Why are Fibromyalgia Researchers Wasting Time and Money on the Obvious?

Why are Fibromyalgia Researchers Wasting Time and Money on the Obvious?

By Donna Gregory Burch


Donna Gregory Burch

Since I’ve been reporting on fibromyalgia, I’ve had the opportunity to interview some awesome researchers. Even though it feels like a cure for fibromyalgia is far away, there are some incredibly committed, talented researchers out there who are working so hard to help us. I think some of them want the answers just as much as we do, and their perseverance and dedication is paying off.

Nearly every month there’s another study hinting at the mechanisms causing fibromyalgia symptoms, or there’s more progress being made in developing new treatments. Reading about these breakthroughs is always exciting because it means fibromyalgia is gaining legitimacy, and we are slowly – albeit very, very slowly – moving toward a potential cure.

But for every one of those exciting headlines, there are others that just make me shake my head in frustration. Here are a few recent examples:

  • “Fibromyalgia symptoms can include breast pain”
  • “Female fibromyalgia patients experience sexual dysfunction and mood, anxiety disorders, according to study”
  • “Fibromyalgia sufferers have difficulty maintaining continuous sleep, study says”
  • “Fibromyalgia disability status linked to severe symptoms, higher medication use and physically demanding jobs”
  • “[Fibromyalgia is] worse than chronic pain alone, but exercise helps”

Let me preface the point I’m getting ready to make by saying this: On the surface, any reputable research into fibromyalgia is probably a good thing. Every study is another tick that we can make on our tally to prove fibromyalgia is real and needs to be taken seriously. It brings greater awareness to our cause.

BUT … could we please stop researching the obvious? Looking at the bulleted list above, how did any of those studies (and many others I’ve read over the years) get us any closer to a cure? How much time and money was spent on these studies to tell us things we already know?

Ask any woman with fibromyalgia – there are millions of us! – if her boobs hurt, and she will tell you, “Yes, and everything else, too!”

Ask anyone with fibromyalgia if they want to have sex, and most will likely say something like, “My legs hurt so bad, I want to cut them off, and I’m too exhausted to even take a shower. Sex is the last thing on my mind!”

Of course some of us with fibromyalgia have mood and anxiety disorders! When you feel like crud all the time, it doesn’t exactly inspire joy and happiness.

Ask anyone with fibromyalgia, “How’s your sleep?” and they will probably say, “Sleep? What’s that?” (To be fair, this is probably the most useful of the studies mentioned above, but other studies have confirmed sleep difficulties in fibro patients, so why did we need yet another one?)

Many fibromyalgia patients on disability would love to go back to work. Do you think they quit their jobs because they thought it would be fun to live on zero income for two years while the federal government took its time to decide if they qualified for disability or not? No, they stopped working because their symptoms were too severe to continue!

Ask anyone with fibromyalgia about their symptoms, and they’ll rattle off a five-minute (at least) list – pain being ONE of them. Yes, chronic pain is bad, but of course chronic pain plus 20 other debilitating symptoms is worse than chronic pain alone!

Why do some researchers continue to ask questions with obvious answers? And if an answer isn’t obvious to a given researcher, just ask a fibromyalgia sufferer. We’re more than happy to clue you in on our day-to-day habits and challenges!

So here is my message to every fibromyalgia researcher out there: Please don’t waste time and money confirming what millions of fibro sufferers already know from personal experience! Use your resources wisely because we are counting on you to help us!

I daresay most fibromyalgia patients just want researchers to focus their efforts on two questions:

  • What causes fibromyalgia?
  • And more importantly, how do I get rid of it?

If your research study doesn’t answer one of those two questions, please do us a favor and find one that does.

Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She covers news, treatments, research and practical tips for living better with fibromyalgia on her blog, FedUpwithFatigue.com. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.

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Authored by: Donna Gregory Burch

There are 18 comments for this article
  1. Stephen S. Rodrigues, MD at 5:41 pm

    @Ms. Burch
    I’m afraid that you as well as 95% of physicians I’ve talked to are incorrect. I would say 98%, but I will give many the benefit of the doubt. Some may be aware or know better but have not way to prove their the theory that muscles are causing all of this pain and misery.

