dismissive about the whole thing. I was even given diclofenac for undiagnosed RA and was told it would help with the sciatic pain I was suffering as well. It didn't help with anything and the drug gave me an ulcer, I was hospitalised as a result.

All I feel when I think about these events is anger and wishing I'd reported the practice but I didn't. I'm now on the right drug thanks to the locum who later became a partner in the "business"....thats the word the 3 original gps used to describe their practice. My mum had warned me when I registered to find another one, she didn't like them at all but location was vital for me with 2 young children and a single mum....to some extent I've blamed myself. Its made me wary about any health professional I'm seeing, the trust is gone..

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It is a business unfortunately. The majority of GPs are contracted to the NHS as independent businesses. Jointly and severally liable though, so, in theory, if one is dodgy, they are all in trouble.

My stepmother’s practice was closed down virtually overnight when it was discovered they were employing an osteopath as a General Practioner during a surprise inspection.

That’s an outlier but it does make you wonder.

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It really annoys me that gp practices see themselves as a business as it did my mother. I'd like to think its still a vocational job for some, that's about caring and making sure people are well.

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Much as I complain about some GPs, in the medical career world they are looked down upon as “consultants who fell off the ladder” which makes me have some sympathy. A good GP needs to know enough about most things, to help, and to refer when they don’t know enough. They are the gatekeepers.

As to vocation, I think many at least start off that way, but they all need to pay the mortgage, put food on the table, blah, blah.

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So sorry you've had such a difficult time. When you say you feel wary and the trust has gone, does that change your behaviour with drs (whether you report all your symptoms, trust their opinions, take medications etc)?

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Not really Melanie. I don't see my gps much anyway. For the rest of the medical profession I'm as I've always been. If anything I'm resigned to it all and just want the app over so I can go home. I've never been one to list and go into detail about meds and symptoms etc, it was the way I was brought up really. I don't want to feel like I'm moaning or wasting their time.

I've tended to say I'm ok when asked how I am but as I've gotten older (I'm 72) I've been more open, especially now as OA has become more painful. The SLE is under control and well managed these days so not much to say about that when I go. I'm being moved to a connective tissue clinic starting next month with a relatively new doctor, he asked if I'd like to go. In all honesty I'd no idea whether I wanted to go or not...lol...but I said ok. No details as to why he asked as I know nothing much about CT. I'm happier if they tell me what I need based on tests, that's the kind of health service I grew up with.

My son goes with me these days, I'm very slightly deaf so its good to have a bit of support from him especially as he has his own problems. Having him with me gives me that bit more confidence to speak up after years of dealing with stuff quietly on my own.

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Thanks for sharing this Chrisj, I'm glad you have a supportive son at appointments.

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Why can't they just do two simple things. Believe what we say and do their job ?

(and ooooowh yeah. They're a business. I live in an isolated rural town ( Australia ) and when a second practice opened up after years of just one - I jumped to the new practice - only to eventually find the same - I can egnore you now attitude - once the practice successfully established itself - quite literally the day after they moved into shiny new permanent building.

Ironically both practices took so much trouble to do so many underhanded things to eachother that I ended up being the centre of attention for a few nasty weeks after I went back to the old practice.

It interfered with every level of care, my medications - patholgy, procedure reports, and if they did manage to share - they would dismiss each others findings ?!!??!? - just like they dismissed me.

Lots of other tricks - like the original practice telling ex patients that the local hospital wouldn't treat them - partly true - the new practice had to import their own general surgeon and send people driving for others specialists for a while.

I really understood my place in the medical system after that.

I wish I had the $ to move to a city where I assume ? this stuff doesn't happen.

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Sorry, scrub my last reply. I don’t know about Australia

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I can barely take it all in myself and I live here. 🙂 - one informal and one formal complaint. Nobody seems particularly liable here. ? It's all a bit inexplicable.

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Hi. I was diagnosed 2 years ago after 7 years of strange symptoms and feeling unwell..backwards and forwards to the doctor and A and E. Treated with antidepressants and became very disillusioned with medical system and just self managed my confusing symptoms. I had a massive pulmonary embolism in 2015 and was told I was having a panic attack by the doctor in A and E. I knew this was not the case and was insistent that he gave me a d dimer test and so pleased he did because his approach completely changed when he got the results. Although lupus and APS is not a great diagnosis at least I finally felt that I wasn't going mad!

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Thanks for sharing your story. When you say you became disillusioned and self-managed, did you not seek help for your symptoms in that time?

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Hi. .I found it really difficult to keep going back to gp and hospital services when I was not believed. I felt that the gp was dismissive and said I had depression. This was the only treatent I received for a long time though I knew there was something more. I had lots of symptoms but gp put everything down to depression and anxiety....but the blood clots couldn't be explained that way which is what led to my diagnosis. So I did keep going back but not much was done and I was made to feel like a hypochondriac. The gp did keep saying you are in that group of worried well people!

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Hi. I did not actually have those terms used but the implication was there at times eg. We like to call it "TATT...tired all the time" It was also difficult as I am a health care professional and was concerned I would be labelled functional so went private. I work with people with functional disorder. .a difficult and very.misunderstood condition in its own right ...and was asked when I suggested lupus " so how many patients have u worked with with lupus?" And I felt this may have been to ascertain if I was "taking on" the symptoms some how. I think the dismissive attitude of the GP was the worst until the blood test results and rheumatologit letter confirmed autoimmune disease and I still feel some healthcare colleagues I work with think I am making some of it up as I choose not to adopt "illness type behaviour" even when I am having a bad day although i have now been accepted for early ill health retirement and so they appear more concerned now I have to say it was much easier when I was diagnosed with cancer!! ..no you couldn't "see" that either but people were much more accepting and supportiveand questioned it less. Hope that helps

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THANKS flueby: you’re helping me A LOT to understand how the way i “look/present” can be misinterpreted by lupus-ignorant skeptical healthcare practitioners, eg In fracture clinic last year a nurse told me (apropos nothing) as she splinted my hand: i have a friend with lupus..she is fine...right now she is climbing in the Himalayas!

Thank goodness i do encounter clued-up medics, eg early this year, at the end of our first appt, an eminent neurosurgeon shook my hand and said: lupus is a terrible illness...it affects every part of the body - and this was after I’d only briefly mentioned lupus in passing

I agree about cancer: once my malignancy finally was diagnosed i got plenty of acceptance & support (and this cancer was diagnosed 10 years before my infant onset lupus was recognised. it was a rare malignant tumour of the connective tissue, for 14 years it had been misdiagnosed as osteoarthritis)

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Very helpful, thanks Flueby. Your professional experience combined with your patient experience is really helping clarify some key points

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Why were you more concerned you'd be considered functional in the public system ? It's where I picked up the label.

