Is Nerve Damage Affecting the Lungs in Fibromyalgia?

Discussion in 'FIbromyalgia and Pain Research' started by Cort, Jun 22, 2016.


The Fibromyalgia and ME/CFS Breathing and/or Circulation Problems Poll: I Experience or have

  1. air hunger

    35 vote(s)
  2. shallow breathing or hyperventilation

    37 vote(s)
  3. difficulty taking deep breaths

    30 vote(s)
  4. Mottled extremities

    19 vote(s)
  5. Tingling, numbness or stinging pain in extremities

    44 vote(s)
  6. Raynaud's phenomenon

    22 vote(s)
  7. Shortness of breath

    40 vote(s)
  8. None of the above

    2 vote(s)
Multiple votes are allowed.
  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    The dysautonomia in FM patients can be characterized by unrelenting sympathetic hyperactivity throughout the day associated with a deranged sympathetic response to different stressors. The authors

    The autonomic nervous system (ANS) appears to be the subject of the week for Health Rising. This study combines the autonomic nervous system with lung functioning - an issue that has not been talked in fibromyalgia that I am aware of.

    People don't typically tie fibromyalgia or chronic fatigue syndrome in with lung issues but they do crop up - particularly in ME/CFS - at times. Some people experience "air hunger" or difficulty breathing or difficulty taking deep breaths.

    Some studies suggest that ventilation - the movement of air in and out of the lung - may be reduced during exercise in some people with ME/CFS. Staci Stevens, an exercise physiologist, has speculated that the small and highly active muscles involved in breathing could be impacted in this disease.

    Lung issues may not be the major symptom associated with FM but problems with the lungs could be telling if they were a manifestation of another problem associated with the autonomic nervous system.

    The authors got to the heart of matter in this paper quickly. They reported that the sympathetic nervous system (SNS) in fibromyalgia ) is hyperactive at rest but then folds or crashes when put under stress; i.e. you're wired and tired at "rest" (some rest!) and then things tend to go haywire when you system is put under stress. (The same pattern is present in chronic fatigue syndrome (ME/CFS))

    How did they connect the lungs to fibromyalgia? They used diabetes. Diabetes is not mentioned much in connection with fibromyalgia, but the authors pointed to a similar ANS problem in diabetes which leads to problems with blood vessel filling in the very small (microvascular) blood vessels in the lungs. In diabetes this leads to a problem with carbon monoxide diffusion from the lungs.

    That's the same thing that appears to be happening in FM.

    The Study

    They took 45 FM patients and 45 controls and did a bunch of autonomic nervous system and lung volume and gas transfer tests including something called transfer factor which measures the capacity of the lung to diffuse carbon monoxide out of it. They also had them take a 31 question autonomic questionnaire called the Composite Autonomic Symptom Score or COMPASS.


    FM patients have functional microcirculation and morphological abnormalities and the abnormal pattern of reactive hyperemia is due to greater sympathetic tone leading to increased vasoconstriction.

    The authors noted that fibromyalgia patients scores on the autonomic questionnaire (COMPASS) were highly correlated with those on the Fibromyalgia Impact Questionnaire (FIQ). That suggested that the autonomic nervous system problem could be contributing to many symptoms in FM.

    The FM patients lungs didn't look so good. Total lung volume was fine, but every measure of lung functioning (carbon monoxide transfer factor, carbon monoxide diffusion capacity, alveolar capillary membrane volume and pulmonary capillary blood volume) were significantly reduced in the fibromyalgia patients.

    Further analyses found that the reduction in lung diffusing capacity was probably due to a significant reduction in lung capillary lung volume; i.e. the microvascular volume of the FM patients lungs had declined.

    Both the smallest and most common blood vessels found, our capillaries are responsible for delivering blood to most of our tissues. They are so small that a red blood cell can just barely fit through them. As they are delivering red blood cells they are also allowing small molecules such as oxygen, CO2, sugars and amino acids to diffuse in and out of them. That diffusion part is apparently not working very well.

    The authors suggested that damage to the cardiac autonomic nerves was causing problems with "the regulation of microvascular tone" and the distribution of pulmonary filling. They proposed that the receptors on our cells that cause FM patients blood vessels to dilate have been so overstimulated over time that they're not responding to signals to dilate anymore. That leaves the blood vessels constricted, impairs blood flows and even (I believe) could reduce blood volume.

