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Adrienne Dellwo

Is Fibromyalgia Misdiagnosed Neuropathy?

By August 16, 2013

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Research Brief

Recent research suggests that some diagnoses of fibromyalgia may actually be undiagnosed small-fiber polyneuropathy (SFPN.)

First, let's break down that term:

  • Neuropathy is pain from damaged or dysfunctional nerves;
  • Poly means in multiple places:
  • Small fibers are structures in your skin, organs, and peripheral nerves that provide sensation to your skin and help regulate autonomic function (the automatic jobs your body does, like controlling temperature and breathing.)

In this study, researchers analyzed SFPN-associated symptoms, conducted neurological exams, and looked at pathological and physiological markers in a small group of people with fibromyalgia and a control group. They found:

  • skin biopsies showed SFPN in 41% of the fibromyalgia group but only 3% in the control group;
  • fibromyalgia participants scored higher on two neuropathy scales than did health controls;
  • similar autonomic function between the groups.

Researchers concluded that some people diagnosed as fibromyalgia actually have unrecognized SFPN. That suggests that doctors should consider SFPN before diagnosing fibromyalgia, especially since SFPN is a well-defined disease with specific treatments that are often quite effective.

It's worth noting that some treatments approved for neuropathic pain, including Lyrica (pregabalin), are successful in many people diagnosed with fibromyalgia.

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Comments
August 16, 2013 at 8:25 am
(1) dfwmom says:

Please expand on your statement that there are specific treatments that are quite effective.

According to Curr Pain Headache Rep. 2011 June; 15(3): 193Ė200.
doi: 10.1007/s11916-011-0181-7, I saw this quote:
“Treatment of any underlying causative etiology of a small fiber neuropathy is likely to be the most effective treatment of pain, when possible. Many cases of small fiber neuropathy will remain idiopathic, or will still require treatment of pain. There is very limited evidence for specific medications in the treatment of pain from small fiber neuropathies”

It sounds like you are only in luck if they can figure out WHY you have SFPN. If it’s diabetes or something, you might make some progress. If you can’t treat an underlying cause, it sounds like you are back in the same boat — getting “pain management” treatment. After years of pain management treatment, my impression of it is very poor. Throwing your money on a bonfire and setting it on fire might be a better choice, since “pain management treatment” can actually worsen your condition. Biofeedback and self-hypnosis were the best they had to offer. Add some snake oil, and you still don’t have much for your time and money.

Your best luck would be if someone could find out what was causing the SFPN. Otherwise, pain management treatment for SFPN sounds a lot like pain management treatment for fibro, to me. A rose by any other name…

August 16, 2013 at 10:58 am
(2) K. Martin says:

I think it makes sense that neuropathy is a possible treatable element of Fibromyalgia, but does it account for all of the symptoms?

August 16, 2013 at 3:33 pm
(3) Anonymous says:

I echo the comments from dfwmom. For those with fibromyalgia or related central sensitivity disorders, a pain management program is the last place you want to be. They are very expensive and not worth your time or money. Not only will they have no positive impact on your condition, they will often leave you worse off then before you began the program.

I completed a four-week pain management program a year-and-a-half ago and am still trying to deal with the spread of symptoms that resulted from my time there. A pain doctor who stared more at the computer screen than interacted with me, a licensed professional counselor whose counseling sessions and presentations were of no value to me, and physical therapists who just didn’t understand fibromyalgia and its associated pain. All this from one of the supposed best pain management programs around (this one in Dallas).

Did they set out to make my condition worse? Of course not. Did I leave the program much worse than when I entered it? Unfortunately yes. The spread of my accompanying symptoms was compounded by the hit to my bank account. These places simply do not know how to treat individuals with fibromyalgia or similar conditions. Biofeedback, CBT, and physical therapy are expensive and worthless. Being a human dartboard for medication is no fun either, especially when nothing helps but often results in terrible side effects.

Even if it’s determined to be neuropathy/SFNP, what is the cause? Without a proper diagnosis AND the determination of its cause, treatment will not work. You canít treat symptoms and expect a good outcome. You treat the CAUSE(S) of a diagnosis. Thus, it’s better to find a good rheumatologist or internal medicine physician to keep working at finding the cause of one’s condition. Hopefully, it will come in one’s lifetime and before one goes broke — financially, spiritually, and emotionally.

