Fibromyalgia Autonomic Nervous System Problems Linked to Pain in Fibromyalgia

Discussion in 'FIbromyalgia and Pain Research' started by Cort, Jun 3, 2015.

  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Press on most people's fingernails and it will take quite some pressure to produce pain. Press in the fingernails of people with FM, however, and they will often feel it immediately; the "pressure pain threshold" in fibromyalgia is considerably less.

    Heart rate variability is another matter entirely. It refers to variability in the electrical signals in the heart. With HRV more is less; more heart rate variability the better. Reduced heart variability has been associated with earlier death but is one of the most consistent findings in the FM and chronic fatigue syndrome literature. In both diseases reduced HRV variability suggests the sympathetic nervous system is on high alert while the parasympathetic nervous system is


    The Study

    These researchers determined if this disordered electrical signaling of the heart - this reduced heart rate variability - during rest and during deep breathing was associated with pain. Several studies and some researchers and doctors including Dr. Julia Newton and Dr. Martinez-Levin believe autonomic nervous system problems play a key role in producing fatigue and pain in ME/CFS and FM and other diseases. (Newton believes they may underlie all fatigue and disorders). Vollmer's ME/CFS studies have linked reduced HRV to problems with cognition and sleep and we just saw evidence that vagus nerve stimulation can produce miracles in at least some people with fibromyalgia.

    The links appear to be there...but did this study bear them out?

    It did. This study further cemented the association between overactivation of the sympathetic nervous system (fight or flight) and the underactivation of the parasympathetic nervous system (PNS) in fibromyalgia. It suggested that the overactive fight or flight response on in FM virtually all the time; during deep breathing and that it doesn't stop for rest. (Indeed, other studies have shown that it doesn't stop for sleep either. Increased heart rates during sleep are present).

    The study also found that this increased fight or flight response makes a difference. The greater the reductions in parasympathetic nervous system functioning found - the greater the pain the FM patients were in.

    Treatment Possibilities

    How to rein in the fight or flight response? As noted above surgically implanted vagus nerve stimulators- if available - are an expensive and hard to find but possibly highly effective option. Cheaper options stimulating vagus nerve endings in the ear are being developed. Some beta blockers work in some patients and meditation and mindfulness can, over time, turn up the "rest and digest" response and reduce the "fight or flight response" at least to some extent.


    The study wasn't a game changer but it did validate one of the most important andd intriguing findings in FM - reduced HRV. It can only provide a boost for funding in this possible vital area.

    Last edited: Jun 3, 2015
    Merida, Grace2U, Tami and 1 other person like this.
  2. Grace2U

    Grace2U Active Member

    Just Wednesday I underwent, what my Neurologist prescribed as, "Autonomic Testing". I haven't seen this test listed among those surveyed, yet it seems like a relevant one. I should get some feedback about the results in a few days. I will not be at all surprised if everything appears normal . Interestingly enough though, prior to the testing I was feeling an upswing with 3 days of improved energy and less pain, and after the testing I slept most of the next two days and have experienced heightened pain and fatigue since. We can probably all agree that the bodily stress we experience during various tests and procedures, cause us to question whether a particular test is worth having.... Anyone had this testing? (Sweat Test, Pulmonary w/Heart Rate Variance, Tilt Table)
    Wayne and Merida like this.
  3. Merida

    Merida Well-Known Member

    Grace, I have been dx ( on basis of symptoms) by a neurosurgeon with dysautonomia. He sent me to a supposed expert neurologist who thinks I have this,too. However, she won't order the tests! Says that even if they are negative, I could still have dysautonomia. Gee, I think it would be nice to have some data on heart, etc. Please keep us informed of your experience and results.
    Wayne and Grace2U like this.
  4. AnneVA

    AnneVA Active Member

    tilt table test can wipe you out for a few days. I just listened to a video that Cort has posted, one by Dr. Peter Rowe out of Johns Hopkins. His team has seen the aftermath of the TTT and is now giving a saline iv and finds that patients feel better than they did when they arrived for the test. Bad before, horrible during/after but the saline really helped them recover. My girl had the TTT done 4 years ago.
    Wayne, Merida and Grace2U like this.
  5. Grace2U

    Grace2U Active Member

    I'll let you know the outcome. Thank you Merida and AnneVA for your comments
    Merida likes this.
  6. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Just the fact that the tilt table test wiped you out says something. I did a tilt table test with my twin brother for a study. We both "passed" but he had no symptoms at all - it didn't affect him at all. I on the other hand felt horrible! I think it depends on what they measure...

