Hi, I have idiopathic peripheral neuropathy which has gradually worsened over the last 10 years, but dramatically worsened after 2nd moderna vaccine. Getting IVIG and taking Lyrica. Now I’m suffering with advanced arthritis in right hip and considering hip replacement surgery. Has anyone had hip replacement? I’m terrified of being worse off since I already have such poor mobility.
I haven’t had a hip replacement but it seems like I got neuropathy after my Pzfier Vaccine and Optic Nerve Damage I wish I hadn’t done the shots and dealt with COVID.
Hello fellow sufferers ,
I am actually a little surprised to find such a large number of people with idiopathic peripheral neuropathy. Mine started about 9 or 10 years ago . It was manageable with B vitamins and gabapentin when the stabbing pains occurred , which had been lessening. Went to a doctor for a touch of toenail fungus on one toe . He told me to stop taking the b vitamins and gave me itraconazole for the fungus . Wish I had never gone to the doctor . After 2 nights of the anti fungal I was awakened at 3am with my feet and calves seizing up like one giant cramp . It was VERY painful and lasted hours . I have since stopped the drug and now have 0 feeling in my feet and halfway up my legs . I went from mild neuropathy to severe neuropathy in one night . My advice to those who suffer with this DO NOT take itraconozole . I’m not sure if this will improve with time but from what I glean it only gets worse never better . Not going back to that Dr .
I used to take 300 mg gab every once in a while for pain . Now I’m taking 600 every 8hrs and getting little relief . The question I have is what do I have to look forward to when this gets worse and spreads ? And how long until one is a cripple ?
Pam, geez, sorry to hear that! I cannot do the THC either, but not for the same reason! It makes me "high" and keeps me wide awake all night. So, I tried again, I actually bought very high end THC from the Dispensary ( legal in PA for Medical) $10 a pill and no go! What a waste of $.
What do you take to sleep...or is it not a problem?
Fala
Hello fellow sufferers ,
I am actually a little surprised to find such a large number of people with idiopathic peripheral neuropathy. Mine started about 9 or 10 years ago . It was manageable with B vitamins and gabapentin when the stabbing pains occurred , which had been lessening. Went to a doctor for a touch of toenail fungus on one toe . He told me to stop taking the b vitamins and gave me itraconazole for the fungus . Wish I had never gone to the doctor . After 2 nights of the anti fungal I was awakened at 3am with my feet and calves seizing up like one giant cramp . It was VERY painful and lasted hours . I have since stopped the drug and now have 0 feeling in my feet and halfway up my legs . I went from mild neuropathy to severe neuropathy in one night . My advice to those who suffer with this DO NOT take itraconozole . I’m not sure if this will improve with time but from what I glean it only gets worse never better . Not going back to that Dr .
I used to take 300 mg gab every once in a while for pain . Now I’m taking 600 every 8hrs and getting little relief . The question I have is what do I have to look forward to when this gets worse and spreads ? And how long until one is a cripple ?
Hello @yojimbob, Welcome to Connect. It took me a minute but I did crack a smile when I read your member name. I think your question is one we all think about as we try to adjust to our new normal and figure how to deal with this neuropathy beast. The problem is that the causes and symptoms are many, we are all different and what works for one doesn't always work for others. That said there is a lot of experience here on Connect to tap and learn what has helped each of us. I have idiopathic small fiber peripheral neuropathy but only have numbness with a little tingling. I shared my story in another discussion here:
My best advice is to learn as much as you can about your conditions and what the available treatments are that might provide relief. Here are my two favorite sites for learning more.
Hello @yojimbob, Welcome to Connect. It took me a minute but I did crack a smile when I read your member name. I think your question is one we all think about as we try to adjust to our new normal and figure how to deal with this neuropathy beast. The problem is that the causes and symptoms are many, we are all different and what works for one doesn't always work for others. That said there is a lot of experience here on Connect to tap and learn what has helped each of us. I have idiopathic small fiber peripheral neuropathy but only have numbness with a little tingling. I shared my story in another discussion here:
My best advice is to learn as much as you can about your conditions and what the available treatments are that might provide relief. Here are my two favorite sites for learning more.
Hi @johnbishop
Thanks for your reply . Yes I have looked into alternative treatments . I went to a pain center a few days ago . A few days before that I had one of those electrical tests and still haven’t been given a complete report . He did mention I now have severe neuropathy .
