I have Charlotte Marie Tooth (CMT) disease which is rare and inherited. I inherited the disease from my Mother. The disease showed up during my recovery of Sepsis in 2020. I continue to have difficulty walking and now require an electric wheelchair for distances beyond a city block. There are 5 types of CMT. My type for most part includes Long Fibre Neuropathy and Chronic Fatigue. I believe at last count there were 2600 diagnosed CMT patients. Have you been diagnosed by a Neurologist?
Do you think it could be low magnesium and or potassium levels? There is a lot of discussion in my neuropathy group about this causing some leg cramping along with hydrating. I drink a lot of the Zico no sugar added coconut water which has about 9g of sugar per 8 fluid oz - 45 calories. It has 440 mg of potassium and about 4% of of daily dosage of magnesium. I've been told that magnesium and potassium kind of go hand and foot together. I'm guessing this is probably not the cause since you sound like you are managing your diet really well now.
The other quirky item I've heard from folks that have leg cramps is to put a bar of white soap (Ivory) between the sheets when you go to bed. Sounds dubious to me but I'm a born skeptic. I will see if I can find any more info on the leg cramping - but if anyone else is reading this and knows of something please let us know what is working for you to prevent/relieve the leg cramps.
Hello, I am new to this , I had a skin biopsy showing I was positive to small fiber peripheral neuropathy. I get excruciating legs and feet cramps. I take magnesium tablets, I wear cotton socks up to the knees day and nights. I take salt water, and bananas. When I start walking( not much) for exercise my feet start cramping. It’s difficult to explain to others why I have to sit down and massage the area. I haven’t been able to travel in two years due to the excruciating burning pain in both legs. I also have cramps in my left arm and hand. I have other issues but I am at a loss about what to do, specially at night when the pain is a nightmare.. thanks for listening.
Hello, I am new to this , I had a skin biopsy showing I was positive to small fiber peripheral neuropathy. I get excruciating legs and feet cramps. I take magnesium tablets, I wear cotton socks up to the knees day and nights. I take salt water, and bananas. When I start walking( not much) for exercise my feet start cramping. It’s difficult to explain to others why I have to sit down and massage the area. I haven’t been able to travel in two years due to the excruciating burning pain in both legs. I also have cramps in my left arm and hand. I have other issues but I am at a loss about what to do, specially at night when the pain is a nightmare.. thanks for listening.
Hello @unhealed44, Welcome to Connect. You are not alone. I think we have all been there being at a loss about what to do when it comes to neuropathy. That's how I found Connect after being diagnosed with neuropathy back in 2016. I am one of the fortunate ones that don't have the pain but the numbness can be also be a pain to deal with so to speak. The best suggestion I have is to continue learning what you can about your condition, symptoms and treatments that are available that might help.
I'm guessing you are making sure to stay hydrated and drink plenty of water during the day.
Has your doctor or neurologist offered any suggestions to help with the cramping?
Hello @unhealed44, Welcome to Connect. You are not alone. I think we have all been there being at a loss about what to do when it comes to neuropathy. That's how I found Connect after being diagnosed with neuropathy back in 2016. I am one of the fortunate ones that don't have the pain but the numbness can be also be a pain to deal with so to speak. The best suggestion I have is to continue learning what you can about your condition, symptoms and treatments that are available that might help.
I'm guessing you are making sure to stay hydrated and drink plenty of water during the day.
Has your doctor or neurologist offered any suggestions to help with the cramping?
Hello, I am new to this , I had a skin biopsy showing I was positive to small fiber peripheral neuropathy. I get excruciating legs and feet cramps. I take magnesium tablets, I wear cotton socks up to the knees day and nights. I take salt water, and bananas. When I start walking( not much) for exercise my feet start cramping. It’s difficult to explain to others why I have to sit down and massage the area. I haven’t been able to travel in two years due to the excruciating burning pain in both legs. I also have cramps in my left arm and hand. I have other issues but I am at a loss about what to do, specially at night when the pain is a nightmare.. thanks for listening.
@unhealed44
I am 54 and diagnosed with idiopathic small fiber neuropathy almost 8 years ago. I had severe burning, pins and needles in bottoms of my feet and numbness in calves. I would have restless leg syndrome at night in bed. I take alpha Lipoic acid and Acetyl l carnitine supplements which has reduced burning and pins and needles in my feet. I take only 100 mg gabapentin but don’t like that it makes me dizzy. Nerve pain creams like capsaicin and lidocaine help relieve some symptoms so you can sleep at night. I would be careful with knee high socks. I read that the band around/under your knee joint can cut off blood circulation which would make cramping worse. If you want to wear compression socks, I read that they should be over the knee. I was out on Cymbalta/duloxetine for nerve and arthritis pain and it helped me when on it but I’ve read others have not done well on it. I eventually went off it because it made me tired and I was already struggling with low energy/extreme fatigue. Have you been tested for peripheral artery disease or had your iron/b12 levels checked?