    Fortunate I have this ability by virtue of the knowledge and experiences from these masters and their tools - hand-on therapy w and w/o needles: Hippocrates, Jesus, Travell, Hackett and Gunn ++ others.

    It is a simple experiment or test to run in the office that will help one to witness, feel and understand this concept. This can be proven right before your eyes with thin and hypodermic intramuscular needling with the correct set of instructions.

    You have heard of Jesus healing the wounded with his hands?? This is the same type of treatment. Touch activated natural healing of muscular dis-eases and diseases.

    The focus on muscles are taken off the table in the 60s when:
    1) “They” moved the diagnostic eye away from the true source and location pain - the muscular system.
    2) Then “They” moved the diagnostic eye to that of the false location of pain - the skeleton or nervous system, the blood, inflammatory, neuropathy or some believe system which can not be tested.
    3) Then “They” swept all of you, the failed cases under the rug or tossed them into a “wastebasket” by distracts, deflects, blames, shames and deny what people feel inside and their feelings.

    This present flawed paradigm has infiltrated every academic’s minds and they will even promote these deceptions leading irreparable harm and deaths.

    The pathology of chronic pain derived from sick, ailing and failing muscles can be compared to that felt by elite athlete who develop Overtraining Syndrome ie Muscular System Failure.

    Something to think about.

  2. Dave at 9:57 am

    Anon- you assume several conclusions. Who said fibromyalgia is the same in everyone. Even the genotype of cancer cells is varies in each individual. Isnt it amazing that not everyone has the same genes- yet we are still human.
    Should everyone with fibro receive the same exact treatment? And who says medical research shouldnt focus on n equals 1 studies. Not a single cause for any painful condition has been found. This simple linear thinking isnt working for people in pain. The medical research paradigm you believe in is a costly failure. Researchers dont ask a whole lot of questions as you say= for example what is the role of macromolecular crowding in fibro or the role of the kynurenic pathway in fibro. Researchers have a narrow focus in fibro.
    Your comments suggest you believ ein a one size fits all approach. Its time for science to focus on individuals who suffer as populations dont share consciousness and the same exact.biosocial characteristics

  3. Anon at 7:52 am

    You can’t just ask someone what their symptoms are and decide that it’s something caused by fibromyalgia for everyone.

    What if I ask someone who happens to have both fibromyalgia and undiagnosed asthma of a completely unrelated origin about their symptoms. They’ll probably tell me all about their wheezing and shortness of breath, but that doesn’t somehow make it a fibromyalgia symptom. What if someone has both fibro and schizophrenia? If I just asked that person about their experience, I might come away thinking that fibro causes people to hear voices in their head.

    It takes actual data compilation from multiple people and comparison to data from people without fibromyalgia to actually know whether there is a causal link to the specific symptoms.

    As another example, fibromyalgia is associated with both high stress and chronic depression, each of which come with symptoms of their own. In order to adequately define with fibromyalgia actually is and have a more complete understanding of the disorder, the symptoms of fibromyalgia must be untangled from the symptoms of simply having high stress or depression.

    Most of these things you see aren’t from researchers setting out to start a study asking “do fibromyalgia patients have sore breasts”. For most diseases, these sorts of conclusions generally from large studies where a whole bunch of different questions are asked or tests are run. People then sort through the data and try to piece together what things are correlated in most cases.

    In any case, these sorts of things need to be published in medical and scientific literature and based on actual data or evidence that passes peer review. The medical community doesn’t work on the experiences of single individuals, which are extremely unreliable, it works with larger datasets.

  4. Dave at 7:05 am

    Donna- the centralization theory-neurocentrism- of fibro is the new kid on the block- and has failed to prove there is no peripheral pathology in fibro. Neurocentrism came along after traditional explanations and theories failed to do much for fibro. If the neurocentric theory of fibro were correct then tcms,cingulotomy, intracerebrellar injections or intrathecal injections would be the way to go. I say neurocentrism is a case of the tail wagging the dog- and dangerous as it essentially says fibro is an all in your head-and gee when have we heard that before. It sugggests a mind body split. Certainly there is a relatively untapped market to fix peoples brains with drugs, implants and devices.

