From stiff muscles to painful trigger points to problems with exercise, the muscles can be a problem in fibromyalgia. It turns out that muscles have an interesting way of relaxing when they’re in pain. Every time you contract a painful muscle, your nervous system should take a little break, give your muscles a little break, and reduce your pain.
A key neuroprotective process that should kick in when your muscles are in pain appears to be damaged in fibromyalgia
These researchers looked at a curious phenomenon called the ‘cutaneous spinal period’ (CSP) which signifies a period during which the signals from very small sensory nerves to the brain get inhibited. Since these sensory nerves (small nerve fibers) carry pain signals to the brain, too much sensory nerve activity is going to leave you in pain.
It turns out that every time you’re in pain and you contract a muscle, in what’s believed to be a protective reflex, that muscle contraction gets interrupted for a time, and that interruption can be measured electronically. With all the pain in fibromyalgia these researchers wanted to know how well this pain inhibition process was working in FM. To do that they shocked some muscles in the ‘periphery’ (the body) and the measured the electrical signals they produced.
Results
The cutaneous silent period occurs when the electrical signals in a muscle in pain take a pause
Prolonged delays in producing the ‘cutaneous silent period’ indicated that a key protective element is under-performing in FM (and is presumably leaving the muscles in a contracted state for longer than normal periods. ) This is yet another example of a balky pain inhibition process ramping up pain levels in FM. (Although, the researchers didn’t mention it, one imagines this issue should make pain-free exercise a bit more difficult :).
With a recent study suggesting that the rest period between muscle contractions is pretty much zilch in FM, and this study suggesting the rest period within muscle contractions are reduced, it’s no wonder people with FM/ME/CFS often experience muscle stiffness and pain.
The very strange phenomenon of sudden body-wide muscle contractions called Stiff Person Syndrome with its interesting associations with FM/ME/CFS springs to mind as well.
Small Fiber Neuropathy Implicated
Reduced CSP latency in other disorders (including restless leg syndrome) has been associated with none other than small fiber neuropathy – a hot topic in fibromygalgia right now. Small fiber neuropathy occurs when small nerve fibers that feed sensory and/or autonomic nervous system data to the brain are damaged by infection, toxins, autoimmune processes, etc. Recent studies suggest a high percentage of people with fibromyalgia may have small fiber neuropathy.
- Dig Deeper – Small Fiber Nerve Study Suggests New Era in Fibromyalgia (and Perhaps Chronic Fatigue Syndrome) Could Be At Hand
As with other studies, nerve conduction tests indicated the larger nerves were working fine.
Top – Down….Bottom – Up or Both?
The brain sends signals down into these small nerves to inhibit pain signals. A reduction in the strength of that pain inhibiting signal from the brain to the body – probably at the dorsal horn of the spinal cord – could reduce the cutaneous silent period. Or a small fiber neuropathy could tweak the sensory nerves in the body.
People with fibromyalgia appear to be getting hammered from both ends; the brain and the body
My bet is that pain inhibition processes in fibromyalgia are getting whacked both from the top – from the brain to the body -and from the bottom – from the body to the brain.
There’s plenty of evidence that the brains on fire, so to speak, in FM. Two recent studies highlighted a ‘hyperexcitable’ brainstem and highly activated brain neurons have been found in others. Inhibitory brain chemicals (serotonin) are reduced while excitatory brain chemicals (substance P, glutamate) are increased.
- Dig Deeper – Sensory Overload: Study Suggests Brains in Fibromyalgia Are Being Pummeled With Too Much Information
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Meanwhile below the brain, small nerve fiber and blood vessel studies suggest exaggerated sensory inputs from the body are present.
- Dig Deeper – Hands Up! A Key to the Fatigue, Sleep and Pain in Fibromyalgia Found?
- Dig Deeper – Small Fiber Nerve Study Suggests New Era in Fibromyalgia (and Perhaps Chronic Fatigue Syndrome) Could Be At Hand
Every pathway in the brain and the body that serves to magnify pain in FM appears to be going gangbusters, while the pathways that reduce pain are under-performing. Welcome to the quintessential pain syndrome in humans.