    The authors ticked off a number of findings suggesting that circulation problems would be no surprise in FM. Reduced nitric oxide production prevents the blood vessels from opening sufficiently to move the blood vessels in FM patients from opening sufficiently to move the blood properly and causing arterial wall stiffness.

    They also noted the high rates of Raynaud's phenomena found in the FM participants in this study (1/3rd). Raynaud occurs when spasms in the arteries restrict blood flows usually to hands or feet causing the fingers or toes usually to turn white, then blue and then as the blood returns, causes them to tingle or burn. This is often caused by exposure to reduced temperatures. In some people being exposed to temperatures below 60 degrees can cause Reynaud's.

    The fact that the FM patients with Raynaud's phenomena tended to have worse lung test results made sense given the similar sympathetic nervous system hyperactivity found in Raynaud's. That, local hyperactivity, which affects the arteries not the smaller blood vessels found in the lungs, is so extreme that it causes the blood vessels become vasoconstricted or narrowed enough that the blood cannot get through.

    Raynaud's then appears to be another manifestation of a dysregulated autonomic nervous system in FM.

    The authors didn't spend any time on the clinical significance of their findings and it's not clear from the paper what they are. Reduced carbon dioxide diffusion is found in many lung diseases (fibrosis, alveolitis, vasculitis, COPD, emphysema, pulmonary hypertension) as well as anemia (low blood volume). It's not clear if they would contribute to shortness of breath or breathing problems sometimes found in ME/CFS or FM or if they reflect a problem which is present but which isn't causing many symptoms.

    This isn't the first time that possible microcirculatory problems have popped up in FM, however. The authors of a 2014 exercise study proposed that microcirculatory problems could be contributing to the low VO2 max findings they found in FM patients. They argued that the next exercise study in FM should examine blood flows in the small blood vessels feeding the muscles.

    Nerve Damage Proposed

    These authors proposed that damage to the autonomic cardiac nerves was mostly likely to explain the blunted lung functioning. This, of course, is not the first time that damage to the autonomic nerves has been proposed or found in FM. Autonomic nerves are among the small nerve fibers that many studies have now found damaged in the skin of FM patients.

    Last year that damage was extended to nerve fibers in the eye. Recently Sommers found such an unusual pattern of nerve damage in FM that she now calls it "small fiber pathology" to distinguish it from the more typical small fiber neuropathy found in other disorders. Caro and Winters have found damage to large nerve fibers in FM as well.

    About a year ago a researcher suggested that the deep researchers look at nerves the more they are likely to find. Her prediction appears to be coming true. From the skin to the eyes to possibly the lungs nerve problems are cropping up in fibromyalgia.

    What could be causing these nerve problems? If a Spanish group's skin findings hold up then a brew of inflammation, mitochondrial problems and oxidative stress might fill the bill.

    Attached Files:

    Last edited: Dec 13, 2017
    Dianne Riley, zzz, Martinigal and 5 others like this.
  2. Nita

    Nita Member

    Is shortness of breath the same as air hunger? When I attempt to go beyond my "exercise" tolerance, I immediately get severe shortness of breath. It does not happen at any other time. Is that air hunger? If not should there be an additional category of "Shortness of Breath" in the above pole?
  3. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I added shortness of breath. :)
    Nita likes this.
  4. Cecelia

    Cecelia Active Member

    Dr. Anne Oaklander at Harvard--Mass General Hospital Neurology--is an expert researcher for small fiber polyneuropathy. Maybe she could add something--or ought to know this about us, so that she might help.

    I sure have all the issues you wrote about above, qualifying both for FM and ME/CFS, twenty years on.

    Re: breathing, I never draw a deep breath unless I force myself or am in a rare moment of over exertion. I know my body is under-oxygenated as a result. The carbon monoxide angle is nasty. Airborne chemicals, propane heat or stoves, all cause and extra toxic reaction in my case. All kinds of neuropathy. Raynaud's yes.

    I wish our own researchers would take a break from the micro-analyses of the immune system, DNA, etc. to focus more on the big picture from the patients' perspective, specifically The End Game. Some of our oldest expert clinicians starting with Dr. Melvin Ramsay, who observed many patients from start to finish, have said that this is most often heart failure.

