Lupus or fibromyalgia?: Hello I have been unwell... - LUPUS UK

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Lupus or fibromyalgia?

bathouse
bathouse

Hello

I have been unwell for over 4 years now.

Symptoms are fatigue, joint and muscle pain, optical migraines (never had them before) balance issues, headaches.

I am hypothyroid and have recently been diagnosed with severe dry eyes.

I have had several miscarriages and 1 premature baby

I have always thought my problems were ‘Autoimmune’ but have been told no as all blood tests were normal.

I went to the lupus unit at St Thomas in 2015 where my autoimmune screen was normal, discharged.

Recent bloods (whilst having my dry eyes investigated) showed a positive P ANCA, the ophthalmologist mentioned the possibility of lupus and referred me to Rheumatology, at last, I thought I was geting somewhere (been made to feel I was making things up in the past) was told at St Thomas’s that they could do nothing unless something showed up on the bloods.

Rheumatologist said that the P ANCA was not that raised, raised but nothing to worry about.

Diagnosed with fibromyalgia, said i disagreed, did not go down well.

Feel frustrated.......any advice please?

Any Doctors who i could see that may help, I am prepared to pay/travel.

Thank you

24 Replies
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What made you disagree? I am only asking because I may be able to help you because I have been alive long enough to have seen advances in autoimmune testing and to have gained a bit of a clue as to what rheumatologists are looking for.

bathouse
bathouse in reply to KayHimm

I just dont feel that fybro fits, I have severe dry eyes, hypothyroid, had 1 prem baby and several miscarriages, also ocular migraines, better on asprin (that i put myself on)

KayHimm
KayHimm in reply to bathouse

It may not, but none of your symptoms are specific to lupus. That doesn’t mean people with lupus do not have them. It may be helpful for you to think in terms of categories instead of symptoms. With autoimmune disease there has to be evidence of autoimmunity — inflammation. The treatment is very different and often with major medications. Fibromyalgia is a real disease — and debilitating. I can understand that you would wish for a more specific, concrete diagnosis. But sometimes that is not possible. It seems to me the rheumatologist is saying he is not seeing inflammatory disease. That is what they are looking for when referred from gps without a diagnosis. Sometimes patients with lupus and other autoimmune diseases are given the diagnosis of fibromyalgia and later develop enough symptoms and blood work that makes the diagnosis clear. But these diseases are not as common as fibromyalgia, so the reverse is not often true. In other words, not many people with fibromyalgia turn out to have lupus. You can continue to pursue a diagnosis or work with your gp and report new symptoms. Your gp can always repeat tests when necessary. For now, you may find a fibromyalgia support group helpful.

bathouse
bathouse in reply to KayHimm

Thank you, but feel a lot of my symptoms could be lupus or Hughes Syndrome. Why do you say none of my symptoms fit lupus?

I may never get answers, that I accept.

nigelsmum
nigelsmum in reply to KayHimm

I was diagnosed with lupus - now umctd . I also have fibro. Sent to haematologist as I have very high levels of Antiphospholipid antibodies (Hughes syndrome ) he tested my thrombolia screening to see if these could cause abnormal clotting and this all came back negative so although I have loads of these antibodies ( and have also had 2 miscarriages I don't have Hughes) . Perhaps referral to haematologist ?

bathouse
bathouse in reply to nigelsmum

Thanks........all very complicated. I think I will just get on with my life and not let looking for some kind of diagnosis take over, dont think I want to see any more Doctors who dont listen, its all a waste of time, energy and resources.

Thanks for all of your replies.

KayHimm
KayHimm in reply to nigelsmum

I think you meant this response to go bathhouse. I will add, though, that your situation strikes me as completely different. The difference between SLE and UCTD can be a doctor’s style in diagnosing unclear cases. You do have autoimmune disease, though. Your doctors tested for anti-phospholipid antibodies — it is routine for a rheumatologist — and when they were positive, they sent you to a hematologist. Bathhouse was evaluated at a large lupus/APS center where they are most qualified to diagnose any autoimmune condition. I am afraid the hematologist will wonder why she is there. Certainly the NHS will not cover it. As much as we want a diagnosis, sometimes the disease — if it is going to development — takes time. Not fair to us patients! The more I read, the more I learn how awful fibromyalgia can be. No wonder people would prefer to have autoimmune disease even if it is more of a threat to health. At least we know what is wrong with us. I do feel torn as to how to help people here who are diagnosed with fibromyalgia and doctors have ruled out autoimmune disease. Yes, most of us were diagnosed with a viral infection, chronic fatigue or fibromyalgia in the initial phases. With a lot of people, I wonder if that was just a temporary diagnosis as doctors watched for more signs. In the end, not that many fibromyalgia patients go on to develop autoimmune disease. We all want help. I, at least, am not sure the best way. Hope you are doing well with your health issues. By the way, we are similar with UCTD and anti-phospholipid antibodies. It does make us fall into the lupus-like category.

