I've had it for three years and it has gotten progressively worse. I can't tolerate standard medication like Lyrica, Gabapentin, blood tests up to now haven't been helpful in identifying cause. Will be having more blood tests and spinal tap but getting pessimistic tht this will remain idiopathic with my ending up in a wheel chair or worse–Alan
Love your response – PN is what it is….no matter what the etiology! If you are willing to deal with the side effects of the drugs that can be prescribed, that's great. Otherwise – There are alternate ways to deal with the discomfort – even meditation – tho' it might take awhile to get your mind to that place.
Thanks so much for this info, Johnhans. Nobody in my family I know of has the condition and I dont have the info about large bundle or small fibre, which i will now ask about. Thanks again.
I was diagnosed with idiopathic peripheral neuropathy about three years ago. It started with just slight tingling in toes and in stages has progessed to painful stinging, pins and needles in both feet and now working its way up both legs. I've tried standard palliative medications, Lyrica, Gabapentin, etc and have tolrance problems with them. Nothing in blood tests so far identifies a suspect cause and now my doctor has ordered additional blood tests and a spinal tap. For these additional blood tests I'm told expense could be considerable, depending on my insurance, but here is bottom line for me. I am under impression that it is unusual to find treatable cause for IPN, which is why such a high percentage of cases remain idiopathic, and at any point process could accelerate to where i need a wheel chair or even face major organ failure. This scares the heck out of me. I'm a 77-year-old man otherwise in good health and I've got a few more things I'd very much to do in this life before I join my ancestors in the sky. I'm not sure of the mechanics of this groups so I'm just going to post this and see what comes back. I think there's a moderator in here somewhere. I have enormous respect for the Mayo Clinic and I was so glad to find this group. There's so much questionable stuff out there on line on this subject and and just about any other.
The statin reference is interesting. I hadn't seen anything on that before. I put off taking a statin for many years despite high bad cholesterol because scans showed relatively clear arteries and I always assume docs over-prescribe. About two months ago I allowed a cardiologist, who was very persistent, patient and polite, to put me on a very low dose statin. About a month ago the neuropathy began ticking up from feet into legs. Probabliy a coincidence. Everything considered, I think the statin was the right decision. But I'm going to ask the cardioligist about this issue when I see him in a couple of months for review of routine statin-monitoring blood work. He's a smart young guy, one of those too rare docs who will spend considerable time tol reason with the patient rather than just pulling MD rank :
I was diagnosed with idiopathic peripheral neuropathy about three years ago. It started with just slight tingling in toes and in stages has progessed to painful stinging, pins and needles in both feet and now working its way up both legs. I've tried standard palliative medications, Lyrica, Gabapentin, etc and have tolrance problems with them. Nothing in blood tests so far identifies a suspect cause and now my doctor has ordered additional blood tests and a spinal tap. For these additional blood tests I'm told expense could be considerable, depending on my insurance, but here is bottom line for me. I am under impression that it is unusual to find treatable cause for IPN, which is why such a high percentage of cases remain idiopathic, and at any point process could accelerate to where i need a wheel chair or even face major organ failure. This scares the heck out of me. I'm a 77-year-old man otherwise in good health and I've got a few more things I'd very much to do in this life before I join my ancestors in the sky. I'm not sure of the mechanics of this groups so I'm just going to post this and see what comes back. I think there's a moderator in here somewhere. I have enormous respect for the Mayo Clinic and I was so glad to find this group. There's so much questionable stuff out there on line on this subject and and just about any other.
Statin's are definitely not good for you if you have PN. Even though my Mayo neurologist thinks my small fiber peripheral neuropathy is idiopathic and possible genetic I've long thought it's at least partially caused by statins. I took a statin for years along with a couple of other drugs for high blood pressure before I started feeling the tingling in my toes then feet. Here's a few research links I've found to support statins are bad for PN.
Thanks so much for this info, Johnhans. Nobody in my family I know of has the condition and I dont have the info about large bundle or small fibre, which i will now ask about. Thanks again.
