Not Only Central Sensitization
Fibromyalgia (FM) has long been thought to be a central sensitization disorder – a disorder primarily characterized by a hypersensitivity to pain and other stimuli. Fibromyalgia doesn’t just increase one’s sensitivity to pain, though. It’s also associated with a host of other symptoms that the central sensitization hypothesis may not explain very well, including unrefreshing sleep, cognitive problems, gut issues and anxiety.
One group of symptoms that has gotten little attention in fibromyalgia are those that arise or get worse during standing such as: dizziness, lightheadedness and fainting, as well as fatigue, pain and cognitive problems.
Does standing make your symptoms worse? Do you often feel the need to lie down? You may have orthostatic intolerance.
These symptoms can manifest with something as dramatic as fainting or as innocuous as simply feeling the need to lie down, having more trouble thinking or talking when upright, or having more trouble with upright exercises such as walking.
Other signs that one is having problems being upright can include feeling the need to move when standing still or putting one’s legs up on something when sitting. I’ve never been diagnosed with a specific kind of orthostatic intolerance, but I’ve noticed that my best posture for speaking on the phone is lying down on my back with my legs up the wall.
Every time we stand, we have to counteract gravitational forces which want to drain our blood to our feet. Our bodies counter those forces in several ways. The blood vessels in the lower part of our body constrict and the muscles in our legs tighten up to help keep blood from pooling there. The autonomic nervous system plays a large role in keeping us functioning when upright.
Symptoms that get worse when standing are associated with a condition called orthostatic intolerance (OI). In the constellation of diseases that one associates with OI, such as chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS), and Ehlers Danlos Syndrome, FM is kind of the odd man (or woman) out with regard to OI.
It seems strange that such an important part of these other diseases would not show up in FM. That oddity prompted a search through the medical literature to determine if orthostatic intolerance is present in fibromyalgia, and if it is, what that means regarding the disease.
The Orthostatic Intolerance Story in Fibromyalgia
The OI story in fibromyalgia starts 20 years ago with a researcher, Peter Rowe MD, who would become well known for work on the role orthostatic intolerance plays in chronic fatigue syndrome (ME/CFS). What isn’t well known is that one of Rowe’s earliest OI studies involved fibromyalgia.
That 1997 study – still the only FM study Rowe ever worked on – found abnormally large drops in blood pressure when FM patients were given a tilt table test. (Tilt table tests involve strapping the participant to a “table” and then tilting them up and measuring how their cardiovascular systems respond). That drop in blood pressure presumably resulted in reduced blood flow across the body, but particularly in the brain – sometimes causing feelings of dizziness, lightheadedness or even fainting.
Drops in blood pressure during standing can lead to feeling lightheaded or dizzy, or even fainting.
Another study that same year by Dr. Martinez-Lavin – who would go on to produce a hypothesis of sympathetic nervous system dysregulation in FM – found evidence that standing provoked a “sympathetic nervous system derangement” in FM. Martinez-Lavin’s study would set the stage for a series of studies which validated a state of sympathetic nervous system hyperactivity in FM.
The next study to use the tilt table to test autonomic nervous system functioning in FM came in Martinez-Lavin’s small 1999 study, which proposed that the lupus-like features in fibromyalgia might very well result from autonomic nervous system problems.
Then in 2000, Satish Raj (another doctor and researcher who would later achieve prominence in the dysautonomia/POTS field) – in his sole FM publication – found that 65% of FM patients tested positive during a tilt table test and exhibited signs of dysautonomia (malfunction of the autonomic nervous system).
Meanwhile, numerous studies were finding evidence of low heart rate variability (HRV) in FM – indicating that a sympathetic nervous system hyperactivity accompanied by a parasympathetic nervous system withdrawal was present in FM.
In 2002, one report suggesting that low blood volume was present in fibromyalgia provided another potential link to orthostatic problems in FM. When the body has less blood available, standing can result in even larger drops in blood flow to the brain. Low blood volume is a common finding in chronic fatigue syndrome (ME/CFS) and POTS and contributes to the orthostatic intolerance in those diseases.
In 2005, Staud came right out and said what the studies had been pointing to: doctors should use tilt table testing to evaluate fibromyalgia patients. Staud found a pattern of abnormally rapid heart rate; i.e postural orthostatic tachycardia syndrome (POTS) in his FM patients. He postulated that the fatigue, dizziness and palpitations often seen in FM are likely the result of autonomic nervous system problems.
