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"Flavors of MS Hug"

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    #16
    Originally posted by MSW1963 View Post
    ghostgirl, I remember those annoying neuro students and their desperate attempts to score points with the boss. If not for my then amazing MS neuro, I would have left my University Hospital long before I did.

    fishead, re: just TONIGHT, realize I actually have pain in my back.

    I glossed over the part of your post about back pain associated with your Hug. I've had back painf with muscle spasms for so long that have been ignored, I've resigned myself to accepting it. My back muscles 'seize' up and I can't stand very long at all.

    I've had this for such a long time, covered with my neuro so often that I just gave up ever expecting it to be treated or taken 'seriousely'. The impact on my general health and mobility over the years has taken a huge tole.
    What a terrible shame, that you/we have to accept that doctors will not take our pain seriously. If only they could experience our pain for 5 minutes!!
    Live simply. Love generously. Care deeply. Speak kindly.

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      #17
      Fabulous post!

      Thank you for posting on this. What well written descriptions - THANK YOU! It's helped me as I'm coming to terms with what I thought was crippling muscle tightness is actually the "MS Hug." (Silly name!)

      Mine is also a band from the mid back to upper back and is a constricting tightness that is worse than my pain. It causes anxiety. For the longest time I thought I could massage it out, but it makes it worse. Just on a fluke, my husband put his hand gently on it and kept it there and that brings relief (or sleep induced by the zanaflex and hydrocodone I take for it).

      When talking to a physical therapist friend of mine she said it was really helpful to know about his hand helping. She said, knowing that, myofascial release would likely help. She explained it (I'll try and get this right) -- Our nerves and body are surrounded by fascia. The myelin that surrounds our nerves is a type of fascia. If it gets too tight then the body has a harder time fighting the MS.

      I've been in a flare almost constantly since last summer. She helped me find a different PT than the one I had been seeing - one trained in myofascial release. I've only seen her once, but I'm excited about her "outside the box" thinking.

      Ok, sorry to babble.

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        #18
        Stimulaing area of spinal lesion=more intense hug?

        MomtoMiracle, For the longest time I thought I could massage it out, but it makes it worse.

        I think stimulating the area of spinal lesion/s intensifies my MS hug sx's and my arm/hand paralysis and pain.

        I tried exercising for core strength via a tracker bike stand which converts a regular bike into a stationary bike.

        I can't use my arms/hands because of pain and paralysis from supporting my body weight on the handle bars from a c-spine lesion. That's why I can't bike outdoors on a non-stationary bike.

        While using the tracker/stationary bike, I realized holding my posture hand free irritated the the spinal lesion? My hug sx greately intensified to unbarable and constant.

        I am now using a recumbant bike and find supporting my spine and reducing movement in my torso is a major improvement for my 'hug' sx's and allowed me to continue my exercise routine.

        I can't use my 5lb hand held weights either without arm/hand pain and paralysis. Stimulation from most repetative arm movement with exertion exacerbates my arm/hand sx's. Also seems stimulating the lesion area by supporting all my weight on my spine exacerbates the hug sx's.

        Curious if anyone else experiences 'stimulating' the spinal lesion area exacerbates 'hug' sx's, arms/hand, or causes worse spasms in spine?

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          #19
          MomtoMiracle,

          Thank you for sharing that info with all of us. I am glad to hear your husbands hand actually helps you. That is profound!!
          Live simply. Love generously. Care deeply. Speak kindly.

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