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Only because of the somewhat weird phenomenon that healthcare professionals appear on the 1 hand to be very helpful and supportive of unwell colleagues or in fact the complete opposite eg. Can think u r "mimicking " conditions. I would not be adverse to a diagnosis of functional disorder if this were the case as I work with and fully support those with this very misunderstood psychological based condition in its own right but it is often used to suggest someone is somehow inventing symptoms and is somewhat of a bad "in house" joke when a healthcare worker demonstrates "illness behaviour" " eg walking with a limp. .taking tablets...rubbing a sore back..using a cushion for support...hence my efforts to conceal my pain and discomfort and the need like everyone else to have clarification of what my test results actually show and a clear diagnosis. Hope that explains my thoughts better?

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And. ps. I thought things were complicated for patients. Even more so for health care workers. I'm sorry it's been so tricky for you.

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Lots of lupus/CTD patients are reporting that they get told their symptoms are functional rather than caused by the organic disease and feel strongly these are misdiagnosis. Having worked with genuine functional disorder patients, do you have any thoughts on this please?

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Hi. I work with patients with neurological presentations rather than rheumatoilogical but it feels like many similarities exist. Many conditions in both specialties are difficult to diagnose as symptoms can be similarl therefore the approach tends to be "differential diagnosis" eg disprove key diagnosis in order to narrow down the field. At times no clear diagnosis can be verified as there is not one specific diagnostic test and so often the waiting game is applied eg wait for further symptoms. During this time patients are often offered potential diagnoses which may later be disproven and if there is nothing conclusive that can be found organically eg in a scan or from blood tests then the "functional disorder" diagnosis or umbrella term may be suggested. It is also used from forming an opinion from someone's total medical and social history eg medical and psycho social history. I am fortunate that some of the younger neurologists I work with accept this as a significant neurological condition in its own right but there r some clinicians who I feel use the term to readily when patients demonstrate certain behaviours etc. There r considered a spectrum of functional disorders eg from those who have conversion disorders eg physical manifestation of a psychological based issue to those trying to claim compensation. It is a difficult condition to both explain and accept and from my own personal experience I can see the same issues across both specialisms. Not sure I have answered your question but hope that helps

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You were clear all the way. Thankyou for replying. I'm actually still a little flummoxed by the diagnosis - even though I now see it was incorrect and becoming dodgier by the second !

The neurologist who diagnosed it seemed very genuine and concerned and it was described to me in much the same way as a mystery neurological illness that they don't know enough -about but people with long term trauma are susceptible.

Public hospitals here ( Australia ) are quite prestigious due to the research Doctors get to do. I was wondering wether initially I might have been getting 'diagnosed' in that direction for a not so strait forward reason. The same hospital department used me as a research subject when I was 15 years old - when very physically unwell, with SLE, traumatized and on 60mg prednisolone. ( this dose was high enough to make me mentally unwell ) back then, they didn't take that into consideration.

Not becoming more fond of them at this stage. I'd had a diagnosis of SLE for decades - before they diagnosed the functional stuff.

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I'm not suprised u feel like that. The important thing I think is that we know our bodies and instinctively when we r genuinely unwell...the best people to listen to and gain support from our loved ones and friends who also know us well and others who r in a similar situation and who r experiencing the same journey. The opinions of others r not actually that important. Stay strong and b kind to yourself x

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Thanks for that VERY good advice. I do tend to dwell too much on what others think of me and a lot of people tell me I need to ease up on myself. I think I better start listening to the wise advice from you and others.

It's amazing but what you said is so logical and correct - yet I actually have to think very hard not to dismiss my own perceptions of what my body is doing. Its actually a constant thought battle and sometimes I loose sight of that battle and just let the symptoms progress. Invalidation of me and my symptoms have been going on for so long that this has actually happened to my thinking ?!?

Its like I have two competing thoughts at once. The rational - YES - Im sick. - and then the thoughts where where I self dismiss and delude myself with empathetic excuses for bad grey area Dr behaviour.

It's a mind warp.

Again - Thankyou ! You got me thinking.

X

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Yep. I was very recently diagnosed with Sarcoidosis with nodules in the liver and lungs. I knew something was up for years but tests, including autoimmune ones, often came back negative. They must have put notes in my medical charts because some of the doctors I went to see regarding my symptoms almost seemed dismissive as soon as I walked in the door. Even my husband was looking at me like I was just trying to get attention. It hurt. But now I am on prednisone, MTX and managing the symptoms although the nodules themselves still seem to be progressing in the lungs. Getting a biopsy soon.

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Thanks for telling your story. Very much hope things improve soon.

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Thank you. It's a scary time as I adapt to the meds. Still adjusting. I find I have a very hard time the day following the MTX dose, not the day of. Not sure why. Hubby has talked to his bosses so he can be with me on that day, watch for the kids to come off the bus, etc, etc., so he has since become very supportive. My hope is that the pulmonary nodes stop spreading making this all worth it ...

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I’m still in the process of a firm diagnosis as rheumatology keep changing their minds so feel as I’ve still got a way to go, especially as I never see the same doctor resulting in no continuity which makes me nervous each time I go as you never know how they’ll take what you say.

When this all started 2 years ago my original GP was very dismissive and after over 3 months of pericarditis he told me ‘it is what it is, time to get on with it’.

During that time I had episodes of such bad chest pain, breathlessness and palpitations that on one occasion had to call an ambulance - when they took me to a&e they told the department i was suffering from panic attacks - this had not been mentioned by any medic before or after but affected how I was treated in A&E. I felt as if I was a fraud and it was in my head. Thank goodness for my fabulous new GP who along with cardiologist have re-ignited my confidence in the medics. However there’s still that defensive insecurity when I see a new doctor that they’ll judge me, tell me it’s in my head or dismiss me.

When you’re poorly and vulnerable damaging comments run deep.

Thank goodness for supportive family, lupus uk and this fabulous forum.

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Thanks very much for sharing this. When you say you feel a defensive insecurity that you'll be told it's in your head or dismissed, does that change your behaviour with new doctors (for example whether you tell them all your symptoms, trust them etc)?

