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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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ME caused by squeezed nerve?

Discussion in 'General ME/CFS Discussion' started by optimist, Jul 21, 2014.

  1. Wayne

    Wayne Senior Member

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    Regarding TMJ Issues, the following is a link to a testimonial by a woman with FM who went to a TMJ dentist and got significant relief:

    Oral Systemic Balance

    Here's the introductory paragraph:

    Oral Systemic Balance is the therapy that provided the catalyst for my recovery from years of chronic illness. Developed by a TMJ dentist named Farrand Robson, the therapy employs oral appliances to help patients breathe better and restore balance to the autonomic nervous system. I was a patient of Dr. Robson's for two years beginning in 2007 and as a result pulled out of the downward trajectory that my health had been on for over 20 years. One of the reasons I started my blog was to share information about this therapy with others. I estimate that I got initially 30% better with this therapy and since wearing my appliances I have suffered no relapses.
    Asklipia likes this.
  2. Hip

    Hip Senior Member

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    Very interesting, @Wayne.

    That Oral Systemic Balance developed by Dr Farrand Robson which uses oral dental appliances to reposition the jaw sounds very similar to Dr Amir's approach.

    My guess is that these dental appliance techniques may work better for fibromyalgia patients, since as mentioned above, in TMJ dysfunction, substance P is released into the cerebrospinal fluid when the trigeminal nerve (which runs through the lower jaw) is stimulated, and substance P would appear to be intimately involved with the etiology of fibromyalgia. By fixing TMJ, you should reduce substance P release, which in turn may ameliorate the fibromyalgia.
    Asklipia and Wayne like this.
  3. Wayne

    Wayne Senior Member

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    Just ran across this bookmarked (impressive) testimonial by a woman who went to see Dr. Amir:

    Recovery from Chronic Fatigue Syndrome (CFS)
    Asklipia likes this.
  4. Wayne

    Wayne Senior Member

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    Asklipia likes this.
  5. ukxmrv

    ukxmrv Senior Member

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    If someone had this as onset

    "Terrible pains traveled from my right ear down the right side of my jaw and under my tongue. This would alternate from pain to numbness and loss of feeling in this area. The symptoms in my head and neck got worse and my body became subject to profound fatigue which concentrated more on the right than on the left side of my body. "

    We are all trying to treat ourselves and to find people to help. Faced with an enormous range of possible doctors, alternative practitioners, drugs, supplements, devices we need to spend some quality and safety controls.

    The issues that the original poster was asking about are different to the links posted.

    Mr Amir as an example isn't a carpenter and I'm sure if asked he wouldn't claim to have a 100% rate on ME and CFS and to have cured 40/ 70 people with ME and CFS while working around his carpentry.
    Last edited: Jul 23, 2014
  6. Hip

    Hip Senior Member

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    The purpose of the links I posted about Dr Amir was to show that there is some plausibility, and indeed treatment success, with the general ideas held by this carpenter-healer, who believes that ME/CFS is caused by the atlas bone being misaligned, and squeezing some nerves.

    Dr Amir treats both jaw misalignment and atlas vertebra misalignment, whereas according to @optimist's first post, our carpenter focuses on the atlas. Although I obviously cannot say whether his treatment will work, I can say that the concept does appear to have plausibility. I myself would be tempted to try it, although I would be put off by the fact that the treatment does seem very intensive (treatment 4 or 5 days a week for 6 months) and possibly therefore expensive in the long run.
    Last edited: Jul 23, 2014
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  7. Gingergrrl

    Gingergrrl Senior Member

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    I am not sure if the woman in the example with Dr. Amir actually had ME/CFS as defined by the CCC/ICC criteria. She did not mention PEM or some of the core symptoms.

