Viewing 7 posts - 1 through 7 (of 7 total)
  • #75573
    thoughts on therapy.

    hi

    I have been diagnosed with distal myofibrillar myopathy, and currently awaiting the results from the gene/DNA analysis, to try and be a little more detailed about which gene is involved .However ….I realise that probably will not give any detailed prognosis or timeframes to how this will progress. I have just turned 50 and this has ben very difficult for me to come to terms with.
    My condition has become considerably worse over the last 12/18 months and the notion that I will only be getting worse and worse and that there is relatively little to nothing can be done, is very difficult to live with? I have been feeling very depressed and also anxious about the future and what I will be able to do.
    while i have been trying to keep as fit and active as possible and am taking Q10 as well as Creatine along will over the counter painkillers , I was wondering if any one has gone down the line of exploring therapy/counselling, such as CBT or EMDR, psychotherapy??? if any one has I would be interested to hear their thoughts, or if anyone knows anyone specializing or working people with MD, chronic pain or degenerative diseases?
    thank you

    Frogert
    Participant
    Posts: 2
    Joined: 30/04/2015
    #96534
    Re: thoughts on therapy.

    Hello Frogart and welcome to the forum :waving:

    There are a great many people who have felt the same as you at numerous stages of their deterioration. I have had [and still do] moments where the fight seems impossible, the struggle overwhelming, and the rewards irrelevant. It is all part of human nature, I personally have not had any counselling [there was none available when I had a severe reactive depressive episode] but I do know someone who had CBT for their re-occuring depression and anxiety and it did offer them some help and insight. often it can depend on the receptiveness of the persons personality.

    Pain is always a debilitating thing – we have one or two threads already about pain management and chronic pain issues, try using the search function in the top right hand corner [just below the login/nut button].

    We learn how to soldier on, we learn when to be stubborn and belligerent, and we learn that we have to live within our limits but we do learn to live, we are adaptable creatures.

    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
    #96535
    Re: thoughts on therapy.

    Hi Frogert
    Welcome to the forum. In Dorset we have a website called My health My way. It is an NHS initiative so I presume that it is nationwide. I haven’t looked at it myself but it may be helpful to you. Have you chatted to your care adviser? She may be able to help. I am very interested in Complimentary therapies and have found Emotional Freedom Technique to be very helpful. If you would like to know more you can PM me or just google it and see what you think.

    How do you find the Creatine? It has been suggested to me but I haven’t got round to getting it yet.
    Best wishes
    Val

    Valerie
    Participant
    Posts: 166
    Joined: 15/09/2010
    #96536
    Re: thoughts on therapy.

    Hi, I too have a progressive myopathy. I had counselling and CBT through work before I had to retire with ill health. It was really helpful for me, it helped me come to a place of acceptance of where my life is now and helped me stop striving for a non-existant cure. I have been much better mentally since (despite physically deteriorating) and I feel able to live a fulfilling life despite lifes considerably limitations. Often your GP can refer you, and many places have specific health psycologists.

    Barbara_D
    Participant
    Posts: 6
    Joined: 23/03/2015
    #96537
    Re: thoughts on therapy.

    thanks for your feed back, its good to get some perspective on things ,and that I have to see this as part of the journey ,however up and down it is going to get?

    Val – thanks for the EFT suggestion ,I’m always looking for alternative ways to help ,it looks very interesting ,do you just practice by yourself or have you had session with a trained facilitator, if so, can you recommend any one?
    as for the Creatine , I think it helps, not sure how much it help with the pain but I feel it gives me a little more strength and stamina, I take it everyday in the morning and try and take it after I have done anything strenuous (when I remember to or am at home to take it) I started off with capsules but have moved on to powder as it is a lot cheaper and just as simple , I don’t know how much is a placebo effect , and it is so hard to gauge the effect as there always seems to be so many other :weather ,mood , stress , etc

    was also wondering about diet , is there anything that people know that make things worse ?

    I am glad that I have taken the plunge…. this is the first forum for me so still new to the game , but it has also made me realise that this is not going away , and I will need places like this from now on ! maybe one day I will be able to help someone else on there Journey?

    Frogert
    Participant
    Posts: 2
    Joined: 30/04/2015
    #96538
    Re: thoughts on therapy.

    hi
    just a brief reply from me, I do think counselling can be very helpful.. I also wondered if you might look into mindfulness, there is a great book called ‘living well with pain and illness’, and a course called ‘breathworks’ (which you can find on the internet).

    amaladhi
    Participant
    Posts: 7
    Joined: 22/05/2015
    #96539
    Re: thoughts on therapy.

    Hi Frogert
    I tend to just use the EFT at home by myself. I have been to a couple of talks about it which were helpful but I had to have a positive experience of it for myself before I believed in it. I got a lot from the internet. Try looking at http://www.thetappingsolution.com which is what I used.
    I will definitely look into the Creatine but as you say there are so many things that affect our well being it is hard to know what is actually helping. The weather really affects me.
    Hope you find something that helps. Let us know how you get on.

    Val

    Valerie
    Participant
    Posts: 166
    Joined: 15/09/2010
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