-
Becker Muscular Dystrophy
I was diagnosed with becker muscular dysstrpophy about 15 yaers ago . At that time only my legs were affected .Recently my upper body has become more affected. I have recently been suffering new symptoms . I usually sleep in a hospital bed and recently started to wake up aching down my left side from knee to neck and suffering a severe headaches that last for most of the day . now i have difficulty sleeping at all even with the aid of sleeping pills . My GP and local hospital cannot find what is causing these symptoms . Am i alone with these problems or are there others out there
Re: Becker Muscular DystrophyI feel reasonably confident that there are others out there with sleep issues similar to your own.
I often have neck aces when I wake that can move into a headache and usually it is an indicator that my pillows need rearranging.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: Becker Muscular DystrophyHi, I also wake up with neck and more often backache. The side that aches is the opposite side to the one I lay on. I find that it is better the more I alter position in the night but of course this means I am not sleeping straight through. Do you have a pressure care mattress/pillow?
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: Becker Muscular DystrophyHi, Yes I struggle a lot with pain being my worst symptom. I have an undaignosed form of LGMD (we think), am 45, and reasonably mobile but I’m in constant severe pain from waking till I go to bed. I’ve tried quite a few different matresses and pillow but they make no difference. I also get bad headaches every day and migraines about twice a week. The worst of the pain is in the front and side of my right neck and head and eyes. It’s an ongoing nightmare, but I keep looking for answers.
My latest attempt to help it is going to be a stellate ganglion block when the appointment comes through. I’ll write and let you know how I get on with it.
Good luck,
MichaelRe: Becker Muscular Dystrophy@yttocssap wrote:
I was diagnosed with becker muscular dysstrpophy about 15 yaers ago . At that time only my legs were affected .Recently my upper body has become more affected. I have recently been suffering new symptoms . I usually sleep in a hospital bed and recently started to wake up aching down my left side from knee to neck and suffering a severe headaches that last for most of the day . now i have difficulty sleeping at all even with the aid of sleeping pills . My GP and local hospital cannot find what is causing these symptoms . Am i alone with these problems or are there others out there
Welcome to the forum.
Sorry you are having such problems.
We have had several threads with people having such problems and trying different sleeping positions and the problems
of sleeping and different medications. Fair to say there has not been one exact answer and a lot of trial and error and
mixed results.
There are pressure matresses and a whole range of different orthopaedic and now memory foam options. Some
are trying Memory Foam Matress Topper again with mixed results."Even if you are not paranoid, it does not mean they are not out to get you!".
Re: Becker Muscular Dystrophy@michaelmcd20 wrote:
It’s an ongoing nightmare, but I keep looking for answers.
My latest attempt to help it is going to be a stellate ganglion block when the appointment comes through. I’ll write and let you know how I get on with it. Good luck, MichaelThis is a common situation.
They tried the ganglion block on me back in 2005. No result at all and straight back to
the Pain Management Clinic. But other people it did help so I hope you will be one of those.Just like the TENS machine works for some not for others.
"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: Becker Muscular DystrophyHi Taungfox,
Thanks for letting me know about your experience of the stellate ganglion block. I’ll keep my fingers crossed that I’m one of the lucky ones.
MichaelRe: Becker Muscular Dystrophy@michaelmcd20 wrote:
your experience of the stellate ganglion block.
MichaelSorry, should have said, I remember worrying a lot about them going
anywhere near the neck.Do not worry, the proceedure itself is simple, quick and nothing at all
to worry about."Even if you are not paranoid, it does not mean they are not out to get you!".
Re: Becker Muscular DystrophyI too have Becker MD. When i get up, i am like the tin man in “The Wizard of Oz”. It takes me a few hours before i can even bend down to the bathroom sink to wash.
You must be logged in to reply to this topic.