The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Neck linked to symptoms in subset?

Discussion in 'General ME/CFS Discussion' started by AdamS, Aug 14, 2017.

  1. AdamS

    AdamS Senior Member

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    Okay, so this post is slightly less science/evidence based than my usual stuff, however...I watched a series of videos recently where a doctor suggested that Fibromyalgia and ME/CFS symptoms could be attributed to problems with the neck in a subset. Whether this is true or not I have no idea, but the guy seemed pretty knowledgable and it got me thinking about my medical history...
    • Roughly 14-28 days before my relapse into proper ICC/CCC ME/CFS + POTS, I was involved in an offroad driving experience in which my neck was jolted considerably and I felt stuff literally crunch in there.
    • I've noticed more recently that my more severe fatigue episodes are almost always triggered by my neck, usually just staring at a laptop in the usual hunched over position or even hunching over to stare at my phone while it rests at a table. I also noticed today that looking up at a tall building triggered pretty severe fatigue/brain fog...how odd, but equally exciting.
    I've had a Cranial Osteopath and Physio look at my neck and do some mild work on it, which gave me some temporary relief, I can't help but think there there could be something deeper that is damaged (nerves, blood vessels?) which could explain some of my symptoms. In fact, I remember after my first acute episode/relapse in November 2016, if I avoided turning my head, some of my symptoms were kept at bay.

    I've actually managed to do a bit of work at home recently (iOS development for anyone interested) by almost laying down while using my laptop for a couple of hours/day to avoid the onset of neck/upper back pain and then the inevitable severe fatigue.

    If I was investigating this further, my theory would be that i'd damaged some of the spinal nerves in my offroad driving day, which linked to my arms and could also explain why arm exercises and holding my arms over my head for too long can trigger relapses...this is pure speculation and me just thinking out loud based on my medical history!

    On the flipside, the neck/back pain and fatigue could just be a common symptom caused by an immune issue or an issue with energy production...who knows, either way I found it interesting! Opinions welcome!

    Video(s) i'm talking about can be found here:
    http://forums.phoenixrising.me/index.php?threads/awesome-video-on-fibromyalgia.36524/
     
    Last edited: Aug 14, 2017
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  2. Hip

    Hip Senior Member

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    Physical trauma is mentioned in the Canadian consensus criteria document as a possible trigger for ME/CFS and fibromyalgia, so it is worth exploring this angle. Although such trauma is more associated with fibromyalgia than ME/CFS. One study found fibromyalgia was 13 times more likely to occur following neck injury compared to lower extremity injury. 1 However, another study of 264 whiplash patients found no evidence of a greater incidence of fibromyalgia. 1

    The roadmap document has some info on this (search for "physical trauma").



    Have you come across the ideas of Dr Amir in London, who believes that ME/CFS-like conditions can be caused by anatomical asymmetries in the jaw bone and atlas bone in the neck, and can be fixed by proper realignment of the jawbone. His medical views are somewhat radical, but his realignment techniques may be of use to a very small subset of patients that might have some misalignment of the neck and jawbone.

    He made a few posts on this forum briefly (starting with this post). His website is here.
     
  3. lnester7

    lnester7 Seven

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    Here is my humble opinion I can come back and put the links (if I can remember to do so).
    a -> CHiari malformation is known predisposed for POTs.
    b -> POTs predisposes to CFS (as per the adolescent trial, not sure if it applies to adults but I guess if you got cfs early on then this applies to a subset).
    a -> b-> structural issues predisposes to cfs.

    so it is not a crazy deduction the logics adds up.
     
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  4. perchance dreamer

    perchance dreamer Senior Member

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    My fibromyalgia started after a head injury. The atlas adjustment made my neck pain problems worse.
     
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  5. Hip

    Hip Senior Member

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    I read that Dr Amir thinks an atlas adjustment is a bit of waste of time: he says the jaw alignment needs to be corrected first, otherwise a misaligned jaw will soon throw the atlas out of alignment again.
     
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  6. AdamS

    AdamS Senior Member

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    I haven't. Thanks for bringing this to my attention @Hip
     
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  7. pattismith

    pattismith Senior Member

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    Very interesting, it may be a cofactor for some, definitively
    I was myself injured with a broken jaw when I was a teen, so it may have been a cofactor for me too (I suffer from fatigue, pains, tendinitis, OI..). I also have my temporomandibular joint that creaks a bit when I wide open the mouth...

    And I also have problems with my neck muscles that tense too much which make pressure in my ears....
    And now that I'm getting older neck arthritis as the cherry on the ice on the cake...
     