  5. Donna Gregory Burch (author of this column) at 2:11 pm

    Dr. Stephen Rodrigues, the source of primary fibromyalgia pain is NOT in the muscles. That is the old explanation of fibromyalgia pain, dating back to the 90s!!! Yes, it’s true that SOME fibro pain may be caused by tight muscles and fascia, but research has confirmed that our primary pain is NERVE pain, caused by the brain not properly interpreting the body’s pain signals. That’s why they prescribe drugs like Lyrica and gabapentin, which work (not very well in most people, mind you) on NERVE pain. The real debate now needs to be over what’s causing the overreaction of the brain/nervous system. If our pain was originating in our muscles from simple inflammation, then anti-inflammatories (Tylenol, Advil, etc.) would give us some relief. As anyone w/ fibro will tell you, taking an anti-inflammatory for fibromyalgia pain is a complete waste of time. We might as well be popping Skittles.

  6. Natalie at 11:13 am

    I’ve been diagnosed with fibromyalgia longer than anyone I’ve ever met. I however suffer from chronic migraine and now it seems a new symptom. My neck and shoulder muscles seem to be hardening. There are no specialist in my area.

  7. joan hamm at 8:59 pm

    Dear Steven. Boy did you hit the nail on the head! As soon as I hear back news the pain attacks badly. Sometimes it takes days til I can do an errand. Mostly due to the stress. BUT what caused my disease is my shoe got caught in a floor grate that was sticking up about an inch. I pulled the grate out of the floor flew across the room like Superman and knocked chairs over and candy machine broke in two..landed on other side of the room flat lime fljpping a pancake real hard. I was in shock and thought I had broken bones many places. But the way I landed I got severe internal right foot and right calve nerve and muscle damage. Gave me Rsd/Crps internal injuries. 6years ago at work! The girl who worked the day before walked around the grate all day..never warning the next employyee who worked. I was alone. Stupidly did not go to Dr or 911 due to the disease takes about 3 days to hit hard. I could not move my toes and completely numb. Foot turned Navy blue and I was screaming in pain. There is more but anyhow I could not get workmans comp even though the girl saw the grate. She refused to help cause I was mad at her for not warning me efc etc. I was CHEATED out of so much due to her and my normal life ended. Been thru hell with Drs etc etc ever since. I was abused more than once. I could write a book. Anyhow thats how one gets RSD from an impact injury. It took five months and tons of Drs out of state and abuse til I was diagnosed. But you are right bad news sudden stress will create severe pain instantly even if I just took my meds.

  8. Jean Price at 8:51 pm

    Just one point I’d like to hold up…I think people who live with daily pain for ANY medical reason….disease, injuries, failed surgical treatments, etc…..ALL have multiple other medical symptoms and disease processes too! For instance, Rheumatoid Artritis has its own fatigue, and cardiac issues; osteoarthritis can spill over to multiple muscle, skeletal, and tendon problems due to the degenerative effects and the inflammation; failed spinal surgeries can produce gait changes and muscle problems, plus neuropathy and spinal stenosis, both with a range of symptoms and concomitant problems; injuries can result in muscle atrophy, neuropathy, myeofacial involvement, and other multiple system issues depending on the site of the injury….so comparing fibromyalgia to the specific entry of “chronic pain” as if chronic pain is “pain alone” is a bit of a misnomer. Sadly having a condition or injury with pain as a symptom seems to always have other dimensions of medical problems and care needs, plus many far reaching physical and emotional impacts. When we look at their common ground…pain and invisibility…I think we can honor the fact that pain, like any medical problem, is NOT a contest, and each person’s struggle is as great as the next person’s…because it’s theirs!

  9. joan hamm at 7:59 pm

    Dear Donna… God bless you for educating people…from what you know. And I know you want to know more and deserve to. As all of us pain Sufferers want the most is Help.!!! Proper meds to ease our pain and cures… Even litlle cures at a time we would beg for. I cannot even think of proper words to use to explain how bad the suffering is. People who don’t have a pain disease never can understand what we go through. It’s not their fault….but I get tired of explaining why I walk funny or stare into space when a pain hits or I forget something. It’s because I am Hiding the stresses… Pains starting or thinking I want to collapse right on the closest sofa or bed. Some families can’t handle their loved ones being ill or they don’t understand it. Therefore we suffer more knowing we are hurting them and hiding this is hard so I visit less or don’t visit too long. Driving home we cry and feel so alone and worried. One of my family lost appetite and weight due to worry. About me but also the economy. If the governmrnt wants to reduce our pain meds by 25 % over the next 3yrs. We will suffer even more. Enough is enough. I see drug dealers off and on at Walmart parking lot. One time I saw the exchange to young boys on bikes. Where the heck are the police if I see it they gotta know it’s there. But instead they call us pain Sufferers opiod abusers and not look where the real problems are?? Whew I am Done. Sorry folks.

