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Member Neuropathy Journey Stories: What's Yours?
This discussion was created as a place for members to share their journey with neuropathy. This will allow members to easily learn from each other what has helped them and hopefully help new members avoid some of the painful and difficult struggles some of us have faced. The following is a suggested outline for sharing your story that would be helpful for other members for comparison to their own neuropathy story.
— When did your neuropathy start? What were the symptoms? When and how was it diagnosed?
— What treatments or medications have you tried?
— What side effects have you had, if any?
Optional:
— What would you tell your best friend if they told you they had neuropathy?
— What activities have you had to give up because of neuropathy? What do you instead?
— How has your life changed socially? at work? at home?
What's your neuropathy story?
Note: If you want to ask a question for another member who has posted their neuropathy story here in this discussion, be sure to add their @membername in your post, for example @johnbishop. Your question may already be discussed in other neuropathy discussions. Be sure to check here first: https://connect.mayoclinic.org/group/neuropathy/ That way this discussion can be reserved for member neuropathy stories and hopefully make it easier to read and find similar symptoms to your own.
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Lastly went in for my EMG test and my neurologist said it was Neuropathy in my motor sensory nerves and he ordered a glucose tolerance test which came back normal
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1 ReactionMy foot dr told me it is not curable but controlled with medication so I am starting out with Lyrica
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1 ReactionI’m tired a lot
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1 ReactionI thought I had erythromelalgia for 20 years. I saw many doctors and I belonged to an on line support site . Finally, I read about chilblains and taking Nephedipine for it and it ended the chilblains with the first pill .I am fine to this day, as long as I take it.
Is Nephedipine helping your neuropathy? I used to take it along with Lisinopril for high blood pressure, but stopped some years back, as the Lisinopril was enough to keep my blood pressure fine. I am wondering now if stopping it could have been a cause of my neuropathy. Been looking into all possibilities and no "smoking gun" yet on a cause.
@rickhood - Here's a reference mentioning it as a cause of PN.
"Can nifedipine cause peripheral neuropathy?
Side effect-occasionally causes peripheral neuropathy and hepatic damage. Nifedipine is worth trying in patients with attacks of angina at rest-particularly those of the Prinzmetal type-who have proved resistant to other treatment."
-- https://www.bmj.com/content/2/6142/940
The Foundation for Peripheral Neuropathy has a comphensive and a more extensive list of drugs that can cause peripheral neuropathy here -- https://www.foundationforpn.org/causes/other-drugs/
I've been taking Nephedipine for a long time. I developed bad neuropathy after starting chemo this year, though I did have a slight case of it before. I don't know if Nephedipine helps it. I stopped taking Atenelol with my Nephidipine as my BP was dropping too low. I find that the old Exerciser Elite 2000 that I had here for years, and I dragged out, IS helping my neuropathy.
Exercise and movement is critical when dealing with PN.
Hello @twobrooklyn, Welcome to Connect. I see that you are new to Connect and have posted in several neuropathy related discussions. I thought I would welcome you from this discussion - Member Neuropathy Journey Stories: What's Yours? so that you can learn what other members have shared about their neuropathy journey and what has helped them. I shared my story earlier in this discussion here - https://connect.mayoclinic.org/comment/310341/
Do you mind sharing a little more about your diagnosis and what you have tried for treatments?
I am currently taking two different meds. Had an EMG done in August to confirm my PN. Still very active and strength is good. Just the typical numbness and slight burning of the feet. Lucky so far as sleep goes. No issues at night.
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