nigelsmum
nigelsmum in reply to KayHimm

had lupus diagnosis first, this was then removed and given umctd, then added fibro. Sorry point I was trying to make is even though I have very high antibody levels I do not have Hughes

KayHimm
KayHimm in reply to nigelsmum

I see. That is interesting. I have low level antibodies but no clots. They call it anti-cardiolipin positive but not APS. Didn’t you have symptoms, though? Does the test the hematologist did mean you do not have the antibodies or that they just are not causing problems now? These antibodies are complicated, right? You seem to have good doctors.

nigelsmum
nigelsmum in reply to KayHimm

I have very high levels of antibodies but at present they are not causing me clotting issues. haematologist does not like term " hughes syndrome " - don't know why

KayHimm
KayHimm in reply to nigelsmum

Sounds like our doctors think alike. The terms Hughes or APS are not used in my case because I have not had a clot.

I feel your pain...my first arthritis doctor found the lupus then he retured..the new doctor has doubts thatvI have or had it. I said look at my records. Then threw in the fibromyalgia...well it's a push on your joints test. Guess what when lupus, inflammation has eaten up your joints aren't they going to hurt when you push on them with all your might...You might want to find another doctor that will use those bloodwork results to get you the help you need. Update new doctor took me off all lupus meds except methotrexate and now..inflammation has eaten my left hip up....find a doctor that will here you!

Stay in prayer.

Ms. Freddi

bathouse
bathouse in reply to Freddi1019

Thanks, frustrating to say the least.

Can anyone recommend a Doctor who actually listens to your symptoms?

Melba1
Melba1 in reply to bathouse

Which hospital’s are you near? You might need to go privately first. I received an excellent letter from a top rheumatologist recently about how blood results are not essential - and you have +ve ANCA.

If you don’t feel fibro answers all your symptoms, keep pushing for answers. You know your own body best. It might not be lupus but there is something going on and inflammatory/ autoantibody markers don’t always become raised in these diseases, there are other symptoms and markers that a top rheumy will look for - and hopefully listen to you too x

bathouse
bathouse in reply to Melba1

Thanks, who is the top Rheumatologist? Happy to travel.

I have had several autoimmune screens and this is the first time the ANCA has come back positive.......apparantly this is not significant.?

I have a very positive outlook, things will work themselves out.......eventually 🤞😁

Melba1
Melba1 in reply to bathouse

ANCA is often more vasculitis, ANA more likely lupus or related disease but blood tests are certainly not the whole story. I’ve messaged you some names - good luck x

bathouse
bathouse in reply to Melba1

Thank you x

I think the rheumatologist at the lupus center could and should have explained it to you. But I will take a stab at his reasoning. Fatigue, joint pain and migraines are called non-specific symptoms. They happen in many illnesses. If you have those symptoms and certain very specific auto-antibodies, then that leans toward autoimmune disease. If the rheumatologist dismissed the positive antibody test, that is because he knows the meaning of it and the titre. They look for many, many signs of inflammation like high sedimentation rate, swelling in joints, inflammation of membranes surrounding organs, characteristic skin eruptions. Even when you have autoimmune disease they cannot always be certain migraines and other symptoms are related. It is very complicated. You may end up having an inflammatory illness but at this moment the doctor is saying you do not. I can hear you are in a lot of pain and fatigued. But no doctor would give you the heavy duty medications used to treat autoimmune disease without knowing it is autoimmune in nature. If you would feel better, you should get a second opinion. Keep in touch with your GP so that you have someone who knows you and can see symptoms developing. Again, I can’t diagnose you. It was just a guess based on the little you mentioned. It may be helpful for you just to look at criteria for diagnosis of autoimmune disease to see it is both clinical and lab based. Hope you get some help with your symptoms. I know it is hard when the diagnosis does not seem concrete.

Thanks, severe dry eyes, recurrant miscarriages, premature baby,hypothyroidism too.

My opthalmologist thought autoimmune.......ill keep positive and taking the pain killers 😀

KayHimm
KayHimm in reply to bathouse

Did the consultant at the lupus center send a letter to the ophthalmologist ?

KayHimm
KayHimm in reply to bathouse

That would be a good place to start. Make an appointment with the ophthalmologist to see if you can get a better sense of what is going on.

bathouse
bathouse in reply to KayHimm

Thanks, I dont think the rheumatologist is writing to ophthalmologist.

Dont think it would make any difference.

Blood tests are only part of the picture, often autoimmune disorders are seronegative, not showing in blood results.

You have many symptoms of Hughes Syndrome/ APS/ which is also closely linked to thyroid, sjögrens and lupus.

Have a look here:

ghic.world/

healthunlocked.com/hughes-s...

Hi, the dry eyes and hypothyroidism could point towards Sjogren’s Syndrome. It is a connective tissue problem. Perhaps take a look and see if that might help?

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