Given the hyper-excitability present it’s no wonder many of the drugs used in Fibromyalgia and ME/CFS turn down brain activity. Tramadol, interestingly enough, is able to increase the cutaneous silent period probably through it ability to enhance monaminergic processes involving dopamine, serotonin and norepinephrine.
Conclusion
The finding that pain inhibition at the muscle level is hampered in fibromyalgia adds to the number of dysregulated pain producing pathways found in fibromyalgia. The possibility that small fiber neuropathy may be responsible is intriguing given increasing evidence it may play a major role in FM.
It’s becoming clearer and clearer that the pain production problems in fibromyalgia are probably global; ie both the brain and the body are implicated…
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This is very interesting, makes quite a bit of sense. I would like more information on this.
Good review Cort.
Having FMS and EDS, getting both of those DX’s from Mayo, and having gone through the painful nerve study —I can say that there is a lot of pain and it is pretty much there most of the time. With EDS, since we have lax connective tissue and are very flexible, most get early arthritis, and many of us sublux things easily —we are constantly tensing our muscles to hold ourselves together and upright. Because of this tension that in itself causes pain and fatigue of the muscles, many of us have muscle spasms and some of us have tremors. (A good many of us also have small fiber neuropathy.)
As mentioned above, Tramadol is one of the meds that I was given along with Bentyl (which is a muscle relaxer). Both of these things have been very helpful to me. But, I have to cycle them —as they will become ineffective over time. Instead of increasing them, I stop them for a week or two and then start back on the lower dose that I take. I’d rather do that than have to continue increasing something with a possibility of addiction and it becoming ineffective. These two things also help with my POTS symptoms. Since Tramadol is a NMDA (glutamate receptor) modifier —I think this is a help with the Hyper response that I get.
Whether it affects my high NE levels —can’t say. (Since Tramadol is a NE reuptake inhibitor too, it should increase NE levels. With mine already increased with standing —I’m HyperPOTS, criteria is that levels should be over 600 with standing —this, you would think, would increase NE levels even more. Some of us are thinking the increase of NE is a compensatory thing and necessary to correct some other dysfunction that our bodies are doing. Some of us have tried increasing our NE levels —with Sudafed —and have found instead of it making us feel worse –we felt better. But, unfortunately, the effects wore off after a 3 day trial.) I found a study showing that it is important for NE and SE for the most effective relief from neuropathic pain.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2811866/
In summary, preclinical data suggests that persistent and neuropathic pain may be inhibited by enhancement of norepinephrine and serotonin transmission (both neurotransmitters > norepinephrine alone > serotonin alone), and that deficiencies in one or both of these neurotransmitter systems may contribute to hyperactive pain processing.
Tramadol, for me, is calming and helps with the tachycardia that goes along with HyperPOTS. It, however, works better in combination with the muscle relaxer Bentyl —at least for me. (Tramadol is also an acceptable drug for those that have MCAS.)
Makes sense that if there isn’t a relaxing of the muscles, that could cause increased sensitivity to the nerves. I can say that is true for me.
Issie
Interesting that high NE levels may be a compensatory response. I can see that. What do you think they’re compensating for?
This is interesting to me as well
“we are constantly tensing our muscles to hold ourselves together and upright. Because of this tension that in itself causes pain and fatigue of the muscles, many of us have muscle spasms and some of us have tremors. (A good many of us also have small fiber neuropathy.)”
because I do seem to fit parts of this paradigm; I’ve noticed that when I do take things that increase my energy and relax my muscles I tend to get really jittery and then have flu-like systems; it’s like my body wants to be stiff in order to ????? but I don’t have any overt joint laxity.
Might be worth remembering that peripheral/small fibre neuropathy is most commonly found in diabetes and related conditions like pre-diabetes and metabolic syndrome with fibromyalgia more common in diabetics and CDC associating fibro and ME/CFS with metabolic syndrome.
