Chronic Fatigue, Fibromyalgia, Myofascial Pain Syndrome: What Do They Have In Common?

Hello dear readers.  I am writing this from a Comfort Inn in Grand Rapids, Michigan.  I am in bed.  I have been in bed for 26 hours, except for time out in the bathtub and walking Noga the Angel Dog, which I don’t do very often because she’s trained to go on potty pads.  That’s a blessing because these days I just don’t get far from a bed or chair.  Sigh.

I seem to have Chronic Fatigue Syndrome.  Not so long ago it was called CFIDS, Chronic Fatigue and Immune Dysfunction Syndrome.  I don’t know why they (“they” meaning the committee of chimpanzees that decides our fate by means of the ICD, or International Classification of Disease, which is constantly changing according to progress in medical science and the caprice of its members) changed it, because it seems to exactly describe the phenomena we miserable sufferers experience: constant overwhelming fatigue, and a weakened immune system that results in our catching every virus that comes within 10 miles of us.

I take this whole thing very personally, because up till the year 2008 I felt just fine, almost all of the time.  In fact, except for when I was depressed, I lived a very active, even athletic, life, working with dogs and horses, skiing, hiking, camping, aerobics, dancing, weight lifting, Tai Chi, Kung Fu….hardly sedentary, and this in addition to my long shifts on my feet in the ER and/or office.

Then–wham–I started pooping out on the last leg of my third floor apartment.  Shoot, I’d been going up and down those three floors for over a year, so why should I suddenly crap out two-thirds of the way up?  I went to my GP, who ran a bunch of tests and found me Vitamin D depleted, and with a strange kind of anemia.  Since I complained of a rapid heart beat and vague chest discomfort when climbing stairs or hills, he sent me for an echocardiogram.

That showed a bit of mitral valve prolapse, which can account for all the symptoms I was having, but the cardiologist smirked at me and said that the degree of prolapse I had could not account for my symptoms, and that the only clear result of the echo was that I was “out of shape.”  This made me furious, as I walked everywhere I went, did yoga, and of course climbed stairs.

So, since there didn’t seem to be much wrong with me (although in retrospect all those things I’ve mentioned, if added together, could certainly cause fatigue) I took my perennial state of exhaustion to be the “new normal” and pushed on through it.  Then I started getting sore.  All over.  I went for Chinese acupuncture, took herbs, and prayed a lot, but if anything I just got worse.

At that time I had a thriving Medical Acupuncture practice myself, and kept right on working.  Every once in a while I had to call and reschedule a patient because I just couldn’t muster the energy necessary to keep my own energy field intact while doing treatment.

Then disaster really struck.

I was the holistic doctor to an extended family, who were also close friends.  I was at their home a lot.  One of the grandchildren became ill with a sore throat, runny nose, fever, and general miseries.  The GP did a strep test, which was negative, and since he was a very good GP, he did an actual physical exam (a dying art) and found that the child had a slightly enlarged liver;  so he ordered tests for viruses that typically cause such signs.

The labs showed that the toddler had Cytomegalovirus (CMV), which many people contract as babies or young children.  It is in the herpes virus family that contains chickenpox, Epstein-Barr, and other common maladies.  It’s usually a benign, self-limiting illness, but like all herpes viruses, it goes dormant and hangs out in the spinal nerves, and can, uncommonly, cause a mononucleosis syndrome later in life, if the immune system takes a vacation for some reason.  In people with severely compromised immune systems, it can cause serious illness with damage to various organs.

I got it.  The serious kind.  It affected my small intestine, and I lost 30 lb., and had to take digestive enzymes for the next four years in order to digest my food and not poop it out basically unchanged.  Thank God I am over that now, and can finally eat without worrying about whether I took enough enzyme to digest whatever I am eating.

I have had five HIV tests in the last three years, because various doctors could not believe that I acquired acute CMV (proven by blood test) and didn’t have HIV, because in order to get acute CMV your immune system has to be basically nonfunctional.  All of the tests came back negative.

Why did I just go off on a seeming tangent about my various symptoms and maladies?  Because I want to make the connection between Chronic Fatigue and Immune Dysfunction, and argue that although the ICD monkeys dropped the “IDS” from “CFIDS,” they are clearly wrong, as most of you with CFS will agree.

Yesterday when I was collapsed in bed, yet unable to sleep, I started cruising the Medscape physician-only site and found a great article on the science of Chronic Fatigue.  There was a link to another article on Fibromyalgia, and I started following the breadcrumb trail of a wonderful series of articles that demonstrated that these three syndromes are finally being taken seriously, and much research is being done.

The three syndromes, Chronic Fatigue, Fibromyalgia, and Myofascial Pain Syndrome, have much in common in that all of them involve hypersensitivity in different parts of the brain and spinal cord.  There is a technical difference between the two pain syndromes, but they overlap and I don’t want to complicate things more than they already are, so let’s move on.

