Dustin, I really feel for you and will add you to my prayers. I have idiopathic peripheral neuropahathy in my hands and feet. Sometimes they burn like they are on fire. The doctors ran some blood tests, but that is all they have done leaving me with no relief. Your troubles make mine seem minimal. Bless you.
Neuropathy is no joke. We understand what it's like but people who have not experienced it dont understand to the extent of how debilitating it can be. I wish they could find a cause for why we have it so we can fix the issue to get the neuropathy under control.
One thing that helps me deal with the pain is to stay positive and try to keep a smile on my face. Also my almost 4 year old little girl and my very supportive wife helps.
Hello everyone. I am new here. I have just been officially diagnosed with severe idiopathic small fiber neuropathy. I had the biopsy done as well and multiple of test including blood and urine test to try and find a cause. They were not able to find a cause. I have it in my feet, legs, midsection including most of the groin, hands, arms, and face. Always have tingling in those regions except my upper legs and groin I am numb. Hand and feet are the worst when it flares up. It's like I am repeatedly being stabbed with knives nonstop for the length of the flare up. The flare ups last anywhere between 10 minutes to many hours.
I have been having that feeling for years but I have also has cervical and lumbar issues which both required surgery. Had fusion of the c5-c7 and anterior/posterior fusion of the L3-S1. These did not cause the small fiber according to the doctors. I have to go for my sixth surgery in 6 years in a week and a half to get a spinal cord stimulator for the lumbar region, it does provide some help with the pain in my feet. My bladder is shot and had a cystoscopy and video urodynamic study and my bladder muscles barely function. I have to go for the trial of interstim stimulator to see if it helps. I also have to meet with the pain specialist to discuss long term for dealing with the pain. Gabapentin does not work and I get bad side effects.
Sorry for going on and on.
Thank you for listening (reading).
Dustin
Hello @dustins76, welcome to Mayo Clinic Connect. I have idiopathic small fiber PN also. Thanks for sharing your health concerns. I think it helps to know that you are not alone. I hope you find some relief with the stimulator.
Can you let us know how the stimulator works for you when you get it?
Hello everyone. I am new here. I have just been officially diagnosed with severe idiopathic small fiber neuropathy. I had the biopsy done as well and multiple of test including blood and urine test to try and find a cause. They were not able to find a cause. I have it in my feet, legs, midsection including most of the groin, hands, arms, and face. Always have tingling in those regions except my upper legs and groin I am numb. Hand and feet are the worst when it flares up. It's like I am repeatedly being stabbed with knives nonstop for the length of the flare up. The flare ups last anywhere between 10 minutes to many hours.
I have been having that feeling for years but I have also has cervical and lumbar issues which both required surgery. Had fusion of the c5-c7 and anterior/posterior fusion of the L3-S1. These did not cause the small fiber according to the doctors. I have to go for my sixth surgery in 6 years in a week and a half to get a spinal cord stimulator for the lumbar region, it does provide some help with the pain in my feet. My bladder is shot and had a cystoscopy and video urodynamic study and my bladder muscles barely function. I have to go for the trial of interstim stimulator to see if it helps. I also have to meet with the pain specialist to discuss long term for dealing with the pain. Gabapentin does not work and I get bad side effects.
Sorry for going on and on.
Thank you for listening (reading).
Dustin
I have very similar symptoms for about the last 4 months. I also have bad upper back issues. My short fiber neuropathy started immediately after a cervical spine steroid injection (Kenalog). I just saw a neurologist at the Cleveland Clinic who did not offer any real help. I am thinking of trying IVIG treatments for autoimmune disorder. The Cleveland Clinic doctor thought that I may have an autoimmune disorder. Has anyone tried that?
Hello everyone. I am new here. I have just been officially diagnosed with severe idiopathic small fiber neuropathy. I had the biopsy done as well and multiple of test including blood and urine test to try and find a cause. They were not able to find a cause. I have it in my feet, legs, midsection including most of the groin, hands, arms, and face. Always have tingling in those regions except my upper legs and groin I am numb. Hand and feet are the worst when it flares up. It's like I am repeatedly being stabbed with knives nonstop for the length of the flare up. The flare ups last anywhere between 10 minutes to many hours.
I have been having that feeling for years but I have also has cervical and lumbar issues which both required surgery. Had fusion of the c5-c7 and anterior/posterior fusion of the L3-S1. These did not cause the small fiber according to the doctors. I have to go for my sixth surgery in 6 years in a week and a half to get a spinal cord stimulator for the lumbar region, it does provide some help with the pain in my feet. My bladder is shot and had a cystoscopy and video urodynamic study and my bladder muscles barely function. I have to go for the trial of interstim stimulator to see if it helps. I also have to meet with the pain specialist to discuss long term for dealing with the pain. Gabapentin does not work and I get bad side effects.
Sorry for going on and on.
Thank you for listening (reading).
Dustin
I have very similar symptoms for about the last 4 months. I also have bad upper back issues. My short fiber neuropathy started immediately after a cervical spine steroid injection (Kenalog). I just saw a neurologist at the Cleveland Clinic who did not offer any real help. I am thinking of trying IVIG treatments for autoimmune disorder. The Cleveland Clinic doctor thought that I may have an autoimmune disorder. Has anyone tried that?
I've had IVIG treatments for over 2 years for CIDP and small fiber neuropathy. A neurologist has to recommend IVIG for your condition. Insurances are not always receptive because it is an expensive treatment. Most doctors won't push for this treatment for small fiber neuropathy unless all other drug options have been exhausted.
