Lately, there has been some buzz about two Danish psychiatrists who, back in 2010, decided to classify a group of diseases including fibromyalgia into one disease “umbrella” called “bodily distress syndrome.” Along with fibromyalgia, other diseases such as chronic pain, chronic fatigue syndrome and irritable bowel syndrome, among others, were also lumped into this new “syndrome.” That Danish study from 2010 was entitled One single diagnosis, bodily distress syndrome, succeeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders. Bodily distress syndrome is classified as a mental disorder. This Danish definition of what two Danish psychiatrists consider to be a psychiatric problem has caused some confusion here in the United States.
The 2010 study performed by the two Danish psychiatrists had some buzz around it recently because last year, a Danish woman suffering from a disease covered under “bodily distress syndrome,” Karina Hansen, was forcibly removed from her home and placed into a hospital where she is being reportedly held against her will and is not allowed to see her parents.
This case in Denmark, and the fact that other Danish psychiatrists have now accepted “bodily distress syndrome” as an actual disease, has raised questions among some interested parties in the United States as to whether fibromyalgia could be grouped into one disease here. Despite the fact that the “syndrome” was only discussed in one small paper from 2010 and despite the fact that there are studies and data to prove fibromyalgia is a real physical illness along with proof of it having real physical origins, there are some psychiatrists who still claim it is a mental condition.
To be clear, no major organizations such as the CDC or the World Health Organization have labeled fibromyalgia a mental disorder or mental illness. It is not included in the WHO’s classification of mental disorders. In fact, the WHO defines fibromyalgia as a “soft tissue” or “rheumatic” disease. The World Health Organization website states:
Fibromyalgia is included in the Tenth Revision of the International Statistical Classification of Diseases and Related Health Problems (ICD-10) published by WHO in 1992 as follows: M79 Other soft tissue disorders, not elsewhere classified, M79.0 Rheumatism, unspecified, Fibromyalgia, Fibrositis.
Despite the fact that the WHO does not classify fibromyalgia as a mental disorder, and has no plans to re-label it as such, there has been some confusion about whether they do now or may in the future classify it as a mental condition. This confusion prompted the WHO to send out the following Tweet recently to clarify the matter:
Fibromyalgia, ME/CFS are not included as Mental & Behavioural Disorders in ICD-10, there is no proposal to do so for ICD-11
The Centers for Disease Control (CDC) also reports that Fibromyalgia is a disorder that causes physical pain and often occurs with conjunction with other physical diseases:
Fibromyalgia often co-occurs (up to 25-65%) with other rheumatic conditions such as rheumatoid arthritis (RA), systemic lupus erythematosus (SLE), and ankylosing spondylitis (AS).
Nowhere in any WHO or CDC published documents does it state that fibromyalgia is definitely “all in the head,” “a mental health condition” or “psychological.”
In addition to these major organizations recognizing fibromyalgia as a physical, not mental, ailment, there have recently been many studies and papers that are finding multiple possible causes of fibromyalgia such as a vitamin D deficiency, extra nerve fibers in the hands, rheumatism, physical trauma, viral infections and other causes.
While the two Danish psychiatrists may believe that fibromyalgia is a mental condition, and there are perhaps some psychiatrists in the United States who might wish to classify it that way because it could perhaps bring them more business, fibromyalgia is discussed and classified by the WHO as a physical, and not a mental condition. While the exact physical etiology for every patient suffering from fibromyalgia is unknown at this this time, some research has shown definite physical causes and ongoing research continues to uncover new information. This proof of physical origins of the condition is growing at a fast pace.
Dr. Frank Rice, who conducted the peer reviewed, published research study proving that a majority of fibromyalgia patients had extra nerve fibers in their hands, is doing ongoing research which continues to yield physical causes centering on the nerves in the body and how those nerves relay information.
Dr. Rice states that his study results had a very high level of significance, and that particular study proved that fibromyalgia pain originates from too many of a specific type of nerve fiber in the skin. Speaking about his study, he states:
The results were so profound that they achieved an especially high level of significance. The standard for significance in scientific studies is what is referred to as a “p value of 0.05” which means that there is only a 5% possibility that the results could be explained by chance. Our results were a p value of 0.0001 which means a 0.01% likelihood of occurring by chance.
