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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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Yes I am on Percocet, and lyrica. I am allergic to many meds.
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1 ReactionI have tingling on the bottom of my feet No pain or numbness
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1 ReactionI am a 87 year old female who has always been very active but now I I can hardly more secondary to non-diabetic peiphera....l neuropathy. I have excellent medical care but nothing works. I have to lean on the wall to pull my jeans up. My feet feel like I am on a teeter-tooter and unstable. The pain in the lower legs and feet is constant and miserable.. I would love to have even a little relief.........
@madgemgunia - Have you looked into or tried any complementary or alternative therapies to help with your neuropathy? Here are some ideas -- https://www.foundationforpn.org/living-well/integrative-therapies/
I thin k I have tried them all!!! I get comments from friends that had good results with alternative therapies and I am always hopeful but never have any positive results, but costs !!! I am still willing to try and I appreciate you message.!!!
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1 ReactionHello @jansendscards I have a different rare form of PN (CIDP) but many symptoms in common with numbness etc. However, I also experience very sharp shooting pain in arms & legs, seemingly out of nowhere, but happens often. Most Neurologists don't get the pain part... say that it is not part of PN. Clearly thousands of us disagree! Your ID of small cell will be helpful to many... thanks for sharing that.
As for MEDICATION: the only thing that helped with my radiating and shooting pain is Hydrocodone. With the entire "no opioids movement" I've been told countless times that this med. & Percocet are the same. They are not.... I have nerve pain constantly in teeth as well a (a different illness) and only hydrocodone will work, and works well... 10mg. I've had to give it up as I have severe chronic migraines as well... so was forced to choose for which pain I wanted relief; migraines = Percocet... nerve pain = Hydrocodone. Without Hydrocodone, I now have NO relief for NERVE pain. It can be torturous. I hope this is helpful. No one should have to live with this kind of pain... nor with choosing which pain one must suffer & one one with which to have help.
Also, I have not once had to increase dosage of Hydrocodone, (10+yrs) no tolerance build as is taken only when needed. Percocet for migraines was just the opposite. My wish is that someone in a position to do so will research this further. I certainly have.
I hope you find help soon. Very Best wishes to you.
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2 ReactionsLooking for specialist for small fiber neuropathy in Dallas TX. My husband is suffering without little improvement so I think we need to go back to correct diagnosis.
Hello @csc, Welcome to Connect. I'm sorry to hear your husband is suffering and not seeing much improvement. Here is one of the better sources of neuropathy information - Neuropathy Commons and it has a search function to look for a neurologist in your state. Here's the search link for Neuropathy Specialists in Texas - https://neuropathycommons.org/experts-directory/us
Are you able to share a little more about your husbands neuropathy symptoms and how long he's had them?
It seems to have started when he was put on statins 2 years ago.
I went to the Neuropathy Commons website, clicked on find a doctor for NV but zero names came up. Did I miss a step? Thank you.