on fire

[billygolf1000]

I am now four years into the disease.  My main complaint is it feels like my body is on fire most of the time.  Especially in my pelvic area and feet.  Sometimes it feels like I am plugged into a light socket.  I know its neuropathy but sometimes its just downright awful.  I take 300mgs of lyrica and 1200mgs of neurontin every nite but the neuropathy doesn't subside.  Any thoughts?

[Joe S.]

I am glad to hear that the Neurontin and Lyrica are helping you. Neurontin gave me TIA symptoms and Lyrica made me suicidal. They were reminders to always check for side effects, counter indications and drug interactions.

If you have not read "Spoon Theory" on the web yet, please do. It will help you understand good and bad days. Management is the key to surviving this disease.

Do not panic. It increases your pain levels and your anxiety levels.

Always remember to breath. I know that it is hard when you are experiencing pain but it does help to reduce your pain if you do not hold your breath.

Meditation can help with your pain and your nerve pain. I use a simple meditation. I find a comfortable position. close my eyes and with my eyes close I look to the top of my fore head. As I breath in I think "I am" and as I breathe out I think "calm". I use nice smooth rolling deep breaths and try to keep it up for 15 minutes. If I fall asleep during this process that is okay. If I loose my focus, I just start again.

There are vitamins and supplements that we can take that help ease our symptoms. Some of us have posted these in our signatures. Do your checks before trying. I usually will try one for a month to see if it helps. I will then stop and see if I feel worse. if I do I will start taking it again.

Good luck on your journey!

[irish]

Have you ever taken any amitriptyline at bedtime for neuropathy or even some of the newer antidepressants? Do not dismiss these drugs as they do help.

Have you even had a diagnosis of pudental nerve neuropathy?? This affects the pelvic area and I am wondering if an injection or block of the nerve would help control this. I am hoping other people join in this and offer suggestions. Irish