Got to be some connection there you would think?
Many of us with POTS and small fiber neuropathy are finding it connected to autoimmune dysfunction.
There does seem to be insulin resistance that doesn’t go all the way into diabetes or hypoglycemia. But, it is there. NE can release glucose and can play a role in our blood sugar response too.
So many that have small fiber neuropathy and POTS also have some sort of autoimmune DX (AS, Sojourns, RA, Lupus, etc.)
As for what NE is doing for us with POTS, there are many ideas floating around. Since NE helps with vein constriction – many with POTS have low blood pressures and it can increase that. (I personally have too high bp’s and many of us with HyperPOTS do. So, it’s interesting that NE is released with already high bp’s. So, it must be being used for some other reason than to increase blood pressure.) It is also found to help with pain. It’s found to improve mood for many and that along with possibly helping autonomic nervous system function (both central and sympathetic systems) may be helpful in this area.
In HyperPOTS – it is found that we have an unusually high release of it with standing. That increases our heart rate and probably helps with blood flow issues. The idea behind the experiment we tried with the Sudafed was to see if we increased it steadily through the day, would we maybe not need those surge releases with standing and it help our blood flow through the whole day. We did find it to be helpful. Some of us still had the surges however. But, as said above the help we got from it stopped working on day three.
There are studies being done now to determine what other roles NE may be playing with us. Possibly it is being more effective in some areas of the body and less effective in others. Lots of speculation at this point. But, hopefully more will be learned in regards to it.
We once thought that NO (Nitric Oxide) was a key player for us. But, I was just recently sent an article by one of the major POTS docs – saying that he no longer feels this is a factor. So, lots of the things we once focused on is being dismissed.
I’m just happy that we have doctors looking into it more for us and new things are being learned.
One thing I find interesting is those of us with HyperPOTS, MCAS and EDS are the ones that seem to have the high NE levels and are finding success with treatments addressing the immune system and allergies (mast cell overactivation).
Issie
Cort, you are sure connecting the dots. My only concern with all of these studies, particularly since myofascial pain syndrome is present in both FM and ME/CFS, is that patients are being screened for this comorbidity. Bravo to you!
I don’t think they are Celeste. I think that’s a big and I’ll bet crucial hole in the system.
Keep it coming Cort. . What a wealth of information you have send us all! THANKS
It makes sense my muscles in my upper back shoulders, my neck and my throat don’t seem to ever relax, the muscles burn and shake . I take a muscle relaxer and a pain pill 4 times a day and all it does is lessen the pain enough to get through what I got to do it doesn’t ever take it all away, when I go to bed at night my body will throb as I’m trying to relax enough to go to sleep.
Do you have EDS (Ehlers Danlos)?
I got my FMS DX before my EDS DX and often wonder if EDS was FMS all along or if I indeed have both.
Issie
I took my once a week Pilates class today. All of my nerves are on fire, my feet are sending so many electrical shocks, they go up and down my ankles and toes. So uncomfortable, and that’s with my Oxycodone 15!
This morning there was a fire drill in the community building where I take classes, and the sound has rattled my brain so much, was so painful, headaches all through the day! Just dreadfully loud, and no ear plugs available.
I’m a religious person and find it hard to understand why I’m cursed with all the symptoms of fibromyalgia and sjogren’s syndrome. And the fact that we don’t know the cause or the cure. Certain that it’s in my brain’s wiring, and that I’ve had it all my life long. I’m 73 now. Neither sibling has either illness, Dad had fm., and Mom had ss, and I am doubly blessed.
Great Article Cort! 🙂
Hi Issie,
I have a rheumatologist appt this Tues to receive a lip biospy (for Sjogrens) & to get tested for EDS. I have been diagnosed w/ CFS & Fibro. But, I wonder if my Drs are missing something…?
I tested positive on an auto immune panel but tested negative (2 yrs ago) for Sjogrens antibodies. But through everyone’s posts I think it is best to get a lip biopsy… My eyes & mouth are ALWAYS so dry :-(. My eyes burn a lot of the time.
