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Question to those with neck issues/CCI/AAI etc

Discussion in 'General ME/CFS Discussion' started by Strawberry, Dec 13, 2018.

  1. Strawberry

    Strawberry Senior Member

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    Seattle, WA USA
    I had my monthly massage last week, and decided to have her pull lightly on my head for a couple of minutes to see if I improved. It felt GREAT!

    But now I'm worse. Pain, headaches, a little nausea, fatigue, all much worse. I'm still working, but it is VERY difficult to drive home.

    I'm okay when I wake up in the morning, but by the time I get to work, it is harder to hold my head up, and extremely difficult to drive home. Then it is straight to bed after I get my pills in me because I can't sit upright any more.

    To those that have gone through the investigative process for neck and cranial issues, has anyone had neck traction make them worse? I thought I would improve. And I was desperately hoping this would help prove my point to Dr K when I contact him.

    Thanks in advance.
    I posted here to not clutter up the other active threads that are talking about CCI/AAI
     
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  2. Daffodil

    Daffodil Senior Member

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    @Strawberry what point did u want to prove to your doctor?

    I have a lot of neck issues..that is the first symptom I had. It felt like meningitis..sometimes couldn't move my neck at all. it was as if something had infiltrated my brain.

    now I feel it in the back of my neck...at the brain stem....something in there...it feels swollen. I also have neck cramping

    I think if someone pulled my skull up, it might help because it would create a little more room......
     
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  3. Strawberry

    Strawberry Senior Member

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    I want to get an MRI to look for CCI/AAI issues, or any other neck related issues that could cause and/or be related to my ME/CFS. Your explanation sounds so much like my experiences.
     
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  4. Strawberry

    Strawberry Senior Member

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    Oh, also... I want to clarify. I did feel pretty good for a few days. Not vastly improved, but some improvement. I have deteriorated this week. My massage was a week ago Tuesday. It is so hard to hold my head up now!

    I'm just so unsure what this means...
     
  5. Rlman

    Rlman Senior Member

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    I dont know if this applies to your case but on the BTM fb group 2 people commented about how traction from things like the neck pulling devices one can buy can actually induce cci or make it worse due to the stretching of ligaments. even a hard collar gives a bit of traction they said and can make things worse for some. so i guess if a person has severe CCI then traction helps but for people where its not too bad maybe it can make it worse?
     
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  6. Rlman

    Rlman Senior Member

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    @Daffodil Have you read the CCI threads?
     
  7. Daffodil

    Daffodil Senior Member

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    hi. I am not sure if I have read them but long ago, I had a few MRI's which didn't show anything. More recently, one showed some arthritic changes in my cervial spine which I assume will get worse with time.

    I have been sick over 26 yrs so I do not think this is the cause of any of my problems...

    thanks:)
     
  8. Rlman

    Rlman Senior Member

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    you're welcome! btw Cranio cervical instability, Atlantoaxial instability and chiari are apparently missed by most radiologists according to the posts in those threads.
     
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  9. Wayne

    Wayne Senior Member

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    Good point @Rlman. I might even slightly amend your words by saying "missed by almost all radiologists...
     
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  10. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    A chiropractor explained to me that neck traction that is done while you are lying on your back should include a round pillow that stays in the natural curve of the neck so that the neck is not pulled straight back. Think of it this way - your neck has a natural curve in it and that curve needs to be maintained while in traction.

    You may need to see a chiropractor to get your neck back into shape so it isn't hurting so much. They should do x-rays before starting any work on you. A cervical collar might feel good.

    The best medication I've found for neck pain has been Flexeril (cyclobenzaprine). It will make you feel drowsy so best not to take it when you're driving. 10mg lasts about 5 hours for me and since it has a long half-life it can even affect how I feel the following day.

    The other great remedy for any kind of muscle spasm is cannabis. Vaporized or smoked you can feel muscles unwinding in 5 or 10 minutes.

    I had a whiplash injury around 1985 and then worked for a chiropractor for a short time in the 1990's.
     
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  11. xrayspex

    xrayspex Senior Member

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    Neck problem was my first big complaint too many years ago. I have investigated and tried many things for it. We found that I have cervical stenosis and some hyper mobility in the neck and I believe I have instability. For me traction is contra indicated because it helps make one set of symptoms feel better but it worsens another – I think it’s the stenosis – pulling on the neck narrows it more in my case which is the worst thing for me to do if I don’t want increased pain. I am guessing you will settle down after a while hopefully it just irritated things but will abate
     
  12. Daffodil

    Daffodil Senior Member

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    i still dont think these kinds of problems are at the core of the illness because the illness usually occurs after an infection or something. strangely, many people with CFS/ME have joint hypermobility (I have it) which increases chances of joint issues earlier in life.

    in the beginning, when i had severe neck problems, i kept begging doctors to help, telling them i feel like something has entered my brain and my neck is somehow swollen. i had severe cramping, like there wasnt enough room in there suddenly. but all the doctors did was tell me to get physio. i knew then that this was just the start of this nightmare.
     