I am scheduled to see a doctor early November . I believe he is the one who will explain the results of my test .
The pain dr added some kind of anxiety drug to mix with my gabapentin . It too has many side effects . At the first sign of one I’m quitting that . He also mentioned a foot cream but said it was rather expensive .
I’m about ready to cut the legs off and get me some of those army feet .😀
Good evening @felicia2, thanks for responding to my post. It was quite a while ago so I had to read backward to make sense of the arthritis comment.
I do have to admit that I do not take any pain pills. My SFN (small fiber neuropathy) pain is controlled by medical cannabis and two gabapentin at bedtime. I change the dosages of cannabis, based on my activities, barometric pressure, and mental state.
Wow! Thank you so much for your post! I just this moment joined Mayo Connect and yours was the first post I noticed out of all. This is the first time since 2013 I have heard someone not only ask this question, but someone who described this very type I have, which is non-diabetic. I developed Neuropathy on dialysis but I was injured on dialysis which I believe is the original cause as I got nerve damage down both legs from it. Everything I look up on line only described Diabetic Neuropathy. I felt like I didn't exist in their descriptions, although I was able to use the info for myself. So I really appreciate you reaching out. You are the first I get to identify with! I hope you have a painfree feeling night!
Hello @yojimbob, Welcome to Connect. It took me a minute but I did crack a smile when I read your member name. I think your question is one we all think about as we try to adjust to our new normal and figure how to deal with this neuropathy beast. The problem is that the causes and symptoms are many, we are all different and what works for one doesn't always work for others. That said there is a lot of experience here on Connect to tap and learn what has helped each of us. I have idiopathic small fiber peripheral neuropathy but only have numbness with a little tingling. I shared my story in another discussion here:
My best advice is to learn as much as you can about your conditions and what the available treatments are that might provide relief. Here are my two favorite sites for learning more.
Hi, I just joined Connect and am so sorry to hear about all you each are going through. I do agree with John. I also joined the Foundation of Peripheral Neuropathy when I discovered them online a few years ago. I have Neuropathy I developed on dialysis, however, I was severely abused on dialysis and they caused a fall out of my bed that injured my spine. I had severe Sciatica and a few months later as things progressed I saw my Physiologist and his partner did an ENG. It revealed I developed nerve damage down both my legs, I have annular tears and crushed disks , and Sacroilliac Joint Arthritis later developed from that fall. I transferred centers and a year later their wonderful Dialysis RN I knew for 10 yrs, told me she thought I had Neuropathy from Dialysis. It was then I began Gabapentin at 100 mg. A month after that I received my kidney transplant and I have been taking 900mg daily since. Its a miracle drug. Since then, which was back in 2014, I have been prescribed Tramadol which I try only to take it when its absolutely unbearable. I had been prescribed Tramadol by my Primary Care Doctors but they retired. Well, suddenly this year the Transplant Center Pharmacy said the Gabapentin was no longer being filled by the Transplant Center. Before the operation, things got confused as I had transferred the med down here to a local pharmacy. So all that time my local Nephrologist prescribed it when I thought it was the Transplant Center. Ha Ha. I take so many pills I just include it in my pill box. Well this was a happy accident as I learned from this when both Doctors refused to continue prescribing Gabapentin they said I needed to see a Neurologist for it! That was a complete surprise to me. Yet, it was also another happy accident as this is the exact Specialist needed for prescribing Tramadol and just in time to refill my prescription as I no longer had a doctor since my PCP retired. That's important because Tramadol is a Neuropathic Drug and is the only medication that works for my pain. Knowing its the brain that is in control of my Neuropathy any futher developments I now have the right Specialist to guide me through it. When I read about your horrible reaction to your medication, it reminded me of when I was given a Lipitor a few months after my fall out of bed and oh I had such a bad reaction I had Restless Leg Syndrome and a fever for 2 weeks. I was very lucky that stopped. However, I was misdiagnosed when I was 22 and that med given to me at the time blew out both my kidneys instantly only I did not know until I was 38. Its a matter of finding the right Specialist first to define the actual cause and that unforunately takes time. Once you fine the correct Specialist they can accurately diagnosis and provide the right medication for it. It took me 38 specialists in 8 months, 20 yrs ago, to find out I had kidney failure in both kidneys. My Rheumatologist did a blood test and he sent me immediately to a Nephrologist of which I had never heard of. I had never been sick a day in my life. Recently I found out my Mother has Neuropathy too but she is 88 and doesn't know how she got it. So that leads me to think that if not a coincidence, my Neuorpathy may also be hereditary. I would suggest since the ENT you just had done, the electrical test where they put the needles on you, that perhaps a Neurologist would be the one to pursue, since it was just confirmed you have severe Neuopathy. Starting from the top down, the Brain down the Spine, may be of help to you. Perhaps it will save you a lot of time hunting doctors and causes as well. He may be able to help you most. Tramadol also is an SSRI which coincidentally also helps anxiety so that may help kill 2 birds with one stone. It will get you off those other types of anxiety meds that cause severe side effects. Gabapentin is an Anticonvulsant and Tramadol is an SSRI but both are Neuropathic drugs. In my own experience, they work wonders for me. I recommend seeing a Neurologist. I hope this helps. I so hope time goes by as fast as it can to get your pain under control. I am so sorry you have to endure this. Wish you well!.
