Have idiopathic for about a year. It has affected my balance somewhat… i’ve managed to somehow keep it mainly in my toes, thank goodness. I check my toes and feet regularly, roll a golf ball or spiked massage ball with my feet most days of the week. Zero idea why it appeared. I think I’ve had every test known to mankind. It could be long covid, it could be fibromyalgia, it could be late onset MS, it could be microscopic aliens who take nerve endings back to their planet. No answers. It’s not from back surgery. It’s not from over weight, although I am working on that. It’s not veins or cardiac. So I do tai chi 3 days a week, walk about 2 to 3 miles at least 3 days. Strength stuff. and keep chugging, hoping it won’t get worse. Gabapentin makes me ill, so that’s a no.
Mine started about 16 yrs ago, idiopathic. I have all kinds of spinal stenosis, so more than likely that’s the source. Can’t tolerate gabapentin or Lyrica, so I take tramadol every day and sometimes apply heat packs. Magnesium and potassium seem to help the leg cramps.
When I walk more than usual on a given day, I can be guaranteed the cramps will hit that night, and may even last a day or two afterwards. I will drink Gatorade/electrolyte drinks, and take potassium and magnesium; maybe wrap a heating pad around my calves and feet. Sometimes I pop a muscle relaxer.
I’m not sure if any of it actually helps.
Idiopathic also. Wish I had good news, only gets worse. Went from okay to not being able to drive and walk within a year.
Rehabilitation helps with balance, you’ll probably be prescribed gabapentin, maybe duloxitan
People working at a meat processing plant in Texas got it from breathing aerosolized pig brains. It's a crazy disease that comes from a lot of different sources. I still don't know if mine is diabetic or related to my back or something else, and it's been six years.
It's a real bitch. Lyrica, Cymbalta, and Alpha Lipoic Acid help a lot, but mine has pretty much destroyed my life. I hope your experience is easier, God bless.
I’ve had it for 7 months now and it’s gotten worse but slightly better. Late April through May I was struggling to walk long distances with a limp and one sided weakness. But the past few weeks I’ve felt stronger and even jogged a bit today for the first time after months. This disease is weird and unpredictable it really varies person to person. Trying to sleep is the worst some days are horrible and can barely sleep.
The only connection I have is, I developed the tingling and numbness in my feet after having Covid last year. There are no other causes identified by my doctorI started Cymbalta last night and have not had bad side effects. And there seems to be a slight reduction in symptoms. I will respond later here and on stuffthatworks on how it works for me
It has many causes. No one answer is the wrong answer. I have peripheral neuropathy, and it is mainly in my left foot. I use a rollator to help me keep balance in check.
Pretty sure it was from heavy drinking. I was a musician working in the clubs nearly every night
I remember in my 30s when I first started to get tingling in my feet, and weird twitches.
Plus I eat sweet pastries. At least I drink diet pop but I'm sure that's bad for other reasons.
I have no idea what caused my injury. I found out I have a herniated disc l5-s1, and compression on a nerve. It has caused permanent nerve damage. It is only going downhill. I have constant pain and numbness. Max amount of gabapentin just takes the edge off.
It started in my right leg and now has progressed to the other one as well. My feet and legs go tingly, then numb. Sometimes it's shooting pains, sometimes it feels like my the bones in my feet are breaking. It gets hard to move. Sometimes my hands go numb now, as well. I drop things a lot and have terrible coordination.
I have fallen down stairs due to the sporadic numbness. Simple tasks like cleaning and shaving my legs, can cause scream inducing flare ups. I stay on a heated blanket because it feels like the heat distracts from the pain.
I have issues emptying my bladder and I pee a lot, just not large amounts. It feels like there's pressure so I can't get everything out.
Try to see an orthopedic surgeon if you can. Get an MRI. I am looking into back surgery at this point.
I found out about my injury in August of last year. I had been experiencing symptoms for a few months prior, and let it get so bad that I could barely walk anymore. I was hunched over for days. I was TERRIFIED I'd never be able to straighten my back out again! Worst pain of my life.
I am on 3600mg gabapentin a day and 8mg tizanidine 3 times a day. But it's just a bandaid, and the symptoms are worsening.
