I had my appointment to see Rhumatology today. After initially being told it was an 8 month wait, my GP wrote a follow up letter and I was offered an appointment for today.
I was nervous going into it but felt in a much better position than when I saw them in 2015. I had an eye specialist apt last week where they did a Schirmers test which I failed, and he had forwarded on the results to the rhuematologist. My new, supportive GP had sent several letters explaining concern regarding fatigue, pain, Malar rash, hairloss and positive lupus anticoagulant. He's been very clear in his belief that I have an underlying autoimmune illness. I felt like I was going in more educated, more supported, and with more evidence than ever before.
I was frustrated to realise on arrival that it was the same rhuematologist I saw in 2015. At that time he diagnosed me with fibromyalgia, but I felt like things were different now so I tried not to worry.
Started to run through my symptoms from the beggininng, only to have him promptly interupt me to say he would know everything up to the point he saw me in 2015. Explained that the pattern and significance of symptoms had become clearer since then and that I thought it was important to discuss everything. Told him about...
Fatigue, joint and muscle pain, stiffness, skin problems (rashes, dryness, blood spots etc), dry eyes, dry mouth, temperatures, abdominal pain, heart rate problems and palpitations, hair loss, white fingers and toes, numbness and pins and needles, weight gain, concentration & thinking problems, memory problems. Explained recent thyroid diagnosis and anti thyroid antibodies Also told him about the random period of complete remission I experienced in 2015/16 for around a year, where everything completely went away. I rapidly dropped 5 stone without really doing anything, was full of energy, no pain, hair grew back thick and healthy, got a distinction that year on uni exams because my brain actually worked. It was a few months after the fibro diagnosis so I thought at first that the medication was working, until the period of wellness abruptly ended and I became sicker than ever before.
He completely dismissed me, and everything I had said. Twice during me talking he received, opened and read text messages on his phone. He said nothing was really any different to when he had seen me before. He said the lupus anticoagulant was weakly positive, but that it wasn't diagnostic and that I had then tested negative for it so he said it had 'resolved itself'. Talked about Sjogrens but said I hadn't tested positive for that antibody. He said he had zero evidence that I had an autoimmune illness, and therefore couldn't diagnose or treat me. He said there were a couple of other blood tests he would run, but that he highly doubted they would show anything.
At that point I became really upset. And then angry that I had become upset because that always feels like I've failed. But everything I have been doing with my gp was building to this appointment and now I feel completely hopeless. He said 'there isn't anything diagnostically that needs treating'. And I sat there thinking about how deeply this affects my life, wondering how he could say that. My partner came to this appointment with me for the first time and he was disgusted. He said he had never seen a doctor be so rude or dismissive. He challenged the doctor on what the next step was, as he said they couldn't leave me like this. I had no words left by that point. He said I could have nortryptaline (already on the top dose), and try regular exercise and CBT. Explained that I follow a 3 times a week exercise plan because I know I have to, and that I have done years of CBT and am currently training to deliver the therapy. He had no further advice.
We got in the car and I completely fell apart. My poor partner had no idea what to do. I feel like he understands now how I feel about doctor's, and why I need him to come to appointments. I've had a few hours to calm down now, and a 3 hour recovery nap, and have woken filled with rage. I'm sick to death of being offered nothing as a solution. This illness is destroying my life. It has robbed me of the majority of my 20's. I've lost most of my friends because I'm too exhausted to keep up with them, and they don't understand. I've had to leave jobs. It's ended my relationships. I am clawing my way through a degree that, so far, has taken 8 years because studying is so hard for me. When I'm awake enough to work I can't remember the material. It's destroyed my body, inside and out. I'm unrecognisable physically from the person I was when well. Mentally I'm a mess.
I said to my partner in the car that I can't live like this anymore, and I meant it. But what are my options? What else can I do? I'm dangerously close to having to admit I can't work anymore. And I love my job, it's such a massive part of my life. I'm getting married in September, and in October I turn 30. I want to start moving forward into my next chapter, but I feel like my feet are in cement blocks. I feel trapped and like I have no options. There is no end in sight. There is no-one trying to fix this or help me. I'm completely on my own (medically at least) and I'm completely powerless.