    Where did you get the test done by the way?

    We really should have a resource on how to do tilt testing correctly for POTS and ME/CFS...
    Wayne and Merida like this.
  7. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    So the test results wouldn't guide any treatment recommendations????
    Merida likes this.
  8. AnneVA

    AnneVA Active Member

    Some doctors don't believe in putting a very symptomatic patient thur the rigors of the TTT, especially if they have passed the poor man's TTT. With that, you lie down and after several minutes have bp and hr. recorded. Then sit for several minutes and record bp and hr. Then stand for several minutes and then record bp and hr. If you meet the criteria of an increase in hr by 30 beats, etc., you probably have POTS. You may also catch that bp crash that comes for some people. What Rowe was saying was that a saline iv after the test yielded significant improvement with patients feeling better than when they walked into the office. That standing causes a lot of blood to pool in the legs, hands and abdomen. It should take some time for the body to recover from that stress. And if hypovolemia is part of the problem, getting that saline iv will resolve that. I like how Rowe caught that response in his patients and then he DID something to help.
    Wayne and Grace2U like this.
  9. Grace2U

    Grace2U Active Member

    The testing was done at Florida Medical Clinic, Wesley Chapel near Tampa, Florida. I can say, the testing appeared to be very comprehensive compared to both the Pulmonary test and Tilt Table test I underwent last year at a different location. I found the Sweat Test the most interesting... The approach taken was not the powder
    Merida likes this.
  10. Grace2U

    Grace2U Active Member

    It was the QSART approach. In fact, the following describes the testing:
    • The Cardiovascular Autonomic Test with Tilt assesses how well a patient’s autonomic nervous system controls blood pressure and heart rate during different maneuvers: deep breathing, the Valsalva maneuver and head-up tilt. These tests are particularly helpful in assessing patients with fainting or syncope.
    • The Quantitative Sudomotor Axon Reflex Test (QSART) measures the autonomic nerves that control sweating. This test utilizes a method to stimulate sweat glands and measure the volume of sweat that is produced. The QSART is useful in assessing many autonomic disorders, especially autonomic and small fiber neuropathies as well as some types of pain disorders. The QSART also is helpful in localizing the site of the autonomic disorder to the peripheral or central autonomic nervous system.
    I'll post the results when I get them. Just another in a long series of testing, eh? Not expecting the results to be out of the "norm", although both the technicians quickly lifted a small air cooling device to one of the leg sites saying how quickly the area heated. I found their actions pretty funny given all the technical aspects of the testing, for them, acting in tandem, to grab a common air cooler off the floor and hold it in place for several minutes !
    Merida likes this.
  11. Grace2U

    Grace2U Active Member

    Thank you AnneVA I just realized after reading your posting that I didn't tell the Techs about the heaviness I was experiencing in my legs. I did tell them of the nausea... I'll mention Rowe's discovery and intervention with the Saline IV when I follow up with Neurologist.....I hope I remember :)
  12. AnneVA

    AnneVA Active Member

    Here is a good site that might help in giving your dr. some information.

    POTS Girl Saline IV support

    Here is the video Cort posted where Rowe talked about the post TTT saline.
    Dr. Rowe OI in EDS
    Wayne and Merida like this.
  13. Merida

    Merida Well-Known Member

    Geez. I just can't believe this. Over 17 years I have seen about 6 neurologists. At least I finally got another diagnosis that makes sense.
    I am 'jumping ship' and requesting an appt. with a very well-known neurosurgeon/ researcher in L.A. - an expert in vertebral artery/cervical artery/venous blood flow. After reading about vertebral artery syndrome following chiropractic neck injury, I realize that my story fits perfectly. So, I will see where this leads.

