What I am about to say is going to be very unpopular. Fibromyalgia, according to the scientific community, does NOT get worse over time. I know you're ready to write your response, but listen for just one second: According to the medical community, a disease that "gets worse over time" has "specific measurable results" that get measurably worse over a time period. FOR EXAMPLE: Alzheimers can be measured by the amount of brain tissue that "dies" and Rheumatoid Arthritis has a loss of use of joints when left untreated. There is physical damage. THIS is what the medical community defines as worse. They see (AND DON'T SHOOT THE MESSENGER HERE!) pain as arbitrary, in other words: my pain level of 7 could be your pain level of 3. They can't measure pain. And they can't tell if it is "getting worse" because there is no specific measurable, independent source telling a doctor you are indeed, worse. That being said, most people do experience their lives being taken over by the pain and their functionality decreasing. We even have developed the 5/6 stages of fibromyalgia, which shows a loss of daily functionality. I know this is a frustrating discrepancy between our experience of a disorder and scientific definition. I hope that explains why science says we aren't getting worse, when in fact, most people with FMS/CFS/ME do experience a loss and even worsening over time.

First of all, I'd like to say, according to the scientific community, 'fibromyalgia did not even exist'. So how could the medical community measure our results when they didn't even believe us in the first place, let alone listen to us. With all due respect. 🙂
Ive had fibro for almost 20 years. I look back at what I should have done, and that's move more, but back then I was told 'it was all in my head'. Well, I knew it wasn't, so I didn't know what was wrong. I think it's common sense that when you're in bed struggling with severe pain and utter exhaustion, that your body is going to suffer. And I'm talking about your heart, kidneys, lungs, not to mention your muscles going into atrophy. So, I believe, yes it gets worse. Maybe the people who are newly diagnosed now can get a handle on it before it gets really bad, bc there's a lot of info out there now. More support. So if you can't move from the pain and exhaustion, you get arthritis, your feet and ankles get swollen. What are they gonna say - it's from your HEART??!
God Bless everyone.

I have also gotten worse. My pain has increased, headaches, TMJ, costochondritis, tremors, spasms, Fibro fog, tinnitus, RLS, insomnia, etc, I didn't have any of this when I was first diagnosed, I only had muscle pain and weakness, fatigue, and IBD. That's what I mean, scientifically (current theories) we shouldn't get worse, but the problem is more that the effects (symptoms) worsen the longer the cause continues. Who knows why they'll say about this in another 10 years time, but based on current research (& from relating it back to my own symptoms it seems to be closer to the truth), this is generally a neurological disorder, not auto immune (although who knows - there's apparently a bio marker they've found that indicates Fibro in a blood test now??), not musculoskeletal as per original assumptions. And there's the vascular theory about blood vessels in the hands...?? Every single one of my symptoms can be explained by a neurological issue, even down to the rosacea on my face. I can't think of one event in my life that might have triggered it; I have had many periods of chronic stress, and many traumatic events, but really - so has almost anyone else, so that's an unknown for me.

@A MyFibroTeam Member That is the frustrating part of this disorder: all of the unknowns. Science only gives us theories and can't say for sure what factors within the body cause this syndrome. Their best guess, from the studies I've gotten access to anyhow, is a pain processing disorder. (Which we all are painfully aware of!) Sorry, I had to! But back to being serious, as of today no one can say for sure what the true pathogenesis of fibromyalgia is. Scientists have many working theories, and what you put forth is definitely one of the most popular among experts in the field. Science can make correlations about the development of fibro such as "the origin seems to stem from a significant trauma or stressor." Yet, there are many people who can't find this initial trauma or stressor, unless you count being born (but then we'd all have fibromyalgia!). Science is still uncovering secrets to the human body and I pray (I really do!) that we do have more information about this horrific disorder within the next 50 years. I think they will link it to several things that we have considered and a few we probably haven't. I hope then that we have more "measurements" to show that indeed, this illness is debilitating to 99.9% of us. Chronic pain of any kind wears on a person. You'd think by now that the medical community would know this and tell us but I fear the lawsuits would stack up against something they can't get a "standardized measure" for and the consequences of that are too scary to think about.

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A MyFibro...

Today I've been in pain so reading about what others are going through and feeling empathy for everyone here who is struggling with this disease and any other related problems that may go along with it, I find myself forgetting about my own self for awhile. That relieves my pain. I think it depends on the person and their own body chemistry, DNA, diet, support from health team or any combination of factors that determines whether this disease gets better or worse for someone or not. I got FM 20 years ago, and I was diagnosed 3 times in the first year. Since I lived near a large medical center, nobody doubted what I had. I was never given room to doubt myself either. But my life changed. I got FM after intense emotional trauma, so I was already on disability. I never had to persuade anyone that I had this disease, though I did have to educate my family about it. Over time, I found ways to cope with it, and slowly it improved, but only a little. This summer, it's gotten worse, but I'm seeing it as a challenge, not an endgame. My environment has changed, so I have to make some changes inside myself to adapt. It will be a learning process. Having moved to a new locale, I was taken off my opiates because the doctors here don't know me and are afraid to prescribe them to new patients because of the opiate crisis. They don't know I was never addicted and used them responsibly. I'll probably have to continue on without them, but I don't like the idea of taking so much Tylenol because of its effects on the liver, but it does help to some extent. I wish all of you who are suffering the very best and God's most ardent blessings. Gentle hugs to all you.