Connect
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Neuropathy Support Group.
Connect
Welcome @dadroot, You are not alone in the idiopathic neuropathy club. I chalk mine up to genetics and possibly related to the metabolic syndrome since I was labeled as having pre-diabetes for most of my adult life. You might find it helpful to scan through the related discussions and comments on stem cells and neuropathy. Here's a list - https://connect.mayoclinic.org/search/?search=stem+cell+%2Bneuropathy.
My own non medical opinion is that stem cell therapy is not there yet for neuropathy and probably not in my life time. I did get to listen to some research folks back in 2018 at the Minnesota Neuropathy Association and took some notes with the links to research they shared. I attached a PDF file of the notes but not sure how helpful it is.
I think it's great that you are doing your own research. It's probably one of the best ways we can help ourselves be informed on what treatments are available that might help provide some relief.
Do you have pain with the neuropathy during the day?
18Aug04-MNA-Mtg-Notes (18Aug04-MNA-Mtg-Notes.pdf)
-
Like -
Helpful -
Hug
1 ReactionThank you for responding!
I agree with you about Stem Cells in our lifetime. Even much of the current research is still written in pencil and chalk. I read somewhere about a woman who was up in arms because Medicare wouldn't cover Stem Cell Therapy for her... but Ive read so much about the subject lately Ive lost track.
I don't have much pain during the day, but then I stay reasonably active in our garden. However, a year ago I prided (is that a word?) myself on my upper body strength. Once I picked it up without falling over I was able to carry a bag of fertilizer or cement mix around our yard to where they needed to go. This summer I noticed that my fingertips are going numb and my upper body strength is quite a bit diminished. Now anything much heavier than a coffee much is almost impossible to hoist.
At nighttime I take prescribed Lyrica and if that doesn't quite do it I'll chomp a Marijuana Gummy or two so I can sleep.
What have you found that helps you?
-Don
Howdy from Colorado, Ma'am!
I'm sorry to hear about your pain and of your challenges.
Peripheral Neuropathy is NOT for sissies, is it? What you say about your numbness being different in each leg.
When your Neuropathy firdt started coming on, did it start in one leg and then the other, or was it both at once?
Did it start in your feet? Mine did, and I first noticed that I had 'drop foot' in my right leg not 4 months after I had a total knee replacement on that same side. In fact, in a follow-up appointment with the Doc who did the knee replacement I asked him if they left a SPONGE inside me or nicked a tendon.
(He didn't laugh)
When I explained the
drop foot issue to him he assured me it would go away as my knee replacement settled in. Nope.
Be kind to yourself,
-Don
I posted my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. I'm fortunate that I only have the numbness and some tingling with no real pain. I get my neuropathy supplements from a group I found on Facebook back in 2016 when I started my search for something that might help - https://theprotocolworks.com/. For the first 2 or 3 years the group maintained a list of supplements and links to where we could order them. Then the person who started the group met with a local pharmaceutical company and worked on having them combine the supplements into fewer capsules because folks didn't like taking so many capsules every day. So now it's down to 4 capsules in the morning, 2 at noon and 4 in the evening. They are trying to get the supplements into liquid form but probably won't happen in 2025. They do have a FAQ list on their website and one of the questions is Why the Protocol?. I made a PDF with a link to the research behind each of the supplements. The website has it but doesn't actually link to the research.
Another helpful site is the Foundation for Peripheral Neuropathy. Their complementary and alternative treatments list most all of the same supplements I take in the protocol - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf. They also have a lot of other information you might find helpful - https://www.foundationforpn.org/living-well/.
Why the Protocol (Why-the-Protocol.pdf)
I can’t believe that you and I are neuropathy sisters. I have many of the same issues, I have found swimming an hour to two hours is my happy place. I too was a very active person walking 4 - 5 miles a day. Currently, I am taking Pregablin 50mg in the morning and 75mg at night. For pain I take Meloxicam at night. If the pain gets really bad I have lotion which is 1:2 THC to CBD which helps almost immediately.
I hope this helps and feel free to contact me.
-
Like -
Helpful -
Hug
3 ReactionsThank you so much for your comment. I call the swimming pool my happy place
too!! 👍 I meet people in the water and have a group of friends to talk
to, so in addition to the swimming, which is great exercise and feels good,
it's a social outlet to get my mind off my condition. After swimming, I am
able to function a little better for a while, but as the day progresses, I
have to lie down a lot to take the pressure off my right leg which becomes
so uncomfortable and burns.
I am glad that the CBD, THC lotion helps. I need to look into that.
I'm 71 now, and have been dealing with this for 8 years. I seem stable, in
that I'm not worse, but not getting better.
Do you have it more in one leg than the other, and do you have more pain
upon sitting? The sitting kills my right leg ao much that I have to lie on
my back to read, use my phone, etc. I do exercises in bed. I walk around my
house without canes, etc, and I can only walk short distances outside. I'm
also off balance. A gust of wind could knock me over. In the store, I ride
in those carts, but stand up frequently to shop. I'm very leary of someone
knocking into me, cause I'm not too steady.
I'm told that I have small fiber polyneuropathy with some motor involvement.
Well...time to get to the pool. Thank you again for your response.
-
Like -
Helpful -
Hug
3 ReactionsGood morning, Dad
Please keep us posted on your experience with this new doctor. I, too, have idiopathic peripheral neuropathy but large fiber (lots of balance issues, but no pain). I was diagnosed in the summer of 2022.
I hope you leave your meeting with the new doctor deeply satisfied.
Cheers!
Ray (from another part of Colorado)
-
Like -
Helpful -
Hug
2 ReactionsHi, @dadroot - interestingly, I'm a fellow Coloradan, like @ray666, and I lived in Arvada, CO, and went to high school there. It's a nice place to live. I'm now in the Upper Midwest.
I'm wondering how things went with your newer doc you went to see and what his thoughts were on stem cell therapies for neuropathy?
-
Like -
Helpful -
Hug
2 ReactionsWell, I came away pretty FRUSTRATED after talking to my Doctor. His view is that any REAL use of stem cell Therapies is still at least a decade away. If that's the case, it'll be out of my lifetime. He wasnt even open to my suggestion that he assist me into further researching the subject. He said that Kaiser Permanente would not pay for any visits to, say, a Neurologist. Grrrr
He DID warn me against using these 'providers' that pop up once in a while claiming to have a solution to this darned Idiopathic Peripheral Neuropathy.
In the end, I came away pretty frustrated with him.
I found myself coming away from my neurology appointments feeling frustrated in the early months following my diagnosis. I was able to lessen that feeling of frustration only after I'd done a lot of reading about idiopathic large-fiber polyneuropathy and came to realize there wasn't much that could be done to relieve my symptoms, certainly nothing to make them go away. For relief, however, and possibly even to help slow any worsening of symptoms, I could be diligent about getting exercise and remaining as much as possible in motion. Although my balance is still wonky, it hasn't gotten worse. And a second EMG a year after my first (the EMG that had given me my diagnosis) indicated no progression. In the neurological world of no cure-alls, hearing the doctor tell me he saw no signs of progression cheered me to the nth degree! –Ray (@ray666)
-
Like -
Helpful -
Hug
5 Reactions