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I haven’t had a hip replacement but it seems like I got neuropathy after my Pzfier Vaccine and Optic Nerve Damage I wish I hadn’t done the shots and dealt with COVID.
Hello fellow sufferers ,
I am actually a little surprised to find such a large number of people with idiopathic peripheral neuropathy. Mine started about 9 or 10 years ago . It was manageable with B vitamins and gabapentin when the stabbing pains occurred , which had been lessening. Went to a doctor for a touch of toenail fungus on one toe . He told me to stop taking the b vitamins and gave me itraconazole for the fungus . Wish I had never gone to the doctor . After 2 nights of the anti fungal I was awakened at 3am with my feet and calves seizing up like one giant cramp . It was VERY painful and lasted hours . I have since stopped the drug and now have 0 feeling in my feet and halfway up my legs . I went from mild neuropathy to severe neuropathy in one night . My advice to those who suffer with this DO NOT take itraconozole . I’m not sure if this will improve with time but from what I glean it only gets worse never better . Not going back to that Dr .
I used to take 300 mg gab every once in a while for pain . Now I’m taking 600 every 8hrs and getting little relief . The question I have is what do I have to look forward to when this gets worse and spreads ? And how long until one is a cripple ?
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3 ReactionsPam, geez, sorry to hear that! I cannot do the THC either, but not for the same reason! It makes me "high" and keeps me wide awake all night. So, I tried again, I actually bought very high end THC from the Dispensary ( legal in PA for Medical) $10 a pill and no go! What a waste of $.
What do you take to sleep...or is it not a problem?
Fala
Hello @yojimbob, Welcome to Connect. It took me a minute but I did crack a smile when I read your member name. I think your question is one we all think about as we try to adjust to our new normal and figure how to deal with this neuropathy beast. The problem is that the causes and symptoms are many, we are all different and what works for one doesn't always work for others. That said there is a lot of experience here on Connect to tap and learn what has helped each of us. I have idiopathic small fiber peripheral neuropathy but only have numbness with a little tingling. I shared my story in another discussion here:
-- Member Neuropathy Journey Stories: What's Yours?:
https://connect.mayoclinic.org/comment/310341/
My best advice is to learn as much as you can about your conditions and what the available treatments are that might provide relief. Here are my two favorite sites for learning more.
-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/treatments/
Have you looked into any complementary or alternative treatments for neuropathy?
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2 ReactionsHi @johnbishop
Thanks for your reply . Yes I have looked into alternative treatments . I went to a pain center a few days ago . A few days before that I had one of those electrical tests and still haven’t been given a complete report . He did mention I now have severe neuropathy .
I am scheduled to see a doctor early November . I believe he is the one who will explain the results of my test .
The pain dr added some kind of anxiety drug to mix with my gabapentin . It too has many side effects . At the first sign of one I’m quitting that . He also mentioned a foot cream but said it was rather expensive .
I’m about ready to cut the legs off and get me some of those army feet .😀
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1 ReactionThe nest thing I do is move. And move some more with strengthening exercises. Keep that blood flowing!
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3 ReactionsGood evening @felicia2, thanks for responding to my post. It was quite a while ago so I had to read backward to make sense of the arthritis comment.