    Of important interest, dissection of the vertebral or other neck arteries can occur spontaneously - and are of special concern in those with connective tissue disorders - EDS people !! Sometimes the only or main symptom is headache. Any sudden visual symptoms are very suspect that such an event may have occurred. There is great variability in how this can present. Have any EDS people been evaluated for this ???

    i wrote to an important (and great) Chiari site about these neck arterial dissections, which can produce exactly the same symptoms as Chiari. Looks like no ( or few ???) Chiari people have had MR angiograms ??? Wow.

    I am looking for a good article to post.
    Wayne and Grace2U like this.
  14. Issie

    Issie Well-Known Member

    Merida - Yes, lots of us have. You need an upright MRI with contrast. They will do flex movements with the MRI to see if there are any issues with movement and spinal compression. If there is a cerebral tonsil drop of the brain into the channel and pressing on the brain stem - it can be measured this way. There are not a lot of places that do upright MRI's that know how to do them and read them properly. Some of the EDS docs can direct them in the way they want them done. The docs that deal with this are mostly on the East coast. (I think Dr. Tinkle moved recently though.) I have a friend that just went through Chairi surgery. I still haven't heard directly from her as to how it's going. She lives in London. But, she had an accident and over time just got worse. She developed POTS and it continued to get worse with no let up. By the time she finally had surgery, she was nearly decapitated. They had to reattach her head to her spine. It should have killed her or at the very least paralyzed her. She had gotten a cervical collar and realized it was helping her. Many of EDS people wear them and braces to stabilize loose joints. Thankfully, she survived. I just hope with improved life and less pain.

    Grace2U and Merida like this.
  15. Grace2U

    Grace2U Active Member were right Cort....the depletion I experienced following the Autonomic Testing was an indicator of the forthcoming results :) I just a few days ago got the results as the doctor was unable to see any of his patients for 6 weeks.
    I have severe adrenalergic dysfunction and moderate sudomotor dysfunction. My Neurologist has scheduled an "Event Monitor" via a cardiologist, more blood work, a 24 hr urine collection, and a return visit to the AD Specialist in the area. Depending on what the specialist determines, I'll go to Mayo in Jacksonville. My research of the Mayo Autonomic Center seems to indicate they are one of the best. Dr Low w/Mayo actually developed the Autonomic testing.

    If, having this testing results in providing me a better quality of life, I hope each of my Health Rising friends are able to have the testing done.

    PS: I am very fortunate my Neurologist is a long time friend.
    Wayne and Merida like this.
  16. Merida

    Merida Well-Known Member

    Thanks for sharing Grace2U. Please continue to keep us posted. It is interesting that in 2010 I went to the ER with abdominal pain and fever ( the usual kind of ridiculous stuff we go thru) and got a saline IV. I felt great, the temperature went down, could not understand this. Gee, maybe it is making sense.

    Issie, I have had a CINE MRI flow study, but an MRangiogram with gadolinium looks just at the arterial blood flow in the neck and lower brain. Maybe they can do both at the same time ? But I did not have the MRangiogram, and I did not find this specifically mentioned in the Chiari discussions or at the conferences I attended ?? I sent a note to Conquer Chiari, but never got an answer. There seemed to be nothing at that site, either ??

    Grace2U, you are fortunate. I just haven't gone back to neurology. There are some interesting heart things to consider, like reversal of the great vessels and other structural issues. The heart structural 'things' run in my maternal line - along with the scoliosis. Hmmm.
    Grace2U likes this.
  17. Grace2U

    Grace2U Active Member

    Merida..... Interesting info....Thank you :) I can remember asking my orthopedic doctor whether a standing MRI could be done. That was in 2008! I've had fusions and a Cervical Pain Stimulator implanted and later removed at C-2 C-3 because the system went awry and "fried" me from head to toe. I just wonder if that misfiring could have caused my nerve damage/Adrenal Dysfunction. The only test results I've received is the initial blood work...... All okay!