I'm going to give myself a few days to recover then head back to the GP. But I have no idea where to go from here. I'm in the channel Islands and I don't know how a second opinion request would work here. They (GP surgery) have also previously told me that they wouldn't necessarily treat me on the recommendations of a specialist I had sought privatley. So it doesn't look like I have many options left.
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Bubble89
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some Dr's seem to be sent to us to make our lives more miserable. I am so sorry you have to go through this. My first rheumy just dismissed me out of hand. I left things for 6 months or so and then went back to my GP and told him things were just as bad and rheumy was useless and he got me an appointment with a different rheumy who diagnosed me with lupus immediately. don't give up just take a break and when you are ready go to the GP and start again. unfortunately we have to fight not just our illnesses but everything else too. hugs XX
This post really just touched my heart because I know exactly how this feels! It is infuriating, discouraging and disheartening. I am so sorry! I'm in the US so I just don't understand the dynamics of other health care systems but I know that we deserve to be heard! These individuals made a decision to pursue a career in healthcare and they have a responsibility to treat each person with kindness and care. I am hopeful you will find that person who values the oath that they took and who will give you the care you need. Hopefully someone on here has some insight on the direction you should take going forward. Don't give up!
What an absolute shocking tale...if you had a diagnosis by a private consultant, it would be a rheumatologist that would be responsible for treatment (though GPs would do the prescribing to rheumy's instructions on mainland UK)....DO NOT give up, book yourself in with Prof D'Cruz or another specialist and have the treatment (both medically and professionally) you deserve...once you're well enough, a complaint about that ******** is on order xxx
This is indeed a very emotional post to read. My heart actually breaks for you. These appointments where they just don’t listen to you leaves you feeling helpless. You go because you need help and in return you are dismissed and left to get on with a life that just isn’t manageable for you.
Please take some time out and gain your strength back. You will read often on here the determination from many who fight to be heard.
If you can do some research on a specialist in your area. Maybe post on here for advice. These illnesses can be hard work to diagnosis, even harder when you are faced with ignorance 😡
If you can find a specialist you are entitled to request a 2nd opinion referral under the nhs. This is your right and something that will require a lot of strength from you.
You can do this, you can win your fight to find answers to your symptoms, but for now try to find peace in things you do enjoy doing and keep your mind occupied to deter negative thinking xx
Tears in my eyes reading that, reminded me of my first rhem appointment and you sound so utterly defeated. So very sad that the very people we pay to care for us sometimes don't, but don't give up please. I had my 2nd rhem appointment this week (with a different rhematologist) and the experience was as different again. Continue the fight - this is just a hurdle and you are over it. Good luck and remember you have done nothing wrong, and it is not your fault he acted like this towards you.
Ditto to what others have said. Although I have seronegative Sjögren’s confirmed by lip biopsy and previous diagnosis of seronegative RA I’ve had my share of similarly infuriating consultations.
A thyroid endo I saw privately before Sjögren’s rediagnosis, said if a dr is rigid then move on. I do know hard this is though after living 30 years up in north isles and friend on Isle of Man who got similar to you from a rheum. This is partly why we relocated.
The only thing I would say to reassure you is that I was told that I couldn’t have Sjögren’s because my mouth wasn’t dry enough and my parotids were normal as were my ENA antibodies. When I finally had a lip biopsy age 53 it was 100% positive despite not apparently dry mouth. I asked the UK Sjögren’s rheum about my radiology report for lip biopsy and she said it meant I’d almost certainly had it for a very long time along with hypothyroidism. Hence alopecia aerate from age 9 and other stuff. Seronegative autoimmunity is an absolute curse. My GP’s 24 year old daughter has had it from age 13 - mostly affecting her skin as it did mine so she understands.
This doesn’t help me to access further treatments now and I’m being discharged back to GP soon. The CTD dr was equally adamant that I don’t have overlapping CTD and I felt infuriated and distraught as he was like this softly spoken brick wall. I too cried with frustration when I got back to my waiting husband in the car (he couldn’t come with me as couldn’t leave the dogs in car).
But at least, if he’s right, I still have a confirmed diagnosis and I’m seeing a rheumatologist privately tomorrow to find out if my NHS team are right about no inflammatory arthritis because I think I do have this overlapping. If he says no it’s all “just” Sjögren’s, OA, DDD and small fibre neuropathy I’ll accept this but hopefully he might agree to give me the odd steroid injection to get my pain down.