Welcome, Alan. I was diagnosed with peripheral neuropathy 15+ years ago, with some numbness and tingling. The pain hit hard in 2015. Since then I've tried every medication for neuropathy and nothing helped, and most had undesirable side effects. I see a neurologist, a pain specialist, a therapist, a physical therapist and my pcp. Along the way I've also seen a cardiologist, and I had a spinal cord stimulator implant in June of last year.
I've been taking mscontin for several years, up to 30mg tid. After the implant, I reduced the morphine and am trying to get by with just 15mg in the morning, though my prescription is for 3 a day. When I'm going to be on my feet a lot, I will take a second one midday.
The Burst DR stimulator reduced my pain by around 75%, but I need periodic adjustments. With the Burst DR technology you don't feel any vibration that the older stimulators produced, which I understand is unpleasant and becomes intolerable.
I have a prescription lidocaine cream that I often put on my feet at bedtime. Usually it numbs my feet enough so I can get to sleep. Capzasin cream is helpful to many people, but it didn't help me.
I recently learned that I have both small fiber and autonomic peripheral neuropathy. The burning pain is in my feet, but I have some loss of sensation in my hands and face, and autonomic neuropathy is possibly the cause of or a contributor to several other issues I deal with, including double vision, tinnitus, esophageal dysmotility, lack of coordination in the base of my tongue, silent GERD, urinary issues, bowel issues and sexual dysfunction. I'm beginning to notice balance problems sometimes and foot drop.
My research indicates that progression of neuropathy is highly individualized, and it is rarely totally disabling, and even more rarely terminal. Of course, we're all terminal. It's part of the cycle of life.
I'm waiting to hear from a neuro specialist in Portland, OR, to see me and hopefully answer some of my questions about the involvement of neuropathy in these other things and to try to get an idea of what the progression will look like. I'm also hoping that he might have some other treatment options that the local doctors haven't tried.
I've been seeing therapists for more than 12 years for depression, PTSD, anxiety and suicidal ideation. These mental health issues complicate how I deal with pain and other physical conditions. I'm working on taking it all a day at a time, more or less, and not project the worst case scenario, which is typical of someone with mental illness.
I wish you the best in finding answers.
BTW, the one medication that was helping with the pain was Lyrica. Unfortunately, the side effects put me in the hospital. Bummer!
I'm going to be 68 in August, but because of mental illness I had to retire on Social Security disability when I was 56. Physically, I was in good health at the time, sleep apnea being my only concern. It's a challenge to grow older and have illnesses begin to pile up. I'm blessed to have several good doctors who take a genuine concern for my health.
Thanks so much for this info, Johnhans. Nobody in my family I know of has the condition and I dont have the info about large bundle or small fibre, which i will now ask about. Thanks again.
Thanks for all this, Jim. I also have a prescription lidocaine cream that works well for my feet, though as I noted the most recent development in my case is the spread of the pain from my feet all the way up my legs to the thighs. The pain isn't as intense as that in the feet–yet–but enough discomfort so that I've had to start using the cream on my legs as well. The distressing part of it is how rapidly it's happened. This change in the legs started just a week ago and gets worse every day. The condition of the feet had been fairly stable for about a year. As you and just about everyone says, this thing is very individualized and unpredictable.–Alan
I was diagnosed with idiopathic peripheral neuropathy about three years ago. It started with just slight tingling in toes and in stages has progessed to painful stinging, pins and needles in both feet and now working its way up both legs. I've tried standard palliative medications, Lyrica, Gabapentin, etc and have tolrance problems with them. Nothing in blood tests so far identifies a suspect cause and now my doctor has ordered additional blood tests and a spinal tap. For these additional blood tests I'm told expense could be considerable, depending on my insurance, but here is bottom line for me. I am under impression that it is unusual to find treatable cause for IPN, which is why such a high percentage of cases remain idiopathic, and at any point process could accelerate to where i need a wheel chair or even face major organ failure. This scares the heck out of me. I'm a 77-year-old man otherwise in good health and I've got a few more things I'd very much to do in this life before I join my ancestors in the sky. I'm not sure of the mechanics of this groups so I'm just going to post this and see what comes back. I think there's a moderator in here somewhere. I have enormous respect for the Mayo Clinic and I was so glad to find this group. There's so much questionable stuff out there on line on this subject and and just about any other.
