I know a lot has been said about neuropathy but a search hasn't quite answered my question so here goes.
quick medical summary:
type 1 diabetic for 10 years,
peripheral neuropathy (in feet) for about 4 years (burning sensation, pins and needles, especially bad at night, treated with amyltriptyline)
Severe episodes of depression
Blood sugar control can only be described as terrible, I've moved around alot, switched doctors/hospitals/consultants, ultimately my fault though.
Back in January I was hospitalised for 4 weeks with intense pain in my right leg, especially my knee. The first night in I had a terrible fever and was delirious for about 24 hours. Doctors said I had an infection somewhere in the muscles and put me on IV antibiotics. 2 weeks later I'm still on the antibiotics, still in a fair amount of pain (on a catheter for the most of the time as I can walk to the toilet) during that time a diabetes specialist nurse came in once, asked how my bloods were (on a drip for that as well, so they were great) and then left, didn't see another diabetes specialist in the four weeks I was there.
when it didn't look like the IV was fixing the infection the doctors opened my thigh with two 6" cuts along the length and 'cleaned it out' with saline solution to fight the infection. They then left my leg open for three days to make sure the infection didn't come back. It was cool seeing inside my own leg when they changed the dressings and I have now got two awesome scars on my leg, so that's a silver lining I guess. (not blaming the hospital with all this, there is no fate bu what we make, just giving a history)
two weeks later they discharged me as I was just about able to walk with crutches and they couldn't see any more infection. I'm currently still using one crutch to get around as my right leg feels very weak, my knee 'gives out' when i walk and it gets very uncomfortable/painful to do any serious walking with it. In the last week/two weeks I've been waking up at about 3am with intense pain in my lower back, too much pain to sleep or even lie still. First thought of course was that I'd injured it or I'd been leaning too much on my crutch but I've been making a conscious effort since that first time and the situation hasn't changed. Its easier when i get up and sit on the sofa and when I walk to work in the morning (about a mile or so) the pain is almost completely by the time I arrive.
I've also been investigated for rheumatoid arthritis as I've been getting stiffness and joint pain in my hands but the rheumatologist I saw isn't convinced (no red swelling)
Quick diagnosis by Google leads me to think my neuropathy is progressing up my leg and into my lower back, which is a little terrifying. Also potentially my hands which as a video gamer is probably more terrifying.
does anyone have any thoughts/advice/similar experiences/article links/anything at all? I'd like to know, good or bad, what I could be looking at here (most sites say 'get your diabetes under control and the neuropathy won't get worse' not 'this is what will happen if you don't)
apologies for the essay
Baronriot
quick medical summary:
type 1 diabetic for 10 years,
peripheral neuropathy (in feet) for about 4 years (burning sensation, pins and needles, especially bad at night, treated with amyltriptyline)
Severe episodes of depression
Blood sugar control can only be described as terrible, I've moved around alot, switched doctors/hospitals/consultants, ultimately my fault though.
Back in January I was hospitalised for 4 weeks with intense pain in my right leg, especially my knee. The first night in I had a terrible fever and was delirious for about 24 hours. Doctors said I had an infection somewhere in the muscles and put me on IV antibiotics. 2 weeks later I'm still on the antibiotics, still in a fair amount of pain (on a catheter for the most of the time as I can walk to the toilet) during that time a diabetes specialist nurse came in once, asked how my bloods were (on a drip for that as well, so they were great) and then left, didn't see another diabetes specialist in the four weeks I was there.
when it didn't look like the IV was fixing the infection the doctors opened my thigh with two 6" cuts along the length and 'cleaned it out' with saline solution to fight the infection. They then left my leg open for three days to make sure the infection didn't come back. It was cool seeing inside my own leg when they changed the dressings and I have now got two awesome scars on my leg, so that's a silver lining I guess. (not blaming the hospital with all this, there is no fate bu what we make, just giving a history)
two weeks later they discharged me as I was just about able to walk with crutches and they couldn't see any more infection. I'm currently still using one crutch to get around as my right leg feels very weak, my knee 'gives out' when i walk and it gets very uncomfortable/painful to do any serious walking with it. In the last week/two weeks I've been waking up at about 3am with intense pain in my lower back, too much pain to sleep or even lie still. First thought of course was that I'd injured it or I'd been leaning too much on my crutch but I've been making a conscious effort since that first time and the situation hasn't changed. Its easier when i get up and sit on the sofa and when I walk to work in the morning (about a mile or so) the pain is almost completely by the time I arrive.
I've also been investigated for rheumatoid arthritis as I've been getting stiffness and joint pain in my hands but the rheumatologist I saw isn't convinced (no red swelling)
Quick diagnosis by Google leads me to think my neuropathy is progressing up my leg and into my lower back, which is a little terrifying. Also potentially my hands which as a video gamer is probably more terrifying.
does anyone have any thoughts/advice/similar experiences/article links/anything at all? I'd like to know, good or bad, what I could be looking at here (most sites say 'get your diabetes under control and the neuropathy won't get worse' not 'this is what will happen if you don't)
apologies for the essay
Baronriot