    I also think of my daughter (who also failed a tilt-table test years ago) gave birth to my youngest grandson last year following fetal surgery to intervene with Spina Bifida. She has a MTHFR gene abnormality. After his birth, I've questioned if I have passed it on to her :( We'll see........ Thank for your post
  18. Merida

    Merida Well-Known Member

    Thanks for the additional info. Oh, my thoughts are with you - your youngest grandson has Spina Bifida. I don't even know what to say, except these kids may be exceptionally bright and go on to accomplish amazing things. I met a number of them at a Chiari conference. Wise beyond their years. My dream is that all kids will be born healthy, without these kinds of physical problems.

    I and my daughter have spina bifida occulta. I have a heterozygous MTHFR, but that shouldn't be a problem ?? But, I have read a great deal about neural tube defects and it is appreciated that there is a higher rate of SBO in families with a Spina Bifida member. In my family there is also scoliosis, cardiac defects, finger/feet/toe anomalies, hemangiomas in various areas, malrotation of the gut, and so much more. Also, a case of Down's syndrome and SIDS. I found that chromosome 22q11.2 deletions sort of match up with what I observe. I also found research from 1976 ( David Katz/Baruj Benacerraf - famous Harvard docs) that comments that the HLA genes are on the same chromosome 6 " at some distance" from a locus or loci that control spinal development and contribute to spina bifida occulta and other spinal defects. I just don't know enough.

    Yes, I had an Interstim implanted for a trial - at the sacral nerve roots due to severe GI dysfunction. My leg pain was temporarily eliminated, but I had to turn the thing off to have any bladder/bowel function. After 10 days I got into terrible pain in the whole pelvic region, and I developed a funny 'throbbing' sensation. It took 2 weeks or so after the Interstim was removed for the funny neurological throbbing to stop. It felt as if the Interstim had actually 'reprogrammed' some nerves and it took a while for them to calm.

    Yes, my adrenal function is okay - blood wise - tho cortisol is high at times - both spot check and 24 hour. However, I understand that the best test is saliva test done at 4 times during the day??

    I am really 'planted' in the structural and function camp at this point - ie CSF and blood flow to and from the brain. Diana Driscoll seems right on to me. I am still trying to find someone who has had a MR angiogram of vertebral arteries in the neck. I have orders, but concerned about the gadolinium which has been found to cross the blood-brain barrier.
    I want to read all of your posts, then comment some more. I have trouble holding a lot of things in my head. But, again, even if spinal fluid flow is normal ( as best determined), is blood flow in the arteries and veins in the neck and lower brain normal ??????
    Grace2U likes this.
  19. Grace2U

    Grace2U Active Member

    Thank you for all the info :) I'm going to talk to my neurologist about these possibilities. I too, for years, have questioned the structional & functional dynamics.....especially having had 3 surgeries involving C-2 - C-6 levels.

    I saw somewhere (maybe on YouTube) where a doctor has shown significant positive outcomes with a ballooning procedure he does (having to do with the blood flow to the brain). Is this not what you are referring to is it?

    My Neuro said the blood work done came back okay. I begin a 30 day "event monitor" tomorrow and am awaiting the results of the 24hr Urine and an appt with the Adrenal Dysfunction specialist. I commented to my husband that all these tests will probably come back normal..... We get use to tests results being normal I think. If we could just know what's causing all of this, maybe we could avoid "triggers"

    I've not had the MTHFR test....I should probably request that??? My PC doc can prescribe that I think. Again Merida.... Thank you
  20. Grace2U

    Grace2U Active Member

    You & Issie sound well versed in these areas.....Thank you for sharing your expertise and insights! You both have given me much to think about