@alanhny– I had PN mostly in my feet and it got worst enough that if I walked any more than a 1/2 mile my feet would go numb. The drs. tried all kinds of tests and found nothing. I kept saying from what I have read it had to be the statin drug. The drs. kept saying no, it would'nt be that. I finally told my dr. lets try another statin then. I was taking 40 my of simistatin and swithed to 40 mg of atorvastin. I have hardly any more numbness and can walk for miles now. Go figure! These drs. seem to know only so much when it comes to drugs. I believe in taking a statins, but lets use some common sense!
I was diagnosed with idiopathic peripheral neuropathy about three years ago. It started with just slight tingling in toes and in stages has progessed to painful stinging, pins and needles in both feet and now working its way up both legs. I've tried standard palliative medications, Lyrica, Gabapentin, etc and have tolrance problems with them. Nothing in blood tests so far identifies a suspect cause and now my doctor has ordered additional blood tests and a spinal tap. For these additional blood tests I'm told expense could be considerable, depending on my insurance, but here is bottom line for me. I am under impression that it is unusual to find treatable cause for IPN, which is why such a high percentage of cases remain idiopathic, and at any point process could accelerate to where i need a wheel chair or even face major organ failure. This scares the heck out of me. I'm a 77-year-old man otherwise in good health and I've got a few more things I'd very much to do in this life before I join my ancestors in the sky. I'm not sure of the mechanics of this groups so I'm just going to post this and see what comes back. I think there's a moderator in here somewhere. I have enormous respect for the Mayo Clinic and I was so glad to find this group. There's so much questionable stuff out there on line on this subject and and just about any other.
I took statins for years because of a family history of heart disease. Then I developed PN, and the symptoms included pain in my feet, instability, leg weakness, etc. I stopped stations, and the PN symptoms reduced substantially! I make up for the lack of statins with a low fat diet and plenty of exercise. So far my cholesteral levels are low enough.
I was diagnosed with idiopathic peripheral neuropathy about three years ago. It started with just slight tingling in toes and in stages has progessed to painful stinging, pins and needles in both feet and now working its way up both legs. I've tried standard palliative medications, Lyrica, Gabapentin, etc and have tolrance problems with them. Nothing in blood tests so far identifies a suspect cause and now my doctor has ordered additional blood tests and a spinal tap. For these additional blood tests I'm told expense could be considerable, depending on my insurance, but here is bottom line for me. I am under impression that it is unusual to find treatable cause for IPN, which is why such a high percentage of cases remain idiopathic, and at any point process could accelerate to where i need a wheel chair or even face major organ failure. This scares the heck out of me. I'm a 77-year-old man otherwise in good health and I've got a few more things I'd very much to do in this life before I join my ancestors in the sky. I'm not sure of the mechanics of this groups so I'm just going to post this and see what comes back. I think there's a moderator in here somewhere. I have enormous respect for the Mayo Clinic and I was so glad to find this group. There's so much questionable stuff out there on line on this subject and and just about any other.
Good evening Alan, welcome to our group of supportive folks who deal with idiopathic PN and SFN. In 2012 I had cervical surgery to relieve severe tingling and pain in my arms by lifting the vertebrae off the nerves and replacing discs with titanium blocks. Unfortunately, some of the nerves were so damaged that there was no chance that these slow healers would recover in my lifetime. And so …..the journey into neuropathy began. Four years later in 2016 the small fiber neuropathy skin test came back with indications of severe small fiber nerve damage and demise. Thinking that of course there would be a cure….I attempted to tough it out and maintain my active life….walking 3 miles a day and joining my friends for walking trips around the world….serving as the volunteer marketing director for a non profit development project in the small mountain village where I live and traveling with grandchildren and puppy dogs. Of course, that lifestyle came crashing down and my first foray into depression and anxiety began to control my world. As a synopsis, I will share with you the steps I have taken to improve my quality of life. 1. Let go of anger and actively grieve for the life you once had until you are able to accept reality. 2. Explore both conventional non habit forming drugs as well as alternative medications particularly medical marijuana. My journey to discover the right products and dosages has taken two years and has resulted in the availability of pain and moderate symptom control on a daily basis. 3. Find substitutes for outdoor or physical activities no longer accessible to you or for which you have to pay the price in pain. This was a major challenge that led me to the daily practice of gentle yoga, meditation and mindfulness. Embrace the possible. 4. Find a neurologist or other medical practitioner who demonstrates a desire to be your partner and with whom you are comfortable sharing your efforts and results. 5. Find joy in every day…..no matter now briefly. Notice things you haven't really seen before. Seek answers to questions you have never asked before. Care about something and /or someone. 6. Find a pain release massage therapist who understands that all of our nerves are connected so that the pain you feel in your knee may really begin somewhere else in your body. Save your pennies so you can receive this treatment often. My best to you and please keep us informed of your progress….we all care so very much.