August 16, 2013 at 5:09 pm
(4) MegK says:

I agree with the previous comment that this research identifies a possible cause for SOME fibro symptoms, but seemingly not all. The longer I live with this
condition, the more I’m convinced it’s a multi-causal condition. I definitely could believe this type of neuropathy could be contributing to my conditions, but I also think immune issues, allergies/asthma, pain/sensory sensitivity, “leaky gut” (vitamin deficiency) and HPA dysfunction are part of the picture for me. And I know for me personally the engine at the front of this long train is depression.

August 16, 2013 at 5:23 pm
(5) Mary says:

Treatment of pain may not be perfect but it can be effective. There is so much that is unknown about fibro AND about sfpn as well— I was reading recently that they have found that many Children with widespread pain have neuropathy.

Folks should not give up hope. Maybe if you have neuropathy they won’t find the cause–or maybe they will-but either way it can at least be treated.

Not cured probably but ‘helped’ at least. I know that my treatment is helping me feel a lot better than I used to, no I’m not cured or painless–but I’m functioning and grateful for it.

Thanks Adrienne for continuing to look for any thread of hope to tug at. :)

August 16, 2013 at 5:49 pm
(6) Liz Kerman says:

I can’t help but think that if it the cause or seat of Fibromyalgia was one of these more obvious and recognised conditions, they would have a cause and treatment program that is effective!

August 16, 2013 at 6:54 pm
(7) Diana says:

I was diagnosed w/fibro more than a decade before my mother was diagnosed w/diabetic neuropathy which was exclusively in her legs & feet. It wasn’t until that event that I became aware of the symptoms of neuropathy & how akin to the pain in my hands & feet it was.Even I thought maybe I’d been misdiagnosed. However, aside from the numbness etc. in my hands & feet I have traditional tender points thruout my body as well as overall dull achiness plus sharper pain in my hips, back & shoulders as well as overwhelming fatigue, stiffness & fibro fog. It should be added I also have psoriatic arthritis, tendonitis in my elbows & am hypothyroid which also contribute to making me feel like crap everyday. After 27 years of pushing & dragging myself just to take care of the basics & I do mean basics (shopping for groceries & Rx, cooking, light housekeeping, personal care & doctor visits) @56 don’t know how much longer I can do this. My family all predeceased me, so much of my motivation & support is gone & its just getting harder. My 1 inspiration remaining is my fibro friend who is now in her 70′s & has had it since her 20′s, even longer than myself.Unfortunately she’s in another state, but thanks to the internet we have a link to each other & a window to a world our illness has marginalized us from. I look forward to your blog on Friday’s, ever hopeful it may impart some life-affirming developments for us to cling to.

August 16, 2013 at 7:41 pm
(8) Dianne says:

I have had fibro for more than 30 yrs. and am on a cocktail of drugs for pain management including cymbalta, vimovo, tylenol for arthritis, and antidepressants. I have also been going to a pain clinic for over a year now where I receive 18 injections of Marcaine every 2 weeks in my neck, back and shoulders. It is amazing how well those injections work as long as I am careful not to overdo it. I live in Canada so my drugs are mostly covered by husband’s work and the pain clinic is covered by health care. I love health care here. I don’t know what I would do without it with all the doctors and specialists I have to see. I am considered uninsurable because of fibro, arthritis and back problems.

August 16, 2013 at 9:27 pm
(9) Gloria says:

I was diagnosed with polyneuropathy and was not offered ANY kind of treatment. In fact the neurologist made a throw away comment — “I could go to the coffee shop and find that 60% of the people over 60 would have symptoms of neuropathy!”
Luckily I do not have much pain with my fibromyalgia since I am on a fairly high thyroid dose, but the tingling and NUMBNESS is rather bothersome!!

So I too would like to hear about “treatments” for neuropathy!!

August 16, 2013 at 9:30 pm
(10) Julia says:

Adrienne – When you mention a clinical study, please include the investigator names and where the study was performed.

August 16, 2013 at 10:40 pm
(11) C says:

Interesting but not surprising. I think there is more to this illness from a neurological standpoint than has been realized thus far. …just my hunch. It would be great if there were medications such as this that would help but I get really bad side effects to some so it’s a bit frustrating. Gabapenten for example is a drug I cannot take. Once I hit a certain dose I was crying for the majority of the day every day on it. My doctor was smart enough to take me off of it and to deal with the situation. Glad he did because not all docs have been this prompt in listening to me regarding nasty side effects and it has taken it’s toll. I’m just wondering if there would be other drugs..less risky drugs when it comes to side effects for this sort of illness. Wonder how baclofen is thought of in regards to this…..

