Fibromyalgia Research – It’s Worse than Chronic Pain Alone but Exercise Helps

Fibromyalgia Research – It’s Worse than Chronic Pain Alone but Exercise Helps

The disease burden on Fibromyalgia patients is worse than it is for chronic pain patients without fibromyalgia.

FibromyalgiaAn online study of 472 U.S. patients released in the May 16 online issue of Pain Practice showed that Fibro patients – quite simply – have it tougher.

They take more pain medication and have poorer health status, get less sleep and have lower productivity in addition to being more expensive to treat.

They looked at three groups in the research: fibromyalgia patients, chronic pain patients who don’t have fibromyalgia and a group that does not suffer from chronic pain.

Caroline Schaefer, M.B.A., from Covance Market Access Services in Gaithersburg, Md., and colleagues conducted the survey which was funded by Pfizer, which makes and markets Lyrica to combat fibromyalgia.

An estimated five million Americans suffer from fibromyalgia, which is the most common muscoskeltal condition after osteoarthritis. It’s characterized by muscle and joint pain and fatigue, as well as other symptoms.  Women are much more likely to have the disease than are men.

In another study released earlier in May, it was reported that exercise may prove to be an effective treatment because it activates brain centers associated with pain modulation in patients with fibromyalgia.

“Acute exercise did result in a somewhat temporary improvement in centrally mediated pain modulation, and importantly this was without exacerbating pain symptoms,” said Laura Ellingson, PhD, an assistant professor of kinesiology at Iowa State University, Ames.

Dr. Ellingson presented the finding at the American Pain Society (APS) 34th Annual Scientific Meeting in Palm Springs earlier in May.

The National Pain Report, in observance of Fibromyalgia Awareness Day on May 12, featured three fibromyalgia sufferers – all women – who shared their stories about how they fight the disease.

Darbi Beals Stolk is a former registered nurse who lives in Texas. She has suffered from fibromyalgia for at least twenty years. She now coaches people, many of whom have the disease and she shared some tips for how she and other cope.

Jenny Schwarz lives in East Helena, Montana. She attacks her fibromyalgia with a brush – a paint brush. She literally tries to – as she told us – paint her pain away.

Anna Flynn is a retired schoolteacher living near Houston. Her suffering has been eased by two man’s – or in her case woman’s – best friends: Her two dogs.

The National Pain Report also featured stories on a new drug in development for restorative sleep in fibromyalgia patients and on a study from the University of Michigan that finds Fibromyalgia is a lifelong central nervous disorder.

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Authored by: Ed Coghlan

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I’m grateful for this research as it represents an attempt to better understand a complex condition. Keeping an open mind about areas where pain patients are similar and where we are different is key to new insight, and, hopefully, more effective treatments.

Whatever commonalities assigned to the chronic pain community, there is the undeniable reality that at the end of the day we are individuals. Issues of access to care, social support, economic status, even genetic makeup, among others, equates to unique personal profiles. We do not all share the same pain experience.

Painting with a broad brush has not resulted in better care for the millions of chronic pain sufferers. In fact, it’s been a setback for many. Consider the near-constant pairing of “chronic pain” and “drug abuse”. This mantra, a result of population-based modeling analysis, is cited by lawmakers, press, and public in demands for mandatory monitoring, blanket drug screens, and costly abuse-deterrent formulations for ALL chronic pain patients (without regard to an individual patient’s profile or risk factors).

It’s time we pushed back and asked for legitimate research that differentiates subgroups and experiences along a pain continuum. This study represents such an attempt and should be applauded. As a fibromyalgia sufferer with several comorbid conditions, I appreciate its empirical approach. The data supports what I experience: a confluence of pain conditions creating pain levels beyond what doctors “expect” for any one condition.

My suggestion for further research – examine the nature of “rolling” pain, that is, pain flares cycling through body systems. Doctors tend to see it as a form of hypochondria, further enhancing stereotypes of chronic pain patients as lazy, overemotional, and exaggerating. But it could very well be that fibro (or another factor) is acting as an orchestrating agent.

One thing I take exception to – the notion that exercise is the answer. My rheumatologist insisted I try tai chi. A few simple movements in a “gentle” program landed me in a neck brace (fibro is not the only medical problem I face) for two weeks and costly injections from my PM dr. Rheumy response: “well, if a movement causes pain don’t do it.” Duh! Totally missed the point. Little movements = big setbacks. And for me, repeated at multiple sites head to toe. I’m glad for those who find exercise beneficial, but it’s a detriment when it’s expected of patients whose bodies can’t cooperate. Which is exactly why we need differentiated understanding and personalized medicine!

I have fibro, SFN, osteo, DDD in my back CFS, diabetes, a-fib, a-flutter and some others. My rheumy thinks I may have PMR. I also have aortic valve stenosis. I still try to do some exercise but it has cut in half w/ the last Dx. I do not drive I am going try the exercises shown on WebMD

Obstetric epidurals and adhesive arachnoiditis.

It has been suggested that developing adhesive arachnoiditis after an obstetric epidural pain block is a very rare event, with less than 1000 cases ever diagnosed.

Yet when we look at the adhesive arachnoiditis community, women with the disease are far more common than men.

Why is that? Dr. Antonio Aldrete suggests that this is because 2/3 of women in childbirth opt to have spinal or epidural anesthesia, and he estimates that 4% develop adhesive arachnoiditis as a result of complications from epidural anesthesia.

If that is true, there are many woman suffering from this complication. With an estimated 70,000,000 children born in the last 20 years, this could result in 2,800,000 women who were totally disabled with this incurable disease, that is IF the rate is 4%. There are other sources that point to higher injury rates.

