Lupus or not: I haven't been on this site for... - LUPUS UK


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Lupus or not

luupysue profile image
14 Replies

I haven't been on this site for sometime now as been very confused, I had been getting treated for lupus, raynards, syrogrenes, malar rash and other things by my rhumy for 5 years then on my last appointment in jan 13 I was told I had none of these it's just fibromyalgia (in his words) and he doesn't treat that. So I went back to my gp. I still have all same symptoms and have been ref to a pain specialist who I am waiting to see.

I should say I also have hypothyroid and today have been told I have a very low iron count so yet more tablets.

I am so confused and tired I could just cry. My gp has asked me if I want refered to the Rvi where I would see a different rhumy as my old one was in Alnwick, or do I want to leave it for now and see what happens, which we have been doing so for 13 month.

So sorry for the moan but I really don't know what to do

14 Replies
Purpletop profile image

I would just see a different rheumatologist ASAP - you've been waiting enough, as you said. What symptoms do you have, to suddenly not fall into all those categories as before?

How was the original diagnosis made? Did you have positive antibodies etc? I would askto see someone else.

dgleds profile image

Wow! Your tests must have shown something before...that's weird. I wonder if doctors are worried about disability claims and government stuff... Im not in UK anymore, but where I am there is lots of cutbacks on things...and wellI just wonder. if..

I read recently that rhumeys don't like to deal with fibromyalga (wrong spelling)....its a pain thing and not autoimmune...but sure seems autoimmune. My Dad had it long ago..and he told me some real storys about GP visits...

luupysue profile image
luupysue in reply to dgleds

Thank you for your reply.

I too have wondered if me putting in a claim and starting an appeal had anything to do with the sudden change of diagnosis as I only started the appeal the previous month.

It doesn't matter to me if lupus or fibro I just want the help and advice so I can try and stop this awful pain. I helped in the garden 2 weeks ago and my rash was awful worst it's been this winter, I've taken a photo for the new rhumy to see.

Anyway thank you.

behappy1 profile image

You should definitely get a second opinion. I understand that lupus could be tricky to diagnose when your not in a flair, but Raynauds and sjogrens would be a bit more straightforward as your fingers or toes would visibly change colour and the dryness is obvious? I really sympathise. I hope you manage to get sorted x

ijeasike profile image

I think u should have the referal. Ur better off cing another specialist dnt wait anylonger cos our condition doesn't give us that much time.

mstr profile image

Hi LupySue....that is soooo frustrating and completely understand how you feel. I think if you had a diagnosis then this is retracted it is so frustrating. I have had UCTD, then lupus/myositis then back to UCTD (with it likely being lupus) at the moment with hypermobility also mentioned now too. I like you sometimes think will they one day say fibromyalgia on its own......but remember fibromyalgia doesn't produce a positive ana like CTD does. Worth asking about this. I also think you are right to ask for a referral. I have learnt through this condition that we do know what it happening to our own is real/it is happening. This makes it feel as though our condition is undermined though I know fibromyalgia is meant to be bad too but how come your goalposts just changed. I accept that blood tests may go from positive to negative with an ANA test but if it is strongly positive once then you have an autoimmune condition. Fibromyalgia is not autoimmune to my knowledge? Just because we are stoic in dealing with our condition and bloods may settle down with meds does not mean that the symptoms are gone. What if we stopped all meds (I'm not advocating this at all...just saying because it would cause a flare many of us are in an unmedicated remission (not many I guess. So the condition is being controlled by meds....not cured, not gone, not diagnosed at something entirely different and the orginal diagnosis changed. Anyway I digress ....I would go for that new referral and check that the rheumatologist is experienced in lupus too. God luck xxx

Chapter profile image
Chapter in reply to mstr

Good rant mstr, I enjoyed that.

mstr profile image
mstr in reply to Chapter

Ha ha......I knew I was on a roll there......I was clearly on my 'soapbox' there lol.

bluebell99 profile image

It is possible to have lupus AND fibromyalgia. It does often go hand in hand.

It does seem odd though that you have been told after five years. If you had a positive reaction to lupus meds then surely that would be proof? Fibro does not get better with steroids, Plaquenil etc as these are specific for auto-immune conditions.

I definitely would get another opinion, and I would also ring your current rheumy's secretary to find out why the change of diagnosis. They are normally very helpful.

Good luck.

luupysue profile image

Thank you for your advice, funny someone should mention they wondered if putting in for DLA as it was then made Drs change diagnosis, I had just started an appeal and suddenly all illness was changed. Both my husband and I said bet it's something to do with the appeal. The rhumy was off hand, he said it was my problem on how to get the dermy to do a biopsy (dermy refused as biopsy was to be on my face and he could see it was malar rash or so he said, so refused to cut my face).

I've been under my gp since, on high dose painkillers, thyroid tablets and other pills to stop sickness etc and now anemia tablets, I've had god knows how many bouts of illness in the past year and been going further downhill, but the gp keeps saying she can see it is lupus and not checking bloods till this week. When she gave me the results yesterday she said there is a lot going on in my bloods but she needs to get iron levels up before doing anything else, and do I want ref for second opinion ASAP or wait see what happens mext.

I am going to ring her and ask for the referral to go ahead

Thanks again for advice

roobarb profile image

Oh luupysue, it's awful that you have had to go through all this! I know this doesn't help, but in the years I have been trawling the internet to get as much info as possible about lupus, I have come across a number of cases where people have been diagnosed, then undiagnosed & then even re-diagnosed again!

I've come to the conclusion that this is the nature of auto-immune disease. We desperately need more research to fully understand these conditions, but that is beside the point. If I were you, I would ask your GP for a referral to your nearest rheumatology centre of excellence. The doctors there should be able to give you some answers, where as your average rheumy (& yours sounds less than adeqaute) can have very little experience, or knowledge, of all the vagaries of auto-immune conditions.

Please stay strong, you will get through this. X

luupysue profile image

Thank you all for the replies, I've had computer problems and also forgot where I put my password book (silly me)

I have been busy getting an appointment for a second opinion but can't be seen till end May, I am now under pain management and start with them in 2 weeks.

So hopefully will start getting to the bottom of this.

dgleds profile image
dgleds in reply to luupysue

Ya stay on top of the specialists...some of them can even be lazy like or attitude much...Wish you all the best.

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