BOSTON — In a small study of patients labeled as having fibromyalgia, almost half actually had small-fiber polyneuropathy (SFPN), a potentially treatable condition.
Therefore, it is important that patients considered to have fibromyalgia be tested for SFPN, Anne Louise Oaklander, MD, PhD, associate in neurology at Massachusetts General Hospital and associate professor of neurology at Harvard Medical School in Boston, and colleagues reported here at the American Neurological Association (ANA) 137th Annual Meeting.
"Fibromyalgia is such a common and expensive health care problem and although most people are aware of its existence now, it has no associated pathology with it," she explained. "So it's not a diagnosis in the true sense of the word, and that leaves patients frustrated and unable to gain real traction towards a cure."
Dr. Oaklander noted that despite an emphasis on central mechanisms as the cause of fibromyalgia, these findings suggest that a specific — and sometimes treatable — type of peripheral neuropathy is a common cause of the condition.
"This is exciting for us because it's the beginning of objective data on what the actual cause of patients' symptoms may be," she said.
Widespread Chronic Pain
The condition is a syndrome with prominent widespread chronic pain. Thus, her laboratory tested the hypothesis that some patients with fibromyalgia may have SFPN, which "produces widespread chronic pain and very similar symptoms. The difference though is that small-fiber polyneuropathy is a true disease, meaning that there are objective tests for it, known causes, and the possibility of disease-modifying treatments and cure," Dr. Oaklander told Medscape Medical News.
The investigators recruited 25 patients 18 years of age or older from the community who met the best available clinical and research definition of fibromyalgia (mean age, 46.5 years), as well as 29 control participants (mean age, 44.8 years). The groups were well matched for demographic characteristics, including sex (76% to 79% women).
The researchers applied consensus-recommended diagnostic tests for SFPN, including standard diagnostic autonomic function testing, an early neuropathy scale, and PGP9.5 immunohistochemical staining of a 3-mm skin punch biopsy specimen from the distal portion of the leg. PGP9.5 is a pan-axonal marker.
The diagnostic test results and markers were analyzed in a blinded fashion. Intraepidermal nerve fiber (IENF) densities were normalized to control values expected for age and sex.
"The diagnostic criterion, universally accepted around the world, is that someone whose nerve fiber density in their biopsy is below the fifth centile of predicted value is considered to have definite small-fiber polyneuropathy," Dr. Oaklander said.
"The major finding of our study is that half of the cohort of fibromyalgia patients but none of an age-matched control group had evidence of nerve loss. And so to neurologists this meets the diagnostic criteria for small-fiber polyneuropathy."
For the various tests overall, 46% of the patients with fibromyalgia and 17% of controls (P < .001) met the rigorous criteria for SFPN.
More specifically, 40% of the patients with fibromyalgia met the SFPN diagnostic criteria upon IENF staining. Their IENF densities averaged 28% ± 6% of the predicted norm vs 47% ± 6% for controls (P < .02).
Interestingly, there was no overall difference between patients with fibromyalgia and controls on autonomic function testing. Among the fibromyalgia cohort, 17% met diagnostic criteria for SFPN on autonomic testing vs 15% of controls (P = .67).
Link to Diabetes
"The significance of this finding is that unlike with fibromyalgia there are known causes of small-fiber polyneuropathy, many of which are amenable to treatment," Dr. Oaklander pointed out. "The most common 1 in the U.S. is diabetes, even prediabetes. So we're now moving on to test this cohort of patients for potentially treatable causes, which offer them the possibility of improvement and perhaps even cure."
In all of her studies, she said that when she found small-fiber polyneuropathy, "a substantial proportion of patients turn out to have either diabetes or pre-diabetes. Most of them don't even know that. It's so common.
"We noticed that virtually all of the patients that we were able to give an ultimate diagnosis of small-fiber [polyneuropathy] in fact said, 'Oh, I've been told I have fibromyalgia for the last 10 years'."
Besides diabetes, causes of SFPN include malignancies, autoimmune conditions, toxins, and mutations, and possible symptoms overlap those of fibromyalgia. Some patients with SFPN may not have pain but may have sensory loss or autonomic symptoms, such as abnormal blood pressure or gastrointestinal disturbances. Dr. Oaklander added that people at the lower end of the normal range of test results for SFPN may eventually develop symptoms.
Her laboratory and some other academic and commercial ones are accredited to run the IENF density tests.
Observing the poster, Gary Rosenberg, MD, professor and chair of the Department of Neurology at the University of New Mexico School of Medicine in Albuquerque, commented to Medscape Medical News that he occasionally sees patients with fibromyalgia but noted, "They tend to go to the rheumatologist, not the neurologists" since fibromyalgia has traditionally been considered a rheumatologic condition. Dr. Rosenberg was not involved in the study.