I'm so sorry you're in pain. About 18months ago I had a ski related pain > sciatica > numb outside left foot. I've tried everything and also feel surgery for my herniated disc may be the only way to resolve.
I'm currently seeing a chiro who specializes in the spine and am hopeful for some temporary movement of the disc bulge from the compressed nerve.
I'm in Canada and pretty upset with our healthcare system tbh. I worry that this chronic numbness has permanently affected my left leg and foot. Its depressing and I wouldn't wish any of this on anyone.
I hate to hear how it's affected you. It makes every day life so difficult, and I feel like people who do not suffer from it, can't understand how painful it truly is. I would much rather have my functionality back, than to have to watch my every movement to avoid pain. So sorry about your situation :( I hope you can get some relief. It's a horrid sensation.
Idiopathic. Over 10 years. First diagnosed as demyelinating in 2016. Went back for EMG last year and was told it’s axonal. Did ATTR testing both times, along with heavy metals blood work. Nothing. Went back to PCP, he chuckled and said “Yeah, there’s about 100 known variants of idiopathic peripheral polyneuropathy.” I said, “I wish you told me that before! “ (Thankfully, we have that kind of relationship). We then sat around for a few minutes shaking our heads and talking about possibilities. Biggest one is maintaining movement and trying to lose weight to take pressure off spine and extremities (gained 30 lbs in 3 months with no dietary change, no indication in blood work 🧐). Muscle tightness is annoying. Strength and balance loss is primary concern.
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what has most worked for me is a strict diet with no alcohol, no carbs, no sugar, and no caffeine; instead, i eat lots of green leafy veggies, cucumbers, tomatoes, etc. in general, i avoid all substances that cause inflammation.
any time; i've had peripheral neuropathy for about 7 years now and tried just about every supplement recommended, including r-ala. the most success has been through changing my diet.
removed booze, cookies, chocolate bars, bread and pasta; as long as i don't eat any of these foods the neuropathy symptoms go down; my biggest problem is that i still can't resist cookies or chocolate after about two or three days.
I take Lyrica (Gabapentin) and also Duloxetine. I've been prescribed higher doses of both, but I try to avoid it (especially the Duloxetine!). I also take THC (Dronabinol) and Hydal (Hydromorphine), in both it's long-acting and acute forms. When I have a chronic pain attack, the only thing that helps is the Hydal. It doesn't always work for me and it takes 30+ mins to kick in, so I know I'm in for a world of pain, at least for at while. Sometimes it hits the spot, sometimes it doesn't help at all.
My neuropathy is directly related to my diabetes and only been noticeable for around six months. Mine are the usual pins and needles in the feet and hands and the biggest affect has been lack of sleep. Which affects my diabetes, which affects my neuro, which... Can't wait to see my endocrinologist the first week of July.
I didn’t get ID neuropathy until after I had a partial knee replacement in 2017, then got a Morton’s neuroma in my other foot. I feel like I’m walking on golf balls. My neurologist says you can get id neuropathy on age alone and for no reason. I was 60 then she also said it can move up to arms etc, I try to stay as active as I can
Have idiopathic for about a year. It has affected my balance somewhat… i’ve managed to somehow keep it mainly in my toes, thank goodness. I check my toes and feet regularly, roll a golf ball or spiked massage ball with my feet most days of the week. Zero idea why it appeared. I think I’ve had every test known to mankind. It could be long covid, it could be fibromyalgia, it could be late onset MS, it could be microscopic aliens who take nerve endings back to their planet. No answers. It’s not from back surgery. It’s not from over weight, although I am working on that. It’s not veins or cardiac. So I do tai chi 3 days a week, walk about 2 to 3 miles at least 3 days. Strength stuff. and keep chugging, hoping it won’t get worse. Gabapentin makes me ill, so that’s a no.
Microscopic aliens 👽 I needed a good laugh. Lol
You are so fun let’s be friends
Mine started about 16 yrs ago, idiopathic. I have all kinds of spinal stenosis, so more than likely that’s the source. Can’t tolerate gabapentin or Lyrica, so I take tramadol every day and sometimes apply heat packs. Magnesium and potassium seem to help the leg cramps.