I was diagnosed with idiopathic peripheral neuropathy about three years ago. It started with just slight tingling in toes and in stages has progessed to painful stinging, pins and needles in both feet and now working its way up both legs. I've tried standard palliative medications, Lyrica, Gabapentin, etc and have tolrance problems with them. Nothing in blood tests so far identifies a suspect cause and now my doctor has ordered additional blood tests and a spinal tap. For these additional blood tests I'm told expense could be considerable, depending on my insurance, but here is bottom line for me. I am under impression that it is unusual to find treatable cause for IPN, which is why such a high percentage of cases remain idiopathic, and at any point process could accelerate to where i need a wheel chair or even face major organ failure. This scares the heck out of me. I'm a 77-year-old man otherwise in good health and I've got a few more things I'd very much to do in this life before I join my ancestors in the sky. I'm not sure of the mechanics of this groups so I'm just going to post this and see what comes back. I think there's a moderator in here somewhere. I have enormous respect for the Mayo Clinic and I was so glad to find this group. There's so much questionable stuff out there on line on this subject and and just about any other.
So happy to hear that you are living your life to the fullest. It’s a wonderful thing when you realize you can adapt to anything with grace and humility ,thank you for being so forthcoming .
I was diagnosed with idiopathic peripheral neuropathy about three years ago. It started with just slight tingling in toes and in stages has progessed to painful stinging, pins and needles in both feet and now working its way up both legs. I've tried standard palliative medications, Lyrica, Gabapentin, etc and have tolrance problems with them. Nothing in blood tests so far identifies a suspect cause and now my doctor has ordered additional blood tests and a spinal tap. For these additional blood tests I'm told expense could be considerable, depending on my insurance, but here is bottom line for me. I am under impression that it is unusual to find treatable cause for IPN, which is why such a high percentage of cases remain idiopathic, and at any point process could accelerate to where i need a wheel chair or even face major organ failure. This scares the heck out of me. I'm a 77-year-old man otherwise in good health and I've got a few more things I'd very much to do in this life before I join my ancestors in the sky. I'm not sure of the mechanics of this groups so I'm just going to post this and see what comes back. I think there's a moderator in here somewhere. I have enormous respect for the Mayo Clinic and I was so glad to find this group. There's so much questionable stuff out there on line on this subject and and just about any other.
@artscaping– Chris, thank you for sharing the way you are handling your journey. It should be printed & framed in every Doctors office. I know for myself I will certainly save your post and reread as needed in this journey through life. God bless, @thankful– Jim
I was diagnosed with idiopathic peripheral neuropathy about three years ago. It started with just slight tingling in toes and in stages has progessed to painful stinging, pins and needles in both feet and now working its way up both legs. I've tried standard palliative medications, Lyrica, Gabapentin, etc and have tolrance problems with them. Nothing in blood tests so far identifies a suspect cause and now my doctor has ordered additional blood tests and a spinal tap. For these additional blood tests I'm told expense could be considerable, depending on my insurance, but here is bottom line for me. I am under impression that it is unusual to find treatable cause for IPN, which is why such a high percentage of cases remain idiopathic, and at any point process could accelerate to where i need a wheel chair or even face major organ failure. This scares the heck out of me. I'm a 77-year-old man otherwise in good health and I've got a few more things I'd very much to do in this life before I join my ancestors in the sky. I'm not sure of the mechanics of this groups so I'm just going to post this and see what comes back. I think there's a moderator in here somewhere. I have enormous respect for the Mayo Clinic and I was so glad to find this group. There's so much questionable stuff out there on line on this subject and and just about any other.
