Welcome @teddyjoe, I have thought about one of the near infrared therapy saunas to see if it would help but I didn't get one, mostly due to cost. There are a couple of discussions you might find helpful.
This clinical trial was terminated due to unable to enroll enough patients - Near Infrared Light for the Treatment of Painful Peripheral Neuropathy: https://clinicaltrials.gov/ct2/show/NCT00125268.
You can search for other clinical trials here - https://clinicaltrials.gov/. Can you share what LED treatment you were reading about?
I have it from my Dad. The bottoms of my feet feel like they are cardboard. I’m seeing a neurologist who says the myelin around my nerves are shredding causing the pain and numbness. Going for a brain mri next and lots of blood tests and then I’ll get a definite diagnosis and what to do for it.
@luvpsu10, I know you're not alone with your feeling about starting new medications when it comes to possible side effects. I'm not sure if you've seen this discussion started by @laurask who may have some thoughts or experience to share with you.
-- Axonal Sensorimotor Polyneuropathy: Looking for someone to relate: https://connect.mayoclinic.org/discussion/someone-to-relate/
I am non diabetic and have Idiopathic Chronic Axonal Polyneuropathy. I am currently using Medical Marijuana capsules and Tylenol Arthritis for nerve pain. Am very leery of staring Cymbalta, Tramadol, Neurontin, or Lyrica due to side effects as very sensitive to medications.
I am non diabetic and have Idiopathic Chronic Axonal Polyneuropathy. I am currently using Medical Marijuana capsules and Tylenol Arthritis for nerve pain. Am very leery of staring Cymbalta, Tramadol, Neurontin, or Lyrica due to side effects as very sensitive to medications.
Thanks for asking. I use a Nano technology capsule that is 2.5 mg of CBD and 2.5 mg of THC daily. On this bad days, I use a 5 mg CBD/THC capsule. The nano capsule act within 30 minutes and last up to 8 hours. Oil based capsules do not work as good for me and harsher on my stomach as well. Nano capsules are water based.
Hello @user_ch98d0b5c -- I read from your earlier post that you do not know what the cause is for your peripheral neuropathy. I also have idiopathic small fiber peripheral neuropathy. They suspect hereditary but don't know. You also mentioned you have an upcoming appointment at John Hopkins with Dr. Hoke in September. I know it must be frustrating waiting and wanting some answers.
@user_ch98d0b5c have you found anything that helps with the pain?
I've found that I always wear socks, even at night. I mainly do this because I can't tell if my feet have been injured when I step on something walking around the house. I've found that socks made with bamboo fiber are really soft, stretchy and very easy to put on and take off. I guess they probably wouldn't help you if you can only wear flip flops. Have you tried any kind of shoe that doesn't cause you pain?
I was not sure by the title of your discussion if you were trying to locate members who do not have diabetic neuropathy or that do have diabetic neuropathy?
I'm Charlotte @charlie807, I'm a patient with neuropathy without diabetes. Mine was calll didn't check my nerves after surgery. I was in just as much pain after surgery plus my right leg was numb. I have pain in my feet sometimes sometimes my feet are so cold nothing warms them, then sometimes they are so hot I can't warm them. Only at night ! I cannot wear socks they feel as if my feet are on fire. I have one pair that's fine. Shoes I have one pair of shoes I can wear without feeling like my foot will break. I'm losing the feeling in both feet so balance is a big problem. My pain doctors tell me all research is being done for diabetics. This is very hard, very scary and the pain is awful and nothing really helps. Very depressing!
I'm Charlotte @charlie807, I'm a patient with neuropathy without diabetes. Mine was calll didn't check my nerves after surgery. I was in just as much pain after surgery plus my right leg was numb. I have pain in my feet sometimes sometimes my feet are so cold nothing warms them, then sometimes they are so hot I can't warm them. Only at night ! I cannot wear socks they feel as if my feet are on fire. I have one pair that's fine. Shoes I have one pair of shoes I can wear without feeling like my foot will break. I'm losing the feeling in both feet so balance is a big problem. My pain doctors tell me all research is being done for diabetics. This is very hard, very scary and the pain is awful and nothing really helps. Very depressing!
Hello Charlotte @charlie807, Welcome to Connect. You are right, it is scary and difficult when you are in pain and nothing seems to help. Unrelenting pain, cold and hot feet along with many other awful symptoms is something that a lot of Connect members in the Neuropathy Support Group can relate to and know what you are feeling. The best thing you can do to help yourself is to learn as much as you can about your condition and what treatments are available that might provide some relief. The following neuropathy sites are really helpful for learning more:
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview.
It sounds like your neuropathy started following a surgery? Do you mind sharing a little more about your diagnosis?
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Welcome @teddyjoe, I have thought about one of the near infrared therapy saunas to see if it would help but I didn't get one, mostly due to cost. There are a couple of discussions you might find helpful.
-- Laser Therapy for Neuropathy: https://connect.mayoclinic.org/discussion/neuropathy-1/
-- Infrared Sauna Treatment for PN: https://connect.mayoclinic.org/discussion/infrared-sauna-treatment-for-pn/.
This clinical trial was terminated due to unable to enroll enough patients - Near Infrared Light for the Treatment of Painful Peripheral Neuropathy: https://clinicaltrials.gov/ct2/show/NCT00125268.
You can search for other clinical trials here - https://clinicaltrials.gov/. Can you share what LED treatment you were reading about?
I have it from my Dad. The bottoms of my feet feel like they are cardboard. I’m seeing a neurologist who says the myelin around my nerves are shredding causing the pain and numbness. Going for a brain mri next and lots of blood tests and then I’ll get a definite diagnosis and what to do for it.
I have not seen. Thanks for letting me know!
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1 ReactionI take Lyrica an Pregabalin an haven't had any side affects
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1 ReactionWhich kind of Medical Marijuana capsules?
I have a card and would be interested in your using them.
Thanks for asking. I use a Nano technology capsule that is 2.5 mg of CBD and 2.5 mg of THC daily. On this bad days, I use a 5 mg CBD/THC capsule. The nano capsule act within 30 minutes and last up to 8 hours. Oil based capsules do not work as good for me and harsher on my stomach as well. Nano capsules are water based.
Sorry that the response did not directly to you. My response is in the thread. Hope it is helpful.
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2 ReactionsThanks! I got it, didn't see it thee 1st time.
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1 ReactionI'm Charlotte @charlie807, I'm a patient with neuropathy without diabetes. Mine was calll didn't check my nerves after surgery. I was in just as much pain after surgery plus my right leg was numb. I have pain in my feet sometimes sometimes my feet are so cold nothing warms them, then sometimes they are so hot I can't warm them. Only at night ! I cannot wear socks they feel as if my feet are on fire. I have one pair that's fine. Shoes I have one pair of shoes I can wear without feeling like my foot will break. I'm losing the feeling in both feet so balance is a big problem. My pain doctors tell me all research is being done for diabetics. This is very hard, very scary and the pain is awful and nothing really helps. Very depressing!
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Helpful -
Hug
4 ReactionsHello Charlotte @charlie807, Welcome to Connect. You are right, it is scary and difficult when you are in pain and nothing seems to help. Unrelenting pain, cold and hot feet along with many other awful symptoms is something that a lot of Connect members in the Neuropathy Support Group can relate to and know what you are feeling. The best thing you can do to help yourself is to learn as much as you can about your condition and what treatments are available that might provide some relief. The following neuropathy sites are really helpful for learning more:
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview.
It sounds like your neuropathy started following a surgery? Do you mind sharing a little more about your diagnosis?
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Helpful -
Hug
4 Reactions