by Cort Johnson | Dec 24, 2017 | Homepage, Pain, Research |
Dr. Anne Oaklander didn’t just discover the small nerve fiber problems in fibromyalgia, she’s literally trying to build the small nerve fiber field from the bottom up. We can thank the NIH for that: it awarded her with a big ROI grant a couple of years ago which, among other things, tasked her with identifying the best way to diagnose small nerve fiber neuropathy or as she more accurately calls it, small-fiber polyneuropathy (SFPN).
The Study
Specific symptoms may discriminate between fibromyalgia patients with vs without objective test evidence of small-fiber polyneuropathy Lodahl, Mette; Treister, Roi; Oaklander, Anne Louise. PAIN Reports.
First Dr. Oaklander lays out what we know – that many studies indicate that the small nerve fibers in the skin of about 40% of the people with fibromyalgia have been damaged or partially lost. Oaklander seems to be more and more confident of her findings.
Is the pain in FM caused by small nerve fiber problems, central sensitization or both?
Disregarding the numerous brain scanning studies, presumably because they don’t elucidate a “cause”, she states that fibromyalgia had “no known biomedical cause” until the SFPN was found.
Then she rolls through the many ways SFPN might be causing FM. (If you have chronic fatigue syndrome (ME/CFS) these may apply as well.) The gist is that because the small, lightly or unmyelinated nerve fibers seem to be ubiquitous in the body, damage to them could affect just about every symptom present in FM or ME/CFS.
Pain – Because the small nerve fibers transmit pain sensations they could be causing or contributing to the pain sensitization seen in FM.
Gut Issues – Because they control gut motility they could be causing or contributing to the gut problems.
Fatigue – Oaklander attributed the fatigue problems in FM and ME/CFS to something she called “neurogenic myovasculopathy” – which may be a new term. (Neurogenic – nerve system caused; myo – muscle; vasculopathy – blood vessel disease: a nervous system disease causing problems with the blood vessels in the muscles).
Inflammation – Because the same nerve fibers regulate and are regulated by the immune system, damage to them may be producing inflammation.
Brainfog, Fibrofog – Because the nerve fibers extend into the brain, damage to them could affect cognition.
It’s an impressive list. It’s no wonder that Oaklander dismisses any idea that FM is psychosomatic and calls it a neurological disorder.
(On a side note – FM finds its unhappy home at the NIH in the National Institute of Arthritis and Muscoskeletal and Skin Disorders (NIAMS). NIAMS is an Institute that would apparently rather treat FM as a behavioral disorder than a physiological one and has little interest in funding it. (Funding has actually dropped over the past five years.) With its funding among the lowest in the NIH – just $9 million a year or about a dollar a year per patient – perhaps FM would do better if it moved to the Neurological Institute (NINDS). It was NINDS, not NIAMS, that funded Oaklander’s NIH grant.
The really good news is that, because those small nerve fibers never stop growing, if whatever is damaging them can be stopped, they should be able to grow back; i.e. a full recovery should be possible (!). All that may be needed, Dr. Oaklander suggests, is to remove the “neurotoxic” conditions causing the damage. A recent Oaklander treatment study was not a full blown placebo-controlled, double-blinded trial, but it did suggest that immune modulators may be helpful for many with SFPN.
The possibility of a treatment makes it all the more reason, Dr. Oaklander asserts, to find a way to easily determine who among the millions of FM patient has SFPN and who doesn’t.
Symptom Questionnaire
It could something be as simple as a symptom questionnaire. The symptoms of SFPN and fibromyalgia overlap greatly. (Note how close they are to ME/CFS as well.) SFPN sufferers report that their worst symptoms are fatigue and tiredness, poor endurance or strength, deep pains or aches, tingling or pins and needles and difficulty thinking and concentrating.
Noting that the symptoms of polyneuropathy are likely different in people with FM than in people with diabetes, Oaklander, in collaboration with twenty-one specialists and her patients, developed a 33-item symptom checklist called Mass General Hospital Small-fiber Symptom Survey (MGH-SSS). Besides the main symptoms (fatigue, endurance, pain) symptoms include things like: changed patterns of sweating, skin that hurts for no reason, skin that burns, rapid heartbeat, feeling dizzy, blisters or sores in the mouth, increased urinary frequency, abdominal pain, etc.The survey’s five components (gastrointestinal, somatosensory, miscellaneous, vascular, neurological) identify symptoms that could be arising from nerve damage in different parts of the body. An earlier study confirmed that the MGH-SS questionnaire was accurate and reliable in identifying FM patients a biopsy confirmed had SFPN in their skin.