Additionally, Dr. Rice is involved in further research that he feels confident will pave the way toward more meaningful physical diagnoses and better treatment approaches. At this time it appears that the proof and data supports the classification as fibromyalgia as a concern stemming from physical origins and not as a mental disorder.
An Editorial By: Rebecca Savastio
Personal email from Dr. Frank Rice
42 thoughts on “Fibromyalgia: Proof of Physical Origins Vs. Two Danish Psychiatrists”
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ENDROMETREOSIS HAS SIMILAR COMPLAINTS
I KNOW ALSO THEY SAY ENDROMETRIOSIS IS ALSO RELATED TO NERVE AFTER OPERATIONS ? SUFFERING SIMILAR /
I know that narcotics are not the way to go for most, but may I defend the individuality of FB and it’s treatments? I’ve had FB for 21 yrs.
My narcotics are the only thing that GETS ME GOING due to the reduction of pain (from an 8.5 down to a 6 on a good day). Of course I am still in a great deal of pain, but it’s TOLERABLE.
I am on (as of this year) 2-75 mg patches of fentanyl. I know, I know. I am also on 4mgs of delaudids every 4 hrs. I weigh 100 lbs (& losing) & am 5’4. But I never feel the mental fog of these drugs (as apposed to Fibro fog-completely different). I believe it’s because the pain eats them up.
Since I started this specific treatment, I am able to have a few more days a week (if I’m careful & do not overexert). I am mentally alert, as much as Fibro allows. Even on these drugs, I have a hard time sleeping.
Believe me, I do not like the idea of these drugs any more than most people. But it gives me a quality of life I haven’t had in a very long time.
God bless you & thank you for taking the time to read my views.
Katherine, you should really look into the Alpha-Stim (alpha-stim.com). My husband uses it for his chronic migraines, I use it for my fibro, arthritis and depression. Both of us have had amazing, life changing results! Without drugs! Please check it out!
I seriously think doctors go to saying conditions like this are all in the patient’s head when they feel like idiots because they can’t solve the patient’s pain and most of the time their patient is more educated than they, so they take low blows because it’s really the only power they have. It’s the act of a desperate doctor (usually male, you may notice).
I can’t even get my GP to refer me to a rumatologist, I have never seen a specialist about this condition. He just insists it’s what I have (among other syndromes), I get given co codomol pain killers which I don’t take as I have IBS and it makes it worse. I use them occasionally, if I have to do a streneous job. Thied pain patches, but they bring me out in sore blisters. GP makes me feel ilke a hipocrondiac. It’s very hard living with this.
Pauline, you are entitled to a second opinion! See a different GP – even if it means a train journey to get there. It is SO worth it. The first time I changed my GP, I was surprised that it really wasn’t a big deal to them. It felt like a huge “official complaint” to me but all I needed to say was that we weren’t getting on (I didn’t feel heard, I think I said) and I was registered to another one.
No need to actually leave her/him, you can just have one appointment with a different GP. But if you find someone else supportive, I can’t see any point in staying with one who doesn’t take you seriously. Co-codamol doesn’t work on fibromyalgia pain anyway since it is neurological pain. It helps with pain that comes from the tension in your muscles, which comes from the fm pain… that’s all. In my experience.
Take charge of the care you get! And good luck. 🙂
My Rheumatologist in the UK has repeatedly diagnosed me with FM, despite having persistent pain only in my hips. I understood that I should have 11/18 sore spots to be properly diagnosed with FM, yet when I challenged the diagnosis, AGAIN, I was told that I could still have it with just 2 sore places. I’ve asked for ultrasound, CT & MRI scans yet I have been refused. I sincerely believe that I have something else, but this determination to tell me I have FM has pigeonholed me neatly into a ‘keep taking the pills’ box they can ignore. What do I do now?!
Get a new Rheumatologist. You always have the right to challenge a Doctor’s diagnosis and ask for a second opinion.
Get a naturalpath, they will run a full panel. I too was diagnosed with FM and later found out it was from my Magnesium and Vit D working against it. Taking the right supplements to catch up has made a world of a difference. Its worth a try. Also I had a buccal test of cells to compare with my blood tesr and come to find out they were way off count. In blood tests you don’t get as accurate of a measuement.