I do have to admit that I do not take any pain pills. My SFN (small fiber neuropathy) pain is controlled by medical cannabis and two gabapentin at bedtime. I change the dosages of cannabis, based on my activities, barometric pressure, and mental state.
What is currently working for you?
Chris
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4 ReactionsWow! Thank you so much for your post! I just this moment joined Mayo Connect and yours was the first post I noticed out of all. This is the first time since 2013 I have heard someone not only ask this question, but someone who described this very type I have, which is non-diabetic. I developed Neuropathy on dialysis but I was injured on dialysis which I believe is the original cause as I got nerve damage down both legs from it. Everything I look up on line only described Diabetic Neuropathy. I felt like I didn't exist in their descriptions, although I was able to use the info for myself. So I really appreciate you reaching out. You are the first I get to identify with! I hope you have a painfree feeling night!
It must've very depressing and annoying that no cure is in sight....
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1 ReactionHi, I just joined Connect and am so sorry to hear about all you each are going through. I do agree with John. I also joined the Foundation of Peripheral Neuropathy when I discovered them online a few years ago. I have Neuropathy I developed on dialysis, however, I was severely abused on dialysis and they caused a fall out of my bed that injured my spine. I had severe Sciatica and a few months later as things progressed I saw my Physiologist and his partner did an ENG. It revealed I developed nerve damage down both my legs, I have annular tears and crushed disks , and Sacroilliac Joint Arthritis later developed from that fall. I transferred centers and a year later their wonderful Dialysis RN I knew for 10 yrs, told me she thought I had Neuropathy from Dialysis. It was then I began Gabapentin at 100 mg. A month after that I received my kidney transplant and I have been taking 900mg daily since. Its a miracle drug. Since then, which was back in 2014, I have been prescribed Tramadol which I try only to take it when its absolutely unbearable. I had been prescribed Tramadol by my Primary Care Doctors but they retired. Well, suddenly this year the Transplant Center Pharmacy said the Gabapentin was no longer being filled by the Transplant Center. Before the operation, things got confused as I had transferred the med down here to a local pharmacy. So all that time my local Nephrologist prescribed it when I thought it was the Transplant Center. Ha Ha. I take so many pills I just include it in my pill box. Well this was a happy accident as I learned from this when both Doctors refused to continue prescribing Gabapentin they said I needed to see a Neurologist for it! That was a complete surprise to me. Yet, it was also another happy accident as this is the exact Specialist needed for prescribing Tramadol and just in time to refill my prescription as I no longer had a doctor since my PCP retired. That's important because Tramadol is a Neuropathic Drug and is the only medication that works for my pain. Knowing its the brain that is in control of my Neuropathy any futher developments I now have the right Specialist to guide me through it. When I read about your horrible reaction to your medication, it reminded me of when I was given a Lipitor a few months after my fall out of bed and oh I had such a bad reaction I had Restless Leg Syndrome and a fever for 2 weeks. I was very lucky that stopped. However, I was misdiagnosed when I was 22 and that med given to me at the time blew out both my kidneys instantly only I did not know until I was 38. Its a matter of finding the right Specialist first to define the actual cause and that unforunately takes time. Once you fine the correct Specialist they can accurately diagnosis and provide the right medication for it. It took me 38 specialists in 8 months, 20 yrs ago, to find out I had kidney failure in both kidneys. My Rheumatologist did a blood test and he sent me immediately to a Nephrologist of which I had never heard of. I had never been sick a day in my life. Recently I found out my Mother has Neuropathy too but she is 88 and doesn't know how she got it. So that leads me to think that if not a coincidence, my Neuorpathy may also be hereditary. I would suggest since the ENT you just had done, the electrical test where they put the needles on you, that perhaps a Neurologist would be the one to pursue, since it was just confirmed you have severe Neuopathy. Starting from the top down, the Brain down the Spine, may be of help to you. Perhaps it will save you a lot of time hunting doctors and causes as well. He may be able to help you most. Tramadol also is an SSRI which coincidentally also helps anxiety so that may help kill 2 birds with one stone. It will get you off those other types of anxiety meds that cause severe side effects. Gabapentin is an Anticonvulsant and Tramadol is an SSRI but both are Neuropathic drugs. In my own experience, they work wonders for me. I recommend seeing a Neurologist. I hope this helps. I so hope time goes by as fast as it can to get your pain under control. I am so sorry you have to endure this. Wish you well!.
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