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  13. Sandman00747

    Sandman00747 Senior Member

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    You could have written my exact same story @Daffodil. That's exactly how I came upon this nightmare. I thought I had meningitis or encephalitis at first. I probably did but the docs didn't investigate it well. Something definitely breeched my central nervous system!
     
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  14. Wayne

    Wayne Senior Member

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    Hi @Daffodil,

    I hear what you're saying. I myself have come to believe that head/neck injuries can actually significantly impact the immune system, which might explain why pwCFS are so vulnerable to chronic infections. I've thought a lot about it based on my own experience, and recently laid out my fairly brief HYPOTHESIS on another thread. -- Best...
     
    Last edited: Dec 15, 2018
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  15. Gingergrrl

    Gingergrrl Senior Member

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    @Strawberry I read your thread yesterday and had it in my mind when I saw my PT this morning. She does manual cervical traction for my neck pain and radiculopathy (the neck pain causes pain that shoots down my right arm). She is also having me use a traction machine at my PT session (just once a week) at a low weight of 10 lbs of traction.

    She said that I should track it and see how many days I feel improvement from the traction machine vs. if I feel worse. I wish I would have tracked this all along but will be doing so starting now. She said it is normal to feel some soreness after using the traction machine but it should NOT be making my neck pain worse overall.

    Re: the MRI, I just had a regular supine neck MRI earlier this week ordered by Dr. K (not b/c he suspects CCI in my case, which he actually doesn't, and I agree) versus b/c I've had significantly worsening neck and arm pain and we want to see what is going on and compare it to my neck MRI from 2010.

    I think it was good to create a new thread but I also tagged you into the main CCI/AAI thread and think it would also be good to pose your questions about MRI and traction there, too (where other people will see it).

    I asked my PT about this today, too, and she said that in someone with EDS or hyper-mobility (which I do not have), then she would NOT recommend traction b/c it can make the ligaments worse and get them out of position. But in my case (with cervical radiculopathy) she said that traction is a good treatment. She said I would not want to do it every day or at a high weight but to do it once a week with 5-10 lbs of traction should be good (in my case).

    I think everyone should check with their doctor or PT b/c each case is so different. We are hoping that my MRI results will indicate the best treatment moving forward. At this point, I can't even imagine what it would be like not to have neck pain (but I had other much worse symptoms for several years that I never dreamed would go into remission but they did so I believe that anything is possible).
     
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  16. Daffodil

    Daffodil Senior Member

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    this is actually the first time in 26 yrs that i am hearing from people with neck pain as one of their first symptoms. i thought i was one of the only ones who started that way. i actually started with mono but after that, the neck was next.
     
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  17. Rlman

    Rlman Senior Member

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    @Daffodil jeff_w said on the CCI thread and his website mechanicalbasis.org that he had EBV infection at onset of his illness but really he ultimately found out that the underlying cause of all his cfs symptoms was CCI and cranial settling. He says that CCI and other such issues weaken the immune system and make one thus suseptible to infections. he even says that it caused the MCAD he was dealing with and in others with CCI as well. I believe he said that his EBV titers normalized after correcting his cranial settling issue.
     
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  18. Daffodil

    Daffodil Senior Member

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    WHAT!!!??? no. way. how can CCI weaken the immune system!?!?!

    guess its time for a talk with jeff_w
     
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  19. gm286

    gm286

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    I have always had stiff neck -- prior to the suspected mono illness during my first week at college. That illness worsened my symptoms (including my neck). There is definitely some correlation between CFS/ME, CCI/AAI, and infectious agents but I don't know how to connect the dots between them. My AAI imaging was sent to a neuro-surgeon in Barcelona (I had to pay to get his medical opinion). Still need to wait for his answer; I will update on these threads. Should be about 2-3 weeks.
     
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  20. Daffodil

    Daffodil Senior Member

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    i read this story i came across about someone with cfs who improved after fixing his CCI
    https://www.mechanicalbasis.org/

    i do remember, decades ago, hearing about some people getting better after treating their chiari malformation. i remember getting an MRI and specifically asking a neuro if i had that...he said no.

    i thought that cutting out a bit of bone was just creating more space for the inflammed brain stem? and maybe thats why people were feeling better....but i can find no paper at all on the internet about CCI affecting the immune system.

    i see a local doc this week...i would like to ask for an MRI since i havent had one in over a decade. does anyone know what i should specifically ask for? should i say brain as usual or neck? or do they do both anyway?

    thanks all
     
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