Check out what an enterprising fibromyalgia and pain researcher is doing, how the immune system is involved in pain, and the most exciting pain research going on in an overview of an interview the Pain Research Forum did with Claudia Sommer, MD.
Claudia Sommer was one of the first researchers to uncover the presence of small fiber neuropathy in fibromyalgia
Claudia Sommer, MD is a busy woman. The director of the Peripheral Nerve Laboratory at the University of Wurzburg in Germany, she investigates the role cytokines and antibodies play in producing pain, is working to standardize diagnostics in neuropathy. She also treats fibromyalgia patients and people with neuropathic pain. She has training in psychiatry, neuropathology, anesthesia and neurology.
Over the past couple of years she’s been focused on fibromyalgia which she characterized as a “very difficult pain syndrome”. She noted that many of her colleagues still don’t believe fibromyalgia exists, while others believe it’s a somatoform disorder.
She was one of the first researchers to elucidate the small fiber neuropathies found in fibromyalgia. Like others, the finding of the nerve damage in the skin of fibromyalgia patients surprised. One of the exciting thing about the small fiber neuropathy finding in FM is that they’re an antidote to the naysayers asserting FM does not exist. Something is causing those nerve fibers in the skin to disappear.
“Even those who do believe that it exists say it’s very enigmatic and that we don’t know why fibromyalgia patients are in pain, and so finding that there is actually pathology in the periphery is very exciting. Claudia Sommer
Skeptics still abound though. It’s going to take some time to convince FM is real.
So there is still skepticism, and it’s going to be a long way before we can convince everyone, but the more we work toward finding physiological abnormalities in fibromyalgia patients, the more we will be able to sway our colleagues. Claudia Sommer
Stating that her lab has seen “many patients” and is continuing to study them more and more she’s apparently been hooked by the SFN problems she’s found in FM. With little doubt now remaining that SFN is present in a significant percentage of FM patients Sommer is trying to figure out what’s “burning up” those nerves. With her strong focus on the immune system she went after the pro-inflammatory cytokines. A 2014 study, however, suggested cytokines were not the answer for the SFN in FM.
They might be for other types of pain found in fibromyalgia, however. Instead of pro-inflammatory cytokines being high in FM they found low levels of anti-inflammatory and pain reducing cytokine called IL-4. Perhaps pain causing cytokines don’t need to be high if pain-reducing cytokines are low.
The finding was strong enough for them to “build” a mouse model that doesn’t produce any IL-4. The dorsal horn of the spinal cord plays a major role in pain sensitization in FM and other pain conditions. If low IL-4 levels change how the dorsal horn functions then boosting IL-4 levels might reduce pain in FM.
Treatment Options
Sommer noted in a recent paper the modest effects most drugs prescribed for fibromyalgia have. Most drugs cause a 30% reduction in pain in half of FM patients and a 50% reduction in pain in about a third. These improvements do not translate into global improvements in well-being, and many patients who experience initial improvements will later drop the drugs because of side effects or reductions in effectiveness. Placebo effects may account for up to 60% of the drugs apparent effectiveness (as well as its perceived harms). The medical world has a long way to go to build effective FM drugs.
In a section titled “Hope for a Magic Bullet” Sommer covered some newer, mostly poorly studied treatment options but no magic bullets. (She did note that many other drugs are in the early stages of exploration in FM).
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Sommer did not find any “magic bullets on the immediate horizon but noted that interest in new FM drugs is high
Growth hormone – improved pain and fatigue but high costs and side effects were an issue.
- Cannabinoids – Nabilone is a synthetic formulation of tetrahydrocannabinol, a factor found in cannabis (marijuana). While one small trial suggested nabilone was more effective than placebo in reducing pain and improving sleep another did not. Side effects were common. A recent National Pain Report survey, however, suggested that medical marijuana may be far more effective than any of the FDA-approved drugs for FM
- Quetiapine – Quetiapine is a short-term antipsychotic that enhances serotonin and dopamine levels and reduces sympathetic nervous system functioning. Several studies suggest quetiapine may be helpful but side effects particularly fatigue, are again an issue, as are concerns about the long-term use of the drug.
- Low Dose Naltrexone – was superior to placebo in reducing pain and improving mood but did not improve fatigue or sleep. More study is needed.