Ame, your doc could be right about Medication Road–it might only obscure what’s wrong. You could ask him/her to look up polymyalgia rheumatica, which seems to fit you as well, but the only treatment for that is prednisone and PMR is another one of these diagnoses without cause or cure, anyway.
I’ve “had” FM since ’92 and didn’t get anywhere with it until I went natural. Basically, I moved to Hawaii and began living more healthily. Pretty soon nobody could have guessed I had FM. However, it’s never over, I’ve realized. Now, back in Canada, I’ve had cancer and an apparently thyroid death, but I’ve beaten them back with natural methods such as alkalinization, oxygenation, going organic and a selection of “nutraceuticals”–supplements.
There are some very helpful doctors online (Dr. Sircus, Dr. Lam, Dr. Kalish, Dr. Mercola, to name a few)–start reading and see what fits. It’s your body, after all–the only one you’ll ever have.
You may be surprised at what something as simple and cheap as baking soda can do for pain. Which reminds me…I’m off to take my baking-soda bath right now!
Is this stupid conversation still going on after a quarter century?
No, FM does not originate in the patient’s head. Yes, the pain is real–duh!
It is annoying to see medical researchers wasting their time on the question of psychiatric cause vs physical cause–a failure of the medical profession and the researchers to step outside the box and see the human body for what it truly is.
*Thyroid Resurrection: from dead to dynamic without drugs* strongly hints at the insights you can get, as an FM patient, by thinking out of the box. Or just wait for my two new fibromyalgia books this summer, which i hope will kill this all-in-your-head argument for once and for all..
Ame, get a new Rheumatologist. I’ve had Fibro w/o knowing it, along with psoriatic arthritis for over 15 years and am not on heavy meds. Tried that route and hated how I felt, pain still there anyway. Now on motrin and tramadol, it has its own tolerance problems but doesn’t make you feel narcotized and can be effective along with the ant-inflammatory.
Fibro will make you crazy if you don’t have a knowledgeable, supportive doctor. It still will be hard but not as bad as you’re having now, both physically and psychologically. Good luck.
I suffer severe back ache hip joints shoulder joints knee joint arms I wake up exhausted I wake in the night in pain just to turn over I’m 38 and feel 80 I have hypermobility but my doctor says it’s mild iv seen a rheumatologist and he says I have early osteo arthritis he asked if I had been diagnosed with fibromyalgia, I said no bur after reading all the symptoms it fits! I’m exhausted in pain and feel physically restrained although my brain keeps telling me to push myself even housework leaves me in so much pain it knocks me for six, my sex life is painful purely because my joints ache during and after sometime coz I can relax knowing the pain I will be in sex even hurts phsycologicaly and physically my children are all young still and I force myself daily to be active for them also trying to keep an organised house but I feel that I have to rely on pain relief to get me through, I do make it very minimal though and certainly don’t rely on it, I asked my doctor to follow it up and he said he felt that fibromyalgia sufferers are only on a road to high medication and he didn’t want to send me down that road!!! Although my rheumatologist has given me his diagnosis I feel like iv been fobbed off coz if I have early stages then the way I feel does not compare to this even with the stigma that comes with fibromyalgia I feel like this is what I have. I’m not sure where to go from here really as I feel ill not know till its too late xxx rant over lol xxx
After all these years of people suffering these idiots say that it’s all head.sorry this condition is for Real I having suffering for 42 years and still no effective treatment has been found sorry Dr’s it is not in my head it’s for real.
Ahem!
Fibromyalgia IS labeled as a Rheumatic disease in Denmark also!
Stop it with all of this freaking nonsense!
– With regards
A DANE!!!!
What a step backwards to declare it a “mental disorder” That is how many doctors used to see it and some still do. With all the research that has been done over the years then there is no excuse for this kind of ignorance. Just because we can’t pin down a specific cause does not mean that it is not real. All kinds of physical anomalies have been found with this condition.
I read a comment online a few years ago by a woman who had been sent to counseling by her physician to find out why she “felt compelled to make up her symptoms” That of course did not solve anything. She actually found out about fibromyalgia from a friend who had read something about it. How is it that her friend knew more than her doctor???
