Hello @jetelling, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I don't have essential tremors but I do have idiopathic small fiber peripheral neuropathy. I think just doing what you are now, searching for answers is a plus. One of the best things we can do is learn as much as we can about our health condition and what options are available to help - both medical and natural.
Thank you @johnbishop for your wonderful information. My numbness which is unexplained is probably the biggest issue along with an increasing need to cut back on things I like to do most. It is becoming apparent to me how personalized each of our experiences are and how no one approach works for everyone. I thank you for the information and I will continue to not only watch here but explore new options as I move along and share anything that I find beneficial.
I would really like to connect with some place that REALLY assists with the problems of peripheral neuropathy (non-diabetic). I have severe pain in the feet, radiating to the knees. With it comes poor balance, requiring a walker to keep from falling. It is constant!!!! I have no relief. Sleep is difficult. Are there any solutions out there? Please help !!!
I would really like to connect with some place that REALLY assists with the problems of peripheral neuropathy (non-diabetic). I have severe pain in the feet, radiating to the knees. With it comes poor balance, requiring a walker to keep from falling. It is constant!!!! I have no relief. Sleep is difficult. Are there any solutions out there? Please help !!!
Hello @madgemgunia, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I know it doesn't help much to tell you that you are not alone, but what can help is learning what options you might have. You can do that by learning as much as you can about your neuropathy diagnosis, treatments available, and possibly what has helped other members. Here are a few discussions that you might want to read and learn what other members have shared.
In 2013 I was diagnosed at Mayo with non diabetic peripheral neuropathy and essential tremor. Symptoms of the tremor are illegible handwriting and problems gripping sometimes. As time has progressed I have injured my feet due to no sensation at all below both knees. Some 3 years ago on a cruise a toe blister turned into sepsis and the left foot has been a constant struggle to keep from infection - even though I do not have neuropathy. A doctor recently suggested B12 (as Methylcobalamin) and I have just started taking it so I cannot judge effectiveness. At age 64 I am hopeful I will be able to resume more activities (love woodworking) and get outside much more. I welcome any suggestions!
Hello @jetelling,
I started developing tremors and then other PN symptoms late last fall, due to an autoimmune disease. I’m on immunosuppressive meds as I’m a transplant recipient, so reducing my meds over the past few months has somewhat lessened the tremors. I also limit my coffee. I know stress definitely makes the tremors much worse. I have to type for much of my work, so that’s been a creative adaptation experience. I also broke a bunch of glasses early on…ugh. So, I just try to be very mindful of doing things more slowly, cautiously, and with a firm grip! I do hand exercises throughout the day to keep my grip strong and my fingers nimble.
I’ve found using Siri helps with quick notes, texting, emails, etc. I try to avoid any kind of hand writing, as I can barely read it, so I’m sure as you’ve found, no one else can! Do you have a mobile phone or tablet you can use? I do most everything on an iPad mini. It connects to a wireless printer if I need a hard copy. It’s small, portable, much easier to type on than a phone and does everything a laptop does. I’ve gotten quite fast at typing with my index fingers and steady my hand with my pinkies on the side of the iPad.
Essentialtremor.org has a list of adaptive devices, tools, etc. you might find helpful.
I’ve found going through some of the other neuropathy discussions on Connect to be informative on PN specifics, I bookmark the ones with suggestions I might find useful or treatments to ask my neurologist about. There are several discussions on supplements; @johnbishop is quite knowledgeable on that front. I take B vitamins, R-ALA and Acetyl-L-carnitine, and 300 mg Gabapentin at night. The sharp nerve pains are better; numbness, tingling, and pain are slowly getting worse. But, I’ve only been on the supplements a couple months. I have my first appointment with a neuromuscular doctor on Monday, so I’m hoping she can offer some treatment ideas. Do you see a neurologist?
Hello @athenalee,
Thank you for your reply. I appreciate the very helpful websites and suggestions as I am just exploring my options from basically the beginning. Not that I haven’t had this a while, however, as a typical guy you know we don’t need to stop for directions! Stubborn I guess. My reading of all of these comments in materials has really made me more aware and wanting to learn more. PN has such a number of different symptoms I went for years without even a diagnosis therefore I did not focus on it. I retired 2 years ago and now it has my attention. One of my favorite things I used to do was write and print. I do miss that.
I am so happy that you were able to get a liver and hope that things go well for you. It is difficult enough with just the PN but with anti-rejection drugs and all that go with it I can’t imagine.