@alanhny– My wife realized I had reversed the Statins in my post. It should be that I started with Atorvastatin and am now on Simvastatin. Sorry for the misinfomation.
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Love your response – PN is what it is….no matter what the etiology! If you are willing to deal with the side effects of the drugs that can be prescribed, that's great. Otherwise – There are alternate ways to deal with the discomfort – even meditation – tho' it might take awhile to get your mind to that place.
Thanks so much for this info, Johnhans. Nobody in my family I know of has the condition and I dont have the info about large bundle or small fibre, which i will now ask about. Thanks again.
The statin reference is interesting. I hadn't seen anything on that before. I put off taking a statin for many years despite high bad cholesterol because scans showed relatively clear arteries and I always assume docs over-prescribe. About two months ago I allowed a cardiologist, who was very persistent, patient and polite, to put me on a very low dose statin. About a month ago the neuropathy began ticking up from feet into legs. Probabliy a coincidence. Everything considered, I think the statin was the right decision. But I'm going to ask the cardioligist about this issue when I see him in a couple of months for review of routine statin-monitoring blood work. He's a smart young guy, one of those too rare docs who will spend considerable time tol reason with the patient rather than just pulling MD rank :
Statin's are definitely not good for you if you have PN. Even though my Mayo neurologist thinks my small fiber peripheral neuropathy is idiopathic and possible genetic I've long thought it's at least partially caused by statins. I took a statin for years along with a couple of other drugs for high blood pressure before I started feeling the tingling in my toes then feet. Here's a few research links I've found to support statins are bad for PN.
The implications of statin induced peripheral neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3103035/
Statin Neuropathy Masquerading as Diabetic Autoimmune Polyneuropathy
http://care.diabetesjournals.org/content/28/8/2082.1
Medication Induced Neuropathy
https://link.springer.com/article/10.1007/s11910-003-0043-8
John
Welcome, Alan. I was diagnosed with peripheral neuropathy 15+ years ago, with some numbness and tingling. The pain hit hard in 2015. Since then I've tried every medication for neuropathy and nothing helped, and most had undesirable side effects. I see a neurologist, a pain specialist, a therapist, a physical therapist and my pcp. Along the way I've also seen a cardiologist, and I had a spinal cord stimulator implant in June of last year.
I've been taking mscontin for several years, up to 30mg tid. After the implant, I reduced the morphine and am trying to get by with just 15mg in the morning, though my prescription is for 3 a day. When I'm going to be on my feet a lot, I will take a second one midday.
The Burst DR stimulator reduced my pain by around 75%, but I need periodic adjustments. With the Burst DR technology you don't feel any vibration that the older stimulators produced, which I understand is unpleasant and becomes intolerable.
I have a prescription lidocaine cream that I often put on my feet at bedtime. Usually it numbs my feet enough so I can get to sleep. Capzasin cream is helpful to many people, but it didn't help me.
I recently learned that I have both small fiber and autonomic peripheral neuropathy. The burning pain is in my feet, but I have some loss of sensation in my hands and face, and autonomic neuropathy is possibly the cause of or a contributor to several other issues I deal with, including double vision, tinnitus, esophageal dysmotility, lack of coordination in the base of my tongue, silent GERD, urinary issues, bowel issues and sexual dysfunction. I'm beginning to notice balance problems sometimes and foot drop.
My research indicates that progression of neuropathy is highly individualized, and it is rarely totally disabling, and even more rarely terminal. Of course, we're all terminal. It's part of the cycle of life.
I'm waiting to hear from a neuro specialist in Portland, OR, to see me and hopefully answer some of my questions about the involvement of neuropathy in these other things and to try to get an idea of what the progression will look like. I'm also hoping that he might have some other treatment options that the local doctors haven't tried.
I've been seeing therapists for more than 12 years for depression, PTSD, anxiety and suicidal ideation. These mental health issues complicate how I deal with pain and other physical conditions. I'm working on taking it all a day at a time, more or less, and not project the worst case scenario, which is typical of someone with mental illness.
I wish you the best in finding answers.