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  8. notmyself

    notmyself Senior Member

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    ..
    my temporomandibular joint creaks aswell,in fact all joint creaks..and i do have the pressure and ringing in the ears also..i didint have none of this 9 months ago...i'm trully puzzled how me/cfs can cause craking and loose joints al over..i've been diagnosticated with osteomalacia in the kness,arthrosis of the spine,3 small herniated discs..all is mild aparentlly adn should't cause me much symptoms except some stifness and little pain according to doctors...One think is clear, somehow ME/cfs stopped my body to produce or mantain the cartiilage beetween joints..that's why they creak all the time,and tht's caused my herniated discs asell..On an MRI they find that basicly all my spine joints are deshidrated to some deegree..that's just way to weird for 26 years old..i'm sure it's conected with ME/cfs..I jsut didin t find many people experience this,and nothing in the research..
     
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  9. lansbergen

    lansbergen Senior Member

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    My neck could not keep my head upright. That disappeared overtime and lately my jawbones are healing fast.
     
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  10. notmyself

    notmyself Senior Member

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    did you've done something for it?
     
  11. lansbergen

    lansbergen Senior Member

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    Only take the immunemodulator as always.
     
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  12. notmyself

    notmyself Senior Member

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    wich one? and how exactly you convince doctors you need one?i feel i need to bribe one to get me on this kind of treatments, because i'm perfectly healthy in their opinion..
     
  13. lansbergen

    lansbergen Senior Member

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    Levamisole. When I started it I did not need a doctor because it was freely availeble as a dewormer for animals. .
     
  14. sissypop

    sissypop

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    This is interesting. I had 2 back to back whiplashes ( within 15 months ), 2 rear ended car accidents.Neither were severe enough to require hospitalization but I did have chiropractic therapy afterwards. My neck pain seemed to heal entirely or so I thought. My fibro/cfs didn't appear until years later. About 7 or 8 years. Now sometimes my worst pain is back of neck and shoulders. Car accident related or just fibro pain?
     
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  15. ChrisD

    ChrisD Senior Member

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    Hi Adam, I'm glad you are considering this too, I feel exactly the same - that symptoms worsen when leaning over a desk or just at the sofa and find that I have to make a concerted effort to sit properly at ALL times to maintain better energy and balance etc. I had about three months worth of Chiropractic therapy which always provided light relief after the atlas adjustment and a few other cervical spine adjustments, but it did not equate to a long term improvement as I had hoped. At one point I felt that I even started having Herxheimer reactions from the Chiro and it made me feel worse to the point of having Ataxia and I got very worried. My belief on this situation now is that I was only treating the body at the surface level and that actually the ongoing inflammation from the gut or wherever is actually having a continued effect on the formation of my spine and hence squashing nerves - this could be complete pseudoscience so someone please correct me! My Chiropractor even asked me if I had ever been in an accident or fallen hard on my neck at one vertebrae was out of position in my CS, I know that I have definitely not had any incident like this so it can only be caused by infection/posture. If I am honest, I worry often similarly to @notmyself as on X-ray there have been some clear and quite shocking changes that may not be reversible :/ I feel like waving these X-rays in front of my doctor and CFS 'specialist'
     
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  16. notmyself

    notmyself Senior Member

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    never have accident either..inflamation is eating up the cartilage and fluid beetween discs,vertebrae..resulting in high risk of dislocated discs,wich would press on the nerves,resulting in all kinds of sytmptoms (not necesarry pain )..the stiifness and lack of mobility is caused by the same issue..it's a different process than arthritis tho'..
     
  17. AdamS

    AdamS Senior Member

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    Wow, thanks for sharing your experiences mate, much appreciated, I was thinking along the same lines as you, but like you say, there must be something deeper underlying.
     
  18. pattismith

    pattismith Senior Member

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  19. unto

    unto Senior Member

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    Physical trauma I do not think can be co-factor of ME, it is an episode that reveals the disease (which is already present) in that person.

    Neck pain, like those at the other joints: shoulders, columns, feet, are also characteristic of ME as is characteristic of "fatigue"

    Neck trauma as well as revealing ME makes that part of the body more vulnerable and more susceptible to pain .....
     
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  20. tudiemoore

    tudiemoore

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    Pretty brain-foggy right now but will pass this on for what it's worth--I have 3 scoliosis curves, one in my neck.

    For years I had almost daily pain and discomfort, used stretching, massage, meds, wore a neck brace, convential
    chiro--the whole bit.
    At this time my ME/CFS was mild/moderate.

    I reached the point of "try anything" and when I heard of another type of chiropractic treatment, Network Chiropractic, I decided to try it.

    Yes, initially seemed "woo-woo" but so many people I came across had pain relief, etc. that I plunged in.

    I am not a person who goes for the "woo-woo", but had an evaluation, and 3 months of treatments.
    Twelve years later I have had no recurring neck problems.

    I would say, do not discount this treatment.
    T.
     

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