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Constant pain with no answers
Luckyst4r
Member Posts: 1 Listener
Hello,
I am a long term sufferer of pain. In that as a tall person (6ft 10") I have always (since childhood) had constant pain from my neck, throughout my back and shoulders. This was put down to growing pains long after I stopped growing.
About 5 years ago though it noticeably got worse and with no trigger. I am constantly kept awake with pain in my arms and hands, and have lost significant strength in both arms, to the point where at my worst I cannot even lift a full mug. Usage of tools (screwdrivers for example) cause massive shooting pains to go up my hands as I clamp the tool. Driving can also be an issue.
So, I've been referred by my GP, lots of MRI scans, other tests, answered questions in repetition and no answer. No confirmation of anything.
As a single parent I am completely relied upon, and it's getting to the point where I may well have to stop working (I am under 45) and it feels as if everything around me will fall apart.
Replies
Scope community team
Good to meet you and welcome to the community. I am sorry to read that you are coping with a lot of pain at the moment. I'm not medically trained so I am unable to offer any kind of diagnosis but I can suggest looking at our Chronic Pain discussions. Some of our members may have experienced something similar. We also have an Ask a chronic pain advisor discussion.
Specialist Information Officer - Cerebral Palsy
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I also struggle as a long time sufferer of pain throughout ,back neck feet hands etc and seen various specialist over the years. Now at 69 have got used to some of the buncum answers through the revolving doors that the NHS has now become.
Different diagnosis by different drs for the same complaint .
Like you I am now having problems gripping and lifting.
Back last year after x-rays on hip joints and hands .( I have chronic OA and gout) it took longer than expected to get results back.
Hips ok but it was found that I have diffuse idiopathic skeletal hyperostosis (dish or forrestiers disease)Rare but which explains a lot of the pain and stiffness .
My physiotherapist knows more about it than the drs in my practice ,mostly locums who have never heard of it without looking online.
Recommend swimming and heat ,which possibly you also may have been told ?
Going though the process of getting a referral but getting a specialist in the UK seems to be a problem.
I've been through the pip route with lots of advice on this and other forums and have been awarded enhanced on both sections .
Whilst it doesn't help the pain it affords me the freedom to afford things that can help alleviate it.
I wish you well on your journey to a successful diagnosis
Sorry for a longer post
Cheers
Gizmo
I am sorry to hear that.