Diagnosed with Fibromyalgia : Hi all its been a... - LUPUS UK

LUPUS UK

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Diagnosed with Fibromyalgia

Yellow-Petal
Yellow-Petal

Hi all its been a while since last post. Just thought I'd update you. I has my second visit with Rheumy today and he has decided as all bloods are normal apart from low vitamin D. He said you do have some syptoms of Lupus but bloods are ok showing no inflammation. I have Oestoarthritis not Rheumatoid. Said i have all the symptoms of Fibromyalgia. He's going to write to my doctor to advise medication for me to manage it ans will get his secretary to post me some information.

Im a bit lost for words at present. He said a lot of things about fibromyalgia but to be I hardly took anything in.

Thanks for listening and all your support throughout the months.

XX

15 Replies

Hi Lynn-Elea... So complex all these conditions! I'm certainly seeing that as in the throes of consultant appointments for diagnosis and due my next apt with rheumatologist end of September. Hope all goes well and they get you on the right medication. Xx

It's certainly is. I just hope I can get back to feeling like I used to before this took over my life.

I hope all goes well with your appointment and you get the help we all so much deserve.

Thank you

It's kinda frustrating isn't it, I've had hair loss, inflammation, joint and muscle pain, malar rash and itching arms for 3 months couple of years ago; fully expected lupus or sjogrens because of dry eyes and mouth, scalp and skin but like you negative ANA so that was it. Had muscle and joint pain for 5 years and assume it's all arthritis now. I had low vit D and told to take supplements for the rest of my life, sadly it made no difference to pain. I don't even think there are painkillers for fibromyalgia but I hope I'm wrong and someone helps you be able to deal with it. Best Wishes x

Your symptoms mirror mine exactly and like you I was suprised after only two visits to the rheumy he can diagnose fibromyalgia but total rule out Lupus. I asked about seronegative but he dismissed this.

I believe medication i will be prescribed Antidepressants which he said works on nerve pain and will help me sleep. Sleep will help the symtoms.

I'm going to stay positive and do all I can to beat this now I know. I asked him if fibromyalgia was functional his answer was no most definately not.

Good luck and thank you

Thank you for your good wishes, hope you see an improvement with anti depressants, I take Amitriptyline and I've tried pregabalin and gabapentin, the latter I only take one of as every time I try to build it up to three a day I'm so tired and the brain function suffers. I hope one day to get referred back to rheumy as after blood test results were negative that was my final visit x

KayHimm
KayHimm in reply to Yellow-Petal

Hope I can be helpful with this. You might want to research how rheumatologists distinguish between lupus and fibromyalgia. I read a good article on it and will try to find it. This is a big part of their practice. Apparently, they are referred from g.p. s to rule out autoimmune disease in patients with positive ANA and body wide pain in joints and muscles. On exam, the signs of fibromyalgia pain — although severe — are different. They look for many other signs like thinning hair, specific ulcers and rashes. The blood work is not just the ANA. Patients with systemic autoimmune disease will likely have an anemia of chronic disease. Lupus patients have low white counts and low platelets at times. These are the hardest illnesses to diagnose. Some people do evolve from fibromyalgia to lupus but that is apparently rarer rather than we think. Fibromyalgia is a real disease. Researchers are thinking it is more due to abnormal nerve responses than inflammation. So you can see why it is critical for doctors not to mistake the two disease. Immunosuppressant medications have major side effects and would only be used when absolutely necessary. I know this may be hard to wrap your mind around. We all want there to be a cute. But even those with lupus, undifferentiated connective disease and Sjogrens often have to tolerate symptoms because our doctors reserve the steroids and biological for more serious symptoms. Your doctor will be keeping and eye on you to watch for more symptoms. But in the meantime, I think you need to validate fibromyalgia as a real and life-altering diagnosis. You need a lot of support. We are here and you can also education yourself about the illness. I do feel that sometimes it is harder to be diagnosed with chronic fatigue or fibromyalgia than lupus or similar autoimmune diseases. Wish you the best.

Hidden
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I went through exactly the same last year. I had a positive ANA result, but I was diagnosed with fibromyalgia. I’ve tried Gabapentin and pregablin, but hated the side effects. Now on 25mg Amitriptyline which is helping with my insomnia, irritable leg syndrome, but not pain. Good luck with it all, and hope you get some relief from the symptoms.

I suppose the key thing is whether you feel fibro explains all your symptoms? You can have lupus without positive blood results and they do need to consider all the symptoms too. Did you take photos of rashes etc?

