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?
Interested in more discussions like this? Go to the Neuropathy Support Group.
What is this stimulator that everyone is talking about? Will it help neuropathy. I wa sjust diagnosed so I'm new to all this stuff. Thanks
thank you for sharing your research. i am 83, and i am printing your article and taking it to the store with me for supplements. i have a (long unused) tens unit, but where do you get the other stimulant items? i have followed the other items, and would like to add for the people with spinal problems that waterobics and chair yoga are options also
@tigereyes2004 here is the post by @jimhd on the BR Burst Stimulator which I think helps reduce or block the pain cause by the damaged nerves.
> Groups > Neuropathy > Ideas for pain relief from Small Fiber Neuropathy (SFN)
-- https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/?pg=14#comment-340935
Colleen, thank you so very much for this group! Hello all. While I am very new to this condition and cannot offer solutions...yet :), I hope to learn/discover soon, what works for me. Meanwhile, think I’ve found a “home” here!
June 2019, walked extensively while starting my vacation. While in motion, my feet seemed to go into shock with aches, pains, big-time tingling, and creepy-crawling feelings that eventually traveled to my knees—all within the first day. Second day on, I was chomping and stomping as if on two peg legs. Iced my feet 3x/day during the 15 day trip as the feet seized-up like pistons in a vintage car! No docs available as it was a river cruise.
Once back, saw an ortho doc who would only address my knee issues. He sent me to my GP who prescribed Gabapentin for a month (only been on it a week) and now have an early 2020 appt with a neuropathic doctor.
Trying what I can to reduce the inflammation, small/large pains, tingling and the creepy-crawlies. Walking is so very difficult. Currently getting PT for plantar fac which offers remote relief and ankle stiffness from chomping around. Bumped-up my B12, D+Magnesium, topical CBD + Diclofenac Sodium gel, bought neuropathic shoes, cut gluten from my diet and whatever little thing possible till diagnosis is forthcoming—even if it is “we don’t know what the cause is.”
Realize this is purely an introduction thread, so I’m off to read about fellow sufferers’ and their successes.
Thank you and your team for being here!!
Hello and welcome! Wish I could say glad to have you but, truthfully I'd rather you not need to be here. Life has strange twists and turns so here you are and here we are! It sounds like you are doing a great job at be self sufficient and proactive. Soak up the knowledge in this forum and remember we are all very different with different experiences especially when it comes to neurological disorders. 2020 can't come fast enough for you, I'm sure. Sorry, you must wait but being your own advocate is one of the best things you can do so, keep up the good work!!! Take care and my good wishes are sent your way.
Rachel
Good morning @southwind. Welcome to Connect. You have evidently soaked up a lot of good information about neuropathy. I am sorry your introduction was so painful and that you have to wait for an appointment. That being said, most of the Connect members encumbered by this condition have had similar journeys. Hang in there with us. There is nothing but good will and loving kindness. Be free of suffering today. Chris
Hi Colleen, my story is similar to yours including the planters fasciitis , and not being able to see a neurologist until January. In addition to what you are doing, I went off my statins, am taking, gabapentin ( so far it doesn't help, but sometimes helps me sleep) Alpha Lipolic Acid, CBD oil, neuropathic shoes, acupuncture, massage therapy, a chiropractor, and pilates. This is expensive and time consuming. The acupuncture and massage therapy seem to be helping a bit, but my conclusion is that PN has a mind of its own and some days are better than others. Have you had blood work to check for autoimmune diseases or low B 12. Mine is idiopathic which seems to make it harder to treat. So, know you are not alone.
Thanks for adding me to this group. I’m not totally sure if it’s the right one (! do hope so, the posts are so helpful and friendly!). I’ve been diagnosed with parasthesia and am still in the process of tests. It sounds pretty similar to neuropathy, but (luckily) without pain, just crawling and tingling sensations. Will be checking back once I get a firm diagnosis. Thank heavens for the wisdom of the masses and the kindness of strangers…😊
@moragsmum, Good morning and welcome to Connect. Our mission is to improve the quality of life for every member. Although we cannot diagnose or prescribe, we can share our experience with all the trials and tribulations. It appears we are all somewhat involved with symptoms generated by nerves and their function, It would be interesting and helpful to others if you could share the tests you are undergoing so others could benefit.
Do your symptoms come and go? Are they in a particular area of your body? Neuropathy is listed as one of the factors in diagnosing Paresthesia. I am going to welcome @johnbishop to this conversation. His journey has been somewhat similar with numbness and tingling with no pain,
When is your next appointment? May you be safe and protected. Chris
Hello @moragsmum, Welcome to Connect. I hope you are able to check back with us once you have a diagnosis. From what I've read about Paresthesia, treatment depends on the underlying cause.
NIH - Paresthesia Information Page: https://www.ninds.nih.gov/Disorders/All-Disorders/Paresthesia-Information-Page
Cleveland Clinic - Numbness: https://my.clevelandclinic.org/health/symptoms/21015-numbness
@moragsmum may I ask how long you have had the symptoms before you went to the doctor?