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Hi Melanie

Yes it does, especially as I’ve found I've been mis-represented by the doctors in the rheumatology department many times. Having been seen by 4 different doctors in 4 appointments over 6 months I’m sure the information put on my notes is not what I’ve said as when they’ve quoted me I know it is definitely not what I’ve said. I don’t get a copy of my letters but I do wonder what they’re actually writing to my GP which then makes you wonder if the GP and other doctors think you’re making things up especially if it’s contrary to what you’ve told the GP.

For example I've been quoted as saying I’m coeliac - this is definitely not the case and I’ve never said that but I do have a gluten intolerance - as told by gastroenterologist and allergy clinic and that is what I would have said. So it does make me defensive yet also makes me try to be very clear in what I’m saying but at the end of the day you’re at their mercy to note down the information you’ve told them and hope that what they write is a true representation of the dialogue. If you are a different doctor reading the notes that contradict themselves then I guess that they might think it’s all in the patient’s head?

I don’t like to be portrayed as being dishonest yet sometimes that’s how it would come across when they don’t listen/note things down correctly.

In short to your question - yes it does make me nervous about trusting them.

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My experience has luckily been pretty good. My diagnosis stemed from being the care giver for my wife who has RA. I was starting to become symptomatic and we briefly discussed how i was doing during one of my wife’s appointments. This led to my making an appointment and being diagnosed following positive blood work for mixed connective tissue disease.

Following the diagnosis our GP has been very progressive in looking at me in a new fashion. He had been very helpful as a diagnostician prior to the MCTD and was helpful once the rheumatologist put things together. We moved to another city recently and found another GP who is great at looking at things in terms of our autoimmune conditions. He has referred us to excellent specialist and I think we have been getting great care.

I would strongly suggest that the greatest skill a GP should have is to be an excellent diagnostician. I was just fortunate to have the right resources in place.

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That sounds like you've had fantastic drs Krock1, thanks very much for sharing

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A GP told me I just needed a change of attitude and called me manipulative. He also said tears were a sign of my bad attitude. This was following a raised ANA and a letter from my neurologist asking for it to be repeated. From that point I vowed never to go to a GP again and just deal with what came my way, even if it meant I died of an illness. For years I have not questioned the symptoms that I felt were to do with my autoimmune condition but i did see another GP about other issues (which is a good thing as I developed severe depression and definitely needed medical help). This was until I realised my hands were now numb and were affecting my job. I now have had 3 raised ANA results and have been referred to a rheumatologist, as my current GP thinks I have lupus, but have also had to leave my career. I will not book an appointment with the original GP and lack faith in GPs in general, even though my current GP has listened to me. I would love to have it written in my notes that the original GP is not to treat me, even in an emergency situation. Would the story be different if he had acted? - I will never know.

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again.....my god. This is so shocking.

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Thanks very much for sharing this. Must have been a dreadful time, I'm very glad your new GP is listening and supportive and hope you find some answers soon

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Another very powerful thread. Reading through it, and knowing AI disorders affect women disproportionately, is that making a difference? There are many more female GPs and consultants now, but some of the “all in your head” dismissals smack very much of old school medical attitudes to women.

Just a thought.

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My autoimmune journey started when I was a child - but was only identified by doctors as autoimmune in about 2000 when I was diagnosed with Hashimoto’s - and even then I wasn’t aware that this was autoimmune until 2011 when I was misdiagnosed with RA.

I think my negative encounters with doctors started with one particularly obnoxious GP during my child bearing years. He asked me if I was back once more in his office for 3rd week in a row to “moan” about a terrible pain in my ear because I had “some kind of fear of cancer or something?” This turned out to be a large viral blister in the lining of my middle ear - which finally burst spectacularly. To the woman GP who binned my stool sample I’d been asked by a nurse to bring in and described me as “a time wasting hypochondriac” in 2016. To the female neurologist who expressed concern for my “heightened health awareness” in 2017.

But I’d already been told by my late mum that my severe eczema and alopecia aerate from childhood onwards were psychosomatic. So I grew up with the feeling of shame and embarrassment relating to my many health problems so tended to avoid visiting GPs. I didn’t really believe that I had any health issues that weren’t caused by anxiety, near obesity or laziness or just poor coordination (hyper mobile) - until the bilateral joint pain started in 2011.

My island GPs then assured me I was an autoimmuner through and through and in fact they seemed to have known this all along. My first rheumatologist - while never fully sure that I had RA - at least never doubted that I had autoimmunity at the heart of my many problems. I knew in myself that I didn’t have RA but at least I was taken seriously for the next five years following diagnosis.

Then I relocated and was no longer trusted or believed by any of the doctors I saw. Everything became uncertain. This coincided with a fairly traumatic relocation following a year of four week long hospital stays with Pneumonia, Pancreatitis and Sepsis - all initially misdiagnosed as lesser conditions. I felt horribly vulnerable.

Like Lupus Karen and several others here - neurologists were key to the ensuing medical PTSD resurfacing from a childhood of not being believed.

I’d like to be able to say that this is all water under the bridge now - but sadly it isn’t. I may now be rediagnosed with Sjögren’s but I still shiver when I see neurology or CTD appointment dates flagging up on my phone. I start to write lists, prepare myself for the likelihood that one day soon I’ll be discharged because there’s nothing more they can do for me.

As many here know, I was told late last year by my latest neurologist that I had Functional Neurological Disorder (FND) overlaying my Sjögren’s. I’ve at least developed enough confidence that I can express my indignation about this medical nonsense. When this FND diagnosis comes along there’s really nothing left to lose!

I still feel doubted. I’m still left untreated and I’m increasingly torn between giving into the medical gaslighting and allowing myself to believe it’s all just damage done, wear and tear or symptoms resulting from my hardware/ software issues. I’m pragmatic and acknowledge that not everything is treatable with drugs. But doctors like to justify the lack of pharmaceutical intervention by saying it’s functional. I so wish they would not opt for this kind of lazy doctoring. To be fair my rheumatologist and vascular doctor use “idiopathic” instead and are clear that I have small fibre neuropathy.

My chemical sensitivities are so severe that I am as scared of new medications now as I am of being told it’s all in my head. I mean if this sensory stuff is in my imagination then I must have such a very dark imagination!?

But if I was investigated for and diagnosed with EDS and/ or MCAS I would at least have the right names to apply to my multiple symptoms - to understand them better in order to cope better. Fear is always there in the uncertainty and the dread of not being believed. But it’s so much easier for doctors to call it FND rather than investigate for more complex rare biomedical or hereditary disorders.

