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    • #14663

      How often do you feel pain from your MD? On a scale of 1 through 10, what is your daily pain? Are you able to accomplish tasks despite your illness? Do you have to plan your day around your pain? How do you relieve it?

    • #14910
      Barry Glaberman
      Participant

      What doctors do say is that muscular dystrophy has no pain. BS! There is a lot of pain associated with muscular dystrophy! Much is due to the fact that muscles are atrophying. As the get weaker and smaller, they are causing strain on the bones and joints that they are attached to. Since pain is subjective, mine can be anywhere from a five to a ten, which is half of a normal person’s idea of pain. I don’t take pain medication because I don’t want the side effects of them. As it progresses, I am reconsidering it.

    • #14958
      Leah Leilani
      Keymaster

      Barry, I feel the same way about pain medication. The ones I’ve been on for my Fibromyalgia have had some negative side effects including weight gain and dizziness. But I recently tried going off Gabapentin and my pain has been much worse. I think my plan going from here is to stay on a low dose of Gabapentin and taking Cannabis for any breakthrough pain. Have you considered taking Cannabis for your pain?

    • #14959
      Barry Glaberman
      Participant

      I have thought about it, but because of being in the USA, I don’t think it is covered on Medicare. CBD oil didn’t do anything for me.  For the most part, I deal with the pain. When it gets to me, I lie down for a while till my strength builds up.

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