  10. joan hamm at 6:43 pm

    Rsd /CRPS is a bit like fibromalgia. Each individual suffers from severe pain and varies per person yet so similar. This is double talk but somewhat true. We know so little about the disease we have. We rely on what we read or told by scientists who we question as well. Sometimes on these sites we learn a lot from each other. Example I did not know that Methadone is a really bad drug until I read it here from the pain Sufferers. I think rehabs use it to help people detox slowly?? I thank all of those who have shared their story as I have too. But there is much more I can add to my story but geeeze the comments I make get so long. I hope I helped someone with info. Fibromalgia is more common I hear from people and I often wonder if they may have RSD/CRPS??? We need to get to our politicians to fight for more funding in the study of these diseases.!!! I am not exagerating that every time I do my errands I meet somebody who suffers with pain. Most of the time mine is much worse… I don’t tell anyone that. It’s a wierd disease like fibromalgia one feels ok to go out and to look at us no one knows how severly we suffer. Again most all the Doctors I went to in the beginning knows nothing about this disease. So are they mistreating some of their patients. Krissy every one of your comments I learn something from..yet you are in the dark yourself. It is HARD!!!! What do we believe??? Education and more funding is needed to help us. Somewhere I read nerve and muscle damage can be reversed????? ???????

  11. Angella Anderson at 1:53 pm

    Donna, Thank you for this! I am 52 years old. My mother is 72. She has been battling fibromyalgia since i was young, and it had no name, other than it was all in her head. It manifests in her shoulders and hips. She also has colitis and arthritis is several parts of her body. She has been diagnosed in the past few years with parkinsons and is now been experiencing dementia. She has been in pain most of her adult life without relief.
    I was diagnosed with fibro about 5-6 years ago. I had all the trigger points but never realized it. I just thought i had tight muscles and was tired from stress.
    I do believe that stress and trauma plays a role. I’ve seen it with my own eyes in my mom and myself. I’m not convinced that what Steven says is true about where, because I’m not a runner but i am seriously affected from the hips down.
    I believe that traumas such as abuse plays a role, in fibro. It was brought up by a psychologist who practiced biofeedback and confirmed bt my counselor who is a trauma counselor worn her own clientele with fibro.
    I believe there is a correlation.

  12. Rhea at 11:30 am

    You are so right, Donna. We go around in circles, which doesn’t help us AT ALL!

    Steven, I’d like to know more from you!

  13. Stephen S. Rodrigues, MD at 11:05 am

    Educational Alert:

    Modern medicine has always had the answers to almost all pain problems. All of these solutions are actually at your fingertips and under your noses.

    Think muscles!

    Fibromyalgia is primarily a muscular derive pain and dysfunction syndrome. FM is much more complex that other muscular derived pain syndromes but still muscular in origin.

    The other 10 different organ systems cannot impossibly be the most common primary source of pain based on the laws of human pathology of diseases: Integumentary, Skeletal, Nervous, Circulatory, Lymphatic, Respiratory, Endocrine, Urinary/Excretory, Reproductive and Digestive - cannot produce pain signals by our DNA design.

    From the beginning of time man has always treated pain in the body with physical therapy. Pain in the body is sourced in the muscles. Thus muscles are the most common primary location of pain that everyone will feel caused simply from living.

    The proper treatments are full forced, spectrum of hands-on PT with and without needling. If these treatments are masterfully applied the force of efforts will stimulate the natural forces within which will “attack” the pain causing micro-scars.

    The natural healing forces will allow the skeletal, secondary signs and symptoms to return back to a normal.

    I hope this clears up some confusions. See Edward Rachlin, MD

  14. Linda Braid at 10:15 am

    It would be great if there were a treatment or even a cure sometime soon, but this rant ignores something basic about how science works. If one research study has shown a result, that result must be replicated by other researchers before it becomes scientific knowledge. That is why you may read the same conclusions being announced over and over again. Otherwise, mistakes and even fraud become the basis for future research.