That same year, an Italian group did the most comprehensive tilt table assessment of the autonomic nervous system yet in fibromyalgia. The small study (n=32) found that besides the expected low HRV readings and higher heart rates, higher muscle sympathetic nervous system activation was present during rest. That finding suggested that the sympathetic nervous system hyperactivity found was making “rest” not so restful.
The group found high rates of fainting (44%) on the tilt table test. The reduced muscle, sympathetic nerve and vagal activity during the tilt test suggested that both parts of the autonomic nervous system – the sympathetic and parasympathetic nervous systems – were pooping out during the stress of tilting.
The autonomic nervous system problems in FM were linked to increased pain sensitivity. A 2010 Spanish study then linked problems with blood pressure regulation during a stress test with increased pain. Besides the low HRV readings, problems with blood pressure regulation and baroreflex sensitivity (which is involved in blood pressure regulation) were associated with greater pain sensitivity. Plus, stroke volume – which can reflect problems with preload – was reduced as well.
While a tilt table was not used, the study suggested that all it took to impact cardiovascular functioning in FM was a mental exercise test. That study hearkened back 10 years to findings showing that people with “idiopathic orthostatic intolerance“; i.e. people who experience lightheadedness, fatigue, heart pounding, etc. upon standing tend to have lower cardiac vagal baroreflex sensitivity, lower blood volume and increased heart rates upon standing. By 2010, each of these (baroreflex sensitivity, reduced blood volume and increased heart rates) had shown up in FM studies.
After being “on” at rest, the sympathetic nervous system pooped out during exertion.
The very next year, another Spanish study validated those same findings. A cold pressor stress test (applying a cold stress, usually by plunging the hand into ice water) indicated that a whole raft of cardiovascular factors (resting stroke volume, myocardial contractility, R-R interval, heart rate variability, and sensitivity of the cardiac baroreflex) were reduced in FM, even at rest.
Then, when put under stress, the FM patients’ autonomic nervous systems failed to respond adequately. It was as if after being “on” all the time, the ANS, exhausted, collapsed during stress. Once again, problems with blood pressure regulation (baroreflex sensitivity) were associated with increased pain sensitivity.
Next, a Brazilian group demonstrated that the autonomic problems in FM extended to the ability to exercise. They showed that chronotropic incompetence – the inability to increase the heart rate normally during exercise – was common in FM. They, too, noted during stress the strange combination of sympathetic hyperactivity while resting, and a kind of sympathetic nervous system collapse (a “hyporeactivity to stress”). Intriguingly, they suggested that problems with B-1 adrenergic receptors – the same receptors to which autoantibodies have been found in POTS – might be responsible.
They proposed that autonomic nervous system problems could be contributing to a long list of symptoms (sleep disorders, chronic pain, allodynia, anxiety, pseudo-Raynaud’s phenomenon, sicca syndrome and intestinal irritability) in FM. Interestingly, they suggested that exercise – a helpful therapy in both FM and POTS – could help ameliorate some of the autonomic nervous system problems. Indeed, one study found that resistance exercise resulted in improvements in vagal tone in FM.
In 2014, Mayo Clinic researchers reported that the ‘Compass’ autonomic nervous system self-report test indicated that FM “patients frequently report lightheadedness that is triggered by upright posture, warm temperatures or stressful events which may indicate the presence of orthostatic intolerance.” This should, they suggested, trigger a clinical evaluation of an orthostatic disorder using a tilt table test. Plus, they proposed that the problems with sweating, the inability to tolerate heat, the dry eyes, the light sensitivity, the bladder and bowel problems and sleep difficulties sometimes found in FM could all derive from autonomic nervous system issues.
Has Your Doctor Recommended a Tilt Table Test? Take the Fibromyalgia Tilt Table Test Poll
In 2015, problems with blood pressure regulation again came to the fore. A New York study found that diastolic blood pressure (DBP) was significantly inversely correlated with baseline fibromyalgia impact (FIQ) scores, even during quiet sitting. Since blood pressure plays a crucial role in forcing blood flow into our tissues, the association between DPB and FIQ scores suggested that cardiovascular issues were having a direct impact on FM.
In a statement that could have been taken right out of several POTS studies, the authors proposed that problems with the muscle pump and “fluid pooling” in the lower extremities “may be playing a critical role in the development of FM symptoms.” This pooling, they proposed, results in “reduced venous return” – precisely what Dr. David Systrom is finding in his large group of exercise intolerant patients.
The authors asserted that blood pooling in the lower extremities could explain why fibromyalgia has so many symptoms in common with hypotension (fainting, dizziness, headaches, fatigue, pain, depression, anxiety).