You have made me aware of EDS & after researching it, I can’t believe how many of the symptoms I have. I am very, very flexible through out my whole body… except I am very, very tight all down my back, neck & shoulders,
I completely agree with you, that food is medicine. I actually struggle often with going the “western” medicine route or continuing down my alternative/ eastern medicine path. I have a very strict diet & truly believe our bodies can heal themselves when we give them what they need (& unburden them w/ the many stressors).
I am curious how do they test for EDS? & what does the nerve path biospy consist of? I get that test in November.
Thanks you both for all of the great info! Cort, thanks again for your great articles & Issie, I really appreciate your posts. I always read them to my husband 🙂 It’s refreshing seeing someone else shooting for such a natural approach.
It really helps me to stay positive by reminding myself how many of us are out there hard at work trying to find a CURE… not just by treating our symptoms! So please keep up the great work!
Lastly, I have been using the silver pulser from sota instruments (made from Dr. Becks protocol) over the last month & this is the most improvement I have had in my health in 4 yrs. I have only used the pulser & not added the collidial silver or ozonated water yet. I am adding the collidial silver next week (the pulsing machine can make the silver w/ distilled water). I have very high titters to CMV, EBV & HHV-6 & my next step in my protocol is anti virals & IVIG. I really believe in my heart I can do things more naturally. Thats what lead me the pulser. Just wanted to mention it & will keep you guys posted my progress.
Thanks again!
– gina
Gina,
Thank you for your comments. I’m glad that what I’ve posted about seems to be making a difference for others. Hope you get more answers.
There are several types of EDS. Most of them can be checked with genetic testing. But, the one that most of us with POTS have is HEDS or EDSIII. That one can’t be tested with genetics. There are flexibility test that they do and they can be found on the internet to check to see how many of them you can do.
As for IVIG, not sure if you know the alternative thing for that. I’m using the Immune Formula of Colostrum from Symbiotics.
Another thing that can be used for virus and pathogens along with or other than Silver is Grapefruit Seed Ext. I’ve read conflicting info about it. But, when I’ve used it, I could tell there was a herxing reaction that was taking place and that in the long run is a good thing. Means it was working.
Let us know what you find out.
Issie
I have was diagnosed with fibro in 2004, in may of this year I had my tubes tied so to say. hey now use a plastic clip on both tubes. Before then my period was moderate and on time and backed down to 3 days tops. Of course there was major hormmone drops and it messes with my fibro. But now, omg ! my lower abdomen hurts all the time, when i sneeze or any type of sharp movement it feels as though the clips are ripping their way back out. It hurts sooo bad i cant move for weeks and during my period it is unmentionable. anyone having this problem? my gyn gave me 3 std tests(cant have sex anyways it hurts) and 6 unltrasounds. no insurance by the way . No answers but your all okay!!! WT*? any suggestions? thank you,Chelle
Also forgot to mention , I was 24 when the fibro started . I am now 33 . hope you all have a good am , mine is very bad today ;( ,,,, Also any feed back on the sterilization would help sooo much. thanks , chelle
This sounds promising. If it can lead to a decent treatment that *works*. Though I wonder at all the different studies and research results that I see regarding fibro. Some of it resonates with me, some of it _seems_ to make sense, but sometimes my latent scientist kicks in and says “that’s not even enough samples for statistical significance!” And leaves me wondering how much is grasping at straws (like me, most of the time) looking at entirely the wrong things, is finding X the cause or a result? How do you tell? It’s not possible to “infect” someone with FMS (oh, as evil as it might make me sound, I’d nominate the entire UK Cabinet as guinea pigs to try it out) to verify that.
