Clare, I sure wish mine had come about slowly?
In less than two weeks I’d gone from simply ‘tingly toes’ to absolute burning fire on my hands and legs… so bad that I had the ‘joy’ of spending time in the hospital, where I’d hope they’d test me? But, didn’t do much at all.
Honestly, and I wish I could give you a ‘cure’ here? Meds can cut some of the pain, but not much.
Since then, for other medical reasons, I have had strong opiates prescribed. They did very little for the medical reason for the new pains nor for the CIDP/PN pains at all. Only thing they do is make your brain dull so you just don’t care. IF you can get some good sleep in there? The kind with dreams, that IS a good thing. Good Sleep? Helps so much in our getting rest and getting stronger! Tho, it’s easier said than done.
To complicate things further? Some of us respond to some meds such as Neurontin or Lyrica. Some of us don’t. I suggest that you ask your doc to try other meds that mite help? Just don’t start them on a weekend! IF something goes wrong then? It’s the ER then Go to your doc Monday AM. Right. I try and start new meds on a Tuesday or Wednesday, then there’s enuf time to see if things are ‘working’ or not, and then to go from there….
It’s frustrating, no doubt about it! Keep faith in yourself and hope that some combo of meds can help and soon!
I can only agree with your pain, and hope you find other sources that help you deal with the pain. Not to mention the stress that the pain and it’s s/e’s cause. I view my pain as a brick wall…one I keep beating my head against at times, I’ve stopped doing that? Hurts the head too much! I just now look at that wall and want to spit at it! So, my alternative is to block it out or ignore it. Easier said than done? But it IS a way of coping. It’s working for me so far.
I wish you HOPE with all my heart! That you are able to find relief from somewhere. I truly do!