Resources
- Tackling Pain and Depression in Fibromyalgia: Quetiapine Scores Some Benefits in Clinical Trial
- Low Dose Naltrexone Resource Center
Immune Mediated Pain
Cytokines
Sommer has also been engaged in understanding immune system causes of pain. Pro-inflammatory cytokines were clearly been associated with pain in animal models, but the situation is more complex in humans. Sometimes high pro-inflammatory cytokine levels translate to pain and sometimes they don’t. Sometimes they are present and sometimes they’re not.
Pro-inflammatory cytokines cause pain when injected in one area and deaden pain when injected in another. It’s clear that blocking pro-inflammatory cytokines can reduce pain in rheumatoid arthritis but it does nothing for low back pain.
Higher levels of the pro-inflammatory cytokine IL-6 as well as IL-10 in skin biopsies of patients with peripheral neuropathy experiencing pain could explain why some peripheral neuropathies are painful and others are not.
Autoimmunity
An autoimmune process causes the motor system of the brain to get turned on too high in Stiff Person Syndrome
Stiff Person Syndrome – Autoimmunity is becoming an ever more interesting topic in pain. Stiff Person Syndrome appears to be largely an immune-mediated disease of GABA deficiency. GABA – a feel good chemical in the central nervous system – is an inhibitory neurotransmitter that turns off the production of glutamate – an excitatory neurotransmitter.
In Stiff Person Syndrome (SPS) one’s muscles can instantaneously lock up – causing a person to suddenly fall over. People with SPS often experience severe muscle spasms and muscle stiffness so severe they have trouble moving. It’s an intriguing illness given the stiff muscles often found in fibromyalgia.
Deficient GABA signaling in the spinal cords of SPS patients leaves the motor system of the brain turned on – causing the muscles to go into spasm. SPS is an example of a pain disorder caused mostly by problems in the brain and spinal cord.
SPS appears to be largely caused by high levels of autoantibodies (GAD 65) to an enzyme involved in synthesizing GABA. This autoantibody, intriguingly enough, may underlie a wide variety neurological, metabolic and neuropsychiatric conditions that have been linked with GABA inhibition, including some speculate, fibromyalgia and ME/CFS.
Bearing close resemblance to a protein on a Coxsackie virus, the GAD antibody suggests all these conditions could have been triggered by an infection.
Peripheral Neuropathy – Peripheral neuropathy causes of the numbness, tingling and other nerve sensations common in FM and many other disorders. It has recently been associated with autoantibody attack of structures in the peripheral nerves called nodes of Ranvier.
Complex Regional Pain Syndrome – Autoantibodies to autonomic nervous system receptors in subset of patients with complex regional pain syndrome (CRPS) implicate autoimmunity in this disorder as well.
Promising Research
“Pharmaceutical investment in (voltage gated sodium channels) for pain therapeutics has expanded exponentially….Moreover, emerging clinical combined with recent breakthroughs in structural biology pave the way for a future of fruitful prospective drug discovery.” Bagal et. al.
Problem with the ion channels in the nerves or channelopathies could be the next big deal in pain research
Some of the most exciting pain research, however, concerns the work on ion channels. Sommer called the findings on voltage-gated sodium and TRP channels, “eye-openers” that could go a long way to explain mysterious cases of pain sensitization. These are small ion channels found on nerves that determine whether they get turned on or not. A mutation in one of these channels (channelopathy) could be sufficient to send pain-producing nerves into a frenzy.
The first channelopathy discovered caused burning pain that was triggered by increasing temperature in a condition called erythromelalgia. Similar channelopathies caused burning pain and flushing in a rare genetic condition called paroxysmal extreme pain disorder (PEPD). Other channelopathies can cause a complete cessation of pain. Most recently a channelopathy was found in about 30% of people with small fiber neuropathy.
There is still much to learn but with recent breakthroughs enabling a better understanding of how these channels function, pharmaceutical companies are now eagerly exploring drugs that can impact then.
Another possibility are microRNA’s that turn on or off genes associated with these channels. Sommer is currently involved in a large European study examining the effects mRNA’s may have on people in chronic pain.
The Health Rising Forums
Inquiry of the Day on the Forums
The Peripheral Neuropathy Poll: find out if you have peripheral neuropathy and take the poll.