Although these syndromes have been recognized by medical doctors for centuries, they have most often been chalked up to neurosis and shucked off as hysterical, or a personality disorder, or imaginary, since they are mostly experienced by women.

But over the last few years, several pioneering university-based neurophysiologists have taken to looking into the possibility that people experiencing these syndromes might have abnormalities in the parts of the brain that secrete neurochemicals such as serotonin, GABA, dopamine, and others.  It turns out that people with CFIDS/Fibro/Myofascial Pain have very different neurochemistry both in brain and spinal cord, in the places where pain is processed.  They also secrete abnormally large amounts of Substance P, which is a direct cause of pain, and other chemical messengers that tell the brain, “I hurt.”

Functional MRI (fMRI) testing showed that the sensitivity of different parts of the brain was turned way up in people with CFIDS/FM/MFP, and each syndrome shows its own distinct abnormalities, which do overlap in the pain syndromes but not in CFIDS, which has its very own brain abnormality.

Almost everyone who suffers from one of the syndromes will have sleep disorders.  The scientists studied this in the sleep lab, and found that the sleep EEG (brain wave test) was abnormal in two very specific ways, in almost all of the subjects.  The abnormalities explain why our sleep is restless and un-refreshing, and also why we get our best sleep in the early morning hours.

And when the researchers looked at the demographics of the three syndromes, they discovered to their horror that the suicide rate in sufferers is TEN TIMES that of non-sufferers!  That fact is, thank God, putting their feet to the flames; and they are actively looking for specific treatments.  But for now, we are on our own.

So what can we do to help ourselves?

So far, the prescription is disappointing.

The recommendations are: eat a healthy diet low in sugars, so as not to feed the overgrowth of bacteria and yeast that many people have as a result of abnormal immunity;  gentle exercise (yeah right, I just walked my dog about 200 yards and my legs ached for hours afterward); meditation (that does help me); muscle relaxants such as gabapentin and a whole list of others; acupuncture; DBT and CBT; psychotherapy and antidepressants to deal with the psychological impact of the syndromes and resulting depression; and pain medication if necessary.

On the subject of acupuncture, I can tell you with absolute honesty that I have cured, and I do mean cured, case after case of all three syndromes.  My clients got better, went back to work and their normal lives, and didn’t come back.  I know they didn’t come back for the reason that they were cured, and not because the treatment didn’t work, because I lived in the community and saw them around, and they referred patients to me.

One woman had such bad CFS and FM that she couldn’t even get out of bed to come to my office, so I made house calls for a couple of weeks until she was strong enough to drive herself to the office for treatment.  She went back to work after about six months, and needed no further treatment.

Sigh.  I wish I could treat myself, but the points are largely on the back.  The specific points and needling techniques are not part of the Traditional Chinese Medicine toolbox, so I guess I need to find an acupuncturist who is willing to learn the special techniques for treating the syndromes.

Until then, I guess I’ll soldier on.  I know I’m not alone in this battle to simply live life.

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27 Comments

  1. Terri

     /  March 7, 2015

    Ah….I have it too. Going on 20 years. I feel like I lost my life at 29. However, I’m diligent at watching real recovery stories and my newest thing is definitely pacing, whether I like it or not. 15 minutes activity, 20 minutes of COMPLETE resting. Acupuncture I tried in the very beginning, I think it helped a bit, but being on disability, the fees were just too much to bear. So I’m soldering on with you girl! Yes, it is real and horrible……..I pray a lot also. PTSD is almost a breeze compared to this crap.

    Reply
    • I’m so sorry that you’re a sister sufferer 😦 Speaking of PTSD, I have never had a “syndrome” client who did not have a history of abuse or other trauma. I have a theory about that, that I will write about in a future post. Sending you healing thoughts…

      Reply
  2. that info is absolutely fascinating. many gp’s think fibro is a psychiatric illness, or someone who is attention seeking. im so sorry tho that you have to be a sufferer of these, and wish ‘we’ had a way of really helping with these illnesses. i can’t imagine how hard it must be to try to push through. sending my love and support.

    Reply
    • I think it’s very interesting and important that many of the biological mechanisms are shared between psychiatric illness and the “syndromes,” in terms of brain sensitivities and chemical messengers. It’s such a relief that both mental illness and these awful physical illnesses are being validated by science, and therefore more likely to be taken seriously by the medical professions. I have to laugh about the word “psychosomatic,” which used to be used to refer to any illness for which a laboratory abnormality could not be found. In fact, I think it is an accurate term for some, because it is a mind-body connected illness that is very real. Thank you so much for your love and support, always! And by the way, I’ve got my van and will be officially hitting the road on Monday. Cup of tea sometime, maybe?