I have fibromyalgia and have had for some time and interesting to read about nerves in the hand because a short while before being diagnosed with Fibromyalgia I was diagnosed with peripheral neuropathy – is there a link between the two – I would also love not to take medication – any further research happening?? – Lynda Noakes Northampton UK
Lynda, check out the Alpha-Stim (aloha-stim.com). I have been using it for a few months and my fibro pain is basically gone, with the arthritis pain bearable to minimal most days. It’s winter right now and mother nature can’t make up her mind, so the major shifts in temperature are affecting my symptoms. But this device has had a profound impact on my life!
Intersting that people have thought its imagination. I have been diagnosEd with fibromyalgia. I don’t know if that’s what it is and I don’t care really what name is given. I do know at times that I haVe swollen up very quickly in different parts of my body and experience pain. The swelling was so bad at one point thought it was a dvt. If it’s imagination this would not happen! There is clearly a physical reason this happenstance. Be good to see progress made and I am up for not having to take medication. I do pillates yoga and variously other things to keep well. I have studied rebt and cut and use this also. Have have various therapies That has helped but nothing that has reduced it enough to not interfere with my life. Hoping docs get on top of it at some point
ooh ..if it’s a MENTAL disorder ..fine..FIX MY HEAD!!!!!!!!
Per fink is a dangerous ego centric Dr who has locked up a physically unwell young woman with no rights to family visits for nearly 2 years.thank you the guardian for publishing this.justice for Karina Hansen can be found bon facebook .justice for Karina Hansen’s facebook page.please help this poor woman with no human rights
2 years in June I was coming down my stairs missed the last 2 steps landed flat on my feet both ankles going flat outward, no breaks, but very badly sprained. In a couple of months, my body would start to tingle and burn from the top of my head to the bottom of my feet.
My Primary Doctor started running test’s. MRI, all blood and found nothing except for the last mark for Lyme Disease witch was no big deal. So it turned out I am a totally healthy person always have been all of my 69 years. AS time went on the tingling turned into thousands of Fire Ant stings and my whole body was on fire again from the top of my head
to the bottom of my feet, even my tongue, still even today. So my Primary sent me to a Neurologist, who at the time didn’t take to much concern about Fribo, so he did a nerve
test, and to this day clams there is no nerve damage but he did diagnose me with Fibro.
only he didn’t now what to call it and has sense changed his mind and agreed it is nerve
related.
Sent me to Sleep Therapy and have a new CPAP and it helps with sleeping, and I also take 2 Trizodne before I go to bed and sleep like a baby and hangover.
Next stop was to the Behavioral Medicine, which also includes mood disturbances, such as depression and anxiety, did me good, but low and behold I’m not crazy.
I AM on drug therapy and welcome them, better not to be in total pain.
I have FM. It hits me in the legs and headaches. I had knee replacement of my left knee shortly after that I had extreme fatigue in my legs and muscle soreness also my left knee causes me a lot of stiffness and pain the surgery was fine the doctor said the knee is stable I am on tramadol lyrical high dose of vitamins and have tried other sources to help my condition nothing at this time seems to help relieve the fatigue
Mike, I can’t spend time here today (not a good day for me), but google CRPS. I’m no expert but during my time in hospital I got to know people on a CRPS programme – and your story sounds very like it. Particularly if your pain is only in your legs, and not the upper half of your body, because that alone would rule out FM. (For FM diagnosis, pain must be both above and below the waist, and both left and right, at least some of it. Unless they’ve completely changed the criteria since last time I looked.) Good luck. 🙂
ps. Re-reading, it’s weakness more than pain for you – have you asked about nerve damage higher up? NB. I am NOT qualified, just knowledgeable from years of interest, so this may be wildly wrong (don’t let me scare you) – but a rheumatologist or orthopaedist won’t necessarily think of investigating other kinds of cause unless you suggest them. Even doctors think like humans! 😉
I am FM for 10 years. Last year I broke my left leg and now I really suffer each day and fibro is permanent. I take tramium and now contramal. It is hard. I am searching about others medics. (Tramadol and form of opium). Pat
The thing is, everyone finds different things are good – what works for me may be no use to you, but don’t rule out something that others say is useless because it may be the thing that helps you. It does need time spending on trial n error, but it’s worth it. I find celebration any improvement really helps, or it can be overwhelming.
