hello to all neuropathy people out there:
I hope you are all doing as well as you can. My neuropathy started in 2008 with tingly feet, leg cramps,lack of sensation up to mid-calf. same symptoms progressed to arms and now losing muscle mass in hands and feet. Grip is weaker and arm strength is less, also fingers cramp easily. Not much pain so no meds so far except Ibuprofen.Am Exercising and lifting weights as I can.
My attitude has gone from normally positive and upbeat to depressed and anxious with difficulty sleeping. How do all you seemingly happy folks out there keep the positive attitudes that I hear when I read your posts? I am having difficulty adjusting my psyche to my affliction. Any hints? Any comments would be much appreciated Thanks
First things first, thank you for your service sir. What was very key and caught my eye in your post is where you said "all you seemingly happy folks" and the key word in that is SEEMINGLY. I think most of us try to seem upbeat when we post but in reality we are all struggling with this cruel condition and it is taking its toll, no doubt. At least that's whats happening with me. I think as far as advice goes, I would say find a good primary care doc and try to get in with a good neurologist and see what they think. The earlier you can get on top of this and figure out why its happening the better off you're going to be. Hope this helps you somewhat and good luck and thanks again for your service.
Last edited by captinsane1; 07-07-2012 at 03:57 PM.
Thanks for your sage advice ,
Am trying to find good primary care. My doctor retired and am on my third new one, all seem the same : ok on monitoring the decline, not much on trying to elicit the cause. Am seeing spec ialis neurologist at Stanford but progress is sloooow.
Am coming to conclusion that is best to involve yourself in things as much as you can. Will try to join local library reading program after detached retina repairs. Maybe this will help get my mind off my condition. Many thanks for your advice! The best to you and all out there with serious disease!
Captainsane is so right!!Most of us try to sound upbeat when we post because we do try to help with advice, and it helps us to feel more upbeat in our own lives!
The things I try to do to help myself is to have warm baths, use a jacuzzi, swim, anything that helps me keep mobile because my neuropathy is in my feet, up to my knees and now, just recently starting in my hands.
I have seen two neuros, and two rheum's who have diagnosed my small fiber neuropathy as related to my rheumatoid arthritis.
Believe me, there are days when I think I would be better off not on this planet in so much pain, but then I think about my family and loved ones and try to keep on.
I have done acupuncture and massage therapy and special orthotics, nothing has been a great success but I am still here and still trying. I rest when I can and try to keep a balance between not doing enough and over doing. I think of my energy level like a bank, the more I withdraw today, the less I will have for tomorrow.
Unfortunately I have failed all medications, narcotics, anti convulsants, you name it. But good nutrition and, for me, high levels of Omega 3's have really helped.
There are many causes of neuropathy, getting to the root can be very frustrating! But you have to keep at it until you find someone who can help you! Don't give up and in the meantime, be very good to yourself!
Welcome to our little group, I have been here since I was first had symptoms in 2005 but did not receive an diagnosis until 2008!
Sounds like we are all in coping with the affliction in our own ways. Loved ones help us adjust to our physical condition for sure. It's amazing to me how many of us there are out there! I also am now pacing myself as you are.
My neuropathy was diagnosed at Mayo in Rochester Minnesota. I also have an elevated weird protein in my urine only . All my blood tests for everything including aids, heavy metals , crp, autoimmune were negative so i may be harboring some other problem that hasn't been found yet. I don't have al huge amt of pain but am losing muscle mass.
I will communicate more if I learn anything from my quest to get better. Thank you and everyone out there.