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Hello Twitchy,

Sorry I misread you're post earlier. I'm in desperate need of sleep. Just heading for bed now.

I just read you're post with a clearer head and to be honest - you just pretty much summed up what's happened to me over a life time only you said it with much more eloquence than I can muster. Its like looking at a parallel universe that - before coming to this site I had no idea existed.

Thankyou so much for you're heartfelt post. Its helped me not to feel so alone.

If its any comfort - I'll repeat what I said earlier - I was diagnosed with functional neurological disorder with two diagnosis of exclusion. A full on - fully detectable form of SLE that was diagnosed when I was 15 - now 51. and also some very spottable neuro damage that was seen by the very neurologist that diagnosed FND.

There is something very wrong and possibly corrupt going on in neurology departments around the world it would seem. Then again - we tend to forget that Freud was a neuropsychologist and all of this seems to have a terrible retro feel. We seem to be repeating the mistakes of the 20th century in every aspect. The rise of extreme right/left politics etc. Bloody Nazi's walking around Christ sake.

I had a letter war with my neuro. He seems quite convinced of his ideas and feels compelled to 'educate' my GP and all others about. He's incredibly young and I shudder in horror at what are medical universities teaching these people now.

I posted some time ago about fibromyalgia getting in the way of treatment. It seems to me at least - that both are - at the core - essentially conversion disorders or at least can be misused that way.

I told this neurologist in one of three - no....its now about five letters that this concept left institutionalised psychiatric patients with untreated broken arms and legs - while they were being told it was childhood trauma - throughout the first three quarters of the 20th century. I demonstrated the potential problem I was facing with Lupus as he knew I was having difficulty accessing medical care due to Doctor bullying (and he actually tried very hard to help me with this) - he thought one letter from him would stop it.....and it did for a little while..... but he would not budge to get this monster off my medical record.

I wonder just how ingrained being invalidated as a child can create a moving target on our foreheads in adulthood. Something - ironically - he pointed out to me.

When I went to my third neuro in this department they wheeled out a poor young resident to try and convince me of its existence. She said a lot of patients are upset about this one - and - I took sympathy on the poor trembling 'young' girl because in my experience they get the - the barely graduated - somewhat bullied themselves Doctors to explain a mess - when things go awry. I pretended to go along with her - but in the process learnt a lot - (while getting a good long look at my scans) because she was also eagre to teach me and at that point I was interested in learning...... Things about how neurons get laid down in traumatic childhoods etc. all very complex - I'm complex - etc. It was an astonishing mix of fact and fiction mixed with the personal. It was just astonishing - and so reassuring when you believe you have life altering neuro problems...….

But I can see how they could actually be convinced its real. When I read articles on the thing - for a little while - I was convinced that I suffered from it. Its really a remarkable medical social construction. One of the most 'complex' I've ever seen.

I think some of them are well meaning - but its a concept. There's just absolutely no room dangerous concepts in medicine. Here - they don't seem to see how potentially disastrous it is for so many vulnerable people who are pre - abused and stuck in the public health system...….and from the very backgrounds that they seem to want to champion - "if only other patients had the intelligence to understand what were trying to explain here " was the residents opening line to my steep learning curve.

For me ? Its still seems more about them advancing their own career and research agendas ? and we get caught in their self interested career focus - and correspondence.

Its essentially so patronising, so dangerous, and it now feels so dark and so evil.

Its terrible that were getting invalidated now by an entire medical construct because we were invalidated as children - and worse still under the guise of helping us..…..?

Again - thankyou for posting this. I was feeling very alone and traumatised by this new diagnosis.

...... and I'd just managed to get fibro off my medical record too.....

xoxoxoxoxox

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No worries Freckle I’m in transit after a wedding anniversary trip to London so pretty much in crash and burn now having madly overdone things! But thought I’d respond to Paul’s request post because it’s a subject I also feel passionate about.

For your interest the FND thing began in Scotland - from a neurologist based at Edinburgh University - see fndhope.org/team/dr-jon-stone/ - not something Scotland can be remotely proud of and yes- very much the sorry legacy of Freud I agree. Of course even Freud finally debunked his conversion disorder theory so it is shameful that it’s being presented as a new concept now.

I’m actually using these ideas myself ironically - as a visual artist working under the heading of new surrealist. The Surrealist movement also took its lead from Freud’s theories about dreams and the subconscious and the irony of this is certainly not lost on me!!

But unlike you I have no prior diagnosis of psychological disorders nor childhood abuse for doctors to try and pin my so-called FND to so a little of this may possibly be due to acquired bad habits ie software defects in my case. I accept this once all other possibilities have been excluded to my own satisfaction - but not the label FND ever - just some Sjögren’s overlay....possibly! X

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Thanks so much for sharing this Freckle, you are definitely not alone. When you say you've got fibro off your medical records, do you feel diagnosis like fibro and FND are a problem on medical records?

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From 2013 to 2015 I wasn't able to get medical care 'anywhere' due to fibromyalgia being on my medical record. During this time I was I not only heading very quickly into renal failure, but the SLE was also attacking my peripheral nerves and digestive system. I come from an isolated rural town and I couldn't access care from local GPs who just plainly refused to act despite obvious symptoms. One GP two seconds after walking into her office made me stand up - pressed tender points in my back and told me 'I wasn't a real patient'. She then just walked out the door before I could actually tell her why I was there. I was told to leave the local emergency department because I was just suffering from anxiety. I was dying and I literally had nowhere to go.

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So sorry to hear this freckle, I so hope you find great (or at least adequate) care soon

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It is a problem because for many of us doctors home in straight to Fibro and can miss dangerous stuff. I have also had to fight to get this diagnosis off my records.

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Thanks twitchy, very well explained - thank you.

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You could be right. It could also be down to lack of time to listen too (does not excuse rudeness). It took my mum 45 years of pain and being very ill to be diagnosed with congenital chronic pancreatitis - being told she is jealous of her siblings, depressed etc until that point. Recently she was told there was nothing wrong with her heart and an ecg 2 years previous were fine and she was not getting another ecg or tests but now she has moved and registered elsewhere they have found she has a very stiff heart and it is now being investigated.