Finally, in 2017 a Spanish group found that problems with the cardiac baroreflex (which regulates blood pressure) during standing were strongly associated with reduced quality of life and an increased fibromyalgia impact score. They proposed that the problems FM patients were encountering being upright were interfering with their “ability to deal with his/her daily life activities”.
The authors also stressed the need – long recognized in ME/CFS and POTS – to employ some sort of cardiovascular stressor (standing, tilt table, exercise, etc.) to capture the full extent of the dysfunction in fibromyalgia.
Conclusion
Orthostatic intolerance has never been considered a major symptom in fibromyalgia, but findings suggesting that it is present in FM date back 20 years. With few studies examining the incidence of POTS, orthostatic hypotension or low blood volume in FM, there is still much to learn.
Is FM a central sensitization disorder, an autonomic nervous system disorder, an autoimmune disorder, or all three?
It’s possible, though, that fibromyalgia has less in common with pain disorders like arthritis than it does with diseases like ME/CFS and POTS, where cardiovascular issues produce problems with exercise, standing, fatigue, energy production, pain, cognition and sleep.
The evidence that autonomic dysregulation plays some role in FM appears strong. Numerous heart rate variability studies suggest that sympathetic nervous system hyperactivity – a key feature of hyperadrenergic POTS – is present in FM.
Other studies have documented that standing can increase symptoms, induce problems with blood pressure regulation, and abnormally increase heart rates. Finally, some studies suggest that low blood volume is present and that blood pooling may be occurring in FM patients’ lower bodies.
Recent findings, indicating that a small nerve neuropathy which results in the damage or disappearance of autonomic nerves is present in a substantial subset of FM patients, further implicates the ANS in FM – and opens up the issue of autoimmunity.
- Coming up next – Vital Motion – An FM doctor and biomedical engineer thinks he may be able to help with the cardiovascular problems in FM. Plus, “Could FM be an Autoimmune disease?”
Orthostatic Intolerance Resources
Check out the many resources on orthostatic intolerance in Health Rising’s Treatment Resource Section including:
- A Home Test for Orthostatic Intolerance / A Home Test for POTS / A Home Test for Hyperventilation.
- Traveling chair – Having trouble standing in lines? check out a lightweight travelling chair that can get you off your feet when you need to.
- Enhancing Blood Volume for Chronic Fatigue Syndrome (ME/CFS), POTS and Orthostatic Intolerance.
- Dr. Peter Rowe on Managing and Treating Orthostatic Intolerance
- Should Everyone with Chronic Fatigue Syndrome or Fibromyalgia Be Tested for Orthostatic Intolerance?
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Thank you so much Cort for continuing to bring us such great information.
I’ve had symptoms of POTS for years, but have never been able to get a tilt test done. It’s not consistent for me, sometimes I can stand up with no problem, other times I take a few steps and have to sit down before I fall down.
We all know how frustrating it can be to get any verification of what’s “wrong” with us. It seems to be an endless cycle, rinse and repeat.
I have had problems with dizziness & fainting for as long as I can remember. This totally makes sense! How do I find a dr who’ll perform the tilt table test?
The Nasa lean test can be done at home with the assistance of someone, but probably better done in a regular doctor’s office in case there are issues. In my tilt table test I went into cardiac arrest, so having a doctor in the room is highly advisable, though this is a very uncommon complication. Correcting cardiac arrest is simple with this issue, raise the legs to restore blood to the chest and brain. However this is not fully guaranteed to work, so again a doctor is highly advisable.
A tilt table test is superior to a Nasa lean test, but costs much more and is usually done in specialist facilities. Cardiologists are often the ones to do it. They are definitely the best to deal with any complications.
Dysautonomia International has a list dysautonomia doctors on its website here – http://www.dysautonomiainternational.org/page.php?ID=14 or check out its map here – http://www.dysautonomiainternational.org/map.php?SS=3
Cardiologist, Neurologist. Sometimes your primary care Dr.can order.
I have ME/CFS and fibro. My doctors have not recommended a tilt table test but instead have recommended a high salt diet which seems to do the trick
I have these symptoms and when I feel dizzy or faint I do as you do Cort. I raise my legs up the back of the bed or a wall and lie still for about 15 minutes. Also I drink teaspoon of salt in water OR recently found V-8 juice sipped throughout the morning gives me energy, which also raises my B.P. which normally runs 80/50 range. My legs are swollen from knees to ankles so raising the legs helps with this also.
I’ve had plenty of practice with CFS/FM for 30 years. These simple remedies have helped the most.
