Brother with DMD struggling to sleep due to pain and unable to move

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  • #192371
    Brother with DMD struggling to sleep due to pain and unable to move

    Hi,

    My Brother is not sleeping much due to pain on the legs and body and unable to move during the night.

    Is there something that he could take or we can do to help him sleep?

    Thank you

    Doni
    Participant
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    Joined: 31/01/2021
    #192372
    Reply To: Brother with DMD struggling to sleep due to pain and unable to move

    Hello and welcome to the forum. There is indeed much that can be done to help. Many of us, experience pain in one form or another. I have FHSD and for me it is one of the primary symptoms. But it will take specialist help in the form of your local pain clliic consultant. AS ever, I would aks if you can tell us what sort of help he has been getting? Is he already seeing a pain specialist? What medication, if any, is he taking to help with the pain? Is he using anything like a heat mat, electric blanket etc., to help pain relief?

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #192373
    Reply To: Brother with DMD struggling to sleep due to pain and unable to move

    Hi Mike,

    Thank you for the reply.

    He is based in Albania and unfortunately the doctors over there don’t know much about DMD and he has never had any real treatment or prescription and the only thing they keep giving him is vitamin pills which I guess help him survive as he doesn’t eat much at all.

    There is no such as pain specialist or local pain clinic over there, but the local doctor says that there isn’t much that they can do to help.

    Didn’t know that electric blanket helps, will get one ASAP and send it over to him.

    Thank you

    Doni
    Participant
    Posts: 0
    Joined: 31/01/2021
    #192376
    Reply To: Brother with DMD struggling to sleep due to pain and unable to move

    Thank you for that it does clarify things a lot. Heat makes a huge difference to me. I have a heat pad in my chair and as I said I use an electric blanket. It is clear that he does need some form of pain relief, and more than you get with paracetamol. Over here there are so many to choose from including Tegretol, Carbamazapine, Tramadol, Codeine, and many more. They are only available via prescription of course as they can be very problematic in the wrong place. Have you managed to get any information to his doctor about his condition. I have found most medics over here, and in the US (where I have some experience) are relatively uninformed about MD, so perhaps some education materials might help there.
    The humble ot water bottle may also be very useful.
    Might I also ask if the pain is “true” pain or is it restless legs. The latter is certainly associated with some types of MD, and is very distressing, some might describe it as pain.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #192377
    Reply To: Brother with DMD struggling to sleep due to pain and unable to move

    Hi Mike,

    Thank you for the advice.

    Doni
    Participant
    Posts: 0
    Joined: 31/01/2021
    #192382
    Reply To: Brother with DMD struggling to sleep due to pain and unable to move

    I find electric blanket and hot water bottles very useful for certain types of pain and cold weather. There is a danger though of heating up to fast and causing what we call in UK “Chill Blaine’s” its a red mottled pattern on legs hands or feet when someone with poor circulation heats up too fast or cant move themselves enough out a directed heat like a fire too close to legs, heat pad/blanket or electric blanket. This can cause pain that can last few hours or days.

    How’s his positioning in bed? Supporting with pillows could help take off points of strain. A air mattress could help also and would limit bed pressure sores. A hospital type bed could let him sleep in a more sitting up position to relive aches.

    I have some movement but still require to be physically turned and repositioned by family. You could maybe look at how often he’s turned and repositioned. When my leg pain is bad I have them massaged to encourage the even flow of circulation.

    I don’t know if it would be available in Albania but there is systems you can put under a foam mattress to aid turning. Some come with remotes for you to self turn as you require where others are a set turn every 15 mins. (vikta Komfi tilt or Toto turning systems)

    If its a electric shock type pain this is very common in muscle conditions and also could be a form of sciatic of his back. Better positioning, turns and massage might help. Also be sure he’s well hydrated during the day as the more dehydrated you are the more chance of the leg shocks and spasms will be. Diabetes is also common in DMD and causes peripheral neuropathy.

    """""""What doesn't kill you makes you stronger""""""

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #192401
    Reply To: Brother with DMD struggling to sleep due to pain and unable to move

    Hi Cat,

    Thank you for the information.

    Doni
    Participant
    Posts: 0
    Joined: 31/01/2021
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