When my son was 7 he had repeated bad stomach pains and I was told children get stomach pain, he is too young for ibd etc. Eventually a GP said you are clearly worried so I will refer you. He then saw a specialist who kept saying it is constipation and I kept saying it is not normal to bleed that much but still nothing was done. Eventually I saw someone else as he was away and she said that is not normal and immediately referred him to Addenbrookes. Another very old school GP then expedited that referral because he said he believed me when I said we are up all night with him screaming in pain but fine all day and prescribed a particular medicine for when he was in pain and that night the pain was dealt with and we slept for the first time in months. After tests they found his colon was severely inflamed with backwash into the ileum. It took us 2 years to get the answers. He is now 16 and has an amazing gastro. 2 years ago I rang him to say he is losing weight and GP s say it is normal. He said he would see him that week and rushed through some tests and quickly found out he had PSC (incurable liver disease that often occurs alongside ulcerative colitis).

I do get sick of Dr's not believing you and having the attitude they know more and their opinion is superior. However, very occasionally you do meet one that listens, it is sad that it takes years of suffering before you meet these rare breeds.

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It's an interesting point Lupiknits and has been raised many times as a possible issue. It's something we tried to look at with this current research but we're very hindered (as are all lupus studies) by a lack of males to compare the gender experiences with. With men being in the minority with lupus, then less men than women join health forums anyway, then statistically a lower proportion of men complete online surveys - we have very few male opinions and diagnostic stories. The ones we have heard from or who have posted here have usually not had easier diagnostic journeys though, very similar stories of delays, psychosomatic misdiagnoses etc, possibly even more delayed because the Drs are even less likely to consider lupus in a male because of it's comparative rarity, some actually told they can't have lupus because they are male.

The only difference we have found between misdiagnoses in genders is that the males seem less likely to get their symptoms attributed to parenting or stage in life - the 'busy mum/parent', 'stressful teenagers' or old age. And obviously they don't get their symptoms blamed on hormones/ menopause etc!

We are trying to survey thousands of lupus patients in the next phase of the study and look specifically at these questions so if anyone here has any specific questions they would like including please do let us know. We want to include as many people's views and priorities as possible

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Thanks Melanie. It would be very hard to drill down to gender differences.

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I was lucky with my drs. They really tried to listen and help. But my therapist was stopping therapy to concentrate on her health and was referring her clients to colleagues. My first session with my new therapist was disaster. She had already judged me by my file and wouldn't listen to me. I don't know what my old therapist wrote but I don't think it was in my favor. The new lady said everything was all in my head and I just needed yoga. Lucky for me she is a master and can teach me. For 250.00 dollars an hour. No thanks crazy . Never went back and now scared to try again.

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Yep. Ive had some off putting - small minded & judgemental encounters with psychologists/psychiatrists. They're not always the nice caring people they present themselves as. I also think part of the problem is that they need to google Lupus before they see us. I asked a psychologist once what personality classification do - they -psychcologists fit into. Her response was a bit tougue in cheek but she said controlling and manipulative. There is some truth to this with some of them. Its weather they use this talent for good instead of evil that counts.

It's a bit of a task but it might be worth asking around for 'intelligence' on the good ones out there. They are there they're just hard to find and here ( in Australia) and the good ones have a huge waiting list.

For me - looking for them involves asking the very people that I dont don't want to discuss this stuff with...... Doctors.

Often if you ring and speak to a potential psychologist - it can be a little bit like a job interview for them. You can somewhat what gauge wether they're for you or not.

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Thanks for the support. I appreciate it. Funny thing is my first therapist was recommended by my Dr. He went to school with her. I really liked her and she was helping. But I wondered if she thought I was a whiner by the way the new therapist treated me. Also the styles were so different. The first did alot of recommended reading and self care and I was doing well. I love reading and self learning. The new therapist was all New age and auras. Not my comfort area. Why would they give me her. So now I question my first therapist. At the time I was seeing different specialists. My oldest child was also in hospital for suicidal tendencies. My husband was working 60 hr weeks and going to college full time. So it wasn't just about my pain and anxiety but family too. So you can see my confusion and reluctance to try again.

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I've seen a fair few psychologists over the years and usually its a hodgepodge of both the traumatic, ridiculous and profoundly helpful. I put up with a lot of the ridiculous because - you never know what you might learn. : )

I gleaned enough different information from all of them - good and bad - to be able to continue on with self help which is better for me right now too.

ps. The new age aura types are good at teaching medication - which has helped me though some very rough times. Helps with acceptance and letting go of realities I cant change. Helps with obtaining some objective distance from trauma. A good meditation can be very clarifying - good at un - scrambling the mind. It might not have been such a bad referral ? Just ignore the aura's and crystals.

It sounds like you have so much to contend with -

I really hope things get better for you Natcp.

x

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I have been going over this question for a few days now, and the reason being from just one poxy Doctor I actually still to this day think this is all in my head. If I could post the photo here of my skin rash , the same one I showed this doctor who responded with “I can’t see anything wrong” I think you’d start to see why I’m trapped in this world Of is this real!

I know it’s real to me, because I’m living inside a body that continues to let me down and it often feels like poison to me. How do you get across just how distressed you feel without the “depressed, mental” card flagging up???

Off to the hospital again today and I feel awful, my anxiety is through the roof because I fear they won’t see what I see or wants to try and understand how this feels to me!

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Good luck today lisalou...today i’m off to hosp too (pre neurosurgery admission assessment) feeling anxious: i really need this op but will my comorbidities etc deny it to me...i fear they won’t see how ready i am to cope with the aftermath be it pos or neg...what a life we lead ❤️🍀❤️🍀❤️

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It’s really no life, so many challenges. I reckon most of us are more qualified than these doctors!

Hope today goes well for you too. Positive mental attitude 😬😘xx

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Agreed! Yep: thanks to you guys, positive comes more naturally 💐🍀❤️

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Really hope it went well today Lisalou19

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Pretty amazing isn't it. Doctor's are our abusers yet we have to keep turning up to see them - and try to pretend not to be traumatised by them - so this doesn't distract them (or give them an excuse) not to do their job.

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Actually your right using the term “abusers”.

I said in a previous response it’s like being in an abusive relationship!

I cried all the way home from my appointment yesterday, because clearly this nice man didn’t remember me from my first appointment and was just reading through notes. I had a skin biopsy done or a strange mark on my skin that he paid interest in, it was a small scaly disc and I had a number of them on my body. Yesterday he’d forgot all about what they looked like and said I had injured my own skin by scratching 😳. You know I did t even have the strength to correct him or remind him , instead I left feeling angry in myself for not speaking up, but the damage is done for me with these people. They keep taking my reality away, to the point I’d rather just curl up and rot from the inside due to disease rather than have my mental stability pushed to its limits because they know best . It’s a sickening system to be stuck in

X

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It's like been stuck in hell.

xoxoxoxoxoxox

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🤬🤬🤬🤬🤬🤬🤬

So sorry Lisalou19. Know all too well about the after appointment tears...hope you’re beginning to feel a bit more like Lisalou...without the tears.

