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    • #12219

      Muscular dystrophy affects every part of the body. Understanding muscular dystrophy pain versus other pain from something else can be tricky. Do not ignore pain, your body is trying to send you a message that something is wrong.

      How do you define and identify pain from muscular dystrophy? Have you had any assessments from specialist how to manage daily pain caused by MD?  How have you tried to manage your pain yourself, without medicine?  What pain do you have from your muscular dystrophy that affects your routine?

      Personally, when I go to class, which can be 3 hours long, I find my shoulders, neck, and lower back start to hurt because I don’t have a strong core. I slouch, then lean and eventually just suffer through or if we get out early I go home and have to lay down. I do not want to get a shoulder support because I don’t want my body to become to reliant and weaker from it. I think if I could have one that easily comes on and off for me then I would use in time of serious pain or if I need a break.

       

    • #12303
      Licorice
      Participant

      Has anyone had success making themselves comfy on a couch? We have an adjustable one, that is too deep for me, at 5’0”. We should never have bought it

      We have a setup of cushions and pillows  that doesn’t work for me at all. Besides being short, I have lordosis from the MD, weak ab and neck muscles.  Our current setup ends up with me leaning to the side, and more.

      My dream would be some thing(s) that fill in my lordosis, forces or encourages me to sit up, etc. This has been a major bummer for us; after I spend a short time on the couch, I head for the bed for relief. Not good for our relationship!

      ANY advice on this subject would be SO appreciated!

       

      • #12320

        Hey Barbara,

        It is kind of a nightmare going over to friends and families homes when I know their couches are not accessible. I personally don’t sit on any furniture unless I am confident I can get out of it. I have gotten stuck so many times on couches and chairs and have hurt myself in the process of trying to get up. Now a days I prefer to stay in my wheelchair or if I have to sit on my walker which has a high seat, I tend to get uncomfortable quickly with the walker.

        I have two Cat napper recliners which stand up for me when I am seated, I wish every home could have one.  CAT NAPPER ON AMAZON

    • #12324
      Licorice
      Participant

      Hi Dani, The Amazon reviews for that particular Cat Napper mostly comment on its large size; I’m 5’0”! Thank you anyway.

    • #12553
      Tracy Barhite
      Participant

      I also have discomfort from MD.   Although it’s not everyday.   Most of the time it’s around my neck or shoulders.  I have also experienced soreness or cramping in my lower legs.   I find that doing some stretching helps, also not overdoing any activity.   I have had to learn to take a break and rest.

    • #12559
      Tracy Barhite
      Participant

      I agree!   You have to plan out what you’re going to do and on what day to avoid burn out .  Lol I still have trouble with that too!

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