      Reply
  3. Oh Laura I don’t want to take your pain away I know how that feels, I will.pray for you and send you lite and love,it’s hard getting into places where it feels hopeless,helpless,I’ve been here so many times,be strong,don’t give in,divert your mind,think only of the good times
    Love you stay close
    As always Sheldon

    Reply
  4. Laura, I think I’ve mentioned to you before that I am diagnosed with both Fibro and CFS. I was actually very blessed to have had my Fibro diagnosed correctly soon after it started by a doctor of physical medicine. I later went through a bunch of the multiple doctor/it’s all in your head crap in later years when things suddenly got much, much worse. But, I digress. I was diagnosed at the age of 24, back in early 1990. I was able to continue working for nearly 10 years. It’s been a long haul, but medical research has learned so much over those years and it’s good to have it somewhat understood. Wish there were better treatments, but I’ve tried just about everything over the years. I do have sleep apnea (mostly obstructive, but also about 20% central) but this was diagnosed only about 4 years ago. The depression, check. (also have other issues such as sciatica that add to my pain) Tried many meds and interventions over the years, but at this point it has come down to be treated with pain meds over the last 13-14 years. Doctors kept sending me to PT and couldn’t understand why it made me worse…I think they didn’t believe me. The one kind of PT that has provided some relief and increased functioning when I can afford it is Myofacial Release. It seems to work on secondary issues to release fascia that has bunched up and work out muscle tension/knots. Haven’t been able to afford it for many years. I’ve never tried acupuncture, but that seems promising based on what you’ve said. Not sure if I could find someone around here that would know the special techniques. If you have any reference links on that I’d appreciate your emailing them so I can know what to ask potential acupuncturists. Not sure if my Medicare covers it?
    For those with any of these syndromes, I offer the most helpful action I have taken. I took the time to grieve the losses and changes in my life due to Fibro, and decided to wake up each day, accept where I am and make the best of it. I can recall fighting it for so, so long and it only left me bitter and angry. Yes, I have days when I don’t have such a positive attitude about it and I complain and have a little pity party. I also found some benefits to not being able to work….time home with my kids when they were younger and the time for me to be creative (so therapeutic for me!). Gentle hugs to all…

    Reply
    • Sara, your comment is so pithy I’m going to have to read it over a few times. Lots of food for thought here.
      Google “American Academy of Medical Acupuncture.” There is a “find a Medical Acupuncturist in your area” menu. Since Medical Acupuncturists are MDs or DOs, and many of us are physiatrists as well, we can often slip it into Medicare by billing a code for physical therapy or pain management, etc. Sometimes you have to remind the doc to use the proper reimbursement code, or else it will get rejected. I used to just use the 99215 code, which is “established patient, high complexity,” and that usually worked. Most Medical Acupuncturists know how to code for Medicare, since most of our patients fall into that category! Let me know if you need more help finding a doc. ❤

      Reply
      • Either you’re being sarcastic with your “pithy” comment or I have the wrong definition of pithy {wink} because succinct it is not. Being sick, I tend to have a harder time putting words together so I use too many. I’m starting to mend, but it is a very slow process. Still swollen/mucus-y bronchial tubes, wheezing when I recline or lie down, exhausted…but extremely grateful for the progress that I have made and for having no fever (tho maybe a low one would help get this crap out of me faster?).
        How are you doing, m’ dear? Still holed up in the hotel or have you picked up your new digs yet? I do hope you are feeling better. Peace to your heart

        Reply
        • Hah! Sarcasm is not on my menu, having been inoculated against it by my genetic mother. The definition of “pithy” that I am using is “densely packed with important stuff.” I didn’t know you were sick! Do you have some eucalyptus oil? You can take a bowl of hot water and put a few drops of eucalyptus on the water, and put a towel over your head and inhale the fumes. I don’t think “fumes” is the right word. Maybe “vapor,” I don’t know. My brain has been misbehaving today. But I am slowly turning my van into a hippie bus. I made the bed up with blue and purple fleece throws, and hung blue towels all around, and hung three malas (Hindu prayer beads made from a special seed) on my rear-view mirror. A good start, don’t you think? Sending healing thoughts… ❤

          Reply
          • A wonderful start! I’m so happy for you that you have the rv and are making it your own! Are you back home?
            I do see how your definition of pithy fits my post 😉 I don’t use that word myself and wasn’t familiar with it’s meaning so I looked it up. It said “concise and forcefully expressive” and gave synonyms such as “short and sweet” and “brief”….which it was not. LOL I rarely am when I write, to be honest.
            Thank you for the healing thoughts. I am making a bit of progress each day. Today is my last dose of zithro and it’s done it’s job pretty well. I do not have eucalyptus oil, nor anywhere close to get any, but I wish I did because I’d love to try it. I’ll have to think about getting some for the future. I couldn’t take the cough med I was prescribed…the codeine and I do not get along at all. I had forgotten about that when they gave me a dose in the er….much vomiting and not in my right mind, which really bothered me a great deal along with being so sick that day. I’ve been taking Musinex and it does help some.
            You take care…perhaps send some photos of the van sometime? xoxo

