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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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I’m so sorry you are enduring so much pain. Have you seen a neurologist about your issues rather than a GP? They are more knowledgeable about neuropathy drugs and what works for each person. If not you might want to ask your doctor for a referral. I know when I first got neuropathy I was in so much pain until I was referred to a neurologist in the hospital and my pain went away with his help. I still have the numbness though and that produces a lot of issues as well but pain is not one of them. I hope this helps you. Keep the faith. It will get better with the proper help! Hugs
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1 Reactionthank you. I have been looking for a neuroligist I can go to, and will make an appointment.
sounds like a last resort.
georgia
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2 ReactionsI would not recommend this to anyone, but for the record I mention my recent experience. I lifted a box that was too heavy and ended up with a compressed fracture in my back. There is treatment for that, but before i could get it, I twisted my left foot and broke two toes and ended up with a huge hematoma that had to be operated on so I have a large hole in my ankle. The point is that this has gone on for about two months and my peripheral neuropathy sort of disappeared. It is starting to come back as at night I get pain in my heels especially the right one. I put blue emu on it which minimizes the pain. I guess I wonder why the other injuries minimized the P N. Solutions can be strange.
@ronoejello1 How did the EMG test go? Did you learn something new from that?
I usually take a Tramadol 50 mg pain pill around 9-10 pm for my foot pain.
Since I’m a night owl,I will take 400mg of Ibuprofen, around 2:00am before bed.
That helps me sleep,but around 7-8 am I will wake up with pain in my feet, horrible pins and needles, and stiffness in my right hand.
I’ve also started using CBD salve and it helps a little, not as much as I thought it would.
Hi everyone my name is Leslie and I am 46 years old. I have sensory ganglionopathy. With my disease I have hard core neuropathy in my hands and feet. I have had this for a year. I was on Gabapentin for a year to realize it made everything worse. Got tapered off and things got a bit better. I have equilibrium, balance, and dead nerves. They go from my elbows to my hands. And from my knees to feet. That is why my neuropathy is so bad. My question is do compound creams work for neuropathy?? And if anyone needs to chat. I am no expert with any of this. But am a good listener and think I could benefit from other’s experiences.
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2 ReactionsHi @leslie04, There is another discussion started by @jeffrapp that might be helpful for your question on do compound creams work for neuropathy.
--- Topical creams and lotions for Small Fiber Neuropathy: https://connect.mayoclinic.org/discussion/topical-creams-and-lotions-for-small-fiber-neuropathy/
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2 ReactionsI have neuropathy from alcohol abuse and liver disease. I stopped drinking over three years ago and the neuropathy is continuing to get worse. Any advice or hope it will improve?
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1 ReactionGood evening @ppier and welcome to Connect. Good for you to be able to control your alcohol abuse. Unfortunately.......at this point in time, there is no cure for neuropathy and it is a progressive disease. It takes so long for the nerves to regenerate that the brain continues to respond to the pain as the process continues.
My diagnosis was confirmed in 2013. Immediately I was referred to medical cannabis. It has been on my daily list of treatments for 10 years. My usage has increased and so has my tolerance which happens with many medications.
May you be safe, free and protected from inner and outer harm.
Chris.
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3 ReactionsHello @ppier, I would like to add my welcome to Connect along with @artscaping. While there is no cure for neuropathy there are things that we can do to help us live with the condition as Chris mentioned. You might find the Foundation for Peripheral Neuropathy site helpful for other suggestions - https://www.foundationforpn.org/living-well/.
Also, there is a wealth of experience on Connect with members with neuropathy. If you have specific questions, you might want to use the search function and typing a few words in the search box at the top of any Connect page. Here is a list of the search results using "neuropathy +what helps" in the search box (without the quotes) - https://connect.mayoclinic.org/search/?search=neuropathy+%2Bwhat+helps