Sickening system...shockingly yes. And yes again!

Hugs from someone who's been there too xxx

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Had an appointment booked this morning for a phone consultation with rheumatologist nurse. I am seriously at the point where I convinced they are taught to just get rid of us.

I asked if she could get the rheumatologist to look at my mri again, she said no. I said I clearly have something going on with my legs, her response not our area . So I’ve just got to plod along and hope it all just disappears.... and I’m to continue the hydroQ even though it made my eyes pretty sore ! It’s like a bloody puppet show!!!

I’m glad I get these days where my strength is just to laugh . It’s better to laugh at their negligence than to sit and cry because no one wants to listen 🤨x

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Well what, for God's sake, is their area?

My contact with the rheumatology helpline (on the rare occasions I managed to get through) consisted of being told, 'oh...we don't do connective tissue disease...only RA!!?

Puppet show's a good anology. They're the punchers and we’re the judies!!

Being given two different results for an MRI is not good 🤷‍♀️🙄. Can't remember if you have a good GP or not but...could they pick up that old fashioned thing called a telephone and speak to a rheumatologist and get clarification, on your behalf?

And you really shouldn't have to do this but...if you're worried about the impact of the hydroxychloroquine on your eyes...an optician may be able to help with reassurance (or otherwise) and advise if you need to go back to see the rheumatologist...sooner rather than later. On several occasions my optician sent me straight to eye casualty...and they were brilliant (though that wasn't due to hydroxychloroquine so I'm not suggesting that this is what you need 😉).

Also, in my experience pharmacists have always been really good at advising about potential drug problems.

Laughing at their negligence...what a damning indictment...my eyes are too dry to do tears...so I guess I'll just have to join you 🤣🤣🤣🤣🤣🤣🤣 xx

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Yes! After 4 times being taken to emergency, I was diagnosed of Anxiety attack, Adult onset of Asthma, Heart Attack and then to a "Top" doctor who told me I was simply overweight and needed to run everyday; after a week of which I had the 5th attack where I was put in ICU for 4 days under oxygen, strict immobility and doses of heparin and warfarin. My Oxygen Saturation would reach upto 52. I still feel really angry about the negligence but grateful that no matter what, I reached the hospital right on time with Bilateral Pulmonary embolism.

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Sorry to hear this, must have been very distressing for you. Did the 'top' doctor ever find out about his misdiagnosis?

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Sort of. Back in the mid 90s I became very unwell, after years of on/off bouts of odd health issues. Initially I was told, by a very sympathetic GP, that I had unresolved anxiety issues and she gave me Valium. I took it but over the next couple of months I really wasn't convinced. The GP really resisted my protests and wouldn't listen to me; I think the key mistake I made was being honest about the level of my fatigue, which by now was almost totally disabling. The stand-off continued and I got ever iller. Eventually I saw another GP in the practice who agreed to refer me for a private opinion, with the resulting diagnosis being M.E. This was very grudgingly accepted by my GP practice but, in practice, I was still treated as though I had a primary mental heath issue. Again the level of reported fatigue just seemed to totally antagonise the doctors, plus the weird range of symptoms I was getting. I was by then more or less bed and house bound for 12 months but then had to move which meant I changed GP practice.

My new GP was really interested in M.E./my symptoms, didn't consider me to have primary psychological issues and tried to do all he could to help (some of which was working with stuff well outside the currently accepted boundaries of conventional medicine and help is what stopped me from committing suicide) but who also supported me as I became aware of the issue of differential diagnosis/es. Over the next couple of years we ruled out various other things - HIV, Hepatitis, various heart conditions, etc. We got stuck on two things really - Lyme disease, which is still notoriously to accurately test for, and Lupus; I really wondered about the latter in particular and had long had a leukopenia. However it turned out neither of us really realised the potential significance of this alongside my odd body rashes. This was a GP whose training was back in the late 70s (had we had access to the great websites that now exist we would have got to Lupus, plus my Hughes Syndrome, quite quickly I think).

Anyhow, it became harder to get an appointment with him (he was so popular, as you might imagine) and sometimes I had to see one of his colleagues. As soon as they realised that I considered myself to have a long-term chronic illness/es and any mental health issues as secondary to this, a thick steel wall went up between me and them. This was such an incredibly traumatic time that I don't want to recall here some of the things that were said to me. But, in a nutshell, I got no help with my increasing range of symptoms. I was still, if an appointment was available, seeing the great GP - who by know knew me well enough to express his feelings about the limitations of conventional medicine alone and his sadness/anger about the way I was being treated by his colleagues.

Eventually a life and death moment occurred for me - due we found out just a few years ago to an undiagnosed genetic condition. I survived - obviously! - and in the fairly immediate aftermath my now cardiologist took a real interest in all my symptoms, was appalled to hear the tale of years of dismissal and aggression from GPs, and got a rheumatologist involved. Result? I found out I have Lupus, Hughes Syndrome, and various other things. Eventually a very persistent geneticist also uncovered the genetic condition. It was also the wonderful rheumatologist I have to thank for me now knowing I have a form of orthostatic intolerance, too. My own thinking was that I would now experience a totally different response from GPs and we might have a happy collaborative relationship. Not so! I moved again and to a new practice. A couple of the GPs have been really understanding, and I am so grateful to them. The others however seem to treat me as a bit of an attention seeker and a woman with psychological issues. One makes no effort to hide what can only be termed her disgust as I enter the room and is very sharp indeed. Obviously I only see her in extremis. My primary symptoms - which severely limit my life and all activities - are, in order of frequency: fatigue, 'functional' gut issues, pain and cognitive difficulties. I think it is because the first two are not at all well understood that I get this response. If I mention pain or certain of the cognitive difficulties (during my life-saving op the blood supply to my brain was off for so long that the doctors thought I would be brain damaged. Well, my brain is certainly very different now, including very poor short-term memory.) there is sympathy.

I realise that I've rambled on and on. I hadn't realised how much I needed to tell my story. Thank you for the opportunity to do so.

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Thanks very much MrsMouse, you definitely haven't rambled on, it's very useful to hear these stories and brave to share such difficult ones.

