I have recently been diagnosed with undifferentiated connective tissue disorder (lupus and Sjögren’s) and went for my 3 month appointment and I gave the doctor a list of symptoms that I had been experiencing and all I got was “ok let’s keep going with the medication” but didn’t do any checking or further questions, like they didn’t actually care about the individual symptoms!
Has anyone else had this, where they just bypass your symptoms as though they aren’t important. I felt like there was actually no point in mentioning it but then who else do I tell!
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ZA31
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Sadly, that's the experience of many of us here, ZA31. If your rheumatology department has a rheumatology nurse - or even a lupus specialist nurse - it may be worth contacting them to discuss symptom management and concerns. This forum also has lots of very expert patients and is a pretty good place to get ideas too.
Incidentally, LUK also funds research which does seem to be making some impression on the profession - but obviously not enough yet academic.oup.com/rheumap/ar...
So sorry to hear of your experience, I would agree the Connective tissue/lupus nurses are my first port of call .they are very knowledgeable supportive and once you build a relationship with them often an open gateway to better rheumatological care.Good luck
I have my 3 monthly review shortly and I am experiencing numerous side effects on my new medications. I will be addressing the team with my concerns as it's important to get some response. You could try speaking to your GP . I hope you get some answers to your concerns.
A doctor named Dr Brooke Goldner has had success with her rather severe lupus by drinking a nutrient dense drink every day and of course avoiding stress. Look her up. The green smoothies consist of lots of kale or spinach, pineapples, mangoes and bananas. They are large, so if you decide to give them a try, build up slowly. Worth a try. They, and avoiding cow's milk and wheat, as well as meat, have helped to quiet my autoimmune disease(Sjogren's dominant).
Hi, sorry but unfortunately I have spent 7 years with Drs not listening. My rhuematology consultant won't even see me. My Dr has written 3 times, I have written. I haven't been seen for over 2 years and she is just not interested. I have multiple problems and I am under other departments too. No one is bothered I no longer have any faith in medicine and Drs.😕
I feel the same. I have lost faith in Drs. I am not a person to complain, or have anxiety over medical problems, but the way specialists have treated me (for no good reason) has caused me to give up completely. In my follow up appointments, I just say I am fine. There is no point. 🤷♀️
I completely get that! After listing my symptoms to the dr and he just said “ok, carry on with meds” I was so embarrassed as though all my symptoms (me taking for 30mins) meant nothing, he said nothing! I was so deflated I said to my husband “what’s the point me even saying I’m not feeling great”
The same here. I see other specialists for complications due to lupus, and they ask me why I am on this medication, or that one. I tell them they have to ask my rheumatologist! He doesn’t answer any of my questions. 🤷♀️ I feel foolish bringing up symptoms because what is the point? I have had a pretty big sore in my right nostril for three months now. I don’t know why or what it is. I am not going to tell him about it. If I do, there will be awkward silence and he would just say “continue with your meds and I will see you in three months”. So what’s the point?
That’s exactly what is happening, I even said to my rheumy my under arm is really painful and he didn’t even check or ask any questions!! But if we don’t have them we are stuck! I’m always worried that one of these symptoms could turn into something really serious and hence why I feel the need to mention as then atleast I know I’ve told him! As disheartening as it is… 😔
Omg Muff20 that is horrible! I’m so sorry, I can’t imagine what your going through! It’s just so upsetting that the drs don’t care! How are you coping? can you not be referred to a different rheumatologist?
My rhuematology consultant is meant to be one of the top ones. I don't think any other would be any better. I have UCTD and not many blood results that show much so I don't think any of them will care. I really struggle in the winter small joint pain big joint pain. Struggle to sleep because of the pain. For 7 years just trying to get on with my life. Haven't been able to work or do much. I am fed up with medical professionals. If they don't have the right blood results they either think it's in your head or don't care. I have sent pictures of my red swollen knees, lists of problems and symptoms it really is time to give up even bothering with Drs. My GPs are good and always support me but consultants just don't care. They only care if you have what they are interested in. Sorry really lost faith.
That’s so upsetting 😔! Your right they heavily rely on these blood tests and if you don’t have the evidence then they don’t care! I feel so bad for you, being a chronic thing it’s difficult to get over and it’s so important to find a supportive team! As they will be with you for a very long time.