I especially appreciate the website for assistive devices. This reply is totally done with voice dictation and I use it all the time including Siri. Fortunately I am fairly computer literate and use mostly Apple products which have great assistive features.
The only neurologist I have is the one I saw at Mayo a few years back. I am not aware of any local specialists here in central Illinois. I probably should check into that, I don’t know why I have not. Thanks again!
Thank you @johnbishop for your wonderful information. My numbness which is unexplained is probably the biggest issue along with an increasing need to cut back on things I like to do most. It is becoming apparent to me how personalized each of our experiences are and how no one approach works for everyone. I thank you for the information and I will continue to not only watch here but explore new options as I move along and share anything that I find beneficial.
I have autonomic small fiber neuropathy and my life has changed drastically. I have no stamina to do things that I used to do. I have burning pain 24/7 in my thighs and knees. My feet have a numbness to them. My neurologist prescribes 600mg of Gaberpentin taken three times a day. It does help but it’s not a cure all. She had a compound made for me with five different ingredients which I rub on my thighs and knees nightly. Since I have autonomic small fiber neuropathy my bladder crapped out in 2013 facilitating the need for bilateral bladder stimulators. I am also getting the smart pill test November 2nd to check for motility issues.
Hello @athenalee,
Thank you for your reply. I appreciate the very helpful websites and suggestions as I am just exploring my options from basically the beginning. Not that I haven’t had this a while, however, as a typical guy you know we don’t need to stop for directions! Stubborn I guess. My reading of all of these comments in materials has really made me more aware and wanting to learn more. PN has such a number of different symptoms I went for years without even a diagnosis therefore I did not focus on it. I retired 2 years ago and now it has my attention. One of my favorite things I used to do was write and print. I do miss that.
I am so happy that you were able to get a liver and hope that things go well for you. It is difficult enough with just the PN but with anti-rejection drugs and all that go with it I can’t imagine.
I especially appreciate the website for assistive devices. This reply is totally done with voice dictation and I use it all the time including Siri. Fortunately I am fairly computer literate and use mostly Apple products which have great assistive features.
The only neurologist I have is the one I saw at Mayo a few years back. I am not aware of any local specialists here in central Illinois. I probably should check into that, I don’t know why I have not. Thanks again!
That’s great you’ve mastered voice recognition. I have to practice more! Adjusting to PN is tough. And, the symptoms are so weird. For me it developed suddenly and definitely unexpectedly. Thought after my transplant life would get back to normal…not!
Driving has taken a lot to get use to. Do you have numbness? I can’t really feel much in my legs or abdomen. It’s been developing in my arms too.
I can relate to lack of medical services in rural areas. I live in southern Vermont, my town has 12,000 population. We do have an ok hospital though as our area is quite cultured and very touristy. There’s two neurologists, so it does take a while to get an appointment. But the one I saw successfully diagnosed the new autoimmune disease I developed that is causing my PN. So, you might be able to find one not too far away I hope.
That’s great you’ve mastered voice recognition. I have to practice more! Adjusting to PN is tough. And, the symptoms are so weird. For me it developed suddenly and definitely unexpectedly. Thought after my transplant life would get back to normal…not!
Driving has taken a lot to get use to. Do you have numbness? I can’t really feel much in my legs or abdomen. It’s been developing in my arms too.
I can relate to lack of medical services in rural areas. I live in southern Vermont, my town has 12,000 population. We do have an ok hospital though as our area is quite cultured and very touristy. There’s two neurologists, so it does take a while to get an appointment. But the one I saw successfully diagnosed the new autoimmune disease I developed that is causing my PN. So, you might be able to find one not too far away I hope.
Yes, PN does seem to get worse. Driving becomes less safe, for me mostly when traveling a greater distance. I am concerned about my reaction on the brakes with feet that feel like cement shoes. Recently the left side of my head became numb, prompting a head scan last week. Fortunately the results were good with no signs of stroke or bone or brain damage. Such a strange place for it to occur.
I did read up on the new wrist worn device the FDA approved for tremor so that is a little encouraging (Cala Trio from Cala Health). I pray for more technological advances to move toward solid results for all those suffering! It is a journey along a road with many potholes, but there is hope and companions to help carry the load!
