cervical torticollis

Discussion in 'Fibromyalgia Main Forum' started by vivian53, Feb 8, 2009.

  1. vivian53

    vivian53 Member

    I have been diagnosed with FM for the past 12 years. I was bedridden the first 2 years and have progressively gotten better using varying treatment modalities. I was, until this year, seeming almost normal, when I started to have severe shoulder pain. It has worsened over the past year and now another symptom has appeared with the shoulder pain: a muscle in the left side of my neck has tightened and now sticks out. My pain management doctor calls it a "torticollis". I have done some cursory research on this diagnosis and D*&% if it is not another potentially disabling condition. It is called a "wry neck" in lay terms and at its worse can cause a persons head to pull to one side. It is of course, worsened by stress etc. I am now stressing over it ( what else), afraid that it will get worse, even to the point of being a pronounced physical deformation. The whole point of my writing this is to ask if any one else here has this or knows anyone with FM who has it. If so, what are you doing (if anything) that helps relieve the pain or keep it from progressing? Any info will be greatly appreciated.

    PS I am new to this board and have learned a lot from you all. Thanks for being such a nice safe, supportive place.
  2. Waynesrhythm

    Waynesrhythm Member

    Hi Vivian,

    I have quite honestly never heard of this condition before. It sounds like a very difficult situation to be dealing with.

    I couldn't tell from your BIO whether you have any kind of orientation for alternative medicine, but I have posted a quite a bit on an alternative procedure called Atlas Profilax that has helped me considerably. And I believe it has the potential to help just about any serious neck problems people may have.

    My main thread on my AP experience is located at:

    http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1120581

    I've created a number of links on this thread and others to take you to other posts I've made regarding structural issues and how they may be helped. If you find any of this of interest, I'd be happy to try to answer any questions you may have.

    Best of luck in finding something that will help you. -- Wayne
  3. mindblower

    mindblower New Member

    Medical botox is what I'm about to explore with my pain specialist neurologist for my ME/CFS associated cervical torticollis. I came down with this neurological injury four years ago as a result of using the angiotensin II blocker drug called Benicar as part of a very controversial experimental ME/CFS treatment protocol that includes it.

    Benicar also seems to block vitmamin D receptors, which means it may act in similar fashion to dopamine agonist medications(google for a list of these) already known to be associated with inducing cervical torticollis. So, at the very least I recommend avoiding these type of meds and carefully exploring effective treatments for torticollis with a competent and experienced movement disorder neurologist.

    MB
    [This Message was Edited on 02/08/2009]
  4. simonedb

    simonedb Member

    tortise collar

    yea I have wondered about that over the years. doesnt it seem like there are different names for similar problems sometimes.

    I have slight scoliosis that curves off up towards cervical area to one side and since my neck got injured during chiro manipulation its hypermobile and sometimes when I have gotten massages or if I lie quietly my neck will just jerk by itself like its trying to adjust itself. at times there is a big knot on one side where it curves off or feels like its "out" a little and then it corrects itself sometimes....avoiding rambunctious activities a must.
    I am really curious how the spine and chronic fatigue and or fibromyalgia often seem to tie into one another, in odd unexpected ways too at times, like chemical sensitivity, how might that tie into the spine?
    [This Message was Edited on 02/08/2009]
  5. jaba520

    jaba520 New Member

    my friends son was an infant and diagnosed with this, they put him through physical therapy and he is fine now. maybe physical therapy could help you as well.

    i hope you get to feeling better again soon

    amy
  6. mindblower

    mindblower New Member

    Don't know if you were addressing me or vivian53, but in my case physical therapy and a few other treatments I've tried to no avail. Apparently drug induced torticollis that doesn't resolve on its own within a few years of onset generally doesn't and requires lifelong treatment with whatever therapy one can find that helps, medical botox seeming to be the most popular choice these days from my reading.

    MB
  7. vivian53

    vivian53 Member

    Hi all and thank you for your replies. I have read that there are several different reasons for this problem and in turn several different suggested remedies. The medication induced torticollis, like you have MB, is evidently treated with medical botox or myobloc. I want to tell you, MB, how sorry I am that you have this painful condition, especially since it came as the result of your trying to get better from CFS. I hope you find relief with the botox. The kind I have, as a result of a pinched nerve and swelling, can benefit from physical therapy. It just hasn't helped me. Wayne, thanks for your feedback and I will check that link out. I am now taking Mobic, an anti-inflamatory, and it has helped a little. I have an appt with my pain management doc to get botox injection(s) next week and I hope it helps. I am now wondering if getting a whopping dose of poison shot in to our necks is good for us........

    vivian
  8. dannybex

    dannybex Member

    I worry about botox -- it seems like it was fast-tracked into FDA approval before they really know the long term consequences, but at the same time, I'm not aware of the cause of the condition. Have you had an MRI to rule out any brain issues?

    Also wanted to let you know I replied (finally) to your question about low stomach acid/GERG on the I NEED ENERGY thread.

    take care,

    Dan
  9. mindblower

    mindblower New Member

    Couldn't tell if you were addressing Vivian or myself, but, yes, I've had an MRI done, actually several over the years with ME/CFS. The one I had after the dystonia symptoms started showed nothing that seemed to correlate.

    But one interesting brain scan I had done previous to dystonia symptom onset and the use of benicar to treat my ME/CFS, is a PET scan I had done in 2001. It showed some hypoperfusion(abnormal low blood flow) in the thalamus.

    Interestingly, hypoperfusion like this, the thalamus and other structures close to it in the brain are often discussed in relation to dystonia and sometimes too in relation to ME/CFS, though of course the amount of research is very minimal by comparison. My experience with benicar seems almost certainly altered something relating to these structures and perfusion levels, possibly leading to my dystonia.

    MB
    [This Message was Edited on 02/10/2009]
  10. mindblower

    mindblower New Member

    "I am now wondering if getting a whopping dose of poison shot in to our necks is good for us........vivian"

    As someone with ME/CFS, I've had the same consideration about botox too for treating my dystonia symptoms. But the issue has become I've tried pretty much everything else suggested that seems might have a fighting chance of helping these pretty troublesome symptoms.

    And despite ourselves, we also may need to guard against reacting with too much fear in viewing something that may be reasonably safe when used correctly for this purpose and given by a competent doc trained in this field. One man's poison can be another man's cure and vice versa.

    Caveat Emptor of course. Thanks for your compassion, Vivian.

    MB


    [This Message was Edited on 02/12/2009]