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Living with Neuropathy - Welcome to the group
Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.
I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.
We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?
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Same here, I’ve resorted to sleeping pills. Ambien (5mg.)every night allows me to sleep, and I use compression stockings too
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1 ReactionThese are the stockings I use. They are not the super tight that ones that make you work up a sweat putting on or removing. They tend to roll down from my thighs so I just turn them down right below my knees.
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2 Reactions@fiesty, I have had neuropathy for almost 30 years, ranging from my feet to my fingertips and shoulders. I tried everything the docs could suggest. Nothing helped. Finally, a couple years ago, someone suggested turmeric. So I bought a small jar of powdered turmeric from a big box store, and tried it. About a quarter teaspoon in small glass of warm water, about 6-8 oz. The neuropathy was gone in about 15 minutes. I do not use it every day, but only when the neuropathy is really driving my insane. Turmeric is a blood thinner, so one has to be very conservative about using it. I suspect the characteristic of blood thinner is part of the anti-neuropathy work.
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1 Reaction@johnbishop yes I have been they did a nerve test and it feels like my feet are swollen all the time and hurt, I tried all kinds of medicines to no help. gabapentin was one than they tried another type and I had a reaction to that so they wanted me to take a different one and that one was a little scary I read the side effects and it said once you star you shouldn't stop or it could cause seizures. I'm not much for wanting to take pills anyways so when it said you can't stop once you start backed me off.
@bobbi112, is your diagnosis small fiber peripheral neuropathy? I started another discussion for what helps me and to get input from others who have tried it so they could share their experience. It might be worth trying if your still having problems with side effects from the medications that are used to treat neuropathy symptoms.
Have you tried the new Protocol 525 product for neuropathy relief?: https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/
Hi @bobbi112, are you sure about stopping the medication? I know some medications cannot be stop abruptly. With those medications people are weaned off them plus a medication should never be discontinued without the order from the doctor prescribing it. Always consult with the doctor first before stopping any medication. I met with my physician who prescribed a medication I thought I did not need and wanted to stop. He weaned me off the medication in a 3 week period.
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3 Reactionsgabapentin is one of those -- you must wean yourself off gradually or it could cause a seizure --it is essentially an anti-seizure med, but doctors have found it works for neuropathic pain for some people
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2 ReactionsTerrible stuff
@bobbi112 I have tried a ton of medications, including Gabapentin. None of them helped much, for very long, but Gabapentin was the medication several of my siblings took for their neuropathy. Lyrica seems to be one that helps a lot of people, but I was in the 2% who had some bad reactions. Sad part is that it was actually reducing my pain.
Every medication reports any side effect that might even remotely happen, to avoid possible lawsuits. It seems like every medication I take has almost the same list. I always read them, just to know what to watch for. But I almost never experience any of them. Once in a while I feel something on the list for the first week or two, but it goes away.
The rule of thumb is that stopping a medication has to be done very gradually, some much more so. It can take up to a year to taper off some medications.
A second rule of thumb is never stop taking a medication without the approval of the doctor.
I hope you find a treatment for your pain. It takes perseverance.
Jim
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5 ReactionsThanks, @oldkarl, for the tumeric tip. I'd bought some because it was recommended as a digestive aid and have used it sparingly with a few upsets. However, I did not realize that it was also a blood thinner. I'm on a prescribed blood thinner, Plavix, and baby aspirin because of an earlier stroke so your information will help me use more caution with tumeric. Good to learn that it helps with your neuropathy pain.