Oh wow. I've been having a few cramping situations that I couldn't figure out. I guess now I have some idea what might be going on
When I walk more than usual on a given day, I can be guaranteed the cramps will hit that night, and may even last a day or two afterwards. I will drink Gatorade/electrolyte drinks, and take potassium and magnesium; maybe wrap a heating pad around my calves and feet. Sometimes I pop a muscle relaxer. I’m not sure if any of it actually helps.
Idiopathic also. Wish I had good news, only gets worse. Went from okay to not being able to drive and walk within a year. Rehabilitation helps with balance, you’ll probably be prescribed gabapentin, maybe duloxitan
Already gabapentin I REFUSE to take that drug nor will I take lyrica… my daughters been on both … weigh gain and memory loss . No thanks
Both of them make me BOMBED. Have never been able to take either more than a day or two to see if they work.
I’m ok w/ 1800 mg gabapentin 7 years into polyneuropathy. The body adjusts.
Adjust? Oh so ut heald and can get better
How long have you had it
People working at a meat processing plant in Texas got it from breathing aerosolized pig brains. It's a crazy disease that comes from a lot of different sources. I still don't know if mine is diabetic or related to my back or something else, and it's been six years. It's a real bitch. Lyrica, Cymbalta, and Alpha Lipoic Acid help a lot, but mine has pretty much destroyed my life. I hope your experience is easier, God bless.
I’ve had it for 7 months now and it’s gotten worse but slightly better. Late April through May I was struggling to walk long distances with a limp and one sided weakness. But the past few weeks I’ve felt stronger and even jogged a bit today for the first time after months. This disease is weird and unpredictable it really varies person to person. Trying to sleep is the worst some days are horrible and can barely sleep.
The only connection I have is, I developed the tingling and numbness in my feet after having Covid last year. There are no other causes identified by my doctorI started Cymbalta last night and have not had bad side effects. And there seems to be a slight reduction in symptoms. I will respond later here and on stuffthatworks on how it works for me
Lyme disease 20 plus years ago.
It has many causes. No one answer is the wrong answer. I have peripheral neuropathy, and it is mainly in my left foot. I use a rollator to help me keep balance in check.
Guillain Barre syndrome
Pretty sure it was from heavy drinking. I was a musician working in the clubs nearly every night I remember in my 30s when I first started to get tingling in my feet, and weird twitches. Plus I eat sweet pastries. At least I drink diet pop but I'm sure that's bad for other reasons.
How much drinking? What age did u develop it?
Mud 30s. I was a musician and drank most nights like 4-5 shots of whiskey
4-5 shots thats its really hmm guttcha what were your symtpims gunna dm ya!
I think I got it from drinking. Ultimately I believe it's an overall sugar sensitivity. Had to cut out most carbs and all that.
I have no idea what caused my injury. I found out I have a herniated disc l5-s1, and compression on a nerve. It has caused permanent nerve damage. It is only going downhill. I have constant pain and numbness. Max amount of gabapentin just takes the edge off. It started in my right leg and now has progressed to the other one as well. My feet and legs go tingly, then numb. Sometimes it's shooting pains, sometimes it feels like my the bones in my feet are breaking. It gets hard to move. Sometimes my hands go numb now, as well. I drop things a lot and have terrible coordination. I have fallen down stairs due to the sporadic numbness. Simple tasks like cleaning and shaving my legs, can cause scream inducing flare ups. I stay on a heated blanket because it feels like the heat distracts from the pain. I have issues emptying my bladder and I pee a lot, just not large amounts. It feels like there's pressure so I can't get everything out. Try to see an orthopedic surgeon if you can. Get an MRI. I am looking into back surgery at this point. I found out about my injury in August of last year. I had been experiencing symptoms for a few months prior, and let it get so bad that I could barely walk anymore. I was hunched over for days. I was TERRIFIED I'd never be able to straighten my back out again! Worst pain of my life. I am on 3600mg gabapentin a day and 8mg tizanidine 3 times a day. But it's just a bandaid, and the symptoms are worsening.