For the purposes of this study, small fiber damage in the skin was confirmed using a skin biopsy or by autonomic nervous system testing which included: a heart rate variability test during deep breathing, heart and blood-pressure responses to the Valsalva maneuver and tilt, and quantitative sudomotor axon reflex testing. Furthermore, every person, whether they had SFPN or not, underwent the autonomic nervous system tests, took a pain survey, and did the SF-36 questionnaire.
The objective was to determine if a symptom questionnaire could identify FM patients with SFPN from those who don’t have it. The ancillary question – how much does SFPN in the skin affect symptoms? Dr. Clauw proposes that SFPN in the skin is a minor issue, kind of a side-show in FM. The real problem, he believes, lies in the central nervous system. Dr. Oaklander obviously believes differently.
The Quandry
Oaklander’s starting point illustrated how widespread small nerve fiber problems may be – not just in FM, but also in other diseases. She started out with 159 patients with “multisymptom illnesses” that had been referred to her. Thirty-three percent of those patients met the 2010 criteria for FM. Others probably met the definition for ME/CFS or POTS or other diseases. The wide spread of patients suggests a big group of similar patients across several diseases exists.
Thirty-nine FM patients ended up in this study, 36% of whom were determined to have SFPN by skin biopsy. Again, the most severe symptoms in this group were familiar – deep pains, fatigue, and reduced endurance.
Of the 33 symptoms measured, only pins and needles sensations were significantly increased in the FM patients with small fiber neuropathy in their skin. The vascular group of symptoms was significantly worse in the SFPN group as well, and they scored worse on the cognitive component of the SF-36 test.
There was no difference, however, in the autonomic nervous system scores, the pain scores or the functionality scores. If people with positive skin biopsies were worse off than people without them, it didn’t show up in decreased autonomic functioning or even in increased pain levels. It simply showed up as an increased incidence of pins and needles sensations.
The presence of pins and needles symptoms, then, “may” (it was not a large study) be able to differentiate between those who have SFPN and those who don’t.
The larger issue, though, is the inability of the symptom questionnaire to demonstrate that people with small nerve problems in their skin are significantly symptomatically worse off or significantly different from those who don’t have them.
The questions remain: How important is SFPN and where does it exist in the body?
That finding could suggest that SFPN either doesn’t account for much in FM; that it’s, as Dr. Clauw believes, a mostly innocuous add-on problem which causes pins and needles sensations and perhaps a few more vascular symptoms but doesn’t significantly affect the main symptoms in FM.
It’s also possible that SFPN is an entirely separate disease which just happens to have almost exactly the same features as FM. That seems unlikely.
A third, more intriguing possibility is that the small nerve problems exist throughout the bodies of many FM patients but only show up in the skin of about 40% of them. If that’s true, then the autonomic nervous system scores, pain tests, etc. would be similar in everyone in this study, which is what happened.
We seem to be left with two options: SFPN is either a relatively mild issue symptomatically or it’s the issue in FM. Time will tell on that but Oaklander’s last retrospective study suggesting that immunomodulators can be quite helpful in FM suggests the later.
Next for Oaklander is apparently finding some way to show that the small nerve problems in FM extend beyond the skin to the nerves that affect muscle functioning, gut issues, cognition and others.
If you have pins and needles sensations it might be good idea to get a small nerve biopsy done or the right kind of eye scan. (Dr. Oaklander is assessing the effectiveness of different SFPN tests as well.) If your test comes back positive, it’s possible, but by no means guaranteed, that you might be able to get IVIG paid for. (See Small Nerves, Big, Big Problem?)
32 Comments
StevefromMA on December 24, 2017 at 12:59 pm
Thanks, Cort.
Sign me up, nearby, would take questionnaire and biopsy though my symptoms are not 100% similar.