I do not remember a time in my life when I wasn’t ill and in pain for a significant chunk of the time (my mother stated recently that I was “always sick but the doctors couldn’t ever find anything”). I barely ever managed a full 5 day week at school and the only reason I managed to not get fired from my job was that I managed to get through my probabation period, just, and promptly went onto a 4 day week (M,Tu,Th,F) until I got to the point that I couldn’t even manage that (we tried half days, we tried 3 half days, we tried all sorts. Eventually it was more than I could cope with. I’m 48 next month. One day I’d like to not be in pain. Even taking 50mg tramadol every 2 hours while I am awake doesn’t make the pain go away, just keeps me able to potter about and manage about as much as a 90 year old woman (my children’s great-grandmother who is 90 is more active than I am!).
I was diagnosed with fibro in 2008. It ebs and flows, seems to be the worst in Spring and Fall. I always have symptoms of fibro everyday of my life, but the degree of it varies. My rheumatologist has tried all different medicinal approaches with me (Lyrica, muscle relaxers, Tramadol, Effexor, Topomax and various supplements that increase overall health and deal a lot with improving sleep).
I had been wrongly diagnosed with different disorders for about 15 years before the fibro diagnosis was made. I was diagnosed as having chronic migraines & fibro at the same time in a very rapid fashion in 2008. It was like the fibro, that I probably always had but didn’t know it, had taken on an uncontrollable life of its own when inside of two weeks I experienced constant migraines that nothing OTC could touch. Prior to that I would get maybe 1-3 migraines a year. Also, within a few week period of time I was waking up every morning very stiff and feeling like I’d just gone to sleep. I felt hungover without the fun of partying the night before!
Then, after I’d gotten my stiff and sore body out the door with my two young children, I’d stiffen up SO much that I’d barely be able to walk. The skin all over my body hurt if I touched it. Not like a bruise, but even more topical than that. Almost like I was mildly burned all over my body. Mid-day while driving kids home my face would stiffen up so much I couldn’t form words to speak.
Then the kids talking in the car hurt my ear canals and my brain. It was like their normal volume was amplified to their fighting and bickering volume of yelling! But even worse than that, it seemed. And the beautiful sun of our summer days was hurting my eyes with my sunglasses on. So with all of these strange sensations, pain, stiffness the diagnosis of fibromyalgia was made.
I was 41 at that time. Through it all I have tried to continue to live the life I’ve always lived–one of being positive, super active, athletic (played competitive tennis for 36 years & still do; at times maintaining fitness competitive level weight training; running 5k’s and half marathons), exciting (been skydiving more than half my life; scuba dive; snow skiing & anything else that will get the adrenaline flowing!) happy and healthy.
It is nearly impossible to do all the things I want and be very productive day in and day out. I can go at my desired pace for 2-3 days, but then crash. Pain and stiffness overtakes me. Migraines plaque me. The disorder doesn’t seem to make sense or take on predictable patterns other than reaching peaks in Spring & Fall as I’ve mentioned.
Even when my diet is tight and clean for months (eating the best forms of protein, carbs, fats and keeping sugars, flour-based and non-nutritious foods to minuscule minimums) I will still experience fibro symptoms. But at a lesser degree. So diet (thankfully with all my weight training and sports involvement I learned so much about the role of food in health, fitness and weight loss) is one big area we can be proactive and really effect change in pain/stiffness levels along with helping to reduce other fibro-related conditions/symptoms.
Concerning prescription products, the most effective drug by far in prevention and/or treatment of this frustrating condition for me has been Tramadol. With Tramadol I feel totally normal. It’s unfortunate that it wears off! But the half life is quite long and provides for excellent pain control for pretty good periods of time. I also don’t feel any side effects from it. I don’t like that I really can only function normally on a pain killer. I’m super thankful I have it. I’ve taken it since 2008 when I was diagnosed. At times we would try many other drugs to prevent the pain and improve sleep quality.
Nothing, including Lyrica, has done half as good of a job as Tramadol with the pain. Increasing doses only made side effects unmanageable with other products. Currently, I take Tramadol as needed and a mild to moderate dose of Effexor which I think helps mainly to manage the emotional lows of being in chronic pain. I believe in taking malic acid and magnesium.