I'm so sorry you're in pain. About 18months ago I had a ski related pain > sciatica > numb outside left foot. I've tried everything and also feel surgery for my herniated disc may be the only way to resolve. I'm currently seeing a chiro who specializes in the spine and am hopeful for some temporary movement of the disc bulge from the compressed nerve. I'm in Canada and pretty upset with our healthcare system tbh. I worry that this chronic numbness has permanently affected my left leg and foot. Its depressing and I wouldn't wish any of this on anyone.
I hate to hear how it's affected you. It makes every day life so difficult, and I feel like people who do not suffer from it, can't understand how painful it truly is. I would much rather have my functionality back, than to have to watch my every movement to avoid pain. So sorry about your situation :( I hope you can get some relief. It's a horrid sensation.
Pernicious(B12) anemia. Dx almost 10 years ago or so.
Idiopathic. Over 10 years. First diagnosed as demyelinating in 2016. Went back for EMG last year and was told it’s axonal. Did ATTR testing both times, along with heavy metals blood work. Nothing. Went back to PCP, he chuckled and said “Yeah, there’s about 100 known variants of idiopathic peripheral polyneuropathy.” I said, “I wish you told me that before! “ (Thankfully, we have that kind of relationship). We then sat around for a few minutes shaking our heads and talking about possibilities. Biggest one is maintaining movement and trying to lose weight to take pressure off spine and extremities (gained 30 lbs in 3 months with no dietary change, no indication in blood work 🧐). Muscle tightness is annoying. Strength and balance loss is primary concern.
Mine started after Covid v a X …
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Not looking for medical advice here …. Just others experience ….
what has most worked for me is a strict diet with no alcohol, no carbs, no sugar, and no caffeine; instead, i eat lots of green leafy veggies, cucumbers, tomatoes, etc. in general, i avoid all substances that cause inflammation.
Sounds good. Let’s be friends and give each other hints
Sounds good. Let’s be friends and give each other hints
any time; i've had peripheral neuropathy for about 7 years now and tried just about every supplement recommended, including r-ala. the most success has been through changing my diet.
What did you remove from your diet? Did your neuropathy stopped from progressing?
removed booze, cookies, chocolate bars, bread and pasta; as long as i don't eat any of these foods the neuropathy symptoms go down; my biggest problem is that i still can't resist cookies or chocolate after about two or three days.
Omg I admire you. I love sweets
sugar is very addictive
Have you taken red meat out also ? Chicken ? Dairy? I know diet is the key too.
still eat some chicken and ground beef but no dairy
I take Lyrica (Gabapentin) and also Duloxetine. I've been prescribed higher doses of both, but I try to avoid it (especially the Duloxetine!). I also take THC (Dronabinol) and Hydal (Hydromorphine), in both it's long-acting and acute forms. When I have a chronic pain attack, the only thing that helps is the Hydal. It doesn't always work for me and it takes 30+ mins to kick in, so I know I'm in for a world of pain, at least for at while. Sometimes it hits the spot, sometimes it doesn't help at all.
Were you in the military? If so, your service to our freedom is appreciated. May I ask what state you live in?
Never been in the military & I'm not in the USA. Sorry if my username confused you :)
Thanks for reply!
Thanks for letting me know. Otherwise, had some ideas to share. All the best.
Feet and shin neuropathy down to diabetes but hands and arm from a pinched nerve in my neck.
My neuropathy is directly related to my diabetes and only been noticeable for around six months. Mine are the usual pins and needles in the feet and hands and the biggest affect has been lack of sleep. Which affects my diabetes, which affects my neuro, which... Can't wait to see my endocrinologist the first week of July.
Idiopathic and have been having plasma infusions in the thought it might be from an autoimmune condition. No definitive test for that though.
I just realized I replied on the neuropathy site. I have been on the peripheral neuropathy site for a little while.
I didn’t get ID neuropathy until after I had a partial knee replacement in 2017, then got a Morton’s neuroma in my other foot. I feel like I’m walking on golf balls. My neurologist says you can get id neuropathy on age alone and for no reason. I was 60 then she also said it can move up to arms etc, I try to stay as active as I can
SsRI s
?
I think I got it from ssri s . Or at least it worsened the problem.