Fibromyalgia is considered the quintessential pain syndrome. The pain is unrelenting, difficult to treat and isn’t caused by some obvious structural defect.
Scan results do not always track with patients experiences. The reason may be “fibromyalgianess”.
A Michigan research group following arthritis patients undergoing hip or knee replacement or remodeling has found you don’t need to have full-blown fibromyalgia to have major pain problems – you just need to have something like it.
Like others in the field, they noticed that surgical outcomes often do not track what they see on their scans. Some patients with major structural problems are in less pain than patients with minor structural problems. Some patients with apparently successful surgeries aren’t have successful outcomes. Even after alleviating their structural problems some patients pain levels are still so high that their surgeries declared failures.
Something other than knee or hip damage is impacting these patients. That something appears to be a ‘proto-fibromyalgia’ state; not full-blown fibromyalgia but a lesser form of it.
The Study
Characteristics of fibromyalgia independently predict poorer long-term analgesic outcomes following total knee and hip arthroplasty. Brummett CM, Urquhart AG, Hassett AL, Tsodikov A, Hallstrom BR, Wood NI, Williams DA, Clauw DJ. Arthritis Rheumatol. 2015 Mar 13. doi: 10.1002/art.39051.
This study took almost 500 arthritis patients who were undergoing knee or hip replacement or remodeling and assessed their level of fibromyalgia-like symptoms. They removed everyone from the study who had fibromyalgia and then followed the rest of them for six months. At the end of that period, they asked them about their pain.
What they found was shocking. The patients with proto- fibromyalgia – the ones who didn’t have FM but scored higher on the FM questionnaires – started out in more pain and stayed that way. Usually, patients in the most pain receive the most relief from surgery, but the proto-FM patients received less, nor more relief from surgery, than the other patients.
Arthritis patients didn’t need to have FM to experience more pain – they just needed to have the beginnings of it.
The fibromyalgia severity scores predicted with a very high degree of accuracy (p<0.00001) the patients who were not going to improve much after surgery. Even patients who didn’t come close to meeting the criteria for fibromyalgia suffered from increased pain. The scores also predicted which patients for whom the surgery was deemed a failure.
“However, these data suggest that in some individuals with arthritis….. this … pain amplification is clinically relevant and might even be playing a more prominent role in a given individual’s overall pain experience”
The increased pain these proto-FM patients were in didn’t surprise this research group. A former study indicated that arthroplasty patients with a tendency towards fibromyalgia needed more opiates post-surgery than people without a tendency towards fibromyalgia. The same was true of women undergoing hysterectomies. If you have FM-like symptoms you’re probably going to experience more pain than usual after surgery.
Catastrophizing or depression or neuropathic pain were not the issue. These factors contributed toward poor pain outcomes in only minor ways. The best predictor of having higher amounts of pain after surgery was simply having FM-like symptoms.
The authors concluded the post-surgery patients in increased pain were probably suffering from central nervous system driven pain sensitization. In other words, you don’t need to have fibromyalgia to have central nervous system sensitization.
When those patients show up complaining about pain and asking for more pain drugs surgeons across the country are undoubtedly looking at their scans and shaking their heads. They’re labeling them with depression, anxiety or hysteria but the surgeon’s are looking in the wrong place. The problem was not in their knees. It was in their central nervous system.
These are not uncommon findings. Millions of people with poor surgical outcomes are undoubtedly getting inadequate or even harmful treatments and experiencing being ostracized. These patients are showing up again and again looking for relief. Their suffering aside, they’re surely a huge drain on the medical system.
The National Institutes of Health Missing the Boat – Again
The answer to these proto-fibromyalgia patient’s problems clearly lies in understanding fibromyalgia, yet the NIH continues to treat fibromyalgia as if it was a minor problem.
By underfunding fibromyalgia research, the NIH is missing the opportunity to help millions of other people in pain.
Like chronic fatigue syndrome (ME/CFS), fibromyalgia receives amongst the lowest funding levels of any disorder at the NIH. In fact, per patient funding for fibromyalgia ($1/per patient per year) is substantially less than for ME/CFS (@$5/per patient/per year.)
This study and others indicate, however, that “fibromyalgianess” probably plays a role in many chronic pain conditions. The authors stated their findings have “enormous economic implications”.
The NIH says they’re dedicated to improving the health of all Americans, but by essentially ignoring FM they’re ignoring the plight of many other Americans in pain.
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It infuriates me to no end to see my life is worth about a dollar, a dollar a year no less to the great NIH in America!