Very exciting indeed.
That channelopathy…I wonder if that is why the National CFIDS Foundation has an anesthesia protocol that says not to use the sodium channel during surgery with general anesthesia?
ncf-net.org
When I got DXd with FMS from Mayo Clinic, I was skeptical. Two doctors were trying to convince me it was real and I had it. LOL
So many POTS people have SFN and they are finding GAD65 to be an issue for many. It’s included as one of the autoimmune test they do for POTS patients at Mayo. I have thought for a few years too much glutamate could be one of the problems.
Nice that more research is going into this.
Issie
Good for Mayo! That may be a player in quite a few neurological disorders.
This is obviously an important part of the jigsaw puzzle; and I am wondering, how does it all fit in with what some of us have discovered improves our condition, i.e. carefully paced exercise programs. I can report continued improvement, long-residual painful spots are finally dying away. And my threshold for intensity of exercise without triggering the malaise afterwards, is rising and rising. I conquered a significant hill on my bicycle a few days ago, that I would have had to walk up at any time in the decade preceding recent times.
And how does it fit in with the POTS-type phenomenon that fibromyalgics suffer? (Again, I am gradually more and more able to do things like squatting briefly, that I could never do before). I am sure it all is connected somehow.
I wonder if as we improve, the small fiber neuropathy is actually improving along with everything? And is there improvement in other specific factors like flow of blood and intersticial fluids through the myofascia? Possibly the myofascia is regaining elasticity lost in the past.
My laymen’s guess: I wonder if those stress chemicals are no longer shutting things down as much? Maybe they’re not shutting down blood flows to the muscles -and the toxins are no longer building up as much – sending myofascia crazy???
Makes sense, could be what is going on. Funny thing, I have been hit with a major depression in the last few days over a loved one’s sudden serious illness (nocturnal wakefulness, off my food, etc) but my fibro pains have if anything diminished noticeably. I am starting to think of myself as “almost cured”.
Yet I would argue that flight-or-fight stress years ago played a major role in my succumbing to fibro. Different kind of stress, is what I say. I wonder if there are stress chemicals that act as you say, from flight-or-fight stress as well as from “over-exertion”? In fact I would argue that the damage from “over-exertion” only starts to become a factor AFTER something else has kicked the cardio/muscular system into self-destruction.
Maybe “empathetic” depression is beneficial….?
I was impressed with Mayo in AZ. I had to go back three different times and get more testing. The first time was three weeks, second and third times was two weeks each. But they were very thorough with me and discovered a few things considered in the rare illness category. I got mostly very good doctors. It’s a well oiled machine with how it runs. Getting a good pivotal doc who will get you to the right docs and have correct testing done is very important. If you have good insurance- they aren’t cheap – I found it beneficial.
Of course, I’m also really happy to have found Dr Stephen Fry – in Scottsdale, AZ. He put the final piece of the puzzle together for me with the discovery of the malaria like Protozoa FL1953 and Lyme co infections.
Issie
Cort, it’s funny that you mention Erythromelalgia. I have Erythromelalgia in addition to cfs/me and fibro and small fiber neuropathy. I have always thought that they were related to each other. I’ve often wondered how many other people with cfs/me also have Erythromelalgia.
I was wondering that too given symptoms.
My skin is very sensitive when touched, it feels like a sunburn, I have always thought it was the nerves near the surface of my skin going dead. I hope Ms Sommer will surprise again and find out what is distroying the SFN in FM. It amazes me how pro-inflammatory cytokines can cause the pain in FM and other times it doesn’t. Looking forward to what comes across her desk next – maybe something else to put into the naysayers hats.
Started on LDN and I am feeling a lot less pain!
i will pass on the scorpion venom!
No scorpion venom???? 🙂
I have often said that one of the pains of fibro feels like sunburn that is not just on the surface, but affects an inch or so below the skin as well.
Nice description
A lot of fellow fibro sufferers have agreed with that description.