BTW, the one medication that was helping with the pain was Lyrica. Unfortunately, the side effects put me in the hospital. Bummer!
I'm going to be 68 in August, but because of mental illness I had to retire on Social Security disability when I was 56. Physically, I was in good health at the time, sleep apnea being my only concern. It's a challenge to grow older and have illnesses begin to pile up. I'm blessed to have several good doctors who take a genuine concern for my health.
Jim
Thanks for all this, Jim. I also have a prescription lidocaine cream that works well for my feet, though as I noted the most recent development in my case is the spread of the pain from my feet all the way up my legs to the thighs. The pain isn't as intense as that in the feet–yet–but enough discomfort so that I've had to start using the cream on my legs as well. The distressing part of it is how rapidly it's happened. This change in the legs started just a week ago and gets worse every day. The condition of the feet had been fairly stable for about a year. As you and just about everyone says, this thing is very individualized and unpredictable.–Alan
@alanhny– I had PN mostly in my feet and it got worst enough that if I walked any more than a 1/2 mile my feet would go numb. The drs. tried all kinds of tests and found nothing. I kept saying from what I have read it had to be the statin drug. The drs. kept saying no, it would'nt be that. I finally told my dr. lets try another statin then. I was taking 40 my of simistatin and swithed to 40 mg of atorvastin. I have hardly any more numbness and can walk for miles now. Go figure! These drs. seem to know only so much when it comes to drugs. I believe in taking a statins, but lets use some common sense!
I took statins for years because of a family history of heart disease. Then I developed PN, and the symptoms included pain in my feet, instability, leg weakness, etc. I stopped stations, and the PN symptoms reduced substantially! I make up for the lack of statins with a low fat diet and plenty of exercise. So far my cholesteral levels are low enough.
Good evening Alan, welcome to our group of supportive folks who deal with idiopathic PN and SFN. In 2012 I had cervical surgery to relieve severe tingling and pain in my arms by lifting the vertebrae off the nerves and replacing discs with titanium blocks. Unfortunately, some of the nerves were so damaged that there was no chance that these slow healers would recover in my lifetime. And so …..the journey into neuropathy began. Four years later in 2016 the small fiber neuropathy skin test came back with indications of severe small fiber nerve damage and demise. Thinking that of course there would be a cure….I attempted to tough it out and maintain my active life….walking 3 miles a day and joining my friends for walking trips around the world….serving as the volunteer marketing director for a non profit development project in the small mountain village where I live and traveling with grandchildren and puppy dogs. Of course, that lifestyle came crashing down and my first foray into depression and anxiety began to control my world. As a synopsis, I will share with you the steps I have taken to improve my quality of life. 1. Let go of anger and actively grieve for the life you once had until you are able to accept reality. 2. Explore both conventional non habit forming drugs as well as alternative medications particularly medical marijuana. My journey to discover the right products and dosages has taken two years and has resulted in the availability of pain and moderate symptom control on a daily basis. 3. Find substitutes for outdoor or physical activities no longer accessible to you or for which you have to pay the price in pain. This was a major challenge that led me to the daily practice of gentle yoga, meditation and mindfulness. Embrace the possible. 4. Find a neurologist or other medical practitioner who demonstrates a desire to be your partner and with whom you are comfortable sharing your efforts and results. 5. Find joy in every day…..no matter now briefly. Notice things you haven't really seen before. Seek answers to questions you have never asked before. Care about something and /or someone. 6. Find a pain release massage therapist who understands that all of our nerves are connected so that the pain you feel in your knee may really begin somewhere else in your body. Save your pennies so you can receive this treatment often. My best to you and please keep us informed of your progress….we all care so very much.
So happy to hear that you are living your life to the fullest. It’s a wonderful thing when you realize you can adapt to anything with grace and humility ,thank you for being so forthcoming .
@artscaping– Chris, thank you for sharing the way you are handling your journey. It should be printed & framed in every Doctors office. I know for myself I will certainly save your post and reread as needed in this journey through life. God bless, @thankful– Jim
@alanhny– My wife realized I had reversed the Statins in my post. It should be that I started with Atorvastatin and am now on Simvastatin. Sorry for the misinfomation.