New member advice

Hello everyone

I do apologise i did post this on another thread and then thought after i should have made a new one, im a newbie..

Hope you dont mind me sharing my experience looking for some advice please.

I havent had a diagnosis of Lupus but i think my symtoms are similiar. I am waiting for my rheumatology appointment.

I was diagnosed with fibromyalgia 7 years ago by my GP. And 5 months ago have not really suffered a major bad flare up for almost a year. Yes i still had pain, aching joints muscle weakness and weird symtoms but they were managable from day to day where has before i could not even get out of bed most days. Now roll back aproximately 5 months ago i started with having allergies for no known reasons. These rashes would be most prominent on my face red small prickly spots felt burning across my both my cheeks when they start to clear my skin would go very dry and scaly, also swelling around my eyes. When this happpens i feel ill like I flu symtons, and have also been using an inhaler for the last 8 weeks because of breathing difficulties, shortness of breath, tight chest and palpatations i was in hostpital for chest problem and was told i had pericarditis, nothing came of that. I have hot flushes, dizziness, pain in my joints and they feel hot, chronic fatigue, left left on outer thigh get a big chunk that goes numb with sensation of burning, feel like i have knawling on my scalp sometimes. I have seen an allergy specialist and he diagnosed chronic uticaria and angiodema. Had blood test all normal apart from vitamin D deffiency. Have dry eye syndrome and always thirsty. My doctor says it sounds like a rheumatoid condition but im only being reffered to have my fibromyalgia condition looked into.

Im just wondering if the Rheumatologist will rule out other conditions?

I just feel quite isolated in this and find it difficult to discribe to family members how im feeling

Thank you in advance x

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  • "My doctor says it sounds like a rheumatoid condition" - that's a bit limiting! If he'd said "autoimmune" it would have made more sense!

    The difference? All rheumatoid disease is autoimmune, but not all autoimmune disease is rheumatoid. OK, call me picky...

    Autoimmune disorders are generally looked after by rheumatologists in the first line - so you are being referred to the right speciality. I would suspect that the original fibro diagnosis was wrong (as very often) - and now more autoimmune symptoms are emerging this will present a very different picture to the doctor. Much of what you describe could relate to a vasculitis, inflamed blood vessels, but the specialist will take all you describe into consideration.

    It might be a good idea to make a list of the various things you experience as a bullet list and if you have any rashes or visible symptoms take a picture so you can show the doctor. It isn't as good as them seeing them in the flesh, so to speak, but it will mean you don't forget them on the day, And perhaps a diary.

    The others on here will give you far better advice than I can - but this is start. Good luck.

  • Hi PMRpo

    Thank you for taking your time to reply its much appreciated.

    I did take photos of my skin rashes and showed them the the Allergy condsultant. The bullet points and diary are good idea-dont know why i didnt think about that in the first place - doh.

    Yes it is vague what my doctor said sounds like rheumatoid condition then just backed it up saying im being referred because of my fibronyalgia. This is a different GP practice to where i was originally diagnosed with FM. I have suspected my fibro diagnoses was wrong for a while but whenever i went to the GP i was always told its because of fibro.

    I do tend to lose my concenration and am quite forgetful. So i will follow the advice you have given me.

    Thank you

  • The lack of concentration and memory problems are typical of autoimmune disorders - but there are a lot of them. That is the trouble with a fibromyalgia diagnosis, too many doctor fixate on that and can't see past it. Which, when it was wrong in the first place, isn't very helpful!

  • I always put in down to fibro fog, yes i agree with the doctors being fixated its very frustrating though.

  • Hi Riachez,

    PMRpro has given you some really excellent advice. If you need any tips on preparing for your appointment, we have a blog article which you may find helpful at lupusuk.org.uk/getting-the-...

    If you need more information about lupus and how it is diagnosed, we have a free pack which you can request or download at lupusuk.org.uk/request-info...

  • I totally agree with whats been said. Many conditions overlap and the symptoms generally come out over time, so it can be a guessing game unless the blood tests are positive. Pictures, diary, and lists to keep you focused when you go back. Its sods law you will feel great when you see the doctor so you need evidence. The good news is that many conditions are treated the same. In the mean time. Pace yourself, take note of what affects you.

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