Wow, I wish I still lived in Wurzburg area! I have Princess and the Pea type Fibromyalgia (Allodynia, hoped I spelled that right). I can feel my husband, the drummer, tapping tunes with his foot in the car and it feels like a jack hammer. The first time he realized I was feeling something so faint so profoundly, because he tested me, stopping and starting, to see if I noticed, he realized, wow she’s for real. I have sun burn pain, and can’t leave my home because I can’t wear clothes and have to lay on fur material throws and put on Gold Bond Powder while lying in an ice cold air conditioned room. I have to keep my home dark, always wear sunglasses. I have a Kindle because I can read on black pages an dim the white letters. I taste smells and boy can I smell. Now my new thing is feeling like bugs are crawling on me. My hands and feet burn and tingle now. I can’t put my arms above my head because my hands go numb. My skin turns corpse white, blood blotchy red and purple, and sometimes blue lips and hands. Doctors test me, everything is negative so I must be great or as one Dr asked me recently “Do you have a bug fixation?”. New Doctor. Someday I will donate my body to science and in the future all these and all my other “unproven quirks” will be a reality. But until then I just keep on “Smiling at the rain. Laughing at the pain. Going with the changes. Keep on smiling.” And fire the Dumb@$$
Doctors who ask things like bug fixation because they don’t have a test smart enough to figure out the Enigma, which is Fibromyalgia.
Deborah,
I had blue tints put into my prescription glasses which is much lighter that ordinary sunglasses. The blue tint stops the extra light from TV fluros etc from messing with your brain. Works extremely well and stops or minimises the seizure activity. My naturopath explained to me that my body can no longer absorb or hold onto certain minerals, mainly magnesium which I now take 2thousand milligrams per day which greatly reduces the muscle spasms and also helps me sleep a little better. The reduced muscles spasms also mean I no longer use a walking stick and that in itself is amazing to me. Vit B2 is not absorbed either so I take 100milligrams per day and this reduces the electrical shock feeling I get in my brain which also reduces the amount of migraines – I can take up to 400 milligrams per day if I have a headaches that won’t go away. I hope this helps you. I also am frustrated at the lack of compassion and knowledge from some Drs here in Australia so even after 25 years of this shitty disorder I am on the road again looking for a new Dr.
Quirks and Jerks, what can we do but laugh
Trish,
Thank you so much for sharing the “elixir” combo I have no doubt it probably is some kind of leaky gut thing as IBS was the killer after 10 years of successfully treating the beast all natural and the ability to function be “normal” IBS was the first nail in the coffin so to speak. Funny, just went out yesterday to replenish my vitamin stock, like you, take Wonder Woman doses, spent $80. But if increasing will rid migraines, cease spasm and who needs rose colored glasses. I celebrate my 24th anniversary in September. I remember because it was 6 months after Chemo-lite for Cervical Cancer and 2 years from getting Fifths disease measles, the woman who never gets sick, was sicker than she had ever felt in her life and honey, my “non-progressive” syndrome kept on progressing. LOL!!! Thanks again, God bless, happy thoughts, and stress free days.
Deborah, maybe you could try PanaSeeda Coriander oil for leaky gut. All the oils of this company are in a class of their own.
All the best.
Ria, I have never heard of this at all, but I will investigate this further. Thank you so much for the lead. God bless, Carry on, and keep on Smiling!
Have you ever checked to see if you gave ARACHNOIDITIS? I was told I have it and shortly after skin biopsies showed small fiber neuropathy. A lot of your symptoms mimic mine. Unfortunately like FM and the rest the is no cure, medication or surgery. I can only manage symptoms which are severe burning, stinging, pain, and at times feeling like bugs are on me or water trickling down my body.
I wonder, one can get skin biopsy for diagnostics purpose? Or is it just for research now?
And I remember the first time I’ve read about Small Fiber Neuropathy it was tied together with a treatment: IVIG (I think it was Teiteulbaum’s word)
What about it?
Would the fact that this treatment is really expensive make it not an option? Or it just isn’t an option cause it doesn’t work?
I had 2 skin biopsies from my right leg at Duke ordered via neurologist to validate SFN. The test was run through EMG department. It’s a bit pricey depending on what insurance will pay. Fee for EMG, fee to lab to run test, fee for pathology. Worth every penny to validate the pain! Next step is with a peripheral Neuro to determine the underlying cause(s) and treatment plan. I am sensitive to 95% of medications, so it’s a crap shoot. Also have Hemicrania Continua and possibly a facial Dystonia. Looking at DNA sequencing to look for hereditary or mutated genes that explain issues (whole genome testing, not the commercial DNA tests for ancestory purposes).