    My view of the big picture, the general sequence, looks like this:

    Viral infection or other initiating pathogen (+ genetic predisposition)
    Then the immune system resets in a new abnormal steady state.
    This negatively affects the brain and nervous system.
    The neuro-immune problems negatively affect the endocrine system which also shifts into a new abnormally low pattern.
    Brain fog, autonomic problems, neuropathy, possibly microglial activation, etc. follow.

    As the autonomic nervous system is affected, critical functions like blood pressure, circulation, breathing, heart function, digestive function all reset lower.

    Feedback loops throughout the body get many systems involved and keep them at a steady abnormal state.

    Result: Body shows increasingly poor functioning, stamina and resilience. Everything wears down unusually quickly. This may be slowed by adequate rest and supports. Some aspects may temporarily improve with good care and management, but the basic illness continues.

    Outcome: Earlier death. Heart failure is said to be the main cause of death for ME/CFS, if we have not despaired and committed suicide first.

    I sure wish that researchers would key in on the function of the heart, what will get us in the end, instead of only looking for whatever got us in the beginning.
    Last edited by a moderator: Jun 22, 2016
  5. weyland

    weyland Well-Known Member

    What if they are one and the same? The viruses that trigger and probably perpetuate ME have also been found in dead patients hearts.
    Farmgirl and GinnyMH like this.
  6. Cecelia

    Cecelia Active Member

    I know someone who had ME/CFS for two decades, starting with an acute flu. When he suddenly needed his aortic valve replaced--it was 70% blocked--and had a bovine valve put in, his ME/CFS cleared up! It was hypothesized that this part of his body had functioned as a viral reservoir all those years, but no one knows for sure. He has been better for a few years now, able to work and do many things he had believed he never would again.
    GinnyMH likes this.
  7. Martinigal

    Martinigal Active Member

    This lung involvement is interesting. I have had an abnormal amount of lung infections for someone my age and no valid reason why this would happen. I had Pneumonia in 2011.

    Then I had it again in 2014, but this time I was hospitalized and it was severe. Back in March of this year I had an infection in the lung pleura. Extremely painful, perhaps made more so by Fibromyalgia.

    In 2009 I had 4 Pulmonary Embolisms, which is before I was aware/diagnosed with Fibromyalgia.

    I've never really smoked, and what little I did smoke I quit at age 17 so now my lungs are the same as a non smokers.

    I have so many physical issues, too many to name and it's so frustrating. I have the neuropathy, but only in one foot and only in the heel. I have tendon damage, always rare, found in 1 in 6 mil, etc.

    My skeleton is a mess, I have Osteoporosis and joint problems in my shoulders and my hips.

    How does all this happen to just one person. I've also had cancer, open heart surgery and a strange disease in my hip that lead to a total hip replacement.

    The symptoms of Fibromyalgia are hard enough to deal with, but for me Fibro has brought with it an entire host of other physical problems, I don't know if I would have all of these issues if I didn't have Fibro, or are they because I have Fibromyalgia.
    Last edited by a moderator: Jun 22, 2016
    mymichelina likes this.
  8. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Really interesting Cecilia...I too wish we have more people thinking about or rather openly speculating about the big picture.

    I think the loss of deep breathing must mean something. Unless I focus on it - in which it requires that I, like you, force myself, I wonder if I ever take deep breaths and I was wondering as I was writing the blog if this poor pulmonary microcirculation could be partly responsible for the sensitivity to airborne materials as well.
    GinnyMH likes this.
  9. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Really interesting. A good portion of idiopathic heart problems are believed to be due to infection but almost no work on that is being done in the U.S. for some reason.
  10. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    That's really rough Martinigal. You've got to wonder how all these things can be happening to you...It must be very frustrating. I wonder if there is some string that binds...some core problem (with connective tissues?) that is contributing to all these problems?

    I wish you the best of luck! You deserve it!
  11. manyturtles

    manyturtles New Member

    Good evening all! I too have Fibro/ME plus other issues that continue to evolve. Most recently I was diagnosed and hospitalized for POTS. I am still researching the implications of this on my overall health. In addition I have (also recently) been diagnosed with Lupus and that adds another layer to the puzzle. After reading the posts tonight I also thought about my aching feet, especially the heels. My heart and lungs are also involved and I am also taking meds for these.
    The question that remains, as stated in some of the above, there must be an "over-all" view that perhaps could incorporate all the individual issues in each of these illnesses...."some string that binds". Which came first? An original illness that leads to Fibro/ME or Fibro/ME leading to the other issues?