I’m glad your GPs are supportive and I hope they are able to help you with pain management.
This happens everytime I go to my rheumatologist, it's always the same...hydrat drink more water blah blah blah...nothing ever changes and when I say something I'm told to be glad because it means medication is working....well that's great but is there really anything wrong with me? Makes me wonder 🤔. If nothing ever shows up then how do we know it's helping? Crazy 🤪. I have to get labs done soon and then see the doctor and go over results which are always the same.
Following a similar path to yourself at the moment, with same suspected diagnosis of these two conditions. I found out recently that by having a separate consultant for my sjogren’s and another, a rheumatologist, for my lupus they both now seem to be competing to show they are each following the most recent research and giving me far more attention and tests…as long as I benefit by better, quicker treatment and management then that’s fine by me! So, maybe request another referral to a sjogren’s specialist? Good luck with your endeavours x
If they are symptoms of the condition then in their mind they are expected. Mine covers this by saying mmm that’ll be long term after each symptom. Which can also be annoying whilst be acknowledged.
See that’s the thing I just wanted them to say “yes that’s expected” or any sort of comment about my symptoms, but I actually don’t know if they are lupus related or not. I just wanted some clarity as this is all new to me 😔
Your right I guess the comment u receive isn’t any better, just acknowledging but not planning any next steps.
I think it’s the thing that drs expect these things so are not surprised and feel it is a standard thing. I guess all you can do is clarify that you need them to confirm that’s normal as we do not know. I think there is a lot we have toLearn about how we speak to drs as well as them understanding what we need from an appointment .
Yes maybe, however it’s so new to me that I would’ve made me feel better to know that I’m not going insane with all these random symptoms. But I guess like u said it’s so standard so they don’t feel like they need to comment. Hopefully the next appointment I will have the confidence to actually ask whether these symptoms are common and expected.
You are not going mad, Lupus is a derivative of Luppie and some times that’s how it makes us feel. Take a list of questions next time so you can manage the discussions.
I think your right I need to be more organised with pics etc and assertive! The main issue is the lack of confidence because I think they are professionals and know all I will sound silly if I keep saying these are my symptoms etc, I think the worry is they will just say “oh that’s nothing or even unrelated”
After taking advice from the people on this forum when I was newly diagnosed I was able to take control of my appointments. There is a wealth of knowledge here. Use it. I was told to write down everything I wanted to discuss in point form, take photos (they not only show you the problem but if it’s on your phone or iPad the date is there too), and in one case tell the GP he was depriving me of basic pain relief. It certainly changed the tone of the conversation and gave me so much more confidence. I am prepared to challenge things now, all be it politely at first. I took an 89 year old lady to a diabetes clinic the other day. I had to punch her in the hospital special wheelchair. I am so slow at walking because of pain that we took ages to get to the waiting room and I was in pain. We got to the receptionist who at first gave no eye contact but said “name?”. I waited until she looked at me. “Do you have an appointment letter?” I confirmed I did and started to push it through the gap in the plastic screen. She went mad. “DONT PUSH THAT THROUGH- don’t you know there’s a covid pandemic!” I said I did but she had asked for the letter. She asked for the name then said telephone——-and called out a number. I asked what about it. Was that the ladies mobile number. No she doesn’t own a mobile but I would ask. I pushed the wheelchair to some seated area and asked her if she knew the number. No. Went back to the receptionist, who still didn’t look at me, and asked her if she could put my number down. “Wait ! I’m not on that screen at the moment.” So I released the redhead very gently and said “Do you mean to be that rude, because since we have arrived you have been nothing but rude and disrespectful AND IT HAS TO STOP DO YOU UNDERSTAND?” She went bright red and said “ can you give me the new number ——please?” I looked around and several of her colleagues were popping their head around the corner and hiding smiles. You have to be confident and firm sometimes. Don’t let anyone ignore you or disrespect you. After you have told the doctor, ask a question. So what do you think that means, or why do you think that happened, this is new for me, what do you think caused that. If nothing else you will know if they are listening. My replies are always long so I hope I haven’t bored you to sleep! Hugs and encouragement coming your way from all of us. X
This is excellent advice, thank you so much for this! Your completely right I have to stand up for myself and ask the correct questions. This story was just really insightful, thank you!