Happy holidays. Reply
Cort Johnson on December 24, 2017 at 1:08 pm
David wrote:
As a man the first thing i noticed was the “low hair count on lower body… from being/having hairy legs 6/8 years back i’ve got not one left very smooth.. and also having had Helicobacta Pylori twice since i got fibro i’ve had exactly the same feeling as pylori since..
It’s horrible living with that 24/7 just a case of living with it but not being able to enjoy life.. impossible to be happy as all well-being is lost with the feeling sick… as for the rest of the symptoms i have nearly all of the time.. Reply
Cort Johnson on December 24, 2017 at 1:10 pm
Loss of hair is a vascular symptom on that test and there was a trend towards more vascular symptoms for the people with SFPN. That seems to make sense since the small fiber problems they had were in the skin.
I hope you can get tested. Do read the Small Nerves – Big, Big Problem blog? Dr. Oaklander’s initial study suggested that IVIG can be helpful….
Good luck! Reply
Issie on December 24, 2017 at 9:57 pm
Lack of hair for a man can also indicate an imbalance in testosterone and estrogen. Seems a lot of men are low in Test. If estrogen is too high – the imbalance occurs. All sorts of issues when that happens.
Issie Reply
Cort Johnson on December 25, 2017 at 12:15 pm
Interesting – a blog on sex hormones is coming up….
Audrey Lynn on December 24, 2017 at 1:09 pm
I would love to see her, or be involved in a study. Glad I’m in the correct state – just the wrong end of it, but that’s easily fixed. There were only two things in the above questionnaire that didn’t apply. Now we have two potential participants! Reply
Cort Johnson on December 24, 2017 at 1:13 pm
Cool. She is apparently collaborating with Dr. David Systrom – a Boston pulmonologist who has been studying the exercise intolerance in ME/CFS/FM/POTS. Both think the small nerves are getting whacked….
Boston could be ME/CFS/FM central over the next couple of years….
Who knew? Reply
Anne on December 24, 2017 at 3:30 pm
She’s not taking new patients but any doc can order the test (skin biopsy and autonomic testing) which can be done at MGH or Faulkner Hospital. Reply
Lynn on December 24, 2017 at 1:25 pm
Lost the hair on my lower extremities a couple of years before I was hit with ME/CFS, Drs didn’t seem to be concerned. Very interesting, I can check off every symptom but two. Thank you once again Cort. Reply
Deborah on December 24, 2017 at 1:32 pm
Having other autoimmune diseases and a family history of such I believe that eventually “they” will find fibro/ME/CFS/POTS to also be autoimmune related. Also, include MCAD. I’m in if the need more subjects. Reply
Francis Martin on December 27, 2017 at 5:32 am
If you look at the talk given by Mark Davis at the (OMF) community symposium you’ll see that people with ME/CFS have activated T-cells. I think Mark Davis is proposing that ME/CFS is an autoimmune T-cell disease. On the face of it this would appear to be consistent with Cort’s statement above i.e. “A recent Oaklander treatment study —did suggest that immune modulators may be helpful for many with SFPN”. However, if it all those with ME/CFS had an autoimmune B-cell disease, then rituximab would have worked;it may be that some do have an autoimmune B-cell disease.
I’m still not clear what the test for SFPN is and the confidence you can have in it. Also, how does this link to the metabolic ME/CFS studies by Armstrong, Naviaux —sphingolipids– . Interestingly, Armstrong did suggest gut problems (including motility?), check out his 2016 webinar.
I think this looks interesting but it needs to be linked to the immune findings and metabolic findings. OMF have decided to fund Mark Davis’s T-cell work, i.e.out of donations (no NIH grant yet) so maybe that will turn up something. Reply
Phil Hayward on December 24, 2017 at 2:00 pm
SFNP still could be a co-morbidity with FM, like many other things. Not just a coincidence that people have co-morbidities, as if they came down with two or more things by sheer bad luck, but rather that they are already depleted in ways that render them vulnerable to further dysfunctions. There are so many differing FM patient stories.