Most people have no clue what we go through. Keep smiling. Keep the faith.
I have had a lot of difficulty posting, even though I am a member.
I am a patient of Dr. David Systrom at Brigham and Women’s Hospital in Boston. I had the unique invasive cardio pulmonary stress test and a dx of preload failure. Dr. Systrom uses an off label med to help preload patients exercise: mestinone. I couldn’t tolerate it and am trying to exercise using his magic words: recumbent bicycle. I also have 99% sfpn. Boston is one tough town to get IVIG or any “experimental treatment.” That’s how one doc referred to it here. I am having a very difficult time. More tomorrow; it took me three hours to be able to post and I’m exhausted. I had a horrible day; four days into a crash and I almost got electrocuted because my upstairs neighbor forgot to turn her bathroom sink off.Turned light on and sparks flew. No sleep. Talk about stress.
All preload patients do not have CFS but I think he will be seeing more.
I got a second opinion on test from my first cousin, once removed, who’s been head of cardio research at NIH for twenty five years. This test is only given at the Brigham and Perth, Australia and most cardios don’t “get” it. There are some good guys at NIH; my cousin always believed in CFS. Another cousin of ours had it and died young of lung cancer (she didn’t smoke.)
Gulf War Veterans are getting testing and see lots of great comments. Follow our research as scientists around the world are working on these diagnosis for SNF, CFS/ME, Fibromyalgia, etc. We have cutting edge technology using genomic biomarkers and other testing in Gulf War Illness Research which is federal funded for our group and includes other research so it’s providing answers…just not fast enough for some of us.
Indeed! Nany Klimas said Gulf War Illness research is breaking ground for ME/CFS research. We should be looking there for what’s around the corner for us – good idea.
Hmmmm makes me wonder. I am a veteran, not a Gulf War Veteran, but served from 1978-1981 in Germany living in Barracks that were WWII German Barracks, not a half football field from hidden nuclear missiles silos, and 35ks from then East Germany. I began using VA as my medical provider in 2014, when our BCBS insurance went from $350 monthly to $950 monthly, let’s not talk deductibles, pharmacy costs, doctor visits. Within in a few months they asked me to donate blood and be part of a study called the ” Million Vet Program”. They didn’t ask my husband. I didn’t follow through because 1) I didn’t have the energy or desire and 2) they never explained why. Just makes wonder the questionnaire was very indepth and very fascinating, all about ethnicity, travels, all the places I have lived. I wish I could somehow be seen by the physicians who see the GW Vets, instead of some of the clueless ones I have seen.
Cort, I am still having trouble posting. This forum is the only thing I can get into.
Dr. Oaklander has a Gulf War Study. She’s at MGH in Boston.
i am so pleased to finally have someone else saying about the sunbun, sensation as everybody i have spoken to dont understand
I know how exactly how you feel, Lesley Anne Pearce.
Quetiapine destroyed me. It was my nail in the coffin. I now have trouble walking and it made me housebound. My legs vibrate and small-fiber neuropathy sets it. In both ME/CFS and Fibromyalgia the neurological system is impacted and this drug has a finite use for psychosis. It left me weaker than ever and very loud Tinnitus 24/7. My doctor used it on me as he read a piece of research that it helped Fibro patients sleep. It knocked me out but, I did not sleep as I did not go through sleep cycles. It took over my brain, putting me in another world.
This drug has a finite use and I do not believe it should be used off-label.
Also, if you have begun Lewy Body Disease, and don’t know it or have been misdiagnosed with another dementia such as Alzheimer’s, this drug will push you into that dementia further and you will begin to have true LBD symptoms. When my sister realized what was going on with my mother she began decreasing the drug 1/4 pill every month to get her off it as slowly as possible. Every time for 2 weeks my mother could not walk and then began walking again. Then, once fully off the drug, she could no longer walk again. My walking has also been impacted.
DO NOT TAKE THIS DRUG FOR FIBROMYALGIA OR ME/CFS! It should only be used for psychosis and under a psychiatrist.
Also, my legs are on fire and my brain hurts almost 24/7 and is often on the verge of burning 2-3 x a week.