Central pain syndrome/prominent pain syndrome

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  • #47472
    Michelle
    Participant

    Central pain syndrome/prominent pain syndrome

    Hi everyone, has anyone else been diagnosed with the above. I would love to have someone else to talk about it with especially since mine is spreading through my body. Thank you

    • This topic was modified 1 week, 2 days ago by Michelle. Reason: Missed heading
    #47474
    Lc
    Participant

    Hi Michelle, basically what your saying is the same, but known as CRPS cronic reginal pain syndrome, I have this as do many others on here, and its poorly understood, normally happens after injury, but can happen with unexplained cause. also varies from mild to horrendous incapacity, mine started after my second spinal op in one year and fractured dislocated pelvis, but now have nerve damage/pain, arthritis and SI Joint problems on top.
    Pain is pain and everyone experiences it differently and what meds and alternative therapy works for me doesn’t mean it works for anyone else, it’s a case of finding which meds and alternative therapy works for you best. but do understand what your going through, although mine isn’t spreading through my body. maybe you need to see a neuro specialist. but basically it your nerves are working overtime and dont shut off, when after an injury has healed it can last years or sometimes less, nobody really knows. so if you have not injured yourself,or even if you have, then i would recommend further investigation into what may have started this. as it could be something else that has triggered it off. but some people just get it and never get a diagnosis,of why
    Any way your in the right place to talk about it with people who do understand with empathy, and your not alone. take care and best wishes, Lee

    #47475
    Michelle
    Participant

    Hello and thank you for your reply. I am under the neuro’ s and have been for two years now but even they don’t explain why this all happens they just know it does and the saying of “your brain is sending the wrong signals etc” doesn’t really satisfy you when you are in so much pain. The drugs prescribed are also very heavy duty and come with all sorts of problems too. It’s a minefield really! NFD is a title saying we don’t really know what is wrong with you and that causes almost as much upset as the pain too. Vicious circle isn’t it especially when you are looking for answers that aren’t there at the moment.

    #47476
    Lc
    Participant

    Hi Michelle, basically it is your brain that’s sending wrong signals, like when something is hot or you hurt yourself, brain sends signals as a warning that hurts get away from it, but sometimes these signals get broken like in a lot of people the pain signals keep firing that it hurts and dont shut off, so we have to learn a very difficult process saying that there is no damage ,it’s been fixed, as in my case ,but it still happens as i’ve said above no-one is sure why. and in some other people like yourself, there is /cannot seem to find an explanation why it happens.
    It does cause a lot of worry and frustration to yourself especially if there is no cause for it to happen. also you do find yourself going round in circles,trying to find what is wrong, you may never get an answer, so the best thing is accept that this is how you are at the moment and get help in finding the right meds to control the pain as best you can and get help for your mental state too as long term pain can over time cause depression/anxiety. best thing is get referred to a pain clinic to help with meds and maybe try CBT and Mindfulness for your mental health, this is what helped me. also find a hobby that you can manage to do like a lot of us on here do art/crafts to help as a distraction method. I also use a Tens machine that helps with my breakthrough nerve pain rather than upping the meds it does’t take the pain away but I find it masks it quite well so you can carry on.
    also at top of page in blue the are links to Pain Relief and also Resources there is a bit about relationships which might be helpful.or browse the shop which there are some relaxtion/meditation CD’s that might help. Take care and best wishes, Lee

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