Hi, my name is neil1961! Pain in toes, anyone have any ideas for relief?

neil1961

Hi to everybody just want to tell you my history if it helps anybody or if anybody has got any advice for me. I had ces in 1994 when i was 32 years old it took 3 months to learn to walk again but with severe limp which i still have. I regained 90% bowl control after 6 months . I had bladder incontience for 6 months and had to self catheterise for 7 years before i could pee again even after my consultant told me that would be impossible . This is the interesting bit the when using a catheter with a very full bladder i found out i could increase the flow by relaxing and found i was peeing out side of the catheter as well and over the next year i learnt to pee at about 50% of the normal flow rate and i have not had a bladder infection since. I still have complete numbness in my left leg and the top half of my right leg, buttocks and genitals. I need viagra for an erection which is only 60% of normal but better than nothing but no feeling. Over the last 15 years i have developed increased pain in the toes on my left foot which is aways worst at night sometimes i don't sleep for 3 days straight. I am surviving on 3600mg of gabapentin and a box of codeine every day. Nothing seems to help i am even considering amputation but i am being told that may not stop the pain but i have to try something because i can't live another 15 years like this. If anybody has ideas as i am at my wits end .

Rosie_Scope

Hi @neil1961, welcome to the community.

I'm really sorry you're in so much pain and that it's affecting your sleep. What have the doctors said about pain management? Are they able to offer you any further therapies to help you get some relief beyond the medication?

I'm afraid we're a little limited on what we can suggest as we can't give medical advice on the community. But we can share experiences of pain and what has helped us personally. I hope some of our members might have some experiences to share soon.