I just joined today and had to tell you that i understand how you feel. Before I say anything else, I will say one word, "Lyrica". If your neurologist has not given it to you, request it. No guarantees, but it has helped me tremendously and enabled me to function.
For many years I have been in pain from a litany of auto-immune diseases, all of which gave me some form of pain which I was always able to handle. I developed neuropathy a few years ago but that too was manageable. Then one day I was walking and I suddenly doubled over from pain in my foot. It went away but a soreness lingered for hours. As the days went by, the pain became more frequent going from one leg to the other sometimes in both at the same time. The pain spread from my feet to my calves and was excruciating. It was also in both hands causing unbearable cramping. I saw my internist, my rheumatologist and finally a neurologist that I had never seen before. He listened to my symptoms, checked a few things and said he suspected it was idiopathic small fiber neuropathy. Idiopathic means, "We have no idea what's causing it!" A few days later he did a punch biopsy (sounds worse than it is) and confirmed the diagnosis.
At the end of my first visit he prescibed Lyrica. I had taken it once before for post shingles pain and probably due to the massive dosage I was given, had the rare side affect of alopecia-hair loss. You can imagine that I was hesitant to take it again but he prescribed it for just 50 mg twice a day. this drug is amazing!!!! With two days, the pain and heaviness in my legs had lessened to the point where I was able to walk easily and participate in life.
The disease has progressed and is now up to my thighs and my elbows and I have had to increase my medication to three times a day. My phamacist said the highest dosage is 300mg three times a day so hopefully the disease will never outrun the medication.
I would love to know if this drug works for you. Pain is a very difficult thing to deal with. I may be 66 (tomorrow) but I have had pain since I was 14 so I can totally empathize with how it is affecting your life. Good luck and I hope it works for you.
Originally Posted by knicoole
I'm a new member to NeuroTalk. I knew I had to get online and find some kind of support before I drove myself crazy. I'm 19 and a type 1 diabetic. I have been since 13. I never took the best care of myself, actually I'm surprised I'm not dead. I have had my first cataract removal surgery and am due to have my second on March 7th. The worst consequence I suffer from though, is neuropathy in my legs and feet. My muscles tense, my foot burn, stabs at me, and tingles. It is even to the point where it is painful to bathe because the hot water drives my feet wild. I live every day in the most pain I have ever felt in my life. I am told doctor after doctor that I'm stuck this way. There's not much they can do. Please, someone tell me it's a lie. Because I hate myself thinking that I have ruined the rest of my life. I don't want to live like this. And everyday is a struggle with myself. I don't know who to talk to, where to go, who I can turn to. Sometimes I don't know what I would say even if I did. It's emotionally draining, physically agonizing. Sometimes I feel like there's no hope for me. Tell me that I can forgive myself, and that there is maybe hope, that this will get better. Cause I can't go on like this if it's not.