August 16, 2013 at 11:08 pm
(12) David Whiteford says:

Bravo Adrienne, yes SFPN is certainly correlated with Fibro.

Fibromyalgia is a bucket diagnosis into which various symptom clusters are thrown, as is SFPN. Both are diagnosed most often by the exclusion of other diseases. As I have suggested to you before I believe that Fibro is the result of damage to multiple areas by what is called Morgellons disease.

Morgellons seems to attack the skin, and also the nervous system, resulting in SFPN. It also damages the hypothalamus deregulating the sleep cycle resulting in Chronic Fatigue. The nerves from the hypothalamus extend to the digestive system, Morgellons deregulates this system as well, resulting in many symptoms not the least of which is suppression of the immune system. There is much more to this to list here.

As long as the CDC denies the existence of Morgellons many illnesses will continue to exist without an apparent cause, such as Fibromyalgia, Chronic Fatigue, SFPN, etc., as well as the great reduction of capacity that must be transpiring among the functional unknowing sufferers. May all be healed!!

August 17, 2013 at 2:51 am
(13) kathy says:

Hello,
I have had fibro for 18 yrs. In the last year and a half I began having burning pain in my feet. We checked for sugar problems, circulation problems, and all that is ok. I was put on gabapentin, and it worked great! BUT, the side effects made it impossible for me to take. Things like suicidal thoughts (something I really don’t need, with the way this life is working out), very angry, hopelessness (again, don’t need any more of that). Since taken off the gabapentin, the pain level has steadily risen. I’m getting ready to try Lyrica, which lists similar possible side effects. But I’m gonna give it a try, only because the gabapentin
did take away most all of the neuropathy pain. I forgot to mention that I went to a specialist for a bunch of tests and got a dx of neuropathy, but was given no cause for it. I’m just writing about my experience to put it out there, I don’t have any suggestions or help to offer. But I often feel so much better after having read of someone else who is having similar problems. But I will add, if it wasn’t for Jesus, I would probably be long gone by now.

August 17, 2013 at 6:16 am
(14) sue oetrie says:

Confusion in diagnosis due to multiple terminology. Cfs.me.burn out.fibromyalgia and the patient specific collection of chronic conditions associated with each. Hard to diagnose and difficult to treat. Lack of understanding means medical profession not consistent and public show little empathy. Victim can feel isolated and helpless. Best approach using variety of therapies eg CBT mindfulness meditation and yoga therapy with graded exercise. Make it your life philosophy to live your best day today. Work on positive reinforcement of everthing you do and agree to do better next time.

August 17, 2013 at 9:42 am
(15) David says:

I was diagnosed back in 1998 with fibromyalgia. My earlier years were the worst in not knowing what was wrong and I struggling with horrible reactions to different medications. I cannot take anti-depressants or anxiety drugs. I even had one small town doctor who got so flustered with me ,he told me that it was all in my head. He was right in that I ended up at the Medical College of Georgia under the care of a doctor who did studies on anti depressant drugs. He stated it was a wonder I was still alive becauseI was that 1% who dies when taking the drugs. The effects of the drugs had me daily with constant depression,anxiety and panic attacks for about 2-5 years before my brain healed back. Also during this time I had my Pastor praying and counseling with me. The peak of the mountain came when I excepted that life would never be the same,but with the help of God I was going to make it. After trial and error with other drugs including herbs I ended up taking the max dosage of Ultram 400mg ,4000mg of Neurontin and lots of advil each day. This allowed me to function for years as a zombie but where I could do my job about 60% pain free. Then when Lyrica came on the scene it helped me drop my Neurontin back to about 800mg daily with about 75% pain free. During this journey there has been days the pain was greater but with the help of the Lord I made it through. Now I am entering a different challenge in life.Over the last 5 years my left arm ,hand and foot have had feelings of pins,needles and total numbess and now my right side. It has gotten so severe I have now increased my Lyrica to 400mg Ultam 400mg and Neurontin to 1600 and advil but the pain continues to increase. It presently has me sleeping about 2 hours each night sitting in a padded chair. Ps : My mentor in life is my dad who has suffered for over 40 years with even greater pain than I have. He is now 83 and still fighting with the help of God.