Although fibromyalgia is purely a clinical diagnosis, this new information may add to the understanding of the pain syndrome "so it could be useful," he said, in that it explains the pathophysiology of some common pain presentations.
The study did not receive any commercial funding. Dr. Oaklander and Dr. Rosenberg have disclosed no relevant financial relationships.
American Neurological Association (ANA) 137th Annual Meeting in partnership with the Association of British Neurologists. Abstract W1409. Poster presented October 7-9, 2012.
Well done on finding this Lacey ... isn't this what we all dream of? Proper tests for a proper diagnosis of a treatable condition.
I'll be showing this to my chocolate teapot ... sorry GP and seeing what he has to say. I am going to guess he will say it is American and the tests aren't available on the NHS ... but we can but try.
Please post if anyone gets this test done on the NHS, if one person can then we should all ask for the test.
i saw my GP yesterday and showed him some stuff i had on people who have had an ovarian cyst where nothing showed up on any scans and their abdomens were swollen and wiuth weight gain.,i told him it has to be a cyst because my abdomen is even bigger harder and heavier causing so much pressure on my ribs and i can associate with these peoples experiences.the response was "they are American". SO THAT DOESNT COUNT!!!!! i also have symptons of Dercums disease which he said he had never heard of but at my next appt it was "YOU DONT HAVE DERCUMS .IT IS FIBROMYALGIA!!!"HOW CAN HE SAY THIS WHEN HE HAS NEVER HEARD OF IT.
good luck with your GP hope yours listens to you,pleas elet me knwo how you get on.
5yrs ago when I first started with fibro I had severe stomach pain and was admitted to hospital where they scanned me for an ovarian cyst and told me that I didn't have one and even shouted this to me :as I didn't understand the pain, Less than a year later I started bleeding (no periods for 2yrs prior to this) and was sent for another scan hey presto they found something and sent me for an internal scan and guess what yep they found a simple cyst. I asked how long she (the drs) thought that I had had this and she said about 5 years. If only they had done the right tests then they would have found this fortunately it was nothing to worry about but what if it had the moral is keep asking if there are any more tests that they can do as they missed it with me !
The what if dos not bear thinking about if it was the big C it could quite easly have become inoperable and that's a very scarey thought I'm glad it was just a sist and that your feeling a lot better now.
It makes very interesting reading although I have not quite understood the true meaning of SFPN Am I alone in this? Indeed proper tests would be marvelous weather we have fibro as secondary or primary. It will be interesting to see how available the test becomes!
Small fibre polyneuropathy is a type of peripheral neuropathy... which is damage to the unmyelinated nerve fibres.... the short not the long... these are c fibres which are present in our skin, peripheral nerves and our organs. The nerves help control our autonomic function! The autonomic nervous system (ANS or visceral nervous system or involuntary nervous system) is the part of the peripheral nervous system that acts as a control system functioning largely below the level of consciousness, and controls visceral ( organs) functions.
Smaller sensory fibers without myelin sheaths transmit pain and temperature sensations. ( Small fibre polyneuropathy) Damage to these fibers can interfere with the ability to feel pain or changes in temperature. People may fail to sense that they have been injured from a cut or that a wound is becoming infected. Others may not detect pains that warn of impending heart attack or other acute conditions. (Loss of pain sensation is a particularly serious problem for people with diabetes, contributing to the high rate of lower limb amputations among this population.) Pain receptors in the skin can also become oversensitized, so that people may feel severe pain (allodynia) from stimuli that are normally painless (for example, some may experience pain from bed sheets draped lightly over the body).