    To Martinigal in particular, and everyone with Fibro or ME or both, it takes one h-ll of an incredibly strong individual to deal with all the health issues associated with these "syndromes" as well as the individual health challenges we face as we grow older. There is hope, there are new medical "findings" being made every day. While I, personally, haven't lost ALL hope, there are times when living moment to moment is a decision that is made, moment to moment. Let's all remember that we are not in this alone. There are others out there that depend on the support, conversation, compassion and understanding of the many, many challenges that are faced having a FIBRO/ME diagnosis. Each of us has something to offer to another. We do make a difference on this planet (beam me up Scotty!).....and moment by moment I intend to remain here, if only to say to some, See I really was ill !!! It wasn't all in my head, it was all over my body!!! LOL!

    Cort, thank you for your insights, compassion, information and for continuing with this blog. To all, Blessed be.
  12. Martinigal

    Martinigal Active Member

    Thanks Cort, I feel like I never get a break. I wish I could find a thread for my skeletal/connective tissue issues. And it's not just that, I was on 3 rounds of antibiotics from March to the end of April for 2 different infections. It never ends. The only way I can deal with it is just to get up every day and hope for the best. I do what I can, which isn't much, and I try not to beat myself up because I can't do what I used to do. It's very difficult to keep moving forward for all of us I think. Thanks for your kind words.
    Farmgirl likes this.
  13. Martinigal

    Martinigal Active Member

    To Many Turtles:
    Thanks so much for this post. I'm so sorry you've been diagnosed with an ugly bag of illness. I really like what you wrote about lending support to each other and being there for others who need a shoulder. I send a very curt message to someone who wished me a "happy early retirement". When she answered me she expressed that she is going through a difficult process which, in the end turns out to be Fibromyalgia. Her doctor has told her she is just depressed and she doesn't know what to do. I felt so badly and contacted her immediately. I'm waiting to hear back, but I will walk her through every step if that's what she needs. I remember, unfortunately, those early days when I felt so terrible and lost my ability to work and function. Yes we, members of this horrible club, must do everything we can to help others who are fighting to get by. When I had my suicide day I was saved by a book which I've recommended to so many called How To Be Sick. It literally saved my life. So any of you who haven't read it yet, please do so to get some peace. It's not at all scientific, it's a story about a woman who became sick and how she learned to accept. Because acceptance really does set you free, but it's so darn hard to hold on to.
    I'm just babbling now, but your words really touched me,, so thank you!
    And yes...To Cort! Who works so hard to keep Health Rising going and keeps it all together for those of us too foggy to figure it out!
    GinnyMH likes this.
  14. Phil Hayward

    Phil Hayward Member

    I never thought of this before, but of course as vasoconstriction is a problem in FM seemingly everywhere in the body, it is no surprise that the small blood vessels involved in CO2 diffusion are affected as well. I certainly am one who knows very well that attempting to exert beyond a certain threshold quickly leads to an oxygen-deficit, lactic-acid-overload collapse, plus post-exercise malaise including increased tension, knotting, and pain in the muscles used. But as Cort and regular followers of this blog will know, I have achieved a major improvement in condition by doing large amounts of exercise at low intensity and religiously avoiding above-threshold exertion. I believe that the benefits of exercise are achieved, including flushing out of the long-established lactic acid, calcium, toxic elements, and the combined-ingredient "sludge" that turns the myofascial ground substance from a lubricant into glue.

    I believe that the vaso-constriction is also conditional on exertion above threshold (which is inadvertently in most FM people most of the time), because the longer I have persisted with my protocol, the more ridiculously "fit" I have got at strictly aerobic levels. The power I can sustain on gym cardio machines at moderate heart rates has risen and risen. While exercising in this way, I can carry on normal conversation without difficulty. I can even talk normally to my regular cycling companions when riding uphill and keeping up with most of them - and many of them cannot talk back! Others using the same gym machine or riding with me have a heart rate under the same conditions, that is 40 to 60 b.p.m. higher than mine!