August 23, 2013 at 5:40 pm
(16) Buddy says:

I was on that roller coaster for over three years, I was told there was nothing wrong, Sjogrens syndrome, fibro, I kept getting worse, was sent to Mayo of course nothing shwoed up there, back to Pittsburgh where they fialy did a punch biopsy, yep, SF neuropathy, with no know cause, now its to late for any kind of reversal, the medical community can be ruthless when it comes to listening to us, they seen to know it all

August 24, 2013 at 1:02 am
(17) Sylvia says:

After I was diagnozed with Fibromyalgia fairly quickly, about 12 years ago, somebody sent me to a traumatologist and he said that was nonsense, that I really had Polyneurophathy and that it was easy to cure. Yay!! He prescribed terribly high doses of Vit. B complex and said I would be OK in 6 months.
I came out walking on air to purchase the B’s, but soon after felt nausea and my clinician said it was very dangerous to take SO MUCH vit. B, to stop at once!
After trying a few of the regular stuffs for Fibro, I’ve chosen to kill the pain with Tramadol and some acetomiphen. That keeps me going but they say the body gets used to Tramadol.
I think the polyneurophy idea is as old as the hills. BTW, I see somebody is taking Ultram along with Lyrica and Neurontin, please do be careful, those mixes are dangerous and don’t help much. All of these medicines affect one’s liver and kidneys, heaven help us!!
Good luck to all, great to read you, God bless!

August 24, 2013 at 5:17 am
(18) sue Petrie says:

I identify several issues with ME. Confused terminology and a lack of differentiation between them. ME is used in UK to identify a phsycho somatic disorder linked to stress combined with complete and overwhelming fatigue often coupled with hypothyroid poor sleep and cognitive dissonance wrapped up with pain and heightened intolerance to any extended physical activity. There may be as many as thirty minor additional symptoms such as sweating cold and flu symptoms etc making diagnosis and treatment haphazard and often ineffective. While western medicine can treat individual symptoms their erratic nature makes taking a variety of medication costly and ineffective in the long term. Increasingly doctors are encouraging patients into CBT mindfulness meditation and yoga therapy in the belief that a person with ME needs to change their lifestyle and take a different view of their world which avoids stress.

August 24, 2013 at 6:51 am
(19) Jeanne says:

I refused to accept Fibro and CFS as a diagnosis. I wanted to know why I had them.
If you or anyone in your family is having problems with joint pain ,shooting pains, digestion, eye conditions, (negative sjogrens, corneal differences to name a few) poor quality of teeth (weak enamel, white spots etc, cavities), all manner of ear/hearing problems, hand and foot pain (maybe you wear “comfortable shoes”)you have pronounced veins, autonomic dysfunction, just to name a few, maybe you have a genetic condition called Ehlers Danlos, Hypermobility type. Though there are other types, this is the one I was diagnosed with. The reason it can affect all body systems(to include the neurological like brain fog) is because if you have it, you are missing a collegen gene. It affects everything ,some systems worse than others.
Instead of taking all of just your symptoms to doctors, FIRST talk to relatives and ask them if they have any of these problems. Research the syndrome. You might not see yourself in the criteria–I didn’t for years– so try googling your weird symptom with EDS, Hypermobility type. Take what you find with a grain of salt obviously!
Make a family health tree. Did one of your parents have heart issues? (Mitral valve problems maybe) Foot problems with orthotics? Achy stiff hands? Anxiety? Depression?
In my family, each person has a different presentation to the same thing. Some of us get Fibro/CFS, most of us don’t. Some of us can do what you see in the pictures of EDS, Hypermobility, some of us, not so much. Maybe I still have Fibro and CFS, but at least I know why. For me, its easier to live with if I know what I am fighting, or what I have to make friends with!

This is a good site!
http://www.ehlersdanlosnetwork.org/hypermobility.html

Good luck to all of you. There is power in knowledge!

Jeanne

August 25, 2013 at 12:20 pm
(20) David Whiteford says:

According to Jeanne’s comment a genetic condition that results in low collagen causes many of the same symptoms of Fibromyalgia. Not to beat a dead horse, but according to the Carnicom Institute Morgellon’s disease results in extremely low levels of the amino acids which are the building blocks of collagen. I strongly suspect Morgellons as the casual agent of our diagnoses. Check out Carnicom.com

August 26, 2013 at 4:39 am
(21) Debra An says:

I am so tired of doctors treating symptoms and NOT treating the cause. That is just crazy! I do not want a pill for each of my many symptoms, with the chance that the pills will cause permanent damage and possibly death. I have gotten with one pill I was prescribed permanent damage. I keep telling the doctors to treat the problem, not the symptoms. I get no where when they treat the symptoms and not treat the underlying cause!
I am thinking about trying Chinese medicine, as the western medicine doctors, who are strict western medicine doctors, do not believe in additional supplementation! I have heard great things about Chinese medicine and how it has helped so many people. Most of the people whom I spoke to told me that they usually give them a tea to drink a few time a day. I love tea, I just hope if they give me some, that I like the flavor!??!

