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Anyone here dealing with peripheral neuropathy?
Neuropathy | Last Active: Dec 8 11:43am | Replies (3052)Comment receiving replies
I've had peripheral neuropathy for several years now. About 7 years ago, I had a large flat swelling on the outside of my right leg. Then I developed a swelling on the inside of my right thigh. Checked for blood clot - none at the time - but shortly after, I became unable to walk without complete support. Dr. prescribed physical therepy. Helped but was still bad. Got some better over time but needed a cane and lost energy. Minor tingling started in feet - Dr. poked around on my foot - I could feel the poking so he couldn't determine what it might be. Developed cancer a couple of years later and was on chemo for 6 months and radiation for four sessions. So, now it seems that I had the beginnings of neuropathy before the chemo and the chemo made it much worse - the gabapentin did nothing to help - but now I have blood clots and am on warfarin. I am suspicious of most of the drugs on the market as the side effects seem to make taking them a risk, if not dangerous. I take warfarin and when pain is severe, I take acetomenaphin. I try to go to bed with my feet cold and use a good foot cream before going to sleep. Even though I'm 80, I would like to extend my life and don't want to take risks with side effects. Should the time come when a drug is honestly beneficial, I'll take some. Seems like the med community treats symptoms and the real causes are sometimes overlooked or are beyond present medical knowledge. I'm okay with that - wish it were different but it's not.
Replies to "I've had peripheral neuropathy for several years now. About 7 years ago, I had a large..."
Thanks John. Other side of the country, though. Attendance at monthly meetings or support groups would likely make me crazy as I spend too much time thinking about the neuropathy anyway. I try not to make it my life's only event. The very fact that there are these groups active indicates to me there haven't been many forward strides in helping or curing. So, I'll have a donut and a cup of coffee and distract myself with computer games. I will keep an eye on the foundation news and hope for the best - thanks for bringing them to my attention. I've signed up to receive the newsletters.
I'm with you Mary - although I don't have the pain and just have numbness in my feet and legs, I try to focus on staying positive and looking for something that makes the condition a little better. I think one of the best things to do is walk more if possible. I'm 73 and have trouble with the walking so I bought a recumbent exercise bike that I can sit on and pedal for exercise. I try to do it for 30 minutes 4 to 5 times a week. Also try to increase my walking in my day to day activities. I let my neuropathy go undiagnosed for 15+ years because I was told by a doctor if the tests show you have nerve damage there is nothing that you can do for it so I didn't do anything about it. This past year I decided to be more proactive and have the tests done (EMG, MRIs, etc.) and meet with a neurologist. It opened a whole new world of information and insight into how many people suffer from neuropathy along with the different kinds and causes. If you do Facebook, you might want to join the closed group "Our Neuropathy Friends". They have over 3,000 members from all walks of life that can answer questions, suggestions on what has or hasn't worked for them. Good luck!
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Hello @mfobrien36, I hope you find some relief with your pain. I found a website that has a lot of information on neuropathy that might offer some suggestions for you - https://www.foundationforpn.org/. I would remain proactive with your neuropathy and keep trying different treatments until you find something that works for you. Also, look for a neuropathy support group in your area if possible. I am a member of the Minnesota Neuropathy Association (http://www.neuropathy-mn.org/). They hold monthly meetings and bring in guest speakers on different neuropathy related treatments if you happen to live in the Minneapolis area. Good luck!