Hello, I am new to this , I had a skin biopsy showing I was positive to small fiber peripheral neuropathy. I get excruciating legs and feet cramps. I take magnesium tablets, I wear cotton socks up to the knees day and nights. I take salt water, and bananas. When I start walking( not much) for exercise my feet start cramping. It’s difficult to explain to others why I have to sit down and massage the area. I haven’t been able to travel in two years due to the excruciating burning pain in both legs. I also have cramps in my left arm and hand. I have other issues but I am at a loss about what to do, specially at night when the pain is a nightmare.. thanks for listening.
@unhealed44
P.S. I should have clarified. Compression socks should be up to thigh level. If the band is at/under knee joint, it can restrict blood flow plus also press on nerves that may make your cramping and burning worse. Epsom salt bath soaks may be good for your feet/calves/legs. Just be careful not to take to warm/hot baths or showers because I think the swelling in tissues aggravates small fibers and blood vessels. I remember having extreme pain in my feet when I walked in warm/hot days. The heat seemed to really aggravate my small fibers in my feet/calves.
@unhealed44
P.S. I should have clarified. Compression socks should be up to thigh level. If the band is at/under knee joint, it can restrict blood flow plus also press on nerves that may make your cramping and burning worse. Epsom salt bath soaks may be good for your feet/calves/legs. Just be careful not to take to warm/hot baths or showers because I think the swelling in tissues aggravates small fibers and blood vessels. I remember having extreme pain in my feet when I walked in warm/hot days. The heat seemed to really aggravate my small fibers in my feet/calves.
Hello@ dlydailyhope,
I stopped wearing socks because my skin is very sensitive to fabric, so no worries about that. I was recently diagnosed with a large hiatal hernia they want to do surgery and , I am in such a pain I don’t know if I will be able to stand the after surgery pain. I can not lie down in bed, the pain is worse at night, I bought a therapeutic table and it is made of stretchy leather and with a comforter underneath, I can really sleep 8 hours+ in that hard surface. I was born with scoliosis which is stable, I have a curve of 34 now. I get back pain too. I take Pregabalin for pain and able to walk inside my house. I am going to start a diet without caffeine and eventually I will have to get the surgery because I am bleeding inside from some ulcers and erosions around my esophagus. I got no reflux and my oh is good but I had developed severe anemia due to the bleeding. In order to get well I must walk and exercise some, I have to push myself to walk in the treadmill to gain strength and get ready for the hernia repair so the anemia will not come back. And with more strength , I can recover sooner to continue being active, as before. Thanks for listening.
Hello@ dlydailyhope,
I stopped wearing socks because my skin is very sensitive to fabric, so no worries about that. I was recently diagnosed with a large hiatal hernia they want to do surgery and , I am in such a pain I don’t know if I will be able to stand the after surgery pain. I can not lie down in bed, the pain is worse at night, I bought a therapeutic table and it is made of stretchy leather and with a comforter underneath, I can really sleep 8 hours+ in that hard surface. I was born with scoliosis which is stable, I have a curve of 34 now. I get back pain too. I take Pregabalin for pain and able to walk inside my house. I am going to start a diet without caffeine and eventually I will have to get the surgery because I am bleeding inside from some ulcers and erosions around my esophagus. I got no reflux and my oh is good but I had developed severe anemia due to the bleeding. In order to get well I must walk and exercise some, I have to push myself to walk in the treadmill to gain strength and get ready for the hernia repair so the anemia will not come back. And with more strength , I can recover sooner to continue being active, as before. Thanks for listening.
@unhealed44
I feel for you. You are managing a lot. I had iron deficiency due to heavy menstrual cycles plus I have esophagitis and gastritis. They needs to do a d&c and put in an IUD to stop the blood loss and I am taking omeprazole for my stomach. I cannot take NSAIDs but Tylenol doesn’t do much for me and my spinal stenosis/DDD and osteoarthritis. I am supposed to get my gallbladder removed because it stopped working and causes pain in my abdomen. I am also supposed to get lumbar spine surgery and may need hamstring surgery to repair significant tears in both legs. The last thing I want to do is have more surgery. I already had 3 surgeries 2022-2023. I agree with you that day to day is hard enough and even if surgery is supposed to help, it is going to make day to day even more difficult to manage while recovering from surgery. I’m a single parent of a 14 year old son with no family so not sure who will be able to help me manage everything (son, dogs, cats, home, transportation, etc.) if I am out of commission for an extended period of time. My other surgeries were not too bad or long recoveries but I am worse now than then so recovery may be more difficult. Best wishes to you getting healthy enough for surgery and easier recovery.
Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.
How long have you been dealing with peripheral neuropathy?
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I have Charlotte Marie Tooth (CMT) disease which is rare and inherited. I inherited the disease from my Mother. The disease showed up during my recovery of Sepsis in 2020. I continue to have difficulty walking and now require an electric wheelchair for distances beyond a city block. There are 5 types of CMT. My type for most part includes Long Fibre Neuropathy and Chronic Fatigue. I believe at last count there were 2600 diagnosed CMT patients. Have you been diagnosed by a Neurologist?