Diane, I’m so glad you mentioned “raising your legs.” I’m not alone. I do “Viparita Karani” three times a day for 15 minute intervals. Have you heard of this? I think it may be the same thing you are describing. Basically, I lie on my back in bed and get my gluteus maximus as close to the head board and rotate my legs up the board and bedroom wall and try to achieve a perpendicular 90• angle.
Oh my gosh, the lymph drainage and the muscle pain relief is amazing. I’m still in pain but not nearly as bad. The good thing is that you don’t have to attempt a 90 degree angle.
Sometimes, I modify my movement and stretching along the wall and bend my knees and rotate a pillow underneath me. This relaxation pose is one of the few things I can do to alleviate the constant bilateral posterior lower leg pain I have experienced 24/7 for the last 4 years. My worst pain seems to be in the popliteal fossa region and the medial side region of the gastrocnemius’ and semimembranosus’ muscles. I also experience a continued dull bilateral ache in both my abductor hallis muscles of my feet. Finally, the dull ache is persistent in my piriformis/gluteus minor/gluteus major areas.
Cort posted a few articles earlier this week that may help explain my pain and provide a differential diagnosis other than FMS. I just want you to know, and I want Cort to know, that what you and others share, both in disseminating data and through personal stories, is helping me! Thank you! @Spartan36 on Twitter.
Really interesting Chris – thanks for posting this movement. For me I don’t have many problems with lower body pain – my pain is mostly in the upper body but propping up my legs against a wall (or tree in my case) is relaxing and helps me think and talk better.
Glad to hear the sharing is helping. Please everyone feel welcome to share your insights, your stories and your issues. You never know who or what your sharing will touch.
Chris, your symptoms are almost identical to mine,the worst areas anyway as far as the fibromyalgia goes. I have myriad other probs as well from the CFS,fibro,Oi. Also have a lot in common with Phil. I am seeing a new GP who informed me that there is no such thing as fibro he does believe in CFS though and thinks fibro is part of that. At least he’s a believer and mentioned LDN which I was already taking but doesn’t help with pain. I live very far from Sydney so have to do the best I can with local docs too exhausting and expensive to go to the city and for what, there is no cure and very little knowledge I’m too tired of it all. Keep my spirits up with reading this blog and appreciate you all especially our warrior Cort best wishes to all.
Thanks Diane for sharing that. I just included some more resources on treatments for OI at the bottom of the blog. Dr. Rowe has a nice overview on the subject.
Cort, I think Dr. Rowe’s paper is incredibly helpful and interesting thanks for reminding us of it.
I agree! Thanks 🙂
Diane wrote: “my B.P. which normally runs 80/50 range. My legs are swollen from knees to ankles”
One wonders how even a physician can ignore such obvious symptoms of serious illness. A car crash victim with BP of 80/50 would set off alarms. But for us, it’s just another day on the couch.
Do doctors really believe that thinking the wrong thoughts can cause low blood pressure and edema? Or is it just a convenient way to dismiss us as useless eaters who don’t deserve access to resources?
Diane, I hope you can soon find a physician who will seriously investigate these symptoms. V-8 juice is not adequate treatment. If that is the best modern medicine can offer, we might as well go back to barber-surgeons.
This fits with my own experience, even as I have improved considerably with my FM, I remain limited with my abilities to exercise “upright” and yet I can perform quite respectably now on rowing machine, bicycle, swimming, etc. Standing for me, always involved an intolerable buildup of pain in all the leg and lower back muscles as well as becoming lightheaded etc. Did others find this? My tolerance has got a lot higher as I have got better, but my abilities when “upright” continue to lag everything else.
I continue to believe in a hypothesis that what is going on, is constriction of blood flows, lymph fluid flows, and interstitial fluid dynamics, which is purely because of fascia being stiff and tight and stuck in clumps and bands. Its a simple mechanical, bio-muscular issue. Certainly there are likely to be other dysfunctions in the nervous and autonomous systems, but these are plausibly the outcome of a cascade of effects from severe bio-muscular dysfunctions.
Of course when a central nervous system that has been sending commands to muscles all over the body to “relax” in response to very real pain, and the muscles refuse to respond, the CNS might end up in a state of dysfunction itself. And I am also skeptical about the notion that the pain in FM is “because of a heightened CNS” – I rather believe that we have long since blocked out the pain that is emanating from all over the body, and only ever feel the worst one or two locations at any one time. Then when any location of adhesions and high interstitial toxicity has pressure applied, we leap with pain. This is because the spot IS painful, like a raw wound – not because our CNS is “fabricating the pain”. We just aren’t feeling most of the pain from all the dozens of spots at once, because our pain sensory systems “prioritize”. We are always feeling acute pain from somewhere, like one side of the neck, knee tendons, etc but there are dozens of other spots “almost as bad” that we “aren’t feeling”.
