Full Circle

[ViciousCirce]

I am here after a winding journey...I was diagnosed with fibro 15 years ago, then told it wasn't, went down multiple rabbit holes trying to figure out what it was, and now back to where I started...fibro diagnosis. I have tried almost every drug and they either don't work or the side effects were too bad to continue. Finally settled on IV lidocaine infusions and steroids. I've been on steroids for a while, they make me feel 20 years younger but not great to be on them for too long so Dr just prescribed Hydroxychloroquine. Hopefully, this one works. I’ve got a boatload of coping mechanisms and tools to manage the symptoms, but I’m looking for new ideas and a community to share stories and experiences with.

 

[sunkacola]

Hi @ViciousCirce and welcome to the forum.
I hope that this place provides you with some of the things you are looking for. Certainly, there are many people here who are happy to tell of their experiences and to give others suggestions and support. Feel free to ask ay questions you may have, or tell us your stories, or even just to vent or complain. We are here to help.

 

[SBee]

Hello @ViciousCirce and welcome from me too. I expect many of us here know the frustrations of waiting a long time to get an actual diagnosis, despite many months or years of symptoms, and you being initially led away from the diagnosis, and you now are back to the start again.

I am interested that you are now prescribed hydroxychloroquine. Is this for the fibromyalgia pain? I ask as have been on this a few months myself but for the inflammatory arthritis I also have alongside the fibro. Steroids I have had also when I get a bad flare in arthritis symptoms. As you say better in short term use if possible. Can be a minefield seeing if meds can help for longer times.

Good to hear you have worked on some coping mechanisms and techniques to help living with fibro. I hope you will find the forum helpful and supportive.

 

[ViciousCirce]

Hello @SBee thanks for the note!

Ooofffff that's an interesting question. For the past 25 years, every doctor has told me I have an autoimmune disease, but no one can agree on what it is. I fit 8/9 out of 10 markers (paraphrasing for simplicity) for Sjogren's, Sarcoidosis, Ehlers–Danlos and HPP. All doctors agree I have scleritis, endometriosis, restless leg, Raynaud's, neuropathy of unknown cause, granulomatous disease, osteoarthritis, tendinosis, hip dysplasia, and a few others.

I just saw a new rheumatologist for the first time who doesn't think it's autoimmune in origin despite repetitive positive ANA, CPR, and Sjogren's blood tests. He's the first person in 25 years to suggest this. He thinks it's a combination of fibro and hyperjoint mobility syndrome. I think he's partially right, but I'd be surprised if there isn't an autoimmune component in there somewhere. But he's the third doctor in 15 years to mention fibro so I'm going with it.

I have a slew of symptoms ranging from pain (muscle, joint, bone, nerve, organ), exhaustion/fatigue, brain fog, numbness/tingling, unexplained swelling, clumsiness and lack of coordination, old injuries flaring from months at a time for no reason, and others.

I have tried all the standard fibro drugs and none of them help hence ending up on steroids. I have to say the IV lidocaine infusions do help, although not how they're intended. I've been told if you have fibro they're supposed to help decrease pain. For me, it doesn't affect pain levels but reduces systemic inflammation and increases energy levels like crazy. I no longer have days where I can't get up off the couch.

I guess this is the really long way of saying that I don’t know why he prescribed hydroxychloroquine, other than nothing else is working.

How has hydroxychloroquine been working for you? They told me it may take a couple of months to see any benefit, was that your experience?

 

[SBee]

Hello @ViciousCirce
I think what strikes me when I look into autoimmune diseases, is how often people seem to have more than one condition going on. The second thought (and fibromyalgia whilst not known to be autoimmune falls into this category) of how many symptoms overlap.

I lack the blood markers of inflammatory arthritis, ( known as seronegative) but have a formal diagnosis based on examinations, x-rays and scans. So I may never actually have a more detailed 'name' for my exact inflammatory arthritis. I can also match you with the Raynauds, and also hypothyroidism. And osteoarthritis too. So I know the feeling of being treated for something when there may not be an accurate comprehensive diagnosis.

Whilst in no way an expert in medical matters, so I can never advise as such, just share experiences and knowledge following research, but I am surprised that your consultant does not seem to consider you having autoimmune disease yet you have the markers suggesting you do.

The hyrdroxy ( i shorten med names, can never quite recall the correct spellings!) is part of the dmard group of medications, or Disease Modifying Anti-Rheumatic drugs. I believe they can be used for connective tissue diseases as well though.

The symptoms you describe definitely rings bells with me, in the arthritis and fibro sides.
Am not sure inflammation \swelling is generally a fibromyalgia symptom? So that may confirm your thoughts something else is running alongside the fibro.

My rheumatologist dept will prescribe steroids to help with inflammation flares from the arthritis. But the hydroxy is designed to lower the immune system which will help inflammation to reduce, helping to stop our immune systems from continuing to attack our bodies. I also inject Methotrexate, another dmard medication.

I also take amitriptyline which has helped with the fibromyalgia nerve pains. Its hard to know of the hydroxy has effect on the fibro side as I started this much the same time as the amitriptyline.

But the hydroxy has indeed helped with the inflammatory arthritis side of things.
The methotrexate wasnt doing enough to help on its own, hence hydroxy was added alongside in October '24 and I would say it did take about 4-6 weeks before I felt an improvement.

Of course we all react differently to meds, some work and some dont as you have seen in the past yourself. I sincerely hope the hydroxy does indeed help with many of your symptoms.

I seem to be having too many flares of symptoms so am seeing the rheumatologist consultant next month to discuss the disease progression and meds. Unfortunately, for My own experience,in the UK hospital I attend the rheumatologist will not discuss either the osteoarthritis or fibromyalgia. Which is a total pain given the impact each condition can have on another.

Let us know how you get on.... And sorry for long reply! I always seem to have a lot to say!