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You are so very kind *hugs* I wish there was a more solid way to get a diagnosis for autoimmune disorders. The rarity and the lack of a standardized kind of test are what fuels a lot of this.

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Realise I wrote I became very ill in the mid 90s. I meant 2000s; 2004 to be exact.

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Mrs mouse - you havent rambled on. What you just described just bought me to tears and I'm not very prone to crying. What happened to you - and is still happening is just so awful and unfair. After everything you've been through - and you still endure barely concealed contempt from these B****eds. I know those looks and attitudes too well myself.

What have we ever done to them to deserve such treatment. Absolutely nothing.

ps. Lupus can effect the entire digestive system. Ive been put through the ringer with this one - If you want more information on my diagnostic journey with this - don't hesirate to ask.

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Thank you so much, Freckle1000. After I wrote my bit it struck me that some GPs are absolute masters of conveying a strong message just by body language and overall attitude, given how circumspect they have to be with their words nowadays. Perhaps some of them should give acting coaching in their spare time!

But you are totally right: what have we done to deserve this?? The dismissal and contempt seems to be particularly prevalent amongst GPs and some nurses, although surgeons also seem to have a hard time acknowledging the reality of certain conditions (I partly forgive them. They work on a daily basis with 'I see it, I can cut into it or cut it out, so therefore it exists'; this is my theory! ) I was at the physiotherapist yesterday and had a totally different experience. I've met the other two members of the local NHS physio team before and they were also great and really understand how chronic issues affect a person, that these matters are all too real, and how it is so often a case of twirling differently weighted plates on sticks - each condition makes its own management demands, often differing daily, and what may help one condition may alas exacerbate another. So it has left me pondering just how it is that bits of the health system get it and others are so woefully ignorant, and downright unpleasant to patients at times.

There is a lot on at present for me but if I may I would like to PM you sometime re your digestive journey. All good wishes x

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I'd be more than happy for you to PM me.

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So sad to hear about this. I have had a similar experience with my local practice sadly, and have gone private now which has been like night and day. I also have terrible issues with my digestive system, in fact I would say this is the worst system for me although not the most severe, as it has totally wrecked my confidence. I am on low dose amitriptyline and that does seem to be helping with my stomach, so I’m hoping in time it will get better. My blood tests have just come back positive for ANA so I’m hoping I’m on my way now to a diagnosis of some form, though from the sounds of things that doesn’t always make much of a difference in how you are treated.

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Sorry reply to both you and Mrsmouse referring to the digestive issues. So sad to see so many stories like this on here, where diagnosis is such a battle.

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I think a lot depends on how the Doctors view you as a patient. If theres some residual discrimination because of the diagnostic battle then finding a better Doctor that validates what you say without too much questioning seems to be the key. There are many who have good experiences when they find the right Doctor - they're just not posting here. 🙃

It should get a lot easier.

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This seems very true Freckle. I felt the things that would work for me: educated, hard working etc, have actually worked against me, as it’s been alluded to that I have sort of invented these things in my head as if I’m not busy enough already. Then I’m not really sick if I’m still able to go to work (without even any real understanding of how hard I was finding it). Anyway, I’m so glad I seem to be on the right path. And you are right, I have encountered amazing doctors too, sometimes it’s just the negative encounters that stay with you.

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Oh - don't get me wrong - I've also tried to do all the right things in life and I still consistently get treated badly. Sometimes I think the nicer or perhaps too polite or passive I am - the worse they become ? A bit of a bullying dynamic. I've been told by others that they've achieved success by finding one or two good Doctors that they trust. I'm still looking. I think my mind is so far gone that its only wired to remember only the bad - at least when I walk into a Doctors office. I think this is part of my problem - I cant bring myself to trust them.

If you keep walking out of a cave and see a flower and a wilder beast - you're going to concentrate on the wilder beast.

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Can’t agree with this more. I’m healthy weight, non smoker, non drinker. But still i feel like some doctors are looking for a way to blame me: too many pregnancies, too stressful a job, too much exercise. I definitely think you are right about the politeness, and eventually you become too tired and worn out to fight. I’m very lucky to have such a supportive family who have already witnessed first hand the battles to have rare autoimmune conditions diagnosed so they are ready to be my advocates when I can’t. I feel my private GP is really on the ball and she won’t see my wrong, but it’s a shame I have to pay to have someone really listen.

I really hope you have some success freckle soon. You sound like a really articulate person, loved your analogy about the flower and the wilder beast, so it’s even more exasperating when doctors are unwilling to listen.

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Those are really good points Freckle and wee1kirby that there are many people with very good medical experiences. They may be under-represented on the forum because they have enough support and their question all answered by their Drs so they don't use the forum maybe?

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I think this is very true. People who have had positive experiences with Doctors don't have to google so much for answers for medical problems - and they wouldn't need as much online support to try and make sense of inexplicable hard to explain bad behaviour of others.

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This maybe just my theory and experience : but first time seeing a specialist they seem sincere interested , willing to help

Follow up appointment: specialist spends half his time reading up all the notes from your last visit , then typing what your saying this visit and there’s absolute zero chance of showing him any recent photos or explaining new symptoms, because this qualified doctor has all of a sudden had to become a qualified typist and computer literate and he can’t multitask.

Just a pattern I am noticing 🤷‍♀️

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That's really interesting Lisalou, lots of people are saying that they don't feel listened to if the Drs are focused on their computer screens.

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Yes Paul, unfortunately I suffered ten years of "depression and anxiety", along with disbelief after I reported the tablets were not working. I was given many different kinds of antidepressants, one, Prozac, in particular made me feel suicidal and was extremely frightening. The impression I had from my GP was that I was deliberately trying not to make them work, really?

I had photosensitivity rashes, migraines, joint pains, gerd, extreme fatigue, (put down to the side effects of the tablets), neuralgia, high LFTs and stomach pain. An ultrasound failed to diagnose the expected gallstones but no further testing was done.

A lovely locum took the time to read through my many notes and sensed there was something else going on. The result was a positive ANA but my usual GP refused to recognise it, saying he was 99.99% certain I did not have lupus.

Although I didn't want to have lupus, at least it was a diagnosis of sorts. Now, once again I was made to feel I was malingering. I don't know whether the GP was annoyed the locum had shown him up and was reasserting his power or if he was just fed up with me and my many ailments.