    It seemed more like she had TMJ, ear problems, eye problems that were all related and impaired her ability to eat and made her weak and fatigued. I believe she was very ill and that Dr. Amir probably saved her life but just not sure she had ME/CFS?
    NK17 and SOC like this.
  8. optimist

    optimist Senior Member

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    Sorry for not popping in more frequent on this post, but it has just been too hot today, and I have a hard time gathering my thoughts :) But a big thank you to all for all the contributions.
    Wayne likes this.
  9. IreneF

    IreneF Senior Member

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    I can't evaluate individual claims. We've all had sincere and enthusiastic people recommend something that "cured a friend". The explanation just didn't make sense to me.
  10. Tired of being sick

    Tired of being sick Senior Member

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    Thank you for making this thread optimist!!

    The contributors actually made it very positive!!

    The vagus nerve happens to be in the area of the body where I had many head and neck injuries

    So this makes crystal clear sense
    It has many names as well

    Absolutely True to its name!!
    Last edited: Jul 23, 2014
    Wayne, Sushi and optimist like this.
  11. Tired of being sick

    Tired of being sick Senior Member

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    This is very interesting as well!!

  12. Tired of being sick

    Tired of being sick Senior Member

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    Google search of:>vagus nerve stimulation for CFS/ME and POTS

    Awesome!!!
  13. Hip

    Hip Senior Member

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    Agreed, it's hard to say whether she had CCC/ICC ME/CFS or something else, but I think this certainly indicates that TMJ realignment can have a profound effect on health, at least in some cases.
    Gingergrrl likes this.
  14. optimist

    optimist Senior Member

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    Actually, I was at a beach in the Mediterranean sea in 2006 where we were "diving" into the waves as they came towards us. I was unfortunate one time and was taken by a wave head first and dragged down to the bottom smashing my head so hard I feared my neck had broken.

    According to my memory my friends said they saw my standing up, but not standing straight, but swinging - so they said they came to take me up on the beach. I found it strange because I could not remember that myself.

    So... there is a possibility something funny could have happened to the nerves in my neck at that point...
    Wayne, Hip and Sushi like this.
  15. Hip

    Hip Senior Member

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    @optimist
    Did that bash to the head occur before you developed ME/CFS?
  16. optimist

    optimist Senior Member

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    yes - I believe the ME came around 2011...
  17. Tired of being sick

    Tired of being sick Senior Member

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    I edited post #32 to




    and i apologize..........
  18. optimist

    optimist Senior Member

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  19. Gingergrrl

    Gingergrrl Senior Member

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    @optimist After hearing this part, I do think that this type of treatment could help you. However, I would go to a reputable professional for an assessment versus the guru/carpenter guy that your friend is recommending.

    @Hip I totally agree and I do think there are treatments that seem "alternative" but when we research them more, have a basis and merit behind them. I don't think any of this would apply to me as I have never had TMJ or jaw pain.
  20. Tired of being sick

    Tired of being sick Senior Member

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    My head and neck injury history........

    So I never got to experience what it was to have a normal healthy life as a teen or adult..

    I thought everyone felt the way i did so it took a very very long long time for me to realize that my life and abilities were nowhere near normal in fact I realized that they were not even in the same solar system!!

    Which makes perfect sense of why I was alienated my entire life once anyone and everyone (outside of my family) knew me..........


    My head and neck injury history........
    Injury history:

    1978:
    Motorcycle accident
    Knocked unconscious for 30 to 45 minutes (I Believe this caused Narcolepsy,CFS,
    Sleep Apnea, non restorative sleep or unable to reach stage 3,4 sleep)

    Both wrists were broken(left required surgery(compound fracture) also lost all control of left arm
    for close to a year.Dr Searfoss told me I had permanent nerve damage and
    would never be able to build left muscles back to natural strength.

