Viewing 6 posts - 1 through 6 (of 6 total)
  • #194398
    Manifesting carrier. God the pain is relentless!

    Any other manifesting carriers feel like your muscles and joints are on fire? What helps for you. Need come off long term Tramadol use and I don’t know how I manage as a single mother in excruciating pain all the time doing that. Ouch. Help.

    Kitty

    Excuse any grammar mistakes

    Proof reading? Never hear of her

    I have autism so my responses might be baffling, I'm not sorry

    Kittycadabra Kittycadabra
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    Joined: 03/05/2021
    #194400
    Reply To: Manifesting carrier. God the pain is relentless!

    Some carriers are also mildly effected, what type of MD are you a carrier for.

    How was you confirmed as a carrier, by dna test?

    Maybe best visit your gp to get other tests carried out to confirm if you are effected

    Joe
    Participant
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    Joined: 01/01/2020
    #194401
    Reply To: Manifesting carrier. God the pain is relentless!

    I was formally diagnosed as a manifesting carrier of Duchenne after my son was diagnosed with Duchenne, I’m just enquiring about pain relief, manifesting carriers can manifest symptoms quite severely in some cases including debilitating muscle pain. I have seen many doctors, thankyou : )

    Kitty

    Excuse any grammar mistakes

    Proof reading? Never hear of her

    I have autism so my responses might be baffling, I'm not sorry

    Kittycadabra Kittycadabra
    Participant
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    Joined: 03/05/2021
    #194404
    Reply To: Manifesting carrier. God the pain is relentless!

    I have been in very much a similar position. My son was diagnosed with FHSD and I was told I was a carrier. All was well for many years until the FHSD came out and I am now much worse than he. Pain everywhere, and I do mean everywhere, and a whole lot of pills etc to help. However, it was not until I saw a pain consultant that I started to get things under control. It is something I did after I was forced to go ‘cold turkey’ coming off Tramadol as the doctor would no longer supply it. I can vouch for the fact that that was a really hard time for me.
    You say you have seen many doctors but have you seen a pain specialist? As many will attest on here, most doctors have never seen a case of any form of MD let alone treat one, so you really do need to see a specialist in these things.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #194421
    Reply To: Manifesting carrier. God the pain is relentless!

    Thanks Mike for your well thought out answer. I was working with having more diagnostics through rheumatology, as a physio told me I shouldn’t be having the joint pain I am with dystrophy, however recent visit with a senior rheumatologist says my pain is all dystrophy where my skeletal muscles have weakened around the joint. I think now weve confirmed what’s causing it, a pain clinic could very much be my next port of call, and I am due another review with my neurologist, although he has referred me to somewhere else, and I get a feeling it’s a pain specialist as he did mention that when we last spoke. I’ve had a letter from a hospital about a referal but doesn’t state what for, hoping it’s that. In the meantime not sure what to do about it. Sometimes i just lie there unable to move through hurting so badly, and moved to tears because I’ve finally broken down. Usually I push through pain but sometimes it gets so much that I can no longer keep going, and have to lie down and give in, although I try push myself the best i can. I’ll chase up about a pain clinic, and speak with my gp about my options I’ve got coming. Thanks for your reply, will keep you all updated.

    Kitty

    Excuse any grammar mistakes

    Proof reading? Never hear of her

    I have autism so my responses might be baffling, I'm not sorry

    Kittycadabra Kittycadabra
    Participant
    Posts: 0
    Joined: 03/05/2021
    #194440
    Reply To: Manifesting carrier. God the pain is relentless!

    May I also suggest using heat. For me it has been wonderful. Either a hot bath or use a heat bad, even an electric blanket.. All have helped relieve my leg pain.
    Clearly yo are in good medical hands and you appear to be going down the route you need. Please do let us know about progress, as I am sure there will be.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
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