August 29, 2013 at 4:36 pm
(22) dZ says:

Agrobacterium is used to GM our food supply and it’s DNA has been shown to be absorbed by people and it changes human DNA. Agrobacterium causes a genetically induced disease called “crown gall disease” in plants. It is an opportunistic infection that takes advantage of a weakened immune system. The typical progression is that someone gets “Lyme” and that compromises their immune system then sometime down the road they develop morgellons disease also. Morgellons is crown gall disease in humans.

September 5, 2013 at 8:49 pm
(23) Julie says:

Interesting report on this research. I’ve read several reports on this research and you are the first one to point out that they said some cases of Fibro might be un-diagnosed SFPN, rather than every other report just saying that they’ve come up with a new way to diagnose Fibro. Good article!

September 9, 2013 at 3:11 pm
(24) Coping Today says:

It’s interesting that half the patients had undiagnosed SFPN although my guess is none of them had metabolic syndrome OR glucose intolerance. As a result, doctors and researchers need to re-evaluate what they believe to be the root cause of SFPN. At the same time, they discovered 1/2 of the fibro patients tested had autoimmune diseases. This is significant. What diseases did they have and how were these diseases discovered??

As far as SFPN – from what I’ve read, it’s a chronic, progressive and there is no cure: http://www.ccjm.org/content/76/5/297.full

September 11, 2013 at 10:18 pm
(25) Caroline says:

My grand mother has done everything mentioned here, had all types of therapies and tests ending in pain and more pain. She also went to several pain management centers which made her condition much worse.
We were sick of seeing her suffer with all types of medications, needles, CBT, more pain killers etc.. one day we decided we would try something different and did our own research as doctor were literally killing nana with all of those medications. The first step was to try acupuncture and that helped her a bit, then based on a remedy report (prize the lord) ended up changing her diet, and following it everything they recommended step by step. It’s been about five months since my nana is herself, doesn’t complaint about pain and her Psoriatic Arthritis went away almost immediately.
We found it here: http://www.healyounaturally.com/fibromyalgia/ at the end of the page.

None of her conventional doctors ever, ever told us to try to change her diet, or try acupuncture etc…

We will never pump her with medications or put her through pain again.

October 2, 2013 at 1:53 am
(26) TNMOM says:

I was diagnosed almost 2 years ago. Since then, my PCP and I have have done so much research trying to figure things out. My hands and feet burn constantly. I have been through so many different drugs. This study was done, and yes, it is neuropathy. Some Fibro patients experience this type of pain others do not. It would be interesting to find out what those that have this type of pain have in common. Do we have low vitamin levels? Where we all on many anitbiotics for various infections? I don’t know the answer. I don’t think doctors will know either until they start looking at the all of the patients and looking dividing them into groups and looking at the similarities. I think our past may have something to do with it, I am just not sure what that is yet. I stay in constant pain, and I keep telling myself, I don’t want to be like this the rest of my life. There has to be an answer.

I recently saw a “Fibro” specialist in my area. He basically told me that, everyone is response differently to meds, and that even when I find something that works, it will quit working after a while, which already happen to me once. I thought when I first had the pain almost 2 years ago, that it was the worst pain of my life. I was wrong, the pain came back even worse this time. No combo of meds has worked. The specialist said to not waste my time or money with the morphine type meds as most Fibro patients don’t find relief with those unless on really high doses. My PCP & I had tried 2 different types of those and neither had worked, and I did not want to go to any higher of a dose. So, it was back to the Tramadol, which works sometimes. There really is nothing that I have found yet, that works for the burning pain in the hands and feet, even after raising the Gabapentin to 3600 mg a day.

As many have said, until they find the cause or causes of our problems, I don’t think we will get much relief.

April 3, 2014 at 8:33 pm
(27) paula says:

Dear fellow fibro friends

If no one cares I just need to …complain for a minute. I’ve been in a flare up now for almost 3weeks and see no sign of getting better. I’ve had to cancel hair appt., Dr. Appt., carpet cleaning and counseling appt. My brain is solo bad right now that I’m almost afraid to say anything to anyone for fear of how it will come out. This is the worst flare I’ve had in a long time. It seems as if I have had to put my entire life on hold. It seems I can’t make plans to do anything.I am solo depressed! Thank you for listening to my tirade and God bless all of you.

Paula

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