Having said that…
I went through Amitriptyline and another of that family, which both helped but not enough, and now I’m on Duloxetine which makes a great difference. I think studies show Duloxetine is no good for most of us but it is for me. 🙂 Also (non-prescription) glucosamine, cod liver oil, lately trying green-lipped mussel which if I remember right works well in combination wtih glucosamine. Every so often I try something else and they all seem to need weeks or months before you can tell – usually I only find out they make a difference when I come off them! For years I avoided “wasting” money on things that may not help, but now I look at it as money spent on research rather than money spent on treatment that ought to work; then when it turns up something good, that’s a bonus. Absolutely NOT money wasted because lower pain changes life right around!
Also try to get on a pain management course if you haven’t already done one, and for me personally, Alexander technique has taught me a lot about the way I hold my body, parts that I didn’t know I was tensing, etc. Yoga I believe is similar for that. Fibromyalgia is a learning curve – and the learning has other benefits. Good luck with your own progress, Patricia. 🙂
Do the bones of fibromyalgia patients crack constantly?
Mine do, but I don’t know if it’s an FM thing. I have tendon problems too and hypermobility, pretty sure it’s related to them. (though hypermobility is common among FM patients too).
@ Amanda – best of luck tomorrow! Glad you already have a pain specialist. 🙂
I remembered another thing from the research: typically, FM patients are more hard-working and conscientious by nature, less likely to give up when it gets difficult, than average in the general population. (This is why learning to stop when we need to is such an important part of the FM learning curve.) When we feel guilty about not managing the workload we used to, this is nice to know.
Maybe I shouldn’t have gone back to re-read all these comments, but it did prompt this statistic to emerge from my memory! 😉
@ mand – I have been struggling to get a diagnosis for the wide spread deep muscle pain/myofacial trigger points for almost 7 yrs now. There isn’t a doubt in my mind the FM is one part of it and I think you have hit the nail on the head with your advice! I too have done these things to prepare myself for the long awaited appointment I have tomorrow with the specialist my pain specialist has set up!!
Amanda
every thing your saying is true and most of all i wish doctors would try to understand more.
@ Taylor Carter – fibromyalgia is not an arthritis. I’m with you, I wouldn’t swallow any meds if I could avoid it. Topical products help (this is my personal experience only) when a fibromyalgia flare-up causes tension for hours which in turn causes muscle pain. The FM pain itself does not originate in the soft tissues. There are several kinds of pain and they fluctuate, after years of studying myself as scientifically as I can, I’ve worked out a few things that may make some of them worse, but mostly they are unpredictable. An activity which, on one occasion, causes two days’ pain after ten minutes doing it, on another occasion I may get away with and not “pay for” at all, even if I did it for an hour. All I really know is that if I push through when my body begins to say stop, even for a few minutes, I will pay later (I never know how badly).
FM is neurological. This is why aspirin, ibuprofen, paracetamol, codeine etc rarely have any effect. There has been MRI evidence of altered brain activity since at least 2005. If trying to explain to someone who wants more than “It’s a bit like arthritis,” I say it’s to do with the way the nerves carry the pain messages to the brain. I’m no doctor but I have attended lectures by the top researchers in the FM field. One I remember saying: it should be diagnosed by neurology but handed over to rheumatology for management thereafter. I don’t know anywhere this happens in practice. But it isn’t diagnosed merely by excluding all the other similar conditions.
But I have the brain fog which is one of the most common symptoms, so I can’t give you references. FM has turned me from an academic and later PA, freelance writer and highly involved mother, into a muddlehead who finds keeping up with the groceries and household finances is a full-time job – on a good day.
@ nameisrequired – I would be more friendly, but you haven’t given your name – I suggest you research optimal pillow height if you’re waking stiff and sore every morning; look into recommendations for improving sleep; and drink more water. Check the seating you use at any desk or table, your driving position, and your sofa. Experiment until you’re fully familiar with the effect different foods have on your overall wellbeing. Keep a diary for a full year to see if weather and season make a difference. Notice if it’s better after a full night’s sleep, or better after a shorter night (as mine is). Notice if it’s worse after a more active day or a more sedentary one. Notice if it’s better after a day when you had a great time and worse after arguing. If these ideas don’t help at all, then see a doctor and I hope you already have the high level of communication skills and persistence required to be taken seriously for what is hard to describe but easy to dismiss: long-term “aches and pains”. However if you haven’t got something serious, consider relaxation techniques which may help you resent genuine patients less as well as helping your sleep.
