Life after transplant

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This topic contains 2 replies, has 2 voices, and was last updated by  cornyguy 3 years, 10 months ago.

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  • #141252

    cornyguy
    Participant

    Diagnosed 2018, had trial treatment, then different treatment followed by transplant in December. Obv knew it wasn’t going to be a walk in the park, but the level of pain that is stopping me from moving forward. Had mri last month which didn’t show any real issues that could be causing this.
    With the virus causing the appt system to be a totally different experience for us all, do I contact my specialist at the hospital or should I be talking to my GP as I’m not sure if the problem is to do with my myeloma or whether it’s a new condition that needs different treatment.
    I realise I’m in the older category for this treatment and new I wouldn’t be able to run a marathon but, life at the moment seems to be limping from one painful area to another, and I suppose I just need reassurance that maybe this is my new “normal” and I’ve just got to get on with it. I’m taking tramadol and paracetamol which don’t seem to be effective for any length of time.

    #141257

    mark-j-underwood
    Participant

    It could be either just peripheral neuropathy or fibromyalgia. In fact I have both post 2nd SCT and it’s a life of daily pain and inability to move about a great deal at times.

    As well as widespread pain, people with fibromyalgia may also have:

    increased sensitivity to pain
    extreme tiredness (fatigue)
    muscle stiffness
    difficulty sleeping
    problems with mental processes (known as “fibro-fog”), such as problems with memory and concentration
    headaches
    irritable bowel syndrome (IBS), a digestive condition that causes stomach pain and bloating

    Considering the obvious discomfort that you are in, you need to speak to your Consultant or key worker as a matter of urgency to talk about diagnosis and possible treatment. There is no medical test or actual treatment for fibromyalgia, just a chat with a specialist who will ask some questions. Fibromyalgia isn’t uncommon after either a major trauma or medical treatment.

    On the treatment side there are things that can help, but sadly having tried most of them they just lessen the pain and stiffness. Also get them to check your scans for signs of arthritis and perhaps a blood test for raumatoid arthritis, which isn’t the same as arthritis, but a closer cousin of Myeloma. At the very least you appear to need input from the hospital, diagnosis and perhaps referral to the pain management clinic.

    #141258

    cornyguy
    Participant

    Hi Mark and thanks for responding. These are quite confusing times for me (and everyone else obviously), but think that maybe I do have something else going on which in normal circumstances would have been picked up during a routine check. I will definitely ask about the fibromyalgia suggestion when I next see/speak to her.

    In the meantime I’m preparing myself to move forward by actually thinking ahead of the movement, actually thinking “I am about to move forward so legs start to move) and I most definitely am not shuffling on the spot as much as I did. I dont know, is it a more mental problem, I’m hoping that by the time of my next appointment things will have improved some.

    I do find it helpful to know that to a degree all of this a normal part of recovery and that it’s just my impatience that is the biggest issue.

    I can only imagine how difficult life is with the added problem of fibromyalgia, and 2 stem cell transplants – and I thank you again for taking the time to respond, and wish you well with you recovery and treatment. Kind regards Neil

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