I move for patient fundings Cort. If everyone with ME/SEID and FM donated $25 or if the patient could not afford that amount of donation possibly they know someone they could count on to donate it for them. I haven’t done the math but surely it’s in the millions, right?
Hey Judi!
If the just the ME/CFS community did it – that would be $25 million dollars for research! Five times more money than the feds are pumping in now. Ron Davis could do his huge End ME/CFS research project with top researchers across the country several times over….
If the FM community kicked in – it would be about $250 million dollars for research ($25 x 11 million people….)
First we have to find them…This blog has about 5,500 subscribers. Phoenix Rising has about 13,000 Forum members…Where the heck is everybody?
We need to spend money to find them and get them hooked in…
Also. For whom should we donate to?
There’s Lipkin, Standford, Jarred Youngler, OMI etc…
About where the hell is everybody. Well I know 3 things:
First, I was one of those who came here just now and then before. I didn’t like to live the disease, to spend all the time researching for it and even reading about made me freel bad… So I would just get on with my life trying not to read about my disease untill it became necessary and I started coming daily.
Second, Theres a HUGE HUGE percentage of people misdiagnosed and most importnat, misinformed by the doc. Thinking they FMS or ME cause they’re stressed, and it’s their own fault and their own task to resolve it. I know I did for some time… Here in Brazil there ain’t no ME/CFS. There’s Fibro for some, but they tell you it’s because you’re too nervous or have anxiety.
‘Everybody’ aka people like me, with long-term chronic pain & fatigue (35 years now) are just getting on with living life the best they can (despite their symptoms), Cort.
While I’m interested in occasionally reading the latest research and theories, I’ve pretty much accepted that this is my life and since quitting full-time work and going on to a Government Disability Pension, I’d better get on with it.
Seems to me that some of us older folk, (61 this year), were caught on ‘the hook’ and now have escaped and moved on to a different line of focus.
I well understand how younger folk are desperate for cure and getting their old life back. But for me, life has changed forever and the new me has discovered that life with chronic pain, fatigue and other symptoms doesn’t have to be the End.
I’m embracing what I can do and ignoring what I can’t.
So while many sufferers have no idea of forums and sharing their thoughts with like-minded folk on-line, they suffer in silence and have no idea of the options of being included in trials and research. They don’t even know that they have FM because they’ve never, (or rarely), complained or been diagnosed.
They suffer in silence because they don’t want to be labelled a ‘wimp’ or hypochondriac.
I first came across the term Fibromyalgia in 2004 in researching IBS, but it was May 2006 before a spinal specialist doing nerve blocks on my lumbar spine actually spent some time taking a full history and had the knowledge and experience to make a more accurate diagnosis.
I think we could include the chronic Lyme community too as we are all having the same underlying issues. Avril lavigne just came out she had Lyme.
I hear you, feel the same way.
Remarkable idea!!
Let’s just do it! I am so ready to help further this venture. And I don’t believe just us would donate. Our family members, our friends, our caregivers — wouldn’t that make a huge difference??
How can we begin, Cort??
How about a big donation day on May 12th – International ME/CFS and FM day. Everybody gives something – no matter how small – to someone (????) We can list all the groups…
Yes Cort I think making a big donation to our choice of group would be best for this year since we are pressed for time to organize something more elaborate. A list of names to donate to would be good, then we can post this list on facebook groups, support forums and any place where there are SEID, FM, IBS, LYME, etc. patients asking them to make a donation on May 12th. I think I would make a $25 donation to UAB research lab and if I can specify I would kick it to LDN research. 🙂
You might think this is a stupid idea, but why not sell t-shirts with a message on them, say, for example, in honor of ME/CFS/FM/SEID awareness day. Wear your damn shirt everywhere you go.When people ask you about it, tell them! Just like breast cancer did, adopt a symbol. I have a pink ribbon and a rose tattooed on my chest right over the scar where my medport for chemo was. People comment on it, and I tell them, if they are women, to get their mammograms. If they are men, I tell them to remind the women they love to get their mammograms. My point is, we need to find a way to get this issue into public awareness. Personally, I would love to have a t-shirt that says something like “diagnsed with ME/CFS 15 years ago, and all I got was this lousy t-shirt.
they love to
I’m all for doing that too.
I just think we should think of a more remarkable number. That represents the disease like 18 dollars for the 18 tender points (not that because this criteria sucks hard but something in the way).
That would draw much more attention plus would result in a good slogan.
NIH Big Pharma, why would you fund something that could drastically cut your bottom line?
Nevertheless, down regulating the immune system in a “selective” manor is happening now, a major step forward, regardless.