I think we all deserve respect and the right to answers.
I am going to make sure I am ready and prepared for my next appointment and hopefully when I get there I don’t get all nervous! I hate confrontation but I think sometimes especially when it comes to your Heath, you have to stand up for yourself.
Hi za, im sorry you felt you had an unsatisfactory rheumy appt. I do understand how you feel as ive had many myself over the years.
Im diagnosed as UCTD too so welcome to the UCTD club!. it can be a tricky condition for doctor's and us patients to understand. I hope you've had it explained to you. Its good in a way that your Rheumy said keep.on with the medications . He must have listened to your symptoms and taken more on board than maybe you realised. Your listof symptoms justifies you being on them. Can i ask what they are?. These consultants sometimes don't realise how they come across!. Sometimes its a battle to get treatment so you've done well.
Could i ask what treatment your on?. Is it hydroxy?. This is often used as a starter medication to see how you respond to it.
UCTD needs to be monitored so i hope rheumy said he will see you again. New and different symptoms can develop over time so it needs watching. Did he do bloods?. Sorry for the questions but it all helps to see what kind of a consultation you've had.
Hope ive been helpful and you feel better soon. Keep safe. Xx😀
Hey, thank you so much for your response! Don’t apologise for the questions, it’s nice to know people actually care!
Yes they have started me on 400mg of hydroxychloroquine and they said if my symptoms don’t change in next 4 months they may try me on mycophenalate. They have also given me a steroid injection.
The symptoms I have are hand and feet pain, Jaw and ear pain, hair loss, itchy scalp, dry eyes, pain under the arms, extreme fatigue… and that’s the stuff of the top of my head 😳
Yes they did bloods and I was antibody ro positive and inflammation levels raised. Ana number was 1:2560
they said they would see me jn 4/5 months but if I was desperate for help then could call the nurses.
Tbh I just feel lost and left deserted with all these symptoms.
Im glad ZA you are on hydroxy and your symptoms are similar to some of mine. It does take awhile for it to start to work. Ive found it helpful for the fatigue and joint pain. Hope your getting an eye check too as thats important.
Its so good too you've been given a steroid injection to tide you over till hydroxy kicks in. This too can take some days to work so hopefully soon you will start to feel much better. I must admit its the fatigue for us thats so hard to live with day to day.
Im glad too there's a plan for Myco if hydroxy doesnt help everything. Your consultant too is seeing you quite frequently to see how your getting on. That too is good as these illnesses can change quickly and need overseeing.
I go 6 monthly so only twice a year so i hope it all helps to make you feel less abandoned.
Its also good your hospital has the Rheumy nurses. They are so helpful in between and can ask the consultants advice if needed. Use them if you continue to have problems.
Im quite unusual in that ive had UCTD now for 35 years and in that time have not gone onto develop classic lupus and my bloods stay stubbornly the same!. There are a lot of us on here with UCTD so its quite a common diagnosis. I do hope you find the forum helpful and friendly and ask us anything you want. Theres usually somebody with an experience of it!.
Im so glad ive helped ZA. Your diagnosis has come quickly as it can take years for many of us on here including me!. Im sure though it didnt feel like that but must have been such a relief!. 🤞by xmas you will be feeling a lot better. Keep safe. Xx😀🤞💕🤞
I too have been diagnosed with UCTD since 2018 and am on Hydroxychloroquine, iron and vitamin D. I have low complement C4 levels, Anemia, low vitamin D, some lymphopenia and neutropenia in the past and platelets always borderline low.
I have also been diagnosed with Raynaud's, migraines with aurea and IBS. I have skin problems such as atopic dermatitis, rosacea, seborrhoeic dermatitis, keratosis Pilaris and since last year rough and hard skin on face and neck which they "think" is mild perifolliculitis. The dermatologist is the only one who is really investigating it thoroughly by meeting with different experts. They don't know why or how to treat it. The gastroenterologist didn't test me only referred me to the nutritionist and I am on a waiting list.
About my symptoms I am very tired most of the time and I have some joint pain in my fingers, hair loss, headaches, fever, eye pain, mouth ulcers sometimes, chest pain sometimes, periods with constipation and diarrhoea, abdominal pain, painful periods, sometimes mental fog, I don't concentrate well.