  15. dave at 7:42 am

    Donna- you made some insightful points on fibro. I dont agree that researchers are looking for a cure. Researchers just want to do research just as doctors just want to treat diseases. Cure is a four letter word in medicine. Just like the cures inititative- its puffery for if you read the bill- theres no real effort directed toward cures.
    Frankly fibromyalfgia research is in a state of chaos- the reason is clear- no one is repsonsible for fibromyalgia in the U.S.- the buck stops nowhere. There is no effort by researchers to settle disputes in research. There is no requirement for those involved in fibromyalgia to work together sans egotism to lower the prevaelnce of fibromyalgia. I dare say practitioners and researchers alike consider fibromyalgia rthe natural order of things and balk at the idea of making an effort to prevent it or cure it.
    Its time to take a real look at fibromyalgia in our society- clearly there is a decent amount of economic gain from doing research and treating such- but certainly no real financial incentive or moral calling for society as a whole to wipe out fibromyalgia.

  16. Steven Blake mba at 4:27 am

    The cause and “cure” of Fibromyalgia is already known. I formed my own theory on it and several others have come to the same conclusion at around the same time. Even the Fibromyalgia association has come to the same understanding. Fibromyalgia is a safety shutdown of the individual, caused by the nervous system on constant overload from a person who constantly pushes themselves to the limit.

    The illness is unique to each individual because it is their nervous system shutting them down and making them immobile. It is designed by your nervous system for you and to have the maximum effect. So if you like watching the TV you will get light sensitivity, If you run it will affect your legs. If you think too much you will get brain fog. It will keep adding to the list the more you ignore its attempts to slow you down and make you rest. This is why any research focusing on symptoms is a total waste of time and will lead only to the suppression of that symptom temporarily whilst the nervous system finds a way around it.

    There will never be a Pharmaceutical cure because the symptoms are unique to the individual and as each drug costs millions to develop it is never going to happen, on a per person basis.

    The answer is already here but may be unpopular and therefore ignored or a better one hoped for. It is the driven personal trait of the person that causes the body to shut down from constant stress and overload. Your body is switching you off and providing pain to make you rest up. That doesn’t work for driven people who fight through the pain and fatigue so it gives you more pain and fatigue. This cycle continues until you are racked with pain and fatigue. You cannot be a Fibro warrior because that is the opposite of what your body needs. This is not an illness to fight, because you are adding to the need for it by doing so.

    Yes this is a real illness, it works similar to the effects of stress and trauma damaging parts of the body and increasing sensitivity. It is no different to a heart attack or stroke - in fact that is the very thing your nervous system is trying to protect you from. It doesn’t want you dead and thinks that is what you are driving yourself to.

    You will not escape this illness by waiting for a different theory - that is never going to arrive.

    Everyone with Fibromyalgia is like a car driving at 100 miles an hour in a 50 mile an hour zone. The Police pull you over at each layby for 15 minutes and instead of that slowing you down you then set off even faster trying to catch up. Only to be pulled up at the next layby for another 15 minutes. This goes on until the car dies. Meanwhile people going within the 50mph limit pass you and yo can never catch them up. The Police are looking after everyone on the roads by keeping them to a safe speed! (the police are your nervous system).

    So the good news is that there is hope. I personally studied this illness for 5 years and have helped many people on the road to recovery. Some started recovery just from hearing the theory, others just need a little help to reset and calm their nervous system. This can be a permanent recovery as long as people don’t overdo things trying to make up for lost time. And yes a few have got the illness back. How? By really not listening to their body and totally overdoing things yet again as is their nature and why they got ill in the first place. Only they can do the right thing, will you?

    So please can you all stop looking for the answer in the wrong place when you already have it.

    Love always, Steven

  17. Joan at 4:02 am

    You’ve said it very well Donna, I had to back up and look at your name 3 times before I remembered it. I feel like I know you, I get your emails, and yet I can’t remember because of the brain fog. You definitely inspire me to keep pushing on. And yes I would much rather be working and having fun than, being forced in to being an introvert. Have a lovely weekend!

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