More and more this all appears to be some form of Lyme, perhaps in conjunction with virus?
A form of treatment will come about, in spite of NIH. RP
Dear Cort,
To say I’m infuriated by this is an understatement.
I’ve been the patient looked at as “putting on” after major surgeries, I’ve been told I shouldn’t have this much pain, I’ve been looked at as a drug-seeker, I’ve been snickered at in medical offices by doctors and nurses alike. I’ve been told there’s no reason that I should have this much pain and what am I doing wrong that I’m taking twice as long to heal following surgery than normal?, I’ve been criticized for not being able to do the PT following surgery or any other time. I’ve been abused by the medical system my whole life and I’m now 66.
What they don’t know is how I’ve gone through painful surgeries, procedures and even natural child-birth without uttering a peep. I’ve been silent through the pain. If I ask for a medication, the pain is indescribable but no one can see that. No one can see a pain level on a blood test or a scan. To the medical system, I’m perfectly healthy and normal.
What this has done to me psychologically has made afraid to seek medical help. I don’t go to the ER, I don’t see a doctor for urgent care, I take care of myself the best I can. A month ago, I had extreme abdominal pain……but waited a full week before seeing a doctor. I had diverticulitis and a blood clot without knowing it but I didn’t want to be turned away once again for “having nothing”. This could have ended very badly, it could have ruptured.
I can’t be the only one refusing to seek help when I really need it for fear of being turned away once again and told “we can’t find anything wrong”.
My quality of life isn’t even worth more than $1 to the NIH.
We could easily raise money on our own for more research but who would we give to? Who would we entrust our money to use wisely?
I’ve spent thousands and thousands of dollars out-of-pocket to help myself have the best quality of life I can have. There are things we can do for ourselves but it’s a long road of discovery and it’s a very lonely road. There are genetics, central nervous system, brain and body connections, digestive and immune system dysfunctions along with lack of enzymes, vitamin and mineral imbalances. This doesn’t even address the foods we’re eating.
If I gave money to the NIH, what I want them to do with it? I want them to tell the medical system to stop blaming the patient because they can’t see the source of the pain on their medical tests. I would want them to develop some tests that would confirm what the patient is saying. I want the medical system to go backwards….to a relationship between doctor and patient of trust and working to find a solution and a resolution for the patient. I want the medical system to direct the patient to other sources of help outside the medical system even if they haven’t been scientifically proven beyond the shadow of a doubt to be effective for at least 30% of the people taking a given drug. I want the medical system to admit they don’t have all the answers and that not everything can be scientifically proven.
I want the medical system to stop putting people through test after expensive test only to prove there is nothing “wrong” with the patient except for psychological problems as yet unknown. I’ve met too many people who’ve been devastated by losing not only their health but their job, their home, their money, their family and friends and all that’s meaningful to them. They’ve lost everything…..this is about much more than a little pain that won’t go away.
I sound angry and negative and have lost hope that there will be help through the current medical system we’ve come to count on to help us in times of need. Our whole system of “health care” is way off base. The truth is, if I have a broken bone or an extreme health problem, I want to see a doctor and a surgeon. I want it fixed as quickly as possible and I’ll be thankful I have insurance to help cover the costs.
I talk to people who are sick, everyday, online. It’s been a learning experience for me! I’m not a professional and have no fancy letters following my name but I’ve had a lot of experience in healing modalities and have researched Fibromyalgia since I was diagnosed in 1994. I’ve learned a lot over the past 20 years but when I share with others some of the things I’ve done that have helped me, it’s generally met with the comment “my insurance won’t cover that so I can’t try that” or “my doctor hasn’t told me about that so I can’t do that”. I don’t push, I’m only planting seeds but it does get frustrating when I know that a sleep study and a c-pap will help the person’s quality of life and how vitally important it is for the long-term of life.
We’ve gone off-base by only trusting our Allopathic medical doctors, only willing to do what our insurance will pay for and only willing to use what has been scientifically proven and approved by the FDA.
I had my first experience of being in extreme pain and not believed at the age of 19 when an ectopic pregnancy ruptured in my abdomen. I was sent home from the hospital (still in pain) with the explanation it had something to do with my period. I bled internally for 4 weeks until another doctor surgically removed it. I have suffered needlessly.
Get this – the NIH only started tracking how much they spend on chronic pain a year or two ago. They did consider it worthy of tracking before then. Doctors in medical schools get almost no pain education yet pain is probably the single most common complaint they see.
Pain has gotten short shrift forever but the medical profession is slowly recognizing that it is a problem, for economic reasons if for no others, that must dealt with.