Peripheral neuropathy describes damage to the peripheral nervous system, the vast communications network that transmits information from the brain and spinal cord (the central nervous system) to every other part of the body. Peripheral nerves also send sensory information back to the brain and spinal cord, such as a message that the feet are cold or a finger is burned. Damage to the peripheral nervous system interferes with these vital connections. Like static on a telephone line, peripheral neuropathy distorts and sometimes interrupts messages between the brain and the rest of the body. More than 100 types of peripheral neuropathy have been identified, each with its own characteristic set of symptoms, pattern of development, and prognosis. Impaired function and symptoms depend on the type of nerves-motor, sensory, or autonomic-that are damaged. Motor nerves control movements of all muscles under conscious control, such as those used for walking, grasping things, or talking. Sensory nerves transmit information about sensory experiences, such as the feeling of a light touch or the pain resulting from a cut. Autonomic nerves regulate biological activities that people do not control consciously, such as breathing, digesting food, and heart and gland functions. Although some neuropathies may affect all three types of nerves, others primarily affect one or two types. Therefore, doctors may use terms such as predominantly motor neuropathy, predominantly sensory neuropathy, sensory-motor neuropathy, or autonomic neuropathy to describe a patient's condition. Occasionally the neuropathy is a symptom of another disorder.Because every peripheral nerve has a highly specialized function in a specific part of the body, a wide array of symptoms can occur when nerves are damaged. Some people may experience temporary numbness, tingling, and pricking sensations (paresthesia), sensitivity to touch, or muscle weakness. Others may suffer more extreme symptoms, including burning pain (especially at night), muscle wasting, paralysis, or organ or gland dysfunction. People may become unable to digest food easily, maintain safe levels of blood pressure, sweat normally, or experience normal sexual function. In the most extreme cases, breathing may become difficult or organ failure may occur. Symptoms are related to the type of affected nerve and may be seen over a period of days, weeks, or years. Muscle weakness is the most common symptom of motor nerve damage. Other symptoms may include painful cramps and fasciculations (uncontrolled muscle twitching visible under the skin), muscle loss, bone degeneration, and changes in the skin, hair, and nails. These more general degenerative changes also can result from sensory or autonomic nerve fiber loss. Sensory nerve damage causes a more complex range of symptoms because sensory nerves have a wider, more highly specialized range of functions. Larger sensory fibers enclosed in myelin (a fatty protein that coats and insulates many nerves) register vibration, light touch, and position sense. Damage to large sensory fibers lessens the ability to feel vibrations and touch, resulting in a general sense of numbness, especially in the hands and feet. People may feel as if they are wearing gloves and stockings even when they are not. Many patients cannot recognize by touch alone the shapes of small objects or distinguish between different shapes. This damage to sensory fibers may contribute to the loss of reflexes (as can motor nerve damage). Loss of position sense often makes people unable to coordinate complex movements like walking or fastening buttons, or to maintain their balance when their eyes are shut. Neuropathic pain is difficult to control and can seriously affect emotional well-being and overall quality of life. Neuropathic pain is often worse at night, seriously disrupting sleep and adding to the emotional burden of sensory nerve damage.
My Dr may have already seen this she is quite 'up' on research, she's young but very well informed and knowledgeable.
I saw her the other day and wrote an essay for her on what Oli was suffering from lately as well as the usual. She said that I am a 'text book case for Fibromyalgia' ho hum...
However is that because the text books need re-writing for this new discovery?? Mind boggles! My mind only just copes with the day at hand!
Good luck with this new report guys and let us know if you find its available over here in the UK xxx
wow this is interesting stuff. I've been saying for years that I'm pre-diabetic as have had some bad symptoms associated with diabetes but blood tests come back clear (we all know how unreliable they are! Also I was diagnosed with Fibro 12 years ago.
I hope you don't mind me asking Lacey777, are you based in the UK or in America? Wouldn't it be wonderful if we could all have this test. xx
Hi Bluehippo I am in the UK... However I think that these testings will become Worldwide.. they are simple enough... it just take a good caring considerate Dr... this for me confirms what I have felt all along that it is a neuro condition not a rheumy one... I have my own thoughts as we all do.... trauma, infections etc.. I research as I do have peripheral neuropathy and fibro is secondary so whilst they are different diagnosis I do feel that their is a link, and common sense tells me it is our energy cells stuck or not repairing... feeding ie nourishing our body to get back to repair is a no brainer...but it is finding what works. I am not diabetic.. ( have had tests) and am lucky as my father had diabetes but so far I am clear apparently.
I will post anything that I can lay my hands on with information to gain knowledge so that we may help ourselves.
I have copies of these which I am taking to my own GP.
America is another Country not a different PLANET. I have heard that American research is often 5-10 years ahead of Britain because it is so much better funded. Not necessarily from central government, but American culture (of which I'm not generally a fan) has a tradition whereby the wealthy endow their universities, which are involved in medical research. Obviously private funding has it's drawbacks eg. abuse via undue influence, and heaven forbid the poor should benefit, I just dont understand why this country should dismiss their research. We cant accept everything produced under a different system, but to ignore it does not make sense and is sooo frustrating!
while it is good that america is doing research, we in the uk are miles behind. i was told i had fibromyolgia a few years ago but my doctor says i must be depressed he is right in a way but i can,t find able to talk to him as he seems to have made is mind up about what he thinks is wrong. what do you do . i have considered changing my doctor but he aslo owns the other surgury in my area.
Sorry but Fibro is nothing like sfpn.