            Reply
  5. I have chronic pain undiagnosed for years now and am attending a pain management clinic for three weeks so this is interesting. I wish you could find a good acupuncturist seems to unfair in life when you helped so many. I used to be a holistic therapist and miss it tonnes x

    Reply
    • Oh dear, I’m so sorry you’ve been suffering for so long. I’m interested to know what they are doing at the pain clinic. You’ll have to let me know, and does it work? I’ve been getting massages, and every time, the next day I feel like I’ve got the flu, but the next few days I feel much better. I don’t know how I’ll find massage therapists on the road!

      Reply
  6. Reblogged this on It's a lonely place and commented:
    An interesting article on acupuncture and the similarities or not between chronic pain illnesses

    Reply
  7. Hi Laura,
    I’m so sorry to hear that you are not having a good time at present. It seems ironic that you write about something as I myself feel its unwelcome effects. I’m not as badly affected as you at the moment and for the sake of my sanity pray it remains that way.
    I often find myself pondering how a well person would react to waking from an unrefreshing sleep to pain so deep and consuming that your heart quails…yet you still have to pretend that all is well? I am grateful that they are spared that.
    I too rail against medical morons who redesignate illnesses only to back peddle later.
    But I digress. I am so sorry you are in pain and will pray it lifts sooner rather than later. I will be thinking of you.
    Blessings Susan 💖 💖

    Reply
    • Thank you, Susan. It’s wonderful that you are thinking about well people and hoping they stay well. I’ve noticed it’s impossible for them to fathom what it’s like to have a mental illness, let alone CFIDS and/or FM. Before it came to visit me, I could never imagine it myself. Sending healing thoughts your way xxx

      Reply
  8. savemefrombpd

     /  March 8, 2015

    Sorry… Sounds so horrible to have to deal and live with daily.
    I hope your list of things you can do to ease the symptoms help you so that you don’t have to suffer so much.
    Feel better 🙂

    Reply
    • Thank you! At this point I have to keep on keepin’ on, with little lie-downs in between tasks. I’m hoping that once I get on the road I will be more relaxed and won’t have to take the 3 benzos I’m currently on. That might help!

      Reply
  9. God’s gotta love the Psychiatrists, for naming all our distress as Mental Illiness, cause no one else can…..We can just send hugs, like I send you now.

    Reply
    • Your comment makes a great poem!

      “God’s gotta love the psychiatrists
      For naming all our distress
      As mental illness
      Cause no one else can”

      Hugs gratefully accepted, and hugs back to you!

      Reply
  10. I’m sorry that you’ve had such rotten pain. Your post was informative and easy to understand. I suspect that western medicine will eventually discover that all of the parts of our body are linked to form a whole, and that treating just one part isn’t always effective. 🙂

    Reply
    • Well, like I always told my patients, “The toe bone is connected to the foot bone.” I stole that line from “Ezekiel saw them Dry Bones,” which I think has early Negro origins, but was one of the silly songs my dad and I used to sing. Which is to say, you are right. We are body-mind-souls, connected to other souls, and all of the beings on the Earth and anywhere else are all connected by the collective soul. That’s what I learned in Kabbalah Kindergarten.

      Reply
  11. Your comment about the changing names of Chronic Fatigue Syndrome caught my eye. It was called that when I got it in about 1984. So it must have changed names and eventually returned to the one it started with!

    Reply
  12. Zel

     /  February 25, 2016

    Hi Laura,

    I’ve had chronic fatigue for 5 years and Bipolar disorder for 30, as well as being on the Autism spectrum. My GP & Psychiatrist (possibly at a loss for any other cause) think that the fatigue is linked to chronic mental illness. This actually makes sense to me, but I’m looking into other possibilities (tests etc) as well.
    Do you have any thoughts about this connection? I know everyone is different and I’m not suggesting mental illness is the cause for all chronic fatigue, but in a way it would be a relief to know, because I could stop getting millions of tests and researching online when I have the energy.

    All the best, Zel

    Reply
    • Hi Zel,

      While mental illness is relatively common, and fatigue is often a symptom and a frequent medication side effect, this does not automatically establish that the cause of the fatigue is mental illness. Like any other symptom, other causes must be ruled out before deciding that mental illness is the cause. If you are not finding satisfaction with your currents healthcare providers, it might be useful to seek a second opinion. Wishing you success. It’s an often frustrating process!

      Reply

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