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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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Not yet.
My current problem seems to be aggravated because in order to stand, my knees need to lock in a back extension(hard to explain) and that causes extreme pain.
I need to see my neuropathy doc soon.
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2 ReactionsCan I ask how old you are?
71
Hi my name is Marilyn
I’ve been dealing with neuropathy for 11yrs now.
After 7-8 different neurologists, I was diagnosed as hav
As having CIDP.
Right now I’m at a standstill on no meds except Tramadol for pain and Metoprolol for my BP.
Have been on all the meds and IVIG infusions over the years with no help.
Meanwhile my balance is awful, need to use cane or walker to get around.
My feet have no feeling in them at all.
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2 ReactionsHello All;
Has anyone experienced that acupuncture assists with neuropathy?
JL, TO
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1 ReactionWelcome @twaytrust, I think there are quite a few members who have experience with acupuncture for neuropathy. Here are a couple of discussions you might want to view:
--- Anyone tried Dry Needling or Acupuncture for Pain or Neuropathy?
https://connect.mayoclinic.org/discussion/dry-needling-or-acupuncture/
--- Accupuncture: https://connect.mayoclinic.org/discussion/accupuncture/
Do you mind sharing a little more about your diagnosis and symptoms that bother you the most?
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1 ReactionI've had it since the first of the year... At that time I held off going to the Doc til February... He offers Gabapentin..I didn't like and it didn't help it so he switched me to Pregabalin..by the time and dosage it helped it made me goofy and not sure-footed... So I got off the Meds.
At this time I could only mow half my lawn at a time and I would have to go lay down because my feet hurt so bad I'd almost go to tears
Also at this time, I could hardly go to work..I was starting to worry about my job...
I did a bunch of research and came up with this:
Take this daily:
R-ALA 600mg
B1 Benfotiamine 300-600mg
B6 Pyridoxal-5-Phosphate (No HCL types) 80-100mg
B9 5-Methytetrahyofolate 400 mcg
B12 Methylcobalamin 1000-3000mg
L-Citrulline 1000mg
Acetyl-L-Carnitine 1000-3000mg
NO Fillers in the pills like:
magnesium Stearate
Gelatin
Maltodextrin
Dyes-Colorings
Titanium Dioxide
I also have one of those feet shockers... I've gone through two of those cheap $20 ones...they work great at first and then they barely work.. I think the wiring is fragile and easily broken
So I'm looking for a better one because I think it helps with the pain....
After taking this combination for a few months... my feet are a lot better...I still have pain but it is manageable...
In fact, we just went to Disney World, Epcot, and Universal and we walked 8-10 miles a day
I have a Google smartwatch so here is what I have found.... at about 1500 steps it starts hurting..by 5000 steps I need to take small breaks and then it's fine for a while but at 5000 is the peak of the pain.
Small 5-10 breaks and my feet are ready to go...
Also, I play guitar.........I can feel it in my hands also ..so it's not just my feet but my hands(mainly fretting hand) are very minor pain
As usual...this might not work for everyone...We are all different but I hope it helps some people with healing your nerves and is a very...very...slow process, so don't expect overnight relief
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3 ReactionsSorry can't edit??
Thats small 5-10min breaks and I'm ready to go
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2 ReactionsDear All,
Thank you for this support group! My name is Krisztina, I am a violinist and I have a 2 year old daughter. I joined this group because I think it would be a great place to share my concerns, challenges with fellow neuropathy patients, because you have better insights, knowledge and empathy than anyone else.
I have a rare hereditary neuropathy, called HSAN Type 1A. I was diagnosed 2020. I don’t feel temperature, touch or pain in my legs knee down, only squeezing and vibration. I do have some “phantom” nerve pain, like electrical shock, but it is not so bad that I would need painkillers. I also have foot drop, so I am unable to flex my ankles, I need braces for safe walking. This year is particularly challenging as I broke my left foot in March as I didn’t lift my foot high enough and caught up in the floor. 2nd,3rd and 4th metatarsals.Then in May I broke the left big toe. No accident, no known injury. It didn’t heal yet, but one of the doctor I have seen said I can just start walk again without the cast boot. 2 weeks ago I broke the 2nd and 3rd metatarsals again in a different place. I am just about to solve this puzzle that probably my bones got too weak from being in the boot, that they can break very easily. Is there anyone out there went through something similar? Perhaps you have some tips how to start walking and do activities again safely? I do take D3 5000i and also Calcium 1000mg, also trying to take in calcium in food form. I would like to hike again, doing yoga again without braking any bones.
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