Just a question??

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Jdpage1984

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I have been told that Fibromyalgia is not a progressive disease....why is my pain getting worse than it was when first diagnosed? For that fact all my fibro symptoms are far worse than when I was first diagnosed. I was diagnosed with fibro when I was 14 and will soon be 37.
 
They say fibro is not progressive. but the truth is the medical community knows so little about fibromyalgia that anything they say about it now could be disclaimed years from now. fibromyalgia is an umbrella term that covers so many different symptoms and levels of pain and fogginess and everything else that really there's no clear definition of it. They know so little that I take what they say about it with a grain of salt, personally.

that's not to say is IS progressive, either. That's the thing. We don't know.

If your symptoms are getting worse, there may be a reason for that, which is aside from your having fibro. If the worsening is significant, I would recommend getting tested for a few things that it could be, which are progressive. MS, for instance, is known to be progressive. Be good just to rule those things out.

Other than that, as we get older physical problems become harder, and that may also be part of what you are experiencing. Check out the post at the top of the General forum on advice for managing fibromyalgia, and start implementing as many of those things as you can. As time goes by, keeping yourself in the best physical health you can will help it not to get worse. Making sure your diet is healthy and adequate and getting enough exercise and movement are the most important things, along with doing your best to maintain a healthy mental state.

If your lifestyle has become more sedentary than it used to be, that may be causing this. Get out and be as active as you can and eat a very healthy diet and see if anything changes.
Best of luck to you!
 
I have been told that Fibromyalgia is not a progressive disease....why is my pain getting worse than it was when first diagnosed? For that fact all my fibro symptoms are far worse than when I was first diagnosed. I was diagnosed with fibro when I was 14 and will soon be 37.
I listened to an interview with a fibro researcher a while back - can't remember his name, but I think he was working with Curable - and he was saying that many have the rumblings of fibro for years, and then something triggers its full manifestation. Apparently, the average age range at which fibromyalgia is diagnosed is 35 to 45 years old, but most people have had symptoms, including chronic pain, that started much earlier in life. I know that for me, I'd been having some trouble for a long time but a car accident when I was 34 seemed to start the full roll-out of symptoms. That said, now that I'm managing my symptoms effectively, they are far less than they were when it all kicked off!

Sunkacola is right that the science around this condition is still very young, and there's loads we just don't know yet. I suppose it could be that your fibro is shifting - which might mean looking for new ways to manage it - or it might be that something has triggered a big flare that you can get a handle on and pull back, or - great advice from Sunkacola - there might be something else going on, so consider getting checked out. Has anything changed in your life over time, such as causes of stress, lifestyle changes, etc? I really, really hope that you feel better soon ☀️
 
I say I'm feeling much better than a year ago, my wife says worse....
I can call the time from first inklings of Ache and fatigue (set off 2011; flare 2016) to the fully fledged flare I spose I'm still in progressive flares. My wife sent me to the rheums just in time in Oct19. Since then, 45+ docs (finished with most of that), "15" physiotherapists (2 main ones) and 75+ treatments (ongoing) later, I'm doing/implementing everything I can as "fast" as possible. The positive progress, like for @Jemima is managing the symptoms effectively, and I can say (cf. my blog) I feel 90% well and have a pain of 1 of 7 a great deal of the time, and when I don't there is almost always a trigger which I can identify by careful analysis. Again, my wife says my pain scale is very different to others, my 7 is others 12. In the long run my feeling is that I am feeling better but also somehow running on the spot. March/April got me by my sleep problems suddenly increasing without me being able to see why, which greatly frustrated me. But it's all worth the running as it's the quality of my life that's improving, even if I'll probably never be able to work much more, at least not in my present job, which is a pretty demanding one...
 
Since then, 45+ docs (finished with most of that), "15" physiotherapists (2 main ones) and 75+ treatments (ongoing) later, I'm doing/implementing everything I can as "fast" as possible.
Those are all phenomenal numbers o_O I hope you recognise and give yourself credit for everything that you've achieved over this journey! All those appointments and poking and prodding are exhausting for the healthiest of people, so you - and your wife - have done incredibly well to get through all of that. I hope you continue to find helpful resources and do better and better ☀️
 
Thanks for the kudos/support! I used to call it a "doc-carousel" like others here do, i.e. passive. My psychotherapist corrected me that it was a tour de force, i.e. very active. That's probably what it looks more like from the outside at least. For me it feels like and I see it as - like all my many problems before too - a continual game of rummy which I am persevering thru undauntedly (mostly... o_O).
 
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