Neuropathy is no joke. We understand what it's like but people who have not experienced it dont understand to the extent of how debilitating it can be. I wish they could find a cause for why we have it so we can fix the issue to get the neuropathy under control.
One thing that helps me deal with the pain is to stay positive and try to keep a smile on my face. Also my almost 4 year old little girl and my very supportive wife helps.
Hello everyone. I am new here. I have just been officially diagnosed with severe idiopathic small fiber neuropathy. I had the biopsy done as well and multiple of test including blood and urine test to try and find a cause. They were not able to find a cause. I have it in my feet, legs, midsection including most of the groin, hands, arms, and face. Always have tingling in those regions except my upper legs and groin I am numb. Hand and feet are the worst when it flares up. It's like I am repeatedly being stabbed with knives nonstop for the length of the flare up. The flare ups last anywhere between 10 minutes to many hours.
I have been having that feeling for years but I have also has cervical and lumbar issues which both required surgery. Had fusion of the c5-c7 and anterior/posterior fusion of the L3-S1. These did not cause the small fiber according to the doctors. I have to go for my sixth surgery in 6 years in a week and a half to get a spinal cord stimulator for the lumbar region, it does provide some help with the pain in my feet. My bladder is shot and had a cystoscopy and video urodynamic study and my bladder muscles barely function. I have to go for the trial of interstim stimulator to see if it helps. I also have to meet with the pain specialist to discuss long term for dealing with the pain. Gabapentin does not work and I get bad side effects.
Sorry for going on and on.
Thank you for listening (reading).
Dustin
@dustins76
Dustin, it is a maizing you are upright. I do not have nor have I ever had what you have, you may just keep it. So, what I say you do not have to believe. I have some neuropathy from my 2 strikes, my body and brain are not talking with each other at the same time. It can also be true for anyone who has surgery on their back, the messages from the body goes through the spine to get to the brain. (Talk about the "bug" that was found in the "walk in" computer that shut in down.) You could have a "bug" that is causing all your problems. Now, if you believe that I have this bridge I want to talk with you about.
I believe we are ahead of the medical community. The brain is still a mystery to most of the doctors, it may take another 10 years before doctors finally get through medical school and understand the brain better and how it works. Keeping a journal is all we can do and share it with anyone and everyone who wants to read it. I have educated a few doctors because I keep at it. If explaining something one way does not work I will try another way (with more information) the next time I see the doctor. The more you know when something happened and what you were doing before it happened the better you may be able to figure out the relationship between the two. If there is one.
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Neuropathy is no joke. We understand what it's like but people who have not experienced it dont understand to the extent of how debilitating it can be. I wish they could find a cause for why we have it so we can fix the issue to get the neuropathy under control.
One thing that helps me deal with the pain is to stay positive and try to keep a smile on my face. Also my almost 4 year old little girl and my very supportive wife helps.
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2 ReactionsHello @dustins76, welcome to Mayo Clinic Connect. I have idiopathic small fiber PN also. Thanks for sharing your health concerns. I think it helps to know that you are not alone. I hope you find some relief with the stimulator.
Can you let us know how the stimulator works for you when you get it?
John
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2 ReactionsI have very similar symptoms for about the last 4 months. I also have bad upper back issues. My short fiber neuropathy started immediately after a cervical spine steroid injection (Kenalog). I just saw a neurologist at the Cleveland Clinic who did not offer any real help. I am thinking of trying IVIG treatments for autoimmune disorder. The Cleveland Clinic doctor thought that I may have an autoimmune disorder. Has anyone tried that?
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1 ReactionWe are listening. You are not just going on and on. Tell us more as you learn more so we have an opportunity to be supportive. Be safe.
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3 ReactionsWondering if a feeling of being sweaty, clammy and damp all the time even though my clothes and skin feels dry is a neural phenomenon.
Hi @lakelifelady, Mayo Clinic has a symptom checker that may help you figure out what might be causing the problem.
https://www.mayoclinic.org/symptom-checker/select-symptom/itt-20009075
Have you discussed the symptoms with your doctor?
John
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1 ReactionI've had IVIG treatments for over 2 years for CIDP and small fiber neuropathy. A neurologist has to recommend IVIG for your condition. Insurances are not always receptive because it is an expensive treatment. Most doctors won't push for this treatment for small fiber neuropathy unless all other drug options have been exhausted.
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1 ReactionThe pain is debilitating, I agree. What I do to stay positive is to practice gratefulness throughout the day. Keeping a greatful journal helps too.
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2 Reactions@dustins76
Dustin, it is a maizing you are upright. I do not have nor have I ever had what you have, you may just keep it. So, what I say you do not have to believe. I have some neuropathy from my 2 strikes, my body and brain are not talking with each other at the same time. It can also be true for anyone who has surgery on their back, the messages from the body goes through the spine to get to the brain. (Talk about the "bug" that was found in the "walk in" computer that shut in down.) You could have a "bug" that is causing all your problems. Now, if you believe that I have this bridge I want to talk with you about.
I believe we are ahead of the medical community. The brain is still a mystery to most of the doctors, it may take another 10 years before doctors finally get through medical school and understand the brain better and how it works. Keeping a journal is all we can do and share it with anyone and everyone who wants to read it. I have educated a few doctors because I keep at it. If explaining something one way does not work I will try another way (with more information) the next time I see the doctor. The more you know when something happened and what you were doing before it happened the better you may be able to figure out the relationship between the two. If there is one.
Good luck,
mlmcg
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1 ReactionThank you for the name referral of Dr. Oaklander. I will definitely check her out!