I had Fibromyalgia many years before I developed periphial neuropathy in my hands, feet and legs. The neuropathy is down to Diabetes II neither are connected to Fibromyalgia and the pains are different as anybody with both conditions will know. Plus there is no cure for sfpn, treatment is using meds used to treat epilepsy I couldnt cope with any of them so use Duloxetine which is better than nothing but not much.
Hi I also have Diabetes II and Fibro cvfs and Arthritis (both kinds ) my Dr has always said my hands,feet and legs go dead because of my Diabetes II,but it also makes the fibro pains at times more intense,my last meeting with the specialyst I was down as acute Fibro 18/18. ... I very often get asked by my husband if I am warm enough,and I say yes thanks,and he feels my leg or feet through my clothes and says "Oh you are ice cold " and I cannot feel that at all. I also heard about the treatment and the side effects outway the problem for me.
Rainbowdancer x x
Hi Jennieccles,I am sorry you have peripheral neuropathy.. its the pits isnt it and thats putting it mildly. They are not saying that Fibro is connected to SFPN at all.. they are saying that half of the patients were mis-diagnosed and didnt have fibro but SFPN.. this just confirms that there is a neuro link for them to even think of beginning this study... Peripheral neuropathy is not just connected to Diabetes.. it can come from trauma, damage, surgery as in my case surgery and affect the whole body! I am not on any medications due to sever allergies and have to take the holistic approach with more natural "medicines" or therapies but then have to be very careful.
Finding the correct diagnosis is paramount to how conditions are treated, so for me this does seem a step forward that the medical professions are actually looking at these conditions seriously to warrant time, finance, research, testings and studies.
Sensory symptoms of small fiber neuropathy are highly variable. Common complaints include paresthesias, dysesthesias, and insensitivity to pain. Paresthesias are abnormal sensations. They are often described as numbness, burning, cold, prickling, pins and needles along with other symptoms, and these closely relate to fibro. Dysesthesias are unpleasant sensations, either spontaneous or evoked. A light breeze, the feeling of clothes, or even a soft touch can cause pain.Insensitivity to pain can be particular problem. One may be bleeding or have a skin injury without even knowing it. A huge difference is that peripheral neuropathy. is not a fatique related condition, we have fibro to thank for that or CFS/ME.
xxx
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Hi Lacey thank you for your response but I have gone into Fibro fog so dont understand most of it, to be honest I think the brain is re-acting not acting. I gave up studing research a while back as I think they are on the wrong path to an extent. The brain does as it is told from greater powers in this case the autoimmune system/glandular system that has gone wrong for one reason or other. In my case I believe totally that my conditions began with the discovery of severe hypothyroidism a month later high blood pressure, 5 months later diabetes II, periphial neuropathy, anaemia, pernicious anaemia, benign essential tremor, menieres disease over the next couple of years. I have arthritis in both hips and spine and sponulosis in my neck along with two frozen shoulders, deafness. I believe its the glands sending messages to the brain causing the damage as everyone of my conditions is an automimmune condition including the fibro.
I will read your reply tomorrow when I have a fresh mind for a while lol, sorry if I have confused you.
What an interesting article, thanks for sharing it with us Lacey. I also found the following link which I think refers to the same study but is a little shorter and slightly easier to understand.
Unfortunately I don't think we can get too excited yet as it was only a small scale study and I doubt that it will be taken seriously in the UK, at least until further research has been completed. My own GP is lovely and generally very supportive but very dismissive of any research I present her with, particularly if it is small scale (or In common with a previous poster, American!) No reason why we shouldn't attempt to discuss it with our GPs though. It might help to keep them on their toes and if we all push for it further large scale research along the same lines might be more conclusive and have further impact this side of the Atlantic. Thanks again Lacey, Jane x
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Thank you for this link.. it is very interesting to see the same being discussed.. did you read the comments from other sufferers.. there are soooo many of us and this is all so sad that this many can experience all of these symtoms and yet not one of us have definate answers to the cause or cure... ;-(... Bless Us All x
Very interesting piece and enjoyed all the comments,its good to know that something is going help some of us ....with a bit of luck !!
((((((((((((Gentle hugs to everyone)))))))))))))))))))
RD
i have all of the symptom peripheral neuropathy but haven't got diabetes
Peripheral neuropathy does not always arise from diabetes... mine came from surgery... it can be physical trauma, infections, endocrine disorders, connective tissue disorders even inherited and more... xxx
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so may just get some where with this.
Causes of fibro (article text, no adverts)
Fibro and balance....or not
WoooHoooo!!!!!!
"fibromyalgia mystery finally solved" guardianlv.com