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2 ReactionsHello, I am new to this , I had a skin biopsy showing I was positive to small fiber peripheral neuropathy. I get excruciating legs and feet cramps. I take magnesium tablets, I wear cotton socks up to the knees day and nights. I take salt water, and bananas. When I start walking( not much) for exercise my feet start cramping. It’s difficult to explain to others why I have to sit down and massage the area. I haven’t been able to travel in two years due to the excruciating burning pain in both legs. I also have cramps in my left arm and hand. I have other issues but I am at a loss about what to do, specially at night when the pain is a nightmare.. thanks for listening.
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5 ReactionsHello @unhealed44, Welcome to Connect. You are not alone. I think we have all been there being at a loss about what to do when it comes to neuropathy. That's how I found Connect after being diagnosed with neuropathy back in 2016. I am one of the fortunate ones that don't have the pain but the numbness can be also be a pain to deal with so to speak. The best suggestion I have is to continue learning what you can about your condition, symptoms and treatments that are available that might help.
Here's a link to discussions and comments by other members that have cramping in their feet along with other symptoms similar to yours. It might be helpful to scan through them to see if anything sounds similar - https://connect.mayoclinic.org/search/discussions/?search=feet%20cramping.
I'm guessing you are making sure to stay hydrated and drink plenty of water during the day.
Has your doctor or neurologist offered any suggestions to help with the cramping?
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1 ReactionI have post herpetic neuralgia. I am getting better. I follow a strict diet, take gabapentin and accupuncture.
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2 Reactions@unhealed44
I am 54 and diagnosed with idiopathic small fiber neuropathy almost 8 years ago. I had severe burning, pins and needles in bottoms of my feet and numbness in calves. I would have restless leg syndrome at night in bed. I take alpha Lipoic acid and Acetyl l carnitine supplements which has reduced burning and pins and needles in my feet. I take only 100 mg gabapentin but don’t like that it makes me dizzy. Nerve pain creams like capsaicin and lidocaine help relieve some symptoms so you can sleep at night. I would be careful with knee high socks. I read that the band around/under your knee joint can cut off blood circulation which would make cramping worse. If you want to wear compression socks, I read that they should be over the knee. I was out on Cymbalta/duloxetine for nerve and arthritis pain and it helped me when on it but I’ve read others have not done well on it. I eventually went off it because it made me tired and I was already struggling with low energy/extreme fatigue. Have you been tested for peripheral artery disease or had your iron/b12 levels checked?
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1 Reaction@unhealed44
P.S. I should have clarified. Compression socks should be up to thigh level. If the band is at/under knee joint, it can restrict blood flow plus also press on nerves that may make your cramping and burning worse. Epsom salt bath soaks may be good for your feet/calves/legs. Just be careful not to take to warm/hot baths or showers because I think the swelling in tissues aggravates small fibers and blood vessels. I remember having extreme pain in my feet when I walked in warm/hot days. The heat seemed to really aggravate my small fibers in my feet/calves.
Hello@ dlydailyhope,
I stopped wearing socks because my skin is very sensitive to fabric, so no worries about that. I was recently diagnosed with a large hiatal hernia they want to do surgery and , I am in such a pain I don’t know if I will be able to stand the after surgery pain. I can not lie down in bed, the pain is worse at night, I bought a therapeutic table and it is made of stretchy leather and with a comforter underneath, I can really sleep 8 hours+ in that hard surface. I was born with scoliosis which is stable, I have a curve of 34 now. I get back pain too. I take Pregabalin for pain and able to walk inside my house. I am going to start a diet without caffeine and eventually I will have to get the surgery because I am bleeding inside from some ulcers and erosions around my esophagus. I got no reflux and my oh is good but I had developed severe anemia due to the bleeding. In order to get well I must walk and exercise some, I have to push myself to walk in the treadmill to gain strength and get ready for the hernia repair so the anemia will not come back. And with more strength , I can recover sooner to continue being active, as before. Thanks for listening.
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2 Reactions@unhealed44
I feel for you. You are managing a lot. I had iron deficiency due to heavy menstrual cycles plus I have esophagitis and gastritis. They needs to do a d&c and put in an IUD to stop the blood loss and I am taking omeprazole for my stomach. I cannot take NSAIDs but Tylenol doesn’t do much for me and my spinal stenosis/DDD and osteoarthritis. I am supposed to get my gallbladder removed because it stopped working and causes pain in my abdomen. I am also supposed to get lumbar spine surgery and may need hamstring surgery to repair significant tears in both legs. The last thing I want to do is have more surgery. I already had 3 surgeries 2022-2023. I agree with you that day to day is hard enough and even if surgery is supposed to help, it is going to make day to day even more difficult to manage while recovering from surgery. I’m a single parent of a 14 year old son with no family so not sure who will be able to help me manage everything (son, dogs, cats, home, transportation, etc.) if I am out of commission for an extended period of time. My other surgeries were not too bad or long recoveries but I am worse now than then so recovery may be more difficult. Best wishes to you getting healthy enough for surgery and easier recovery.
Almost 2 years. I had a hip replacement and my sciatic nerve was damaged.