    6 inch laceration on shin of left leg that required stitches.
    Hole in skin down to the muscle of left outer left leg approximately
    3 inches below hip joint.
    Was hospitalized for about a month.(They ran a lot of brain tests on me but I have no record of what they found)
    I could not stay awake the majority of time during my stay..
    The only thing that awoke me was extreme left arm pain
    (cause dr. set arm wrong)
    So then the nurse would come in and give me a shot of pain killer, then off to sleep
    I went until pain awoke me again. which was a viscous never ending cycle
    the entire time I was hospitalized..
    This continued at home ALL summer as well, except there was no pain medicine prescribed to me.
    After the pain left.The sleepiness stayed with me from there on..
    When I returned to school,` slept through grades 7th,8th(twice)9th,
    10th 11th and 12th were a little better but not much..

    I remember falling asleep standing up in the (11th grade)Vocational school while teacher had us huddle around him for demonstration..Then he up and teed off by slapping me across my face!


    6 months later Dr. Searfoss had to re-perform surgery
    because he set left wrist wrong during original surgery.

    1981:2 bicycle accidents within 3 days (Head injuries)
    1st accident
    , I was jumping a ramp while in the air,the front end of bike
    nose dived causing me to go over the handle bars, face plant into a mud puddle
    while the bicycle landed on the back of my head, sprocket first, splitting my head open.
    lost a lot of blood and required 18 stitches...
    2nd accident,2 days later,I was riding a ten speed along the highway carrying a hand saw
    in right hand while gripping the handle bar.
    A car went by and the wind from car blew the saw into the front spokes causing me to flip
    over handle bars and face plant into gravel on side of highway,piece of gravel implanted in
    right side of forehead while the front of bicycle seat gashed the rear of head open in a
    different place than the 1st gash from 1st accident..
    Required stitches in the back of head and right forehead.
    1983: Lumbar deformity discovery
    During a routine physical at Vo-Tech school,Dr.discovered a curve in my lower lumbar
    section of spine.
    Told me to see a chiropractor ASAP
    1986:Football neck injury.
    Led into tackle with the crown of my head while another player made contact at the same time
    on the direct opposite side which caused tremendous force on my neck causing it to crack,
    compacting inward,felt like neck collapsed liken to a turtle
    Chiropractor began treating neck as well.
    1987:2 car accidents within 4 month span causing whiplash
    July of 87 I was pulling into drive way while a car rear ended me at approximately
    45 mph causing my head to violently snap back then forward like a whip.
    Neck was very stiff for about 2 - 3 weeks.
    October 87, was driving around a 90 degree curve on outside lane while a truck failed to make
    turn on inside lane,t-boned me on driver side door and front fender causing my neck to violently snap like a whip
    to the right then snap back to the left into driver door window causing window to shatter into tiny pieces.
    Neck was stiff for about a week and a half
    1991:Knocked unconscious
    I was a passenger on a ATV,
    Driver failed to make a 90 degree turn on a dirt N graveled road
    I only remember right before we entered the turn...
    Driver got me to regain consciousness about 5 minutes after accident
    about 20 feet into the woods, Apparently my body was bouncing off trees
    on the way to its resting spot....
    had bruises all over body but did not receive treatment.
    1995:Another neck injury
    Passenger in a truck.The driver violently veered up on bank then back off quickly
    causing my body to violently swing back then forward like a whip head first into
    windshield, shattering it.......
    causing left side my forehead and partial crown to downward crunch my neck
    Head causing neck to absorb all of the force of impact..
    Put a nice sized lump on forehead , black eye,neck stiffness for a couple weeks..
    2001:Knocked unconscious
    In July I was driving a quad on trail by myself and the next thing I remember
    woke up in the woods with eyebrow area of left eye split open with multiple
    small cuts all over scalp
    Eyebrow required stitches while blackeyed and swollen shut..
    2003:Another neck injury
    I was a passenger in a car with a work partner on a ramp ready to enter turnpike.
    I was looking at my check and the driver abruptly slammed on the brakes causing me
    to fly violently, crown first,into the windshield..
    Windshield shattered and had imprint of the crown of my head protruding out about 2 inches..
    2004:Another neck injury
    Practically Identical to the injury in 1995!
    Wayne likes this.

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