Chronic weakness, pains, neuropathy in hands/arms feet 5 years — Scope | Disability forum
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Chronic weakness, pains, neuropathy in hands/arms feet 5 years

Bobo1234
Bobo1234 Community member Posts: 1 Listener
Hello everyone, I hope you are all doing well and surviving. I am male, 37 now. I would like to ask for some assistance in trying to understand what I have from the forum.  I went to sleep one day just like any other day from working quite vigoureslly with my hands (I created items from plaster of paris and pushed them out of moulds, in between the drying i was playing a demanding game on my Nintendo switch) and woke up the next day with a severe tingling and neuropathy in both my hands. Since then it has only progressed and gotten worse. I have tried almost everything and along with the NHS help and private care I am still the same. The only thing i was diagnosed with which was 100% was bi lateral de quevains which i had to go private to get the injections for. The NHS now doesnt listen to me, and I have no savings left, no job, can't work, etc. I have tried to following myself, via the NHS or Privately:

Ct scan all clear
MRI scan brain, spine, neck all clear minus a slight nerve misplacement in my neck but was told by the harley street doctor it was not impinged and all clear.
Injections to my cmd joints which helped a bit but all came back very quickly.
Physiotherapy (many times and many different styles)
Ultra sound of hands/wrists, all clear
X ray of hands/wrists, all clear
full blood tests, all clear but seems i have high glucose and noticed in my numerous blood tests (possibly diabetic has come up) I monitor my sugar levels and eat in pre diabetic terms.
splints,  medicines, creams,
carpal tunnel injection, did nothing.
Different diets, nothing
talking therpaies including self help books on pain management etc.
Thumb ultra sounds which physio but all clear.
Injections in both my arms only with anastethic to see if it helped my condition (it did not) and if it did i would have a operation to make more space for the nerves.

I have been like this for 5 years now, severe weakness in arms hands, pains especially in thumbs, neuropathy, like my skin is burning all bilateral which recently progresed into my feet. I am on codiene, duloxetine and naproxen but they help rarley. I have thought of suicide many times due to this horrible condition. I have tried my utmost best to learn to live with it, but when you can't do anything such as even hold a phone it's very hard to forget and move on. I was sent to the pain clinic as a last resort but they were awful and i simply walked out after one of them was super rude.

My apologies for this long winded text, I promise i kept it as short as possible. Thanking you all in advance and I hope if you are struggling you find peace and get better.




Comments

  • chiarieds
    chiarieds Community member Posts: 16,102 Disability Gamechanger
    Hi @Bobo1234 - welcome to the community, & thank you for joining telling us a little about yourself. I'm sorry to read you have De Quervains & nothing so far seems to have given you any relief.
    i must admit I've been through similar things such as injections & splints, but have found that it's often a combination of things that helps such as exercise, medication, & distraction etc for my neuropathic pain.
    There may be something in this post that you haven't tried, which may help: https://forum.scope.org.uk/discussion/102784/resources-and-tips-for-those-living-with-chronic-pain so I hope you have a look through the different resources.
    I also wonder if you've looked to see if you may be able to get some benefits such as PIP (Personal Independence Payment). Try this benefits calculator to see: https://benefits-calculator.turn2us.org.uk/survey/1/c3cdba64-9664-4bda-9cdd-d4e511651146
    Please also join in with the various chats & discussions, as I'm sure you'll find everyone here friendly & supportive.


  • Rosie_Scope
    Rosie_Scope Posts: 2,177 Scope online community team
    This all sounds really difficult @Bobo1234, sorry you've been through so much and haven't found many answers so far. I'm afraid I don't have a similar condition, so I haven't got any advice to offer, but I have been through similar struggles while fighting for diagnoses so I can understand how incredibly frustrating it can be.

    My colleague Adrian sent you an email, did you manage to have a read through at all? How are things going for you today?

    I hope we can at least offer some support and distraction for you :)
    Rosie (she/her)

    Online Community Coordinator @ Scope

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  • Shazza1
    Shazza1 Community member Posts: 49 Connected
    Hi @Bobo1234 sorry to hear what you are going through. Have they considered the possibility of  peripheral neuropathy? And could be small fibre possibly.

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