I decided to pay for a private genetic test just to find out if any of these symptoms or diagnosis made sense and it showed among others, a high risk genetic predisposition to develop SLE. This does not mean that it is, but that there is some predisposition I understand if the necessary triggers are present.
The vasculitis team sees me on a recurring basis but always doing the same tests and as you all say, tells me to continue with hydroxychloroquine because my Ana is negative at the time of my check-up.
It has helped me to have all the photos saved in folders and to be very insistent so that they listen to me. Sometimes I am sorry to bother, but I write to them by email asking what I want to know or see before appointments or through the online system to both GPs and specialists. It is a pity, as we said, that there is no good coordinator. So I try to keep them informed of what others are doing.
Sometimes they just don't know what to do, others show much more disinterest.
We have to make an effort to be heard, to make progress and not throw in the towel.
Sorry for the super long message. I hope it helps.
Oh wow, my symptoms sound very similar to yours, but my Ana was positive.
Would you say ur symptoms have stabilised with hydroxychloroquine? Or are they getting worse?
I think your right we are stuck with this condition we have to try abs make some progress it’s just hard and difficult when your going through so much pain and you just want to be heard and treated.
Well, it is difficult to know exactly but since I have been taking hydroxychloroquine, except for anaemia, platelets, C4 complement which never goes up, it is always low, white blood cells have improved in quantity. Migraines and joint pains are more sporadic and my skin also felt better until the hard skin on my face suddenly appeared a year ago. I go to the ophthalmologist/optician every year to have the macula and the back of my eye checked for any side effects that the hydroxychloroquine might cause. In conclusion, I think it has helped me to cope.I try to read the latest research to keep myself informed and ask the doctors.😅
Hi there, yes sadly many Rheumatologists focus solely on blood tests. It is depressing . When you have your next visit concentrate on one or two issues that you want help with. I really hope that you get some help. You could always discuss things with your GP too. Good luck xxx
Yes so I did just bombard him with about ten symptoms I was having but they’ve been building up and I only see him every 3 or 4 months. But maybe he couldn’t address all of them. Thank you, I hope so too xx
I think the three month check in after meds is more about seeing if you are tolerating the new meds than how you feel. It can take some time to notice the effects of meds so the doctor was likely listening for side effect flags more so than symptoms from lupus.
Hi Za 🤗Your doctor has stated you on the maximum amount of hydroxy and it does take about three to six months before some folk feel any difference. I was started on the same dose in 2017..it's the first drug they try.
However I will also say that hydroxy alone did not help my symptoms much. The consultant keeps a check on bloods and I'm thinking that he's waiting to see if hydroxy alone is enough or whether to add in other meds.
Unfortunately it does take a lot of juggling in order to find which medication works and which doesn't..for instance I started treatment in 2017 but it wasn't until 2019 that I found significant improvement (and that's after trying another drug which didn't work).
There are no quick fixes for us with autoimmune disorder..frustrating I know but it's a fact!! Keep your symptom diary n take photos of any skin involvement.
Being seen every three to four months is common at this early stage of treatment so try to be patient..easier said than done I know but we're like complicated jigsaw puzzles..where lots of the pieces don't fit..and lots of them are missing entirely!!
You've got us here and we listen and we understand so using this forum you will learn about all things autoimmune n how to deal with doctors. You've already got good advice..you're not alone!! 🌈😽😽Xx
Unfortunately i experienced the same exact thing i twice had a full diagnosis of lupus and had to be changed to a new rhemy after insurance changed and was then told lupus symptoms not positive atm but bloodwork shows i have autoimmune disease just not clear what and given uctd diagnosis and possible fibromyalgia atm dont get me wrong im gladd i found out i have fibro besides my whole hectic list of problems after a couple follow ups with continuous pain and symptoms until I voiced out my self to say well what does this mean for me do my symptoms mean nothing and my rheumatologist said “ohh noo noo i totally believe you and understand its just unfortunately while u have lupus symptoms your blood work is what things go by to be able to medicate you properly you are in the umbrella of lupus since lupus is also a connected tissue disease i know you where diagnosed twice and i dont doubt that but right now what im seeing with your blood work is its getting managed but you still have symptoms so theres other things that can be happening dont ever think i don’t believe you i do but medically we go by whats in blood work to manage what’s left of your symptoms” so i just say sometimes our bodies will hurt so much and we suffer so badly that only us lupys and AD allys only understand but our bloodwork doesnt quiet do us justice like our blood likes to play games with us pacience and time stress will only make is worse on us dont feel so alone we all go through this until we finally have our own blood in our own side lol take it easy 🙏🏽🥰 Thats what we are all here for give each other a pat on the back and more hope n love and care 🙏🏽🥰
I can’t believe so many people are experiencing the same thing, it’s nice to know I’m not alone and this group has so many posotive vibes which is nice! That is really frustrating though to get a different diagnosis when you think you have something and then it changes. I believe having UCTD I’m about to embark on that journey!