Check out this fascinating article that came out today.
http://www.nytimes.com/2015/04/05/upshot/when-moneyball-meets-medicine.html?ref=todayspaper&abt=0002&abg=1&_r=0
“Now people everywhere can bring “Moneyball” to medicine…..At last report, in the United States, measured by DALYs, the third-largest health problem was low back pain. Fifth is major depressive disorders. Eleventh is neck pain. Thirteenth is anxiety disorders. None of these maladies kill anyone directly, so they don’t even show up on a list of leading killers. But they still cause huge amounts of pain and suffering, and cost our economy billions of dollars in lost productivity.”
The NIH has been missing the ball on this for decades and it’s cost us a lot. We obviously have some allies in our corner, though..
Perhaps now that we have Morgan Fairchild as a spokes person, maybe she’d find big stars with millions to spare match what we (patirents, family, friends) could raise as an awareness day event. If too late for this year, then maybe next year?
I will never forget this hip replacement 18 months ago, screaming, wailing,gnashing of teeth. It was as though (and now, apparently so!) that I was on NO medication for pain, wailing at the PTs when they’d come in for me to walk, the gurney going down to X-ray as they’d hit bumps in the floor. (Thank G~d my body can’t remember the full pain!!!) After 2 or 3 days a nurse finally came in and had the coldness to say, “The reason you are in so much pain is because you’ve been taking so much pain meds that it isn’t working for you now. You need to quiet down.” At least 3 months later getting into the knee surgery I told the anesthetist EVERY THING. He assured me repeatedly that I would not have that problem. He also looked really disgusted when I told him what that nurse said. He asked, “Did you tell anyone?” I Said That’s all I was telling anyone for 3 days!!!”
I’ve heard it said I wouldn’t wish this on my worst enemy.
I would.
The subject of what it would take for a cure/treatment, was a discussion I had yesterday, with another CFS suffer. If we pooled together just the money we spend on TX., medications, supplements, that are not effective, we could most likely have enough money for a cure/treatment. The discussion centered on where best to invest the money????
Any suggestions would be helpful. Cort, I will begin by donating to Health Rising.
Happy Easter to All,
Penny
Cort, I just signed up to donate, but I do not want to use pay pal. I put in all the info. but wasn’t able to continue using my credit card????
I will not use paypal.
I have to reign myself back in when i get favourble study results because i remember the energy i used when Xmrv showed up on our radar. Friends and family donated very quickly to furthering the research necessary for the next step. We all know how that turned out.
The point of where to give the money is a big one. until such time as we get gov’t and big pharma funding in a big way we’re at risk of this happening over and over.
I think energy can be more wisely used to continuing ‘letter’ writing. Politicians take the cause more seriously for some reason when received by snail mail. That being said, email campaigns are better than nothing but care with spelling and grammar should be taken. Personalization goes a long way. It creates a little more acountability.
I so agree!Who do you trust with your money?Those few dollars we can afford to give on a limited income may notseem like much to some people, but to poor folks it might mean a few meals might have to be skipped. For a good cause, the right research group, certainly worth it. But I hate thethought of my meager income supporting the “lifestyles of the rich and famous”.
Not sure where my letter writing/fundraising comments just went. Hope they’re in the system and not deleted. 🙁
I wanted to add i had a complete and total abdominal hysteretomy (uterus, cervix, ovaries and tubes) last year through a hip to hip incision and was told more than once by different nurses and dr’s, it “shouldn’t” hurt that much. It was so offensive and needless to say, not very conducive to the healing process. Luckily i had talked to my surgeon prior to surgery. It wasn’t totally controlled but was much more than dr on call had me on during the 2nd day and night when tradionally they cut back on iv or needles. I also involved the anestetician who came up with painkiller cocktail to send me home with which was much more effective. These 2 believed me in part because i’d provided materials in advance and they weren’t threatened with new info from a layperson. In other words, they left their God complexes at the door. They sent me hme with adequate meds but this experience is nor the norm most of us experience. It truly was n awful experience and one i never hope to relive, ie no more surgery … ever !! 😛
Hopefully NIH and big pharma will begin funding in ernest. I think then we will have an easier time knowing where we can best use fund raising dollars.
As always, thank you Cort.
Wonder if CRPS/RSD has been considered as a possible problem developed post ok. This is how I got mine. And I also have FM.
This is a real problem, the diagnosis is questionable when they say proto-fibromyalgia. What criteria were they basing this on? I really think this is underdiagnosed and so very misunderstood.
There needs to be some biomarkers to correctly diagnose ME/CFS and Fibromyalgia before there are comparisons made.