“…All that may be needed, Dr. Oaklander suggests, is to remove the “neurotoxic” conditions causing the damage…”
Quite so! So whatever is causing the neurotoxic conditions, is the cause of FM. In some people it also results in SFNP. I think the one thing that is common to everyone with FM, is myofascial adhesions. I think this is a result of toxicity, period. This toxicity could have multiple contributors. I think people with FM have ended up in a vicious circle where the toxicity creates myofascial adhesions, which then interfere with micro vessel flows and nerve signals, leading to toxic energy metabolism and debilitated post-exertion toxin clearance, leading to worsened toxicity, leading to increased adhesions.
So many hypotheses I am reading, have the potential to be just one more piece in the “toxicity / myofascia” puzzle rather than “the” explanatory hypothesis in its own right. Just as I have been saying that of course the CNS is rendered dysfunctional as a consequence, likewise SFNP is a possible consequence of bigger-picture dysfunctions. Reply
Kim on January 6, 2018 at 12:15 pm
I agree with you on the myofascia adhesions. Although it’s very painful to have those broken up and released, I have it done about once a year. The benefits of my body moving and feeling better outweighs the pain and bruising of the procedure.
Thank you for your thoughts on this. Reply
Roi on March 6, 2018 at 11:03 am
Not really correct. These two conditions cannot be co-morbid, at least not based on current medical definitions (look on criteria 3).
Fibromyalgia diagnostic criteria is quite simple, and include:
1. Widespread pain lasting at least three months
2. Presence of other symptoms such as fatigue, waking up tired and
trouble thinking
3. No other underlying condition that might be causing the
symptoms. Reply
jess MAROTTA on December 24, 2017 at 2:01 pm
I live in Mass and would gladly take the test Reply
Troy on December 24, 2017 at 2:18 pm
Is this actual questionnaire available anywhere so I can give it to someone? Reply
Cort Johnson on December 24, 2017 at 2:31 pm
The only thing I could find on the questionnaire was in the results of the study which is embedded (in small print) in the blog. If you can read them it does list the symptoms the questionnaire asks about but does not list the actually questions.
The questionnaire is probably in this study – https://www.ncbi.nlm.nih.gov/pubmed/28063957 – but I haven’t been able to get it yet. Reply
Phil Hayward on December 24, 2017 at 2:36 pm
Re your side note “…FM finds its unhappy home at the NIH in the National Institute of Arthritis and Musculoskeletal and Skin Disorders (NIAMS). NIAMS is an Institute that would apparently rather treat FM as a behavioral disorder than a physiological one and has little interest in funding it. (Funding has actually dropped over the past five years). With its funding among the lowest in the NIH – just $9 million a year or about a dollar a year per patient – perhaps FM would do better if it moved to the Neurological Institute (NINDS)…”
I am afraid that FM is indeed a physiological disorder, and the “physiological expertise” gatekeepers are acting like they are corrupt, charlatans, and sadists, towards FM sufferers. Something I have been reading, is the work of fascia experts like Robert Schleip and Klaus Eder and various colleagues, and a sad story is emerging. Many of these experts commenced their careers as physiotherapists and other hands-on therapists, and became so frustrated at the arrogance and closed-mindedness of “mainstream” medical practitioners and researchers in the area of biology and pain, that they made costly vocational changes into that field. For example, Robert Schleip got his PHD in human biology in his forties, and became Director of the Fascia Research Institute at the University of Ulm.
The so-called experts in mainstream medical biology have an insufferable arrogance towards those in hands-on vocations, who often have studied human biology in equivalent depth already. Central to this arrogance, is the topic of hands-on palpability of tissue deformation as a form of diagnosis. The “mainstream medical” experts want to “see something in sophisticated scanning techniques”, otherwise what patients and practitioners can feel with their fingertips is irrelevant, and hands-on treatments that are successful for millions of people over a long history, is just so much pretence, quackery and auto-suggestion!