However your right at the same time the stress won’t help so we have to take it easy. Thank you for your support 😘
Over the years I've found it easier to focus on one or two symptoms that are bothering you the most (one that is within their remit - made an error recently talking about UTIs with the rheumatologist).
GPs should also be proactive with symptoms too and can do a lot more with referrals to different specialisms.
But otherwise, yes, you get on medications which keep you more or less stable (not exactly optimal) and there isn't much to discuss beyond that.
I keep my fingers crossed nothing bad happens, which is revealing.
I had my first rheumy visit in August - in their letter to my GP they said I could have UCTD but that the complexity of my symptoms made it difficult to evaluate. At the same time they mentioned to continue to have visits I needed to agree to any medication. At my second visit all this was lost - I was told they could not conclude anything and would not see me routinely, but that GP could re-refer. I'm left taking aspirin.
To be honest at both trips I was given no space to discuss symptoms, or ask questions. The appointment was brief and the examination rapid check on hands, knees, heart and lung sounds, feeling under diaphragm and where kidneys are...no urine sample, but plenty of bloods. I did provide photos, but all were classified as not providing diagnostic evidence. I emailed these in with summaries and spreadsheets etc before the appointments - but nothing was addressed. Only said that some of the symptoms were things everyone got. Now when I can't urinate, or when other parts of my body just aren't working - eyes, ears, hair falls out, have sore malar etc I reflect on these unkind words. Meanwhile Rheumy nurses said they could not help because I was not diagnosed. I could write a book on it.
The new EULAR / ARC criteria to me seem so brief, my peripheral nervous symptom symptoms, haematuria and low lymphocytes count for nothing when in the past they would have had value with the old schema ARC and SLICC. Also photosensitivity doesn't appear in EULAR / ARC
To score anything on joint involvement - maybe they were only looking for joints that were swollen AT THE TIME OF THE APPOINTMENT , tenderness no longer seeming to count. Also serosal symptoms were being looked for in a truck CT scan with contrast, early on the disease. I had two CTs in the space of five months - I would have preferred them to listen and discuss symptoms.
It was not that joined up from my point of view, yet I guess it fitted in with their routines, timescales, and prioritisation. Meanwhile I was parked by GP surgery, nobody wanting to listen or give advice, because I had been referred - for much of this year it has been LUK and this forum that has helped...not doctors... GPs also are only prepared to consider one symptom per phone appointment and then pigeon hole into something totally ridiculous that I can't relate too - so joint pain now..well HRT may be needed not anti-inflammatory drugs.
I'm glad I did a medical sciences degree. I'm a scientist, not a medical person..
At one time in my teens I would have loved to have studied medicine - I'm glad I never did...
Also if EULAR / ARC criteria is narrowing those being diagnosed with Lupus, it is also narrowing the range of patients involved in research. I get the feeling that UCDT is less important - maybe they don't like the area because it is undefined..possibly less monetary benefits research-wise.
One wonders who is given the place on EULAR and ARC to make these decisions and what are their priorities in bringing about such changes. Does it really help patients, or does it make their workload and decision making easier and less taxing?
Yes I feel the same, UCTD is just so broad they can’t focus on one area.I didn’t realise so many people had such negative experiences! It’s sad that we are having to do this without the help of specialists.
Yes I had exactly the same checks that you had even though I had mentioned I was having severe pain in my hands and feet, because they weren’t swollen at the time they said nothing in regards to this! 😔
I cannot believe this, how can they not listen this is their job!
In reference to the GP I think it’s ridiculous we have the same rules, we are not allowed to discuss more than one issue, how does that work when we are dealing with various symptoms!!
