new to peripheral neuropathy

[Esme2007]

Hi I’m new to having the awful symptoms of what I think are peripheral neuropathy. I had a big operation in September resulting in a high output ileostomy. This will be reversed back to a colostomy in the near future. It left me losing electrolytes and becoming very unwell in October.

I am on Iv magnesium three times a week at home .

I started in February with numb hands, pins and needles, burning sensation, in my thumb and two fingers and part of my ring finger . I went to my gp who has referred me to neurology ( I am having tests done on 20th June.)

I have now started with pins and needles in my toes and slight pain in my feet . My gp thought my hand symptoms were carpal tunnel which I know is the large nerve being affected by cartilage etc.

I will find out exactly what is wrong following my tests . My vit B 12 was okay and they will test again in 3 weeks.

I’ve been on here for restless legs and after taking 150 mg of pregabalin that has actually gone . Thank goodness as it was horrendous. I’d had it since a child . I wear splints on my hands/wrists at night - I can’t do without them …. Especially my left arm . The pain goes right up . I have woke crying out in pain. It’s awful.

I have to take 60mg of codeine 4x a day to thicken my stoma output. I cannot have any more painkillers.

Can anyone tell me of their experience of this condition - their symptoms etc and how they have managed and really just ‘coped’ with it, especially at night. Any advice would be greatly appreciated.

I’m a complex case but this on top of everything else is making me do down and anxious.

many thanks .

[mariootsi]

It is horrendous. I have been to many doctors. Nothing helps me!

[Totheriver]

So sorry to hear you are going through all this.💕

[Esperanto]

If there is a relationship with potential nutritional deficiencies after your surgery, given the PN issues, I would definitely recommend getting your B12 and B9 levels checked, as well as your B6 and B2 levels. It is still not a standard procedure to do so, but from personal experience, I can say that it can be crucial for the development of PN to have these tested!

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