Viewing 11 posts - 1 through 11 (of 11 total)
  • #74174
    Leg Pain

    My boyfreind has MD but the doctors don’t know what type. He stopped walking at about 8 and now uses a wheelchair all the time. His arm muscles are weaking but not as fast as his legs did. Also he has leg pain that brings him to tears. The family doctor prescribed him pain meds but they don’t work usually. The doctors at Duke Unv. say that he’s not supposed to have leg pain. So my question is, is he the only one with leg pains?

    -Miranda

    medwards709
    Participant
    Posts: 3
    Joined: 05/01/2012
    #83937
    Re: Leg Pain

    Hi Miranda

    I am not a medical expert but I have heard of people having leg pain with MD. I have Congenital MD and from time to time, usually if I have been in one position too long and my joints are stiff I get pain. Also, my calves throb and are tender to touch a lot of the time.

    Whereabouts do you live? Are you in the UK? it must be extremely frustrating if the doctors are not taking your boyfriend’s pain seriously. Some of our members have discussed attending pain management clinics, perhaps others will share their experiences.

    Welcome to the forum :)

    Sarah

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #83938
    Re: Leg Pain

    Im the boyfriend, and we live in the US, the legs pains are horrible, and everytime id ask the doctor theyd look at me like i wascrazy, thank you for letting me know that im not the only one. My calfs and basically all down my legs just throb so bad at times, im glad i found this website ill be up here alot :)

    daylonjones1
    Participant
    Posts: 2
    Joined: 05/01/2012
    #83939
    Re: Leg Pain

    Hi Miranda and boyfriend,

    Sorry you are having such troubles. This does sound bad.

    Strange you did not get more replies but this is a bit of a quiet time for the
    site. I do remember several people posting about leg pains.

    I have posted about symmetrical arm and leg pains but mine is much
    worse in arms.

    The only thing we are sure of is that there is a lot of variation and
    confusion. Welcome to the Forum.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #83940
    Re: Leg Pain

    Hi

    I have Emery-Dreifuss M.D and i get a lot of leg pain. I have been taking pain meds for years…..4 different ones four times a day. Sometimes it doesnt have much effect if i am having bad days. Recently I have had to increase one of the meds for nerve pain as i am getting lots of pain and tingling in feet, legs and hands.

    I am sorry to hear you are not being taken seriously…dont give up, keep going, i hope they start listening to you :)

    I am in UK

    cornishpixie99
    Participant
    Posts: 6
    Joined: 05/11/2010
    #83941
    Re: Leg Pain

    Thank you very much for letting us know about this :) We recently went back to the MD clinic and they said the same thing, that we have never seen leg pains in MD patients. :| I think it would help if they could finally figure out what type he and his brother have. The cardiologist said she looked back at his records and it is some type of Sarcoglycan Hybrid they have never seen before.

    medwards709
    Participant
    Posts: 3
    Joined: 05/01/2012
    #83942
    Re: Leg Pain

    Im who this is refferring to and im to the point where im taking pain pills just to make it thru the day really. They hurt so bad and i cant find anything to make them feel better or even tolerable idk what to do, ive tried everything

    daylonjones1
    Participant
    Posts: 2
    Joined: 05/01/2012
    #83943
    Re: Leg Pain

    @daylonjones1 wrote:

    Im who this is refferring to and im to the point where im taking pain pills just to make it thru the day really. They hurt so bad and i cant find anything to make them feel better or even tolerable idk what to do, ive tried everything

    Speak to you gp, discuss with them whether you would benefit from something like the circulation booster devices that are available [and if you are eligible you can get them VAT free], maybe a tens machine would be advantageous for pain control if you do not want to keep taking chemicals.

    Sadly, it is going to be persistence that gets results.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    #83944
    Re: Leg Pain

    i have had leg pain for years ..i thought it was to do with my hip but i had an MRI scan last year that found i had a prolpse disc in my back and so the pain radiated down my right leg …it might be advisable to ask for a scan to rule this out . I am having an injection into that joint in a couple of weeks so will let you know how it goes

    rachelmurphy
    Participant
    Posts: 65
    Joined: 02/02/2011
    #83945
    Re: Leg Pain

    Hi, I’ve not been on here for a while but just seen your post. My sister and I have Limb Girdle Muscular Dystrophy type 1C and suffer from chronic pain, the worst pain is in our thighs and calves but also upper arms , shoulders, bottom. It is horrific, I personally have tried everything available to me through Pain Clinics, this includes, Tens machine, hypnotherapy, acupuncture, Sympathetic Nerve Block injection, lidocaine infusion, Gabapentin, Pregabalin, Morphine Sulphate, Dihidrocodine, Amytriptyline, Duloxetine to name a few!! I have been attending the Pain Clinic for 5 years and have recently been discharged because their words ” they can’t do anything else for me.” I felt like I was abandoned and told to get on with it. I have pain 24/7, I don’t have any pleasure in anything that I do, I can’t sit comfortable to watch TV or read, go to the cinema or out in the car or out for a meal because I have to keep shuffling, standing up , sitting down, moving from one bum cheek then to the other, I have had to finish working, now need my husband to care for me, I am so frustrated, I just want my old like back.

    missmolly
    Participant
    Posts: 3
    Joined: 28/09/2010
    #83946
    Re: Leg Pain

    @missmolly wrote:

    …….. I have pain 24/7, I don’t have any pleasure in anything that I do, I can’t sit comfortable to watch TV or read, go to the cinema or out in the car or out for a meal because I have to keep shuffling, standing up , sitting down, moving from one bum cheek then to the other, I have had to finish working, now need my husband to care for me, I am so frustrated, I just want my old like back……..

    Sorry you are having these problems.

    Wish there was a “back” button in life like there is on the computer.

    Just not fair.

    Thanks for posting, hope you somehow have some luck.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
Viewing 11 posts - 1 through 11 (of 11 total)

You must be logged in to reply to this topic.

Keep in touch