But also GPS don’t specialise in Autoimmune diseases so their understanding won’t be as good as a rheumatologist.
I can’t believe you even sent in pictures and you still were listened too… that was going to be my next step!
Your consultant could be different. So send them in and see.👍
I think it is about expectations. Now I put together documents and think of them being for 'my own benefit'. These documents and folders of photos I see as'my friends'.Wherever I gone on my 'luppie' journey, I will always have these, and my week-by-week journal to refer to, and attempt to share parts of.
This viewpoint I find helps and I feel I have a bit more control of it all. My expectation of doctors helping me is now really minimal, but I won't give up hope. Maybe one day I will just happen to have a really great doctor, who knows...
My journal is on squared paper in landscape - there are 24 hr bar for each day of the week, coloured in to show sleep time, inside and outside time - annotated with activities, medication taken and food eaten. In bold I put any problems so can see when they occurred as flick through the pages
In a word... yes. It's awful I know... so sorry to go through it...but depends on who you see, how they're feeling and how much time they've got seems to me. 🙄. I take it this was your rheumatologist? Have you read Lupus UK's info on how to get the best out of your appointments? And I think lupus UK did a webinar on it too.. I'll have a look at get back to you. Be strong... they are there to help.. and we need to push for their attention.. but I think I remember the webinar specialists stating "take 3 main things with you to discuss" as anything more will completely dilute it all and they shut down. Fair enough I guess,,.. but how do we know what is important and what isn't? Anyway.. will get back to you D
That’s the thing this is all new and I don’t know what is lupus related or what isn’t, what is a serious symptom and what isn’t? But I completely get the whole 3 main things because I gave him so many and he seemed as though he was completely shutting down!
I have and its still happening, they don't care as long as they ditch out tablets(medicate,medicate,medicate), thats how they get paid. Whether you get sicker and sicker, they don't bother looking at the root cause of your symptoms. Only a few who care, but only selected places(those lucky patients). The body is very clever, every symptom is the body telling you that there is something wrong in the normal body function. Drs do most of times sounds like e.g a car mechanic telling you to cover /block (with a tape )a flashing red light on a car, instead of find the cause of flashing light & you drive & crash & die and they don't care
Checkout autoimmune diet, good suppliments , watch Dr Brooke Goldner etc, try and to avoid stress as much as you can
Oh wow that is shocking! How can they make mistakes like that! But also the fact that they aren’t corrected! How can you full be helped when the information is wrong!
I'm in US, but a lot of rheumatologists here are the same way. They will prescribe but that's about it. Any issues with organ damage out ya go to a nephrologist or dermatologist, etc. They don't even treat arthritis with pt, you have to go to a physicial therapist or orthopedic. Arthritis in your feet? See a podiatrist. They basically get away without having to work hard.
I'm moving on from that and going to an arthritis center. I have Lupus and nr-axspa spondyloarthropathy and my arthritis is getting very bad so I think it's best. Plus my doctor doesn't listen either. 🙃
Good luck. Keep all your notes and labs and don't settle for laziness in your doctors. You deserve better! ❤️
Unfortunately it is my experience! I have always had to fight for tests, scans (too often refused) , push… when I felt and feel so exhausted! I have honestly come to wonder why they wanted to become doctors in the first place! There are the few, very few, exceptions but I always have to do research (which they don’t like) take it along with me and request tests, treatments etc…. As for “Do no harm”… it’s a joke they use to get out of doing certain tests, etc. And never accept NO, not necessary for an answer. After all it’s our lives, they need to be reminded frequently. It should not be that way.
Yes exactly choosing to be a doctor u would’ve thought they want to help the patient and actually treat them! When you push for certain tests do they do it? Xx
Nowadays my gp will request the tests I require (always politely) and I have my notes with me - I worked very hard to develop a good relationship with her, it hadn’t always been easy before that. I always back my requests for seeing a consultant and having certain tests, etc. She’s never agrees to requests for MRI scans, always saying a consultant only can request these… so I request she refers me to a specific consultant. At times, out of despair I saw a few consultants privately and then they put me back in the NHS system once they had seen me and acknowledged there was a problem. One should not have to do that. I always do my research thoroughly and I keep notes/a diary of recurring problems and take these with me when I see my GP. I have learnt not to let them fob me off …. Quite a challenge. We should not have to fight …
Yes it is sad and frustrating that patients have to fight for the help and treatments they need more often than not. It should not be the case. It seems GPs wait until all the symptoms are so obvious before they act…not good medicine. So yes, good preparation but be prepared doctors will still try to put you off… so calmly but firmly tell them what is needed and should they refuse it would be negligence. Tread gently but firmly backing up by good notes/diaries/copies of good research papers. I am not anti doctors but I know how hard it is to get diagnoses and treatments. Good luck.