It’s all so, so subjective. That’s the real reason it’s not really recognized as a disease.
Judging from the symptoms I have “fibro” every morning. It goes away until I get up and start moving.
Then, I get it again tomorrow.
Get a life. Get moving. Don’t shirk responsibility anymore.
“Get a Life. Get moving.” Ummm…if you understood anything at all about Fibromyalgia, you would know that fibro symptoms DON’T disappear after you start moving. In fact, strenuous exercise worsen symptoms. And the symptoms DON’T disappear as you go about your day. Fibromyalgia means you’re in pain all day, every day. That you MIGHT get some relief from gentle exercise like Tai Chi and with certain drugs. But you never are completely pain free. Try being in pain 24 hours a day. My cancer specialist believes that thyroid levels may play a major part. And yes, I have cancer too. 200 years ago, the type of cancer I have would have been called “woman’s troubles.” They didn’t believe IT was a disease either. Fortunately, close minded people like you didn’t stop doctors from eventually figuring it out. And people like you won’t stop them from figuring out fibromylagia either.
I am sickened to hear of Karina Hansen’s treatment by those horrible doctors in Denmark! I changed doctors several times over a period of about 3 years hearing such stupid comments as “get in touch with your pain”. Thankfully, I have a wonderful doctor who knows FMS to be REAL, & he attends every seminar he can to learn more. I’ll be taking a print out of this to him when I see him next week. A dear friend email this to me, & I sat here crying thinking that maybe some day GOOD doctors will know what to do for all of us. Keep your chin up everyone…… we WILL survive!!
This is so upsetting. I have psoriatic arthritis and osteoarthritis so was flummoxed when told I also had fibro— like, really?? I didn’t believe it existed. But the pain points (in spite of 2 replaced shoulders and replaced hips) are excruciating, and the fatigue is impossible to describe, it’s so beyond feeling ‘low energy’. I wonder if there is some way we could get a petition or something to help this woman? Thinking you’re somehow causing the problems yourself just adds to the extreme stress of the condition(s). Have her ask for asylum!
@ Taylor–thank you for wanting to help. Topicals can help for a bit but not for the kind of deep, bone/muscle/tendon pain that would require a vat of it to apply everywhere that hurts. I still will use it sometimes on hands or knees just to try to trick my mind–the anxiety that all the chronic pain brings def takes its toll.
J.E. King, I also have psoriatic arthritis, and was diagnosed with fibro about a year ago. I had been on Remicade for about 7 years and it suddenly stopped working a little over 2 years ago. Nothing helped. Last fall I was introduced to the Alpha-Stim (alpha-stim.com). It has totally changed my life! No drugs for the pain and fatigue. Please check it out! I would say I am back to normal…but now I realize that I was never “normal”, now I am much much better!
Those quack doctors in Denmark are causing grievous harm. There needs to be a close scrutiny of their credentials. They are guilty of malpractice, and should lose their licenses.
“a Danish woman suffering from a disease covered under “bodily distress syndrome,” Karina Hansen, was forcibly removed from her homeand placed into a hospital where she is being reportedly held against her will and is not allowed to see her parents.”
What has happened to Karina Hansen is a gross violation of human rights. She is entirely at the mercy of a group of quack doctors. Her disease is not receiving appropriate treatment, because her doctors don’t “believe” in it. She has been denied the right to refuse treatment, to family visits, to legal representation, to her liberty. The graded exercise therapy that she is forced to undergo against her will amounts to physical torture.
And, this has been going on for over a year!
This is an interesting article, but I’m curious; has anyone here looked into topical pain relief to fight arthritis pain? It provides prescription strength pain relief without any pills or side effects. A family member of mine gets topical pain gels through a pharmacy in the midwest, A&R Pharmacy in Liberty, MO, and all he does is apply the gel whenever he’s in pain. He has had significant results since going this route and I highly recommend it for anyone struggling with pain and/or pills. I hope this helps!
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