I asked my GP if they would investigate, monitor or prescribe according to his suggestions and she said yes as he’s a consultant rheumatologist that would be fine. It’s a 2 hour drive each way but I feel it’s definitely got to be worth it not to go through the trauma of feeling disbelieved or refused further treatments.
He only charges £170 for a 40 minute consult - less on further appointments. I’m unwaged so any private care is dear but I feel seeing him twice a year will be much, much preferable to sobbing after seeing Dr Arrogant on sufferance. Hope this helps a bit. Will post at weekend when I’m back from Glasgow to say how it went 🤗
Hi, gosh no wonder you’re angry, when clearly you are going through so much and feel no one is helping.
I too live in The Channel Islands.
After many years of inflammation in various areas of the body, amongst other issues, anxiety, memory problems ect. when I started to get sharp pains in my legs mainly at night, I was then referred to a Neurologist, thank god, who has now diagnosed me with Rheumatoid Arthritis and Lupus.
Medication has controlled the Lupus.
However I’m to have a full spinal MRI this week regarding arthritis..
I think you should definitely ask your GP for another referral.
Chin up take each day at a time sending you hugs.xx
A fellow CI resident! Was nice to know there's a friendly face out here - easy to feel a bit lost at sea
It's a crazy set of circumstances to get your head around really. No NHS. Limited specialists. And basically needing to sell organs to get on and off the islands to find alternative help!!
Thanks so much for all of your kind words. I took the rest of yesterday off from 'life' and, with that and your replies, I'm feeling brighter about it today.
It still amazes me how detached doctor's can be, when there is so much at stake for you. Whatever his opinion, I deserved more respect than I got, and I will take that further. They're actually doing a review of the Rhumatology provision here at the moment because of concerns that it is inadequate, so that panel may be a good place to start!
It's an odd position with the second opinion. We aren't NHS here, but have agreements with the UK about a lot of services. We have many specialists on island (though generally only one of each) but don't actually have a Rhumatologist. Our clinic is run monthly by a Rhumatologist who travels over from Southampton hospotal. Ordinarily, if you couldn't get a referral or second opinion on island we would be sent to Southampton hospital, but given that's where he is I feel I have a right to go elsewhere. I know sometimes people would then be sent to London as it's another easy access destination for us, so I think I will look at my London options.
I contacted the London Lupus Centre (I think that's who it was, it was a private clinic near london bridge) a while ago to enquire about private costs, but with a first consultation, bloods and a follow up, I was looking at £1000 before the insane cost of flights! If it's the direction I have to go in I will, but will wait until I'm out of options. Does anyone have experience with this clinic?
Wow sorry didn’t realise the lack of medical facilities you have there. Sorry to read this.
For myself I only ended up getting along the road after paying to visit professor D Cruz at the London Bridge Lupus and Vasculitis Hospital.
My view on going to this extreme was if he couldn’t help me I was barking up the wrong tree with my Illness being an autoimmune illness. It was worth the £230 it cost.
Are you entitled to Nhs treatment if you can attend a mainland hospital?
If it is your last options, maybe set up a go fund me page, tell your story and I’m sure myself and many others will try and help where we can.
I live approximately 14 miles from central London. I know I’m a complete stranger but there would be accommodation here if you needed it to save on hotels etc.
I’m writing this because I’ve been in your same shoes, no one listened for 5 years , I was passed around the nhs and each time no one would help and I just couldn’t live a normal life. It’s nice to hear you are a perkier today 😘xx
So sorry to hear this hun. I can totally relate in the sense that I have had periods of my life where I have been so unwell, really had to battle to finish my degree, work, I have lots of beautiful children. This year has been the absolute worst and a lack of interest/concern from nhs doctors has driven me to go private where I have experienced not perfect care but been treated with far more compassion. I’m finally starting with medication that will hopefully give me my life back. Please don’t give up, you have the right to feel better. No matter what is wrong with you, and it doesn’t sound autoimmune, you deserve proper treatment to alleviate the symptoms and guidance on how to live your life with as much normality as possible.