I’m so worried, like you say they only take you seriously when symptoms get really bad, I don’t want to get to that point! I want to be on top of this so that the lupus doesn’t get a hold on me! that’s obviously difficult to do without a medical person involved.
I am going to try my best to be firm and stand up for myself. I am saying this now I just hope I actually have the confidence on the day!
Once again, thank you so much for all your advice! 🤗🤗
Please don’t worry now. I know it is difficult when one isn’t feeling well but try to keep calm (and no I can’t always do that…) and use your energy to calmly research and make good brief notes and a list of your most important concerns and questions. Might be a good idea to make a copy of these and hand the copy to GP saying you thought it would save time if he/she read it. Then write down the answers given. I understand not everyone has enough confidence… I had to develop it somehow. Don’t have too many big questions to start with. I have also written to my gp enclosing research papers, giving symptoms and asking to be referred to a consultant. These notes are kept with our medical records. Perhaps try this route first. Never be apologetic but always to the point and courteous as I am sure you would be. Again please don’t worry but begin your journey to get better medical support and help. Of course there will be a point when doctors can’t do more until new scientific developments occur but until then one should be able to get better support. At the moment Covid doesn’t help… You can do it. Take care x
just what i am experiencing.gp ignoring other GP s /consultants diagnoses.wont accept that I have symptoms and more than 4 of the 11 Lupus pointers and of symptoms of Pagets Disease -claims to believe me that my face has changed shape-not just my facial features but skull too-and that is making other referrals -who to?has not told me.who else is there besides rheumatologists?
i gave my gp a list of symptoms and the list of criteria/pointers for Lupus as per Lupus UK=of which I meet with way more than 4 and still he insists I do not .do not know where to turn.
I was diagnosed with Stills disease RA late 1970s when I was 17.By my mid 20s it was controlled and I was off most meds.
I learned swiftly thereafter with flares that there was SIMPLY NO POINT SEEING GPS.
I’m 59 next year and have not seen a specialist since my mid 2Os and have never seen a GP who knew what it was or how to treat it.
So, I had to manage but we can’t all manage, what’s the solution ?
Well Lupus is worse than Stills and I think mine must be mild or else I’d never have managed.Until my 50s flares were rare so as long as was careful with lifestyle and protected my joints it was more a case of just accepting the disability side of the RA, can’t open bottles, tins etc mundane stuff. Since menopause it’s been harder to manage but just had to slow down a bit so with housework for example one task a day, Hoover Monday, beds Tuesday sort of routine and in bad days just rest. Seemed to have flared a bit since vaccinations but could just be age and it’s worth it to be protected.
Oh wow that’s amazing! Well done! Atm Im on hydroxychloroquine and have had a steroid injection. However I still struggle with opening jars, peeling potatoes, ironing etc.
I am trying to drink fresh juices with kale and spinach (apparently it helps)and I try to rest when I do feel bad but can be difficult at times as I have 2 very active boys under 5.
Ps: I’m in no way suggesting one should try to manage, we’re all different and at different stages of our afflictions. Your own health care and GP visits etc will be a very different experience and more positive than mine, especially as my diagnosis and initial flare was over 40 years ago.
Whisperit and the other members have given you very good advice regarding contacting your rheumatology or lupus specialist nurse and being prepared for appointments.
You have done the right thing in reporting your symptoms. Being newly diagnosed can be overwhelming and patients can sometimes find it difficult to challenge a doctor when they don’t feel their concerns have been addressed during an appointment.
I have found an article on our blog which gives some helpful advice about getting the most from your medical appointments here:
LUPUS UK have trained volunteers, called Contacts, who either have lupus themselves or have a family member with the condition. You can chat with our Contacts over the telephone. If you think that this might be helpful, then you can request a Contact here:
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