I think the orthostatic intolerance is plausibly explained by “blood just not getting to where it needs to” at the micro-vessel level. And the whole blood pressure and heart-rate control system has gone into some “default” mode in response.
Also we know appallingly little yet about interstitial fluid dynamics and their implications. Chinese traditional hypotheses have been routinely sneered at by mainstream western medical experts, and yet Chinese thinking about “energy flows” could be explained completely by ongoing and forthcoming discoveries about interstitial fluid dynamics.
I agree Phil. While I do think central sensitization is present I also think our periphery give us ample opportunities for pain. The OMF’s Harvard Research Center is going to give us some interesting data I think on what’s going on with the muscle cells.
I’ve been a long time believer that something is going on with the microcirculation as well.
Interesting idea about Chinese medicine. The NIH’s SPARC Initiative – https://www.healthrising.org/forums/threads/making-drugs-obsolete-the-electroceutical-revolution-a-fibromyalgia-and-me-cfs-perspective.5169/ – is exploring those energy pathways in the body…:)
Thank you Cort for posting this article as it fits me as well. I do agree with you and Phil and can’t wait to see Havard data and findings on this!Looking forward in retiring my walking stick and portable chair in the future..
🙂
Where does one start and another end…..it all seems to overlap. My first DX in my journey was FMS. I strongly questioned Mayo docs about that DX because I was of the opinion that it wasn’t the “core” of the problem – just one of the many symptoms. Whether or not we ever really get to the “core” – who knows. Sometimes treating symptoms is best we can do. At least science is explaining some if the Why’s of the symptoms.
Issie
“Fibromyalgia” might as well mean “a pattern of certain spots on the body that are sensitive to touch”. One this diagnosis has been made, the medical system can shove the patient into a “too hard” basket and forget about them.
There are actually several reasons that all those spots can be sensitive. Ehlers-Danlos syndrome, for example. Some thyroid conditions have the same effect. Diagnosing “FM” is a trap for failure to diagnose conditions that should be identifiable in their own right. For example, everyone who has the “FM” tender points should be tested very simply for limb range of movement. If they have high ROM, they almost certainly have EDS. “FM” in its “mystery” form involves loss of ROM. Everyone should also have a full panel thyroid function test.
Even then, removing these people and being left with the “mystery” cases, I think that the lack of curiosity about the cause of these tender spots is like diagnosing “a headache” and then not bothering to investigate if there is an infection, or a cancer, or some other highly evident cause of the headache. I believe that the FM tender spots all happen to be where there is a higher concentration of strands of muscles needing to slide across each other. Adhesion of these multiple strands and elevated local toxicity (partly a cause, partly a result of the adhesions) explains everything from there. The adhesiveness and toxicity is a problem everywhere, but it is less troublesome where adjacent muscle strands relationship is less complex.
“It’s possible, though, that fibromyalgia has less in common with pain disorders like arthritis than it does with diseases like ME/CFS and POTS, where cardiovascular issues produce problems with exercise, standing, fatigue, energy production, pain, cognition and sleep.”
Wondering about what cardiovascular issues – I have a PFO with ASA and bilateral blood shunting. There is a CFS doctor online somewhere who thinks it does have something to do with CFS at least. I think Myhill is the name.
“Since blood pressure plays a crucial role in forcing blood flow into our tissues, the association between DPB and FIQ scores suggested that cardiovascular issues were having a direct impact on FM.”
OR… a central nervous system defect is controlling both the DBP and the FIQ.
Thanks Dr. Phair
Absolutely…
I second that,too ?
Thanks, Dr. and Cort?
If I lay down, not even sleeping for a half hour if I’m feeling bad I find can rejuvenate me a bit. Never could figure out why and maybe this is why. Sitting doesn’t do it.
The fact that sitting doesn’t do it, which is still an upright posture, but lying down does sure sounds like a big clue to me! ?
I have fibromyalgia and pots. Both from four MRI w contrast. It is a heavy metal named Gadolinum and it is causing an epidemic of autoimmune disease.
Hell, every one, how are you?, I’m a new here.
My fibromyalgia pain and weakness is primarily in my lower body. I have a difficult time moving very fast and have to use a cane to help. I am only 41 and feel like I walk slower than my grandmother. My heart rate gets very high when I exercise even slowly on exercise bike. I have pain mostly in knee elbow and hip primarily on left sore except hip.