In addition, when researching common symptoms that women experience after epidural anesthesia (such as burning leg pain, which is consistent with arachnoiditis), then medical professionals need to ask some serious questions.

There is another disease that made an appearance in recent years, which for some unknown reason, affects more women that men.

Do you know what that is?


The National Institutes of Health estimates that 10,000,000 people have been diagnosed in recent years, and at least 80% of those diagnosed are women.

Could it be that many of these women actually suffer adhesive arachnoiditis as a result of an epidural during childbirth, and many have been misdiagnosed by a medical community afraid to admit they have affected a significant portion of the US population?

Now that there are 100 million Americans suffering chronic pain, the indicators are pointing to significant levels of injury that are being dismissed.

The spinal cord and cerebral spinal fluid flow system is the most sacred space, and too many doctors are sticking too many needles in this sacred system within the human body. It is time to question these outdated, barbaric procedures that are leaving millions of Americans permanently disabled.

MRI studies are not typically ordered after childbirth, and even if they are, there are not many doctors in the U.S. who are trained (or willing) to diagnose adhesive arachnoiditis because it points to their culpability.

No one could hide that degree of disability – or could they?

Arachnoiditis Survivor
Arachnoiditis Society for Awareness and Prevention A.S.A.P.
Lolo, Montana

All 3 were helped with nonmedical treatments, how is this not evidence that it is often a psychiatric problem? Your article says evidence leans towards it being a lifelong neurological problem, and this evidence is just not there. All of the supposed differences found between people with fibromyalgia and everyone else have been also found in others with depression or chronic pain. The survey used to diagnose fibromyalgia is overly vague and all self report, scouts honor. Not everyone is a scout.

Your comment is the most insightful and accurate summation of my past and present experiences.
I suffer from Fibro,IBS. RLS, and the list goes on.
I want to thank you for putting it in words that I could not! Well done

I was diagnosed with Fibromyalgia in 2011 but have suffered from it for many years. The doctors just said it was Arthritis but it didn’t show up in blood tests. I started with the pain when I was 17 and it’s got worse over the years. I have managed to work full time all this time but the pain got so bad earlier this year I had to go off sick. I have been off now since 2nd February 2015 and I can tell you it’s no fun. I am in chronic pain constantly with little relief at times. The doctors just don’t seem interested and look at me as if I’m making it up when I say I am in chronic pain. My medication has not been reviewed since it was prescribed in January 2011. I have asked for a review but all I get is we can’t give you anything else, keep taking the medication.
You do wonder at times if there is any one who actually believes you when you say how pain you are in. I do get depressed at times and I do wish I could be pain free, if only for a day. I try to carry on as normal as I can and there are days I do over do things and I know I shouldn’t but it’s so nice to be able to do some thing. I used to take my dogs out for 3 hour walks, now I’m lucky if I get to the top of the road and make it back home. I have a very good friend who comes with me now to take the dogs out just in case I struggle but I am determined that this Fibromyalgia won’t beat me. My job is a Health care worker and my company are keeping my job open for me for when I feel well enough to go back to work.

I see so many people in my groups that just lay in bed every day because of the pain. I suffer terrible and some days the pain is unbearable. But I am here to say if you do nothing but lay around your pain will be worse. You need to keep your muscles strong to be able to deal with it. I can’t walk without a walker but make sure every day I do my best to take short walks or some form of exercise. If I don’t keep my muscles strong I will end up in bed forever and that’s not something I am willing to do to myself.

When I traveled around the country talking to hundreds of people in pain I found out without a doubt, and everyone said this, pain and its effect on someone’s life is purely subjective. Quite simply, it’s up to the sufferer, or survivor. Many people would come up to me and say, “After hearing yours, and others story of pain, I feel bad in even bringing it up. My story is nothing to theirs!” To which I always answer,”Because pain is subjective everyone’s story of how and why they have chronic pain is equally bad…very bad.” Pain is not a matter of who has it tougher because it’s all very tough once you reach a certain point. It’s like saying “which is worse, the flu or a stomach virus?” It all sucks. I think if a study asks the right questions or gleans the right answers it will show that we are a “group” for one reason…the things we suffer through, not suffer with. We all share these afflictions for instance, the losses we have to live through and deal with, and believe me, there is a list and it includes; loss of recreation, loss of family and friends, loss of work and financial, loss of self worth and self identity. There’s more. There is also the guilt and shame we feel because we can no longer function the way we used to or provide what we used to. There’s more to this also. Then there’s the feeling that no one knows or believes how much pain we are in or that we are”faking it.” For this one we all have stories of names we are called and things we lose because others don’t believe us. There’s much more to this list also. The biggest thing we all share is that we all have a very sad story of suffering to tell. In the old days, if someone had any one of these stories to their history it would be talked about and shared by, not only every family member, but everyone in the community. If they still got things done despite their tale of woe they were talked about in heroic terms. That doesn’t happen to pain sufferers anymore. We are usually talked about as being ” a very sad case. I hope they are not just faking it for attention.” Ask anyone in chronic pain,”How are doing when you need medication?” You’ll get the same answer from everyone. We all share another important fact, we are all in more denial than the people who talk behind our backs. Acceptance is a key to healing, but who wants to accept a life in permanent and usually, incurable pain? Who wants to embrace the losses and face a future with o money and no friends and no more going out to have fun? who wants to try to adapt to all the changes in our lifestyle that we must in order to survive? Who can? We can and we must, all… Read more »

Just want to hear what others do to help with there fibromyalgia pain as my wife of 12yrs is suffering terribly from fibromyalgia and I can’t stand to see her suffer and will do anything to help her
Thanks, S Smith