If the fibro treatment works and you start to feel better then that’s great but if you feel there’s more to it than that and you’re not getting better then it might be worth getting another opinion from a lupus specialist who sees beyond the bloods

X

It's very hard to get a diagnosis of lupus with negative Ana, at the minimum they like to see a medium positive ana, plus some very clear signs. Even with my high positive Ana, and anti ro, plus symptoms and signs, and meeting criteria, they won't diagnose me with lupus properly. I get undifferentiated connective tissue disease. But when I'm with my rheumy, it's called "mild lupus" (mild as in, my kidneys are fine). Ana negative lupus is very rare, and with no blood inflammation either, it's possible it's not lupus. Or it's the early stages and you need to wait it out. My anti ro took 10 years to go positive before that, even with my Ana being 1:1280 they said it was cfs. The best thing you can do is try some fibro meds, or go natural and use cbd oil, which is amazing and no med has ever compared to the pain relief I get from strong cbd oil. Watch your symptoms, but don't obsessed and work on eating healthily, exercise and mindfulness. All these will help. You can also monitor kidney function with urine dip tests, look out for protein and blood, as kidney damage is common with lupus.

KayHimm
KayHimm in reply to happyp

You described the process well. It is hard to be diagnosed with ANA lupus because it is rare. With new tests, it is well under five percent. Also, what you are also describing is that with newer tests, rheumatologists are trying to reserve the lupus diagnosis for cases that truly fit the picture within the systemic connective tissue disease spectrum. 25 percent of the population has elevated ANA. That is why so many people are confused when they have joint pain and other lupus symptoms along with positive ANA but are not diagnosed with lupus. You and I are good illustrations of what careful doctors consider even when they know you have autoimmune disease. Like you, I have a positive ANA, anti-cardiolopin, photosensitity and anti La antibodies. Like you, my doctor feels the most accurate diagnosis is undifferentiated connective tissue disease. Why? Because my ANA is low positive and I do not have low complement. It is not a check list. Rheumatologists place greater weight on certain signs and symptoms. As the person who described the entity predicted, I have had a milder course than most lupus patients. But I have been watched and managed like any patient with the possibility of things changing. How are you doing? By the way, my doctor also, when in a hurry, refers to « your lupus. »

happyp
happyp in reply to KayHimm

Good points. I think unless they see severe lupus, with kidney damage, of other organ involvement, they don't like to commit themselves to the diagnosis. But I've also found they refuse to associate many of my symptoms with uctd. I presented with some neurological symptoms recently, shaking, muscle weakness, jerks, etc and my rheumatologist denied it was in any way autoimmune related. Which I know is probably not true. My atrial fibrillation is also not related, apparrntly. For the tremors, I had to go through my GP to see a movement specialist and get a brain mri done, and she said it was likely dystonic tremor, but "not to worry", still waiting on the mri results. I see a rheumy once a year. So I've learnt how to manage my symptoms, I know what makes them worse. I monitor my ongoing protein in my urine, I keep an eye on my flare ups and take only cbd to manage it all but they actually discounted my 1:1280 Ana as "well lots of healthy people have a positive Ana" which they do, but not that high and that my anti ro was insignificant, even while pregnant. I had to change doctors and finally got my diagnosis and get monitored.

Bakbre
Bakbre in reply to happyp

Hi happy

Can I ask, ”what is cbd oil please?

Can it help nerve pain.

happyp
happyp in reply to Bakbre

Its cannabis oil. Minus the thc (the stuff that gets you high). It's absolutely amazing for muscular and joint pain. I've not tried it for nerve pain but I believe it would be just as good. You just need to find the right strain. And right dose. An indica or hybrid is calming, relaxing, great for when the pain is too much, helps sleep and anxiety. Sativa is more energising. Depends where you are in the world though, some places it isn't even legal yet. Even though it can't get you high

Paul_Howard
Paul_HowardAdministrator

Hi Yellow-Petal,

If you would like some more information and advice about a diagnosis of fibromyalgia, you could get in touch with Fibromyalgia Action UK - fmauk.org/

They also have a community here on HealthUnlocked that you may be interested in taking a look at healthunlocked.com/fibromya...

Of course you are still welcome here and we hope you will update us about how you are getting on. Many members here have (or have had) a diagnosis of fibromyalgia.

Hidden
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They must be blind if they "truly" think that Fibromyalgia isn't inflammatory/autoimmune when ME is now established as autoimmune. I have seen lots of inaccurate "research papers" by prominent doctors in the UK, (not particularly about SLE, or they are not in the US, like Mayo clinic) some of the things they seem to convince themselves are truly staggering and they tell us "patients are convincing ourselves this or that..." Doc, we know more about autoimmune diseases, you do not". This topic comes up very often. There ought to be a legal protection for patients for any missed diagnosis for potentially serious long-term disease(s) like Lupus and similar ones. Fibromyalgia is associated with many autoimmune diseases and it is likely it's part and parcel. It's not a rocket science.

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