This arrogance extends to the withholding of funding for anything based on palpability, and an anti-scientific incuriosity regarding the uselessness of their own much-vaunted sophisticated diagnostic tools so far. Far from wishing to improve their tools as a result of this debacle, they do not even want to know about promising new developments that potentially confirm what the hands-on therapists have been saying all along.
http://www.doctorschierling.com/blog/thoracolumbar-fascia-videos
Whatever the motives, I am starting to conclude that the “mainstream medical biology” establishment is guilty of one of the worst ever systematized abuses of a massive victim cohort; not just those with FM but numerous specific chronic pains and dysfunctions for which “alternative” diagnoses and therapies have actually been the HONEST and objective ones all along! I fail to see what is objective and scientific about deliberately ignoring visible / concrete / palpable evidence. By this standard, if a cancerous growth that was pressing on vital organs still looked like normal tissue in an MRI scan, it could be ignored, the patient dismissed as hysterical, and their pain dismissed as a CNS heightened by the patient’s hysteria and hence their own fault anyway, the remedy being “Cognitive Behavioral Therapy”! Reply
Nancy on December 25, 2017 at 2:15 am
Phil! I SO agree. Many examples of this and here is one. There were some studies in the past showing that certain types of massage by a highly-skilled therapist were rated by patients themselves to have the longest lasting, most helpful results. And, in fact, that is true for me. It took almost a dozen massage therapists before I found two who can help me greatly, and have often wondered if I would be MUCH improved if I could go weekly. But insurance won’t pay for it.
Years ago I sent my Blue Cross plan an inch-thick packet of information including studies and trials, asking them to reconsider paying for my massages. Of course it was fruitless. They’re run by lobbyists I suppose; likely mainly the drug industry. “Follow the Money”…because I finally called when they didn’t respond to my packet of information. That packet took me a LOT of time to put together and they didn’t even feel it necessary to reply or respond at all. The telephone customer service manager finally gave me an answer. No-never-not happening, “BECAUSE THEY HAVE NOT FOUND MASSAGE TO HAVE LONG-LASTINGS EFFECTS.” So of course here was my logic- I immediately asked what long-lasting effects they think are possessed by the expensive drugs they’ll approve. Bingo- she was stumped, but remained certain I couldn’t expect even receive a written answer. Reply
dar on January 21, 2018 at 7:55 pm
Prof Phil, yup, it’s like having a car with a flat tire, with allopathic’medicine’ ignoring the nail [magnesium deficiency:’Early signs of magnesium deficiency include loss of appetite, nausea, vomiting, fatigue, and weakness. As magnesium deficiency worsens, numbness, tingling, muscle contractions and cramps, seizures, personality changes, abnormal heart rhythms, and coronary spasms can occur…hypocalcemia or hypokalemia (low serum calcium or potassium levels, respectively) because mineral homeostasis is disrupted.’ https://ods.od.nih.gov/factsheets/Magnesium-HealthProfessional/ Much more, https://www.easy-immune-health.com/signs-of-magnesium-deficiency.html ], but insisting it’s the tire’s air/rubber compound that needs further analysis. If mainstream med docs fixed cars, we’d all be walking, not driving. BTW, after a short time of transdermal Mg usage, my Rolfer was amazed at the transformation of the body & the ease with which it accepted his corrections/re-alignments. Reply
Susan Miller on December 24, 2017 at 3:32 pm
Holy Cow! That questionnaire nails it for me. Yes, yes, yes, to so many items on it. So glad to know that someone else out there knows about this misery. Most of my friends just think I’m so weird. Reply
Cort Johnson on December 24, 2017 at 5:58 pm
Agnes wrote:
“I’ve read all the symptoms, and I must admit that I’m suffering from many of these symptoms. I also have Myalgic Encephalomyelitis. No energy, time of récupération very long, may be days after I go out for a grocery shopping, that means a lot of time in bed.
I hope that funding would be more important because we lose everything agpfter this diagnosis, work, social life. Friends. Capacity to cook a more complicated meal.
I eat the same diet singe my diagnosis, quick thing, I tried to eat healthy though, but I’m sure that I must be lacking important nutrients.
My last blood work shows that I was low in iron. My NK Celles are almost always way below the Norma as well as the ANA. Reply
Cort Johnson on December 24, 2017 at 5:59 pm
I think we’re going to hear something really interesting on iron and POTS from Mayo any time now. For an illuminating iron story check out the Iron Man blog – https://www.healthrising.org/forums/threads/iron-man-a-young-persons-pots-me-cfs-recovery-story-pt-i.4803/ Reply
dejurgen on December 25, 2017 at 7:29 am
Isn’t massive destruction of RBCs one of the more common ways to get low iron and ferritin?
