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Peripheral neuropathy, RLS and PLMD

Neuropathy | Last Active: May 9, 2023 | Replies (40)
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@dodeebug

Hi I am new to this group. I was diagnosed with Restless Leg Syndrome a few years back. The neurologist I went to that said I had RLS prescribed Gabapentin, which I was allergic to. He then put me on Carbidopa/levodopa, which my father took for Parkinson. I was not happy with this doctor. I changed and he immediately, slowly weaned me off that med and put me on Ropinrole. Which at first was a miracle. But I was warned it would not be a cure and I have had my dose increased over the years. I tried the new patch Neupro. I had a bad reaction. I have read lots of suggestions and thank everyone. I do not drink much water and will increase and I do like tonic water with a little lime (no gin). I will try to give up my coffee and I love my wine, 1 glass and not every day. I do exercise by walking and riding the bike at the gym and walk on the treadmill. Sometimes the RLS is so bad I just want to cry. I will try to be more proactive.

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Replies to "Hi I am new to this group. I was diagnosed with Restless Leg Syndrome a few..."
Chris Trout, Volunteer Mentor | @artscaping | Jun 6, 2022

Greetings @dodeebug, and welcome to Connect. As a group, we are sharing advocates. That means that we learn from each other, share our personal experiences, and practice supportive responses. First of all, I don't have RLS. I do have trauma shivers from neuropathy. I became aware of this forum as a caregiver for my life partner. He has RLS and has been through the wringer with it, starting also with Gabapentin. Currently, on Ropinirole, he has been having some pretty sleepless nights. Recently he began to also have painful Charley Horses almost every night.

One of the recommendations was to significantly reduce or eliminate caffeine. He thought he was following the guidelines until I asked him why he was drinking so much iced tea. For some reason, he didn't think tea had caffeine in it. So, he drank it all day and had RLS at night. On top of that, he was told to start the first part of the Ropinirole dosage at about 4:30 pm. He never could remember until I set his phone alarm for 4:30 pm. Now it looks like both of these changes are making a difference. I am lying here "working" and he has already fallen asleep. Hmmmmm.

Please let me know what recommendations you receive and I will share them with him. Good luck to you.

What other beverages do you drink?

May you be free, safe, and protected from inner and outer harm.
Chris.....

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