Based on research, I believe magnesium is probably a deficiency most to all of fibro patients have. I do have to take the magnesium glycinate form because magnesium citrate caused severe diarrhea. This is such a key supplement and I can tolerate the recommended doses for fibro in the glycinate form.
In my continued battle with fibro, I am always looking for any other treatments to lessen symptoms. I have concerns, as well, about taking a pain killer indefinitely. Certain possible other treatments have peaked my interest. I’d like to put these out there to everyone and see what I can learn about them. Here they are–
–Is the use of a biomat effective in treatment of fibro?
–Can anyone shed more light on how taking Sudafed reduces symptoms and why do the benefits of the treatment drop off after 3 days?
–Why does warm water therapy (exercise in warm therapy pools) help with less pain after exercise? How does keeping muscles & joints warm during exercise help with less painful recovery after?
–Are there any supplements or preparation routines I can take/do before weight training and anything in that vain to do after to reduce the pain and speed recovery of these muscles?
–Is there any long-term negative effects on my health from taking Tramadol as first line for fibro?
–Does anyone know how I can get involved as a subject in research for treatment of fibro?
–Does fibro ever go away/stop completely?
That last one is a question of desperation! I know everyone with fibro has had some really low lows. In those moments, we think of things like this. Being in chronic pain, whether physical or emotional, for years on end is so taxing. It can wear one down, lower our self-confident and self-image. We feel bad that we aren’t like everyone else, able to jump up and face the day effortlessly. We feel helpless a lot of the time, disappointed in ourselves that we are burdened with this and that we’ve burdened our family and friends with our fibro condition.
But reality is that everyone else isn’t necessarily able to greet the day and get through it easily. Many folks out there have things they feel and have that make their lives hard to manage as well. When we are in pain all the time it’s so easy to become hyper self-focused, feeling like we are the only ‘inadequate’ people out there.
It’s not that we are selfish, self absorbed people who walk through life with blinders on. But the constant reminder of pain 24/7 makes the most unselfish, big hearted, giving person become downtrodden, helpless feeling and even apathetic. Believe that things will improve. Don’t strive to be loose and pain-free everyday. No one is. We are all tough on our bodies, get out of balance and pay the price for that.
If you get off your treatment schedule and healthy lifestyle routine, don’t chastise yourself and feel bad for that. Just get right back into doing the right things for your body and mind. Be open-minded to other things that may help your condition. Being forward-thinking and hopeful may be hard to do, but the more you do it, the happier and positive you feel.
Always working toward staying ahead of your disorder improves your self esteem. It empowers you as you prove that you are your strongest advocate of your health and well-being. Don’t over-commit yourself to people and activities. You need to recognize your limits and what/where that point is when you are giving to others without sacrificing your good health. Because you’ll pay the price in pain when you overextend yourself. Don’t complain about your symptoms, but know when you need to stop going and rest in order to get your body back to well-functioning level.
Support your position and your situation when up against the non-believers in the condition, never allowing anyone to underestimate the effects of or existence of fibro concerning your health. Or don’t address those people at all if they are not worth it. Many people are ignorant to fibromyalgia. I mean really, does someone like me, a lover of life, people, fun, seasons, outdoors, running fast, falling fast, flying, diving deeper, playing longer, laughing forever, working harder, loving better prefer to make untrue excuses that I can’t do it, can’t be there or can’t get it done when I’m in all-over-body pain? Really???
Whether you are a high energy person or someone who prefers a slower pace, if you are experiencing the vast array of the symptoms we all have, there’s a diagnoseable reason for it. It’s not a label used to ‘get out of’ doing things. Fibro doesn’t discriminate. All types of people unfortunately have to manage it. Stay positive even when it feels hard to smile. Studies show we feel better and lighter when we smile. Also, people who interact with us when we smile experience good feelings and are happier when they see us smile. All of this perpetuates positive feelings and a more positive outlook. Things suddenly don’t feel so bad and neither do we!
Wonderful post, Shannon – thanks very much 🙂