Hi Bubble. I can totally understand what you went thro' at that meeting, having been thro' similar myself earlier this week. I've also calmed down a bit now and - unless we all have Munchausen's Syndrome (see my post to Twitchy) - none of us deserve this sort of treatment! I still feel totally belittled and battered by the interrogation - soz, this is the best way to describe it - I received and I don't really know how to move forward, as yet, as it's all still too raw. Like you, I have worked extremely hard, having achieved a Masters and then a PhD by thesis in an area of biomedical science (while holding down a full time job with a young family AND feeling extremely unwell) and now to have a clinician, of half my age, tell me that all of my symptoms are due to a few too many drops of wine really gets my goat. Rant over for me - but you are certainly due a few more!!
Hi ,Booble! I'm sorry,I know how do you feel, but maybe doctor wanted the best for you? Did you know,that on 3rd place people dying from is the cancer, on second place is heart diseases, but more often people dying from medications. ( I am apologise if my English isn't perfect, but hopefully you will understand what am talking about) I was in the same situation 15 years ago but with different diagnosis. I was devastated as I thought I can't live without tablets , I had epilepsy,which started after my head trauma. My new doctor did not prescribed me tablets, just said to go and check if I still need them.....and he were right ,I did not needed them. When I was 40 y/o I've been diagnosed lupus,so, I started to take all prescribed tablets, but after about a year I noticed, I had some allergies from this tablets,so I stopped to take them and turned for a natural treatments, but after about 5 years my conditions get worse and I had to start taking tablets again! I did not like it and decided to fight my Lupus.So, I did changed my diet,started fill up my body with greens,fruits and I gave up sugar for my tea and coffee and started to drink plenty of water. This all together helped me. I do not feel so much pain anymore( just sometimes after hard day at work), I lost a bit weight, however, I wasn't too much overweight (only plus 5 kg which is similar to 5 sugar packs) In my opinion I was full with extra liquid, which made me feel puffed. All I wanted to say is that our health is in our hands. Go on to internet, find more information about healthy life style,about diets etc. Even you can apply for courses such as ''Health and nutrition'',which is for free here in UK.( vision2learn )This course gave me understanding about what going on in my body, I understood my big eating mistakes,which I fixed and now I feel better than 15 years ago.
Think about it, please! I wish you good luck and to everyone here to find the way back to better health. xx
my heart goes out to you, I know exactly how you are feeling. Please don’t lose your self belief, with the support and love of your partner you can move on from this. After a similar experience my GP at the time actually said to me:
“Why do you let someone like him talk to you like that, he is not God, he is only a man like me or your husband. It is only his opinion”.
I was sent for CBT and it was the best thing I ever did. With support from my family it helped me regain my feelings of self worth and gave me the mental strength to carry on fighting this awful disease.
It took many years and dark periods before I was recently diagnosed with lupus but those words from my GP stuck in my mind.
I will be thinking about you.
Love Meg xx
Hi Bubble89. I am just so sorry that you had to go through that. There’s so many drs and specialists who are working against us and for us it’s a horrible place to be. That dr and others like him should not be working in the medical profession in the first place. I would get a second opinion get your GP to find one as far away as possible and can tell you the name of the specialist so you can go online and do some research before you get to see them. You need all the medical records. Make a list of every dept you have ever seen and put in a medical records request. It takes 40 days. Get online and print out at least a dozen forms fill it in put it on an envelope and personally go to every dept and hand it in. Ask for a receipt so they can’t say they haven’t got it. You don’t have to explain just say they are just for your personal Records to file away so if a future consultant wants further information you have it on hand. get a list and cross off every dept then you wait to get all the records. You will learn so much from them records. Get your family and friends to help and support you. I hope that the next person you see will be much kinder and more helpful. I know how hard it is as I am in the same situation with horrible drs and specialists but after giving up am now having another go so hoping we both succeed. Have a great evening and take care. Elena.
Sorry for the late reply. We had family staying with us this weekend which turned out to be a welcome distraction for a few days.
I feel a bit recharged now and ready to forge ahead so I've made a GP appointment for next week to discuss a second opinion referral. Have also downloaded all the forms today to get copies of all my medical records - think it's time I see what they're actually storing about me! I've also started the process for raising my concerns about the local service through the review panel that's currently taking place.
Thanks for all your kind words. It really does make all the difference!
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\"But you look so well, why are you on steroids?!\"
Well - I went to the dreaded Hospital appointment this morning... and
Am I ever going to get a full picture 🤦🏼♀️