Fortunately I moved out of the area, registered with a new gp who was prepared to listen and give me my referral to a rheumatologist. Within three to six months I was diagnosed with lupus, Sjogrens, hypothyroid, renal involvement, AI Hepatitis, (those pesky elevated LFTs were for a reason), Raynauds and Hughes.

I wish I had the courage to confront that obstinate and short sighted GP and actually tell him that he got it 99.99% wrong.

The disbelief and ignorance in the medical profession still goes on though. At a Pain Clinic appointment I was told to stop thinking about my illnesses, (I had renal cancer too) and to lose weight and exercise. When I asked for advice about the excruciating muscle spasms and pain in my back, I was told to go for a long walk. This from a physiotherapist.

Later I had an MRI where it was discovered I had disc bulges in my neck, deterioration and slippage in my lumber spine and arthritic spurs in my thoracic region.

Two years ago after suffering extreme breathlessness I phoned the duty doctor who said in a very offhand way, " I suppose you had better come in and we'll take a look"

That appointment resulted in an emergency DVT and PE admission.

I dread being ill, I don't go to my GP until I am absolutely certain I can't mend myself at home.

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I think one of the worst aspects is that being disbelieved doesn't stop even after a horrific period of diagnosis especially where mental illness is diagnosed before Lupus. You think it will get better - but it just keeps happening. The Psychological labels just keep coming. I don't go to my GP as early as I should now. I tend to stall and put it off. I've just become so tired of trying to overcome all the assumptions about me. Often its better for my health just to stay at home - and hope a symptom disappears before it gets worse. Recently for the first time after 41 years of this illness I've taken to adjusting my medications myself. I know this is dangerous but its just far less traumatic.

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So sorry to hear this bluebell99. Has it changed the way you're treated now you have a diagnosis?

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Hi Melanie, having a confirmed lupus diagnosis has helped a bit in other areas. Infections are now treated seriously, high blood pressure is also being linked and the Hughes (sticky blood) is now acknowledged as a problem after years of neglect.

Having other AI conditions seems to have focused some doctors, particularly my own excellent GP, although because my lupus is now stable, the rheumatologist's appointments tend to be further apart and require less attention. Perhaps I am not such an "interesting and complex" case any more!

The awful treatment I had before my diagnosis still haunts me with self doubt. I think there must be something on my notes as other GPs in the surgery do not show the same commitment and empathy like my own GP. Sometimes I feel like a nuisance to bother them, even though I put off seeking an appointment for as long as possible. I even question myself "am I really ill or just making it up and attention seeking?"

I recently had a particularly nasty urinary infection which I tried for a fortnight to get on top of with self medicating before seeking advice. I was told off for leaving it so long, sometimes, you just can't win.

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No doctor has ever said this to me but I was made to feel that way with the NHS rheumies here. They never listened to me properly or took any notice when I told them how my quality of life was being effected. It was like they didn't believe me or maybe they didn't even care. At one appointment the rheumy even made a comment implying I was lazy. She said something like, "Well, we aren't designed for sitting on our bottoms all day, we're designed for walking on the Serengeti." At that point my lupus wasn't under control, I had 3 young children and I was working part, running a home etc. I was so upset and angry. The next NHS Rheumy wasn't any better. My private doctor had asked me to be referred to an NHS Neurologist to discuss my migraine etc and lupus symptoms. She refused, saying, "A Neurologist's time is like gold dust and if I refer you and he thinks I am wasting his time, it will reflect badly on me professionally." Both NHS Rheumatologists made me feel that they have no compassion or empathy for lupus patients at all and I wondered why they had even become doctors, if they really didn't care? Luckily, once I started seeing a lupus expert privately, I was listened to and believed. And never made to feel that it was all in my head. With hindsight, I think the two NHS Rheumies lack lupus knowledge and therefore did not know the significance of what I was telling them and they didn't know that the symptoms I was telling them are related to lupus, let alone them knowing how to treat them. It has had a long term effect on me, being treated this way. I have completely lost trust with local NHS doctors and will continue paying privately and travelling to London as long as I can.

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It never gets any easier hearing your 'story' Wendy39.

I think you’ve hit the nail on the head...the rheumatologists I saw before I landed at a Lupus Centre of Excellence appeared to have little knowledge of autoimmune disease beyond RA, PMR etc., so my experience then was very similar to yours Excepting of course that it was possible for me to (eventually) get to a Centre of Excellence, something that is shamefully denied to you folks in Wales (I will never understand that - unless it’s a matter of financial economy - which makes it even worse).

So, the key here must be training. I'd like to think that all rheumatologist could be trained up to Lupus standard...and all the other AI diseases too. These disease are often called 'rare'...but not so rare, I think. They only remain 'rare' because general rheumatologists don't appear to be trained in them.

Or perhaps the answer is to expand the network of Lupus Centres of Excellence. But only on the proviso that all rheumatologist who work in them have the necessary (required) training in complex autoimmune conditions.

And the first next one should be in Wales!

Know exactly what you mean about loss of trust...there's something very rotten at the core of the system when this happens with the very people who should be our first line of defence when the chips are down.

People are allowed to claim 'charge-back' (for want of a better word) if they travel to Europe for treatment that is not available in a timely manner in the U.K. Be interesting to see what would happen if you tried to put in a claim for the services of a Lupus expert in England (since this is not available in Wales)! Oh now wouldn't that be interesting.

Or to stretch that thought even further...anyone know of an excellent Lupus expert anywhere in Europe (rhetorical question - I think 😉😀).

Take care Wendy...and keep up the good work...but keep yourself up first xx

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This is awful Wendy. It's just one injustice after another - on top of being ill. The weight of it all is just too horrific. Doctors have a note on my medical records saying - unable to trust Doctors. My SLE started when I was nine, told it was growing pains and I didn't like school - diagnosed at 14. I'm now 51.

This comment was put there by a neuropsychiatrist who looked at a set of scans showing some acquired brain damage (mostly from a car accident) and then wrote to other doctors saying it was Functional Neurological syndrome.

Lucky for me I don't trust Doctors and got a copy of the scans.

What an insightful Neuropsychologist.

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It's such a shame that these wonderful, clever and insightful doctors for lupus are so few and far between. It takes a lot of effort on our part to find them, which when we are ill seems so unfair. I still find it hard to believe that we are in 2019 when I hear some of these stories. Some doctors are living in the dark ages when it comes to lupus. x

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Absolutely. I was born in 1968 and thought a brand new century would bring different attitudes. I think It's just the same old attitudes expressed in more culturally complex ways. In some ways it just makes bad behaviour harder to recognise.

xox

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