What are my chances of my neuropathy "getting under control"?
- 10 Jul 2013 by MepoMom
- 11 July 2013
- peripheral neuropathy
As some of you know, I'm dealing with a very painful neuropathy in my feet that is moving up to my lower calves. I sit down at my job for over 10 hours a day and that proves to be as painful as standing for awhile. The only relief I get is when I'm sitting with my legs elevated. I've been seeing a neuro for a short while; he cut back my Gabapentin to 300mg 3x's a day but started me on Lamictal instead. This week he is conducting an EMG/NCV to test my nerves and muscles. I feel like he is the right physician for me as he seems to care and is willing to try different things to improve my situation. Since I've switched meds the intense pain that I used to feel in the middle of the day and early evenings had lessened. However, it's much harder to go to sleep and once I wake up I have a really hard time falling back to sleep due to the pain. I attribute this to cutting back from 900mg of Gaba to 300mg at night. So there has been some positve changes and some negative changes.
This problem has steadily gotten worse over the last 5 years. But the last year has increased in pain and numbness exponentially. I was unable to plan a family vacation this summer as I didn't know what kind of vacation involved sitting with my legs up all of the time. But my whole family is going to DisneyWorld next year and I've promised my girls that my handicap will NOT affect their vacation. My sister and I have discussed my getting a wheel chair or perhaps a walker as this vacation will require a lot of walking. However, other people say, "Well when you get this under control, you won't have to worry about it." This leads to my question, "Is this like cancer - where it will go in to remission? Or diabetes, where if you practice all of the precautions you can live an almost normal life?" Is there a chance next spring I can go to DW and be able to walk the same as anyone else my age? Any thoughts?
Thanks for all of your help!
Oh how I wish that neuropathy could go into remission! But, no. Your docs just need to find the "magic" combo of meds for you and you will be able to resume your lovely life with your girls and family. If you haven't found that combo before going to DW, the wheelchairs are great for us. When we went to Busch Gardens in Tampa, I got one. Every ride there had a special handicapped access and there were lifts for the trains, etc. No lines in the handicapped accesses either! Anyone with you can go that way too! Not a bad, painful trip that way.
As far as the insomnia, it could be caused by the reduction in gabs dose. Ask your doc for a short term supply of a sleep aid to help.Sometimes pain meds (opiates), if taken at bedtime, can cause a touch of insomnia too. If you take pain meds, you might want to try to take it earlier in the evening instead of right before bed.
Hang in there, girl! You and your docs will find your magic combo. With neuropathy, it's a hit and miss situation. You have to experiment until you find the right ones. Take one day at a time.
Its not going away, but with meds you may have some relief of the pain. As far as your job, if your dr wrote a script that you had to be able to walk around every few hours, or elevate your feet, your job has to make all resonable accommedations for you. Do not be too proud use a wheelchair instead of walking all over on your vacation. That's the last place you want to aggrevate your legs. At least the wheeled walker, they kind you can sit on, would be good.
Treat it. See what happens. I have actually grown used to it. But it isn't bad unless my disease flares. It did calm down with gabapentin, doesn't really agree with me. Others feel it works well. I tend to try something and go from there. But, no, it doesn't go away. Just work on controlling the condition that makes it worse. Eventually they will have stem cell cures and they are working upon it. Huge market. Moving helps. Retraining nerves may help. Anxiety makes it feel worse. Wish I had more for you.
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