If so then it might link to your previous blog containing information on “porblematic/unelastic” RBCs being vulnerable to “squeezing/destruction” in small hair vessels https://www.healthrising.org/blog/2017/12/21/urgency-ron-davis-chronic-fatigue-research-center/
Cecelia on December 24, 2017 at 7:18 pm
I am grateful and excited that Dr. Oaklander is doing this research. She said she’ll be trying to find and test cheaper drugs than IVIG which probably most people couldn’t get covered—that is my understanding of what was happening.
I was tested and diagnosed with SFN some years back. I have ME/CFS and also Myofascial Pain Syndrome. Many but not all people with FM have MPS, I heard an FM expert say years ago.
The aching from it, contractions and lumps are something. I have two great rollers that I use, one a very large, firm foam roller and the other a polished wooden one of smaller dimensions that can be used many ways. The wooden one is called a MA Roller (forgot how to write it). And I have to do a lot of stretching! There is no way that any pills or even massage would do the trick unless I were able to get skilled Myofascial Trigger Point work every single day. Practitioners with sufficient knowledge and skill are very rare. But luckily, stretching and the rollers keep me out of pain domination. If I slack off, I pay for it with interest.
The small fiber neuropathy or polyneuropathy that is going on is not something I can do anything to fix. It is increasing. I don’t know what the relationship is between/among the ME/CFS, MPS, SFN or Polyneuropathy. Reply
Issie on December 24, 2017 at 10:11 pm
As I get older, my neuropathy gets worse and so does my all over pain. Mayo recently wanted to repeat Autonomic testing. But I didn’t do it. If she sticks me with a pin and I don’t feel it – there are nerve issues. If you feel bees are stinging, there is a vise, have shooting pains and numbness – there is neuropathy. It appears to run in my family and both my parents and sis and I are all Dxd with FMS. You don’t need expensive test – just educated sense. I don’t need to spend thousands to tell me what is already very evident and a one cent pin prick can explain. Now whether it is autoimmune connected – I’m not sure. But we already know I have POTS and MCAS and EDS with FMS. I’d rather my insurance/and me pay for testing on something not already established. I still don’t have a good enough bandaid. But I’m still working on it.
Issie Reply
Nancy M. Henson on December 25, 2017 at 12:06 am
I have idiopathic peripheral neuropathy and some of the symptoms on the list are those if IPN. I have medication to treat all my symptoms so if I were younger, I could work. But at 78, that’s for sure out of the question. However, the biggie is cognition. I had the ability to do many things at once and do them well. I’m lucky to do one thing well. I’m so forgetful its disgusting. I also have ME and those who are the sickest with ME sometimes respond to a drug that seems to help. Sorry, can’t remember the name. I wonder if it would help those with severe FM. I’m diagnosed with moderate ME and FM thanks to now retiring Dr. Lapp. Reply
Barbara Diamond on December 25, 2017 at 11:51 am
I would very much like to participate in any future studies. How do I sign up? Reply
Cort Johnson on December 25, 2017 at 12:14 pm
Kendrick wrote: All I can say is WOW! I suffer with the majority of these symptoms. I have CRPS, RA, Sjogrens and CFS in addition to Fibromyalgia. A lot of the symptoms overlap, which I imagine would make it difficult to diagnose, based on these questions. But it is a real eye opener Reply
Shar on December 26, 2017 at 12:09 am
Response to Agnes above (et al): Does everyone with ME/CFS know about NUUN? Runners use it as a healthy alternative to gatorade: it has vitamins & electrolytes (caffeine optional) so even if you cannot prep food or eat a diverse diet, vomit and/or have diarrhea, you are getting the basics. Each tablet is dissolved in 16 oz water. Thanks for the informative blogs Cort & MERRY CHRISTMAS everyone. Reply
Cort Johnson on December 26, 2017 at 7:31 am
I’ve heard good things about NUUN. Check out some other ways to increase blood volume in Health Rising’s Increasing Blood Volume Resource section Reply
Ron P on December 27, 2017 at 1:28 am
Cort I read a study of 1,300 CFS Pt 90% had a cholesterol >
225https://www.healthrising.org/blog/2017/12/24/fibromyalgia-small-fiber-neuropathy-symptom-study/
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