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  • #192501
    PLEASE HELP ME!!!

    Hello
    I was diagnosed with fsh when I was 7 I am now 27 and growing up I was always encouraged to make decisions when it came to treatments and help regards my condition. My teens where a little tough regards my funny walk and shoulders “collapsing” and as the pain got more and more intense I turned to illicit drugs to help numb my body. Having been clean 4 years 7 months I feel every single bit of pain and always managed but over the past 6 months I’ve spent more time in bed than out of it because the pain in my legs and hands is horrendous and I am now at my wits end! Doctors will only prescribe me paracetamol and ibuprofen and they don’t do a thing! Any help or advice will be greatly accepted right now. The pain has me in tears and it is stopping me seeing my children. My cravings for diazepam and cocaine are through the roof but I can’t go back. Please help me

    Kurt cj hulme
    Participant
    Posts: 0
    Joined: 07/02/2021
    #192502
    Reply To: PLEASE HELP ME!!!

    Hello and welcome to the forum. There is much out there than can help you. I have FSH. I was diagnosed when I was around 50, and like you, have pain everywhere. It was a struggle for me to find something that worked, but eventually I have found peace with pain mostly at the back of my mind. The key, which you do not seem to have, was having a GP, that helped, and listened to me. If there was a pain killer made then I have tried it. That is also the other key. What works for me may not work for you. BUT the only way forward is through a pain specialist, and possibly a new GP, one that is willing to help, and not one that fails in their duty of care towards you. I would also suggest a third key, which I am sure you are using already, and that is persistance.Do not accept no for an answer, keep asking, keep pestering, keep researching and passing it on. Also, please be aware, that long term use of Ibuprofen can be extremely damaging. I should know it helped create a near fatal perforation of my bowel some years ago. Long term use of the likes of tramadol is addictive and must be taken with care.
    If you can please do come back with some more info, so we can perhaps help more. Where are you based, broadly? Do you work? What is your mobility like? are you receiving neurology help? Are you getting physio?

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #192503
    Reply To: PLEASE HELP ME!!!

    Hi Mike
    I have always dealt with pain as the same way you do ie back of the mind since being sober. But the pain I have right now I have never had it like this before. My father doesn’t understand how it is so bad as he’s never had the symptoms I have (he is a sufferer too). I’m very active normally but the past six months have been a struggle, I cannot work at the moment I was made redundant 10 months ago but I do fill my time doing voluntary work around my area. I called nhs24 an hour after posting this post and was taken to hospital where I was given codeine but due to the way my body reacts to them I can’t get a prescription for them. I have really hot baths every six hours and my central heating is on full but I cannot shake this pain and I’m struggling to even get to the loo. I don’t have help from neurologist doctors at the moment due to moving home and to be honest they have not really been any help in the past. Thanks for your time

    Kurt cj hulme
    Participant
    Posts: 0
    Joined: 07/02/2021
    #192506
    Reply To: PLEASE HELP ME!!!

    I can understand the pain you have. Without pain killers I am curled in a ball, unable to move and hoping the ground will swallow me upThe only pain worse has been my perforated bowel. You really do need to see a pain specialist. They have the expertise to deal with the problems you are facing, and give you back some semblance of life. I can see from what you have said that you are very determined, and I guess within that determination is a desire to get back to work. You will not be able to keep a job when you find a new one if oyu pain remains this bad. Please do get referred somehow, and please keep us up to date with your progress.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #192510
    Reply To: PLEASE HELP ME!!!

    Hi, so sorry to hear you are going through this. It can be a real fight to get the support we need but please do stick with it. Whereabouts in the UK are you? I’m just wondering if there are any muscle centres near you? Or maybe a regional care adviser can give you some support and info to give to your GP. If you’d rather not say on here, feel free to send me a PM.

    I agree with Mike, a referral to a pain management clinic or a neurologist with expertise would be a good step.

    Hope you get the help you need.

    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
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