    But I still cannot "go anaerobic" (even though the threshold is now so much higher) without re-provoking all the old FM collapse and malaise problems. I would love to have the experts consider the implications of this, and of course replicate my "success" (albeit with limitations still attached) with a good-size group of patients to study.
  15. Phil Hayward

    Phil Hayward Member

    In addition to what I just said (I didn't want to make the comment too long), there is another aspect to the lungs in FM. 25 years ago, when I was a very fit cyclist but showing the first signs of decline that took years to be diagnosed correctly as FM, one of my complaints was that my lungs are starting to feel like "a balloon inside a box too small for it". I came to understand since that this was my muscles in the chest area becoming permanently tight due to FM, and effectively restricting the chest cavity space in which my lungs could expand to normal maximum size on breathing in. This is definitely an additional symptom to problems with CO2 diffusion, which I had not thought of before but it makes sense that this problem is also present. I believe I have made the comment before on this blog about the "balloon inside a box" and others agreed with that description in the case of their own experience.
    GinnyMH likes this.
  16. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    So glad she has a helper Martinigal! And so great that How to Be Sick made such a difference....It so critical to get some guidance with these difficult diseases
  17. mymichelina

    mymichelina Member


    I find this so ironic to find this article on your site today, I have been trying to find an answer to these issues.
    This is something I am dealing with on a daily basis with very little strength. Home Bound and mostly bed-bound due to pain and fatigue for over 14 years. I find myself many times a day....feeling my head and body feel cotton balls filling my head...and chest barely moving up and down. Feeling unable to take deep breaths, no energy to get up, feeling weak ...but increasing stuffy feeling in head that leads to me just passing out...fighting it all the way. I awake again...and am still so frail..and in need of more rest..yet more air. And falling asleep again. Same pattern over and over. And feeling horrible ...really horrible upon awakening each time. During the day I find myself holding my breath...then taking a deep breath and back to shallow tiny breathing.

    I am diagnosed with ME/CFS, Fibro, CRPS, CNS Disorder (my large intestine paralyzed and had to be removed due to CNS, still have issues with CNS) Lupus, Raynauds, Sjogrens, Crohns Disease, Chronic Reactivated, Current EBV, Hypothyroid, Hashimotos Thyroiditis, high carbon dioxide levels in blood, Sleep Apnea, Positive ANA, White matter lesions on pons and midbrain, Carpel Tunnel, Scoliosis 37 degrees, 1/2 esophagus damaged reflux disease, chest sternum pain and inflamation, water retention, severe joint pain, osteoporosis, osteoarthritis, etc etc on and on...I recently discovered a likely Positive Lyme Disease through a Galaxy Lab test.

    What can be done to help us? I become afraid that I am only going to be valuable to the medical community after I am dead. Because I don't know where to go with all of this now. Doctors look at me as if they have a crazy person on their hands until they see all my documented diagnoses and tests to prove everything. But specialists still only focus on their specialty...don't even try to connect dots.

    Thanks for letting me vent, I just hope they keep moving with this heart/lung connection with these diseases. Before it is too late.
    Does anyone else have anything similar to my symptoms and my diagnoses?
  18. Dianne Riley

    Dianne Riley Member

  19. Dianne Riley

    Dianne Riley Member

    I had some problems posting to this topic last week so I'll try again. My reaction to this topic of lung problems and Fibromyalgia is relief and hope. I have been experiencing shortness of breath and ongoing bronchitis since a knee replacement 1 1/2 years ago. Within days of exiting the hospital I started experiencing shortness of breath. Before long I was also coughing. Several trips to urgent care & an overnight in the hospital said I must have picked up a bug in the hospital leading to Bronchitis. I was given antibiotics, steroids & Albuterol inhaler on the 3rd trip to urgent care. I got better. Before long I istarted displaying symptoms again. This pattern has continued for 1 1/2 years with no answers. My primary care has sent me to an allergist and ENT. Still no answers. She referred me to a pulmonolist I have not yet seen, but I don't have high hopes. I did not have these problems prior to intubation and general anesthesia for the knee replacement. An article on the internet written by an anesthesiologist stated that there may be negative, lasting side effects from intubation and general anesthesia for autoimmune patients.

    I hope there will be further research and answers on this issue. Thanks for all that you do, Cort.
    Dianne Riley
  20. Issie

    Issie Well-Known Member

    Yes, breathing issues here too. But I also have apena. I'm not tolerating a CPAP right now so just using oxygen to sleep. Makes a difference.

    Don't forget not only checking Lyme and other protozoa but also MOLD. That is proving to be a biggie for me. Along with MCAS. All connected with similiar symptoms.

    lisaadele and Lissa like this.