I have autonomic small fiber neuropathy and my life has changed drastically. I have no stamina to do things that I used to do. I have burning pain 24/7 in my thighs and knees. My feet have a numbness to them. My neurologist prescribes 600mg of Gaberpentin taken three times a day. It does help but it’s not a cure all. She had a compound made for me with five different ingredients which I rub on my thighs and knees nightly. Since I have autonomic small fiber neuropathy my bladder crapped out in 2013 facilitating the need for bilateral bladder stimulators. I am also getting the smart pill test November 2nd to check for motility issues.
Hello @dianecostella,
I can sympathize with the numbness and mine is popping up even on my scalp. I have both legs numb below the knees and yet have occasional sharp stabbing pains in my feet and toes, feels like bones are being crunched. All part of my PN I am told. I have not have any pain relievers except over the counter, and Xanax for anxiety and pain attacks. The bladder issue is new to me. I pray that your pain can be relieved, and your testing goes well. I am looking into some supplements to try, maybe a formulated mix like you describe. No cures I understand but we keep hoping!
Hello @dianecostella,
I can sympathize with the numbness and mine is popping up even on my scalp. I have both legs numb below the knees and yet have occasional sharp stabbing pains in my feet and toes, feels like bones are being crunched. All part of my PN I am told. I have not have any pain relievers except over the counter, and Xanax for anxiety and pain attacks. The bladder issue is new to me. I pray that your pain can be relieved, and your testing goes well. I am looking into some supplements to try, maybe a formulated mix like you describe. No cures I understand but we keep hoping!
Diane, I have idiopathic sensory motor axonal peripheral neuropathy. I have similar symptoms as you do. I also have feet that feel hot and cold at the same time.
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Thank you @johnbishop for your wonderful information. My numbness which is unexplained is probably the biggest issue along with an increasing need to cut back on things I like to do most. It is becoming apparent to me how personalized each of our experiences are and how no one approach works for everyone. I thank you for the information and I will continue to not only watch here but explore new options as I move along and share anything that I find beneficial.
-
Like -
Helpful -
Hug
2 ReactionsI would really like to connect with some place that REALLY assists with the problems of peripheral neuropathy (non-diabetic). I have severe pain in the feet, radiating to the knees. With it comes poor balance, requiring a walker to keep from falling. It is constant!!!! I have no relief. Sleep is difficult. Are there any solutions out there? Please help !!!
Hello @madgemgunia, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I know it doesn't help much to tell you that you are not alone, but what can help is learning what options you might have. You can do that by learning as much as you can about your neuropathy diagnosis, treatments available, and possibly what has helped other members. Here are a few discussions that you might want to read and learn what other members have shared.
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Neuropathy Pain at Night: What helps?: https://connect.mayoclinic.org/discussion/night-pain-2/
-- Small Fiber Neuropathy: Book Recommendation: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-book/
Also, here are a couple of sites to you learn more about neuropathy and treatment options available.
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Neuropathy Commons: https://neuropathycommons.org/
Do you mind sharing a little more about your diagnosis and any treatments that you have tried or are using now?
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1 ReactionHello @jetelling,
I started developing tremors and then other PN symptoms late last fall, due to an autoimmune disease. I’m on immunosuppressive meds as I’m a transplant recipient, so reducing my meds over the past few months has somewhat lessened the tremors. I also limit my coffee. I know stress definitely makes the tremors much worse. I have to type for much of my work, so that’s been a creative adaptation experience. I also broke a bunch of glasses early on…ugh. So, I just try to be very mindful of doing things more slowly, cautiously, and with a firm grip! I do hand exercises throughout the day to keep my grip strong and my fingers nimble.
I’ve found using Siri helps with quick notes, texting, emails, etc. I try to avoid any kind of hand writing, as I can barely read it, so I’m sure as you’ve found, no one else can! Do you have a mobile phone or tablet you can use? I do most everything on an iPad mini. It connects to a wireless printer if I need a hard copy. It’s small, portable, much easier to type on than a phone and does everything a laptop does. I’ve gotten quite fast at typing with my index fingers and steady my hand with my pinkies on the side of the iPad.
Essentialtremor.org has a list of adaptive devices, tools, etc. you might find helpful.
I’ve found going through some of the other neuropathy discussions on Connect to be informative on PN specifics, I bookmark the ones with suggestions I might find useful or treatments to ask my neurologist about. There are several discussions on supplements; @johnbishop is quite knowledgeable on that front. I take B vitamins, R-ALA and Acetyl-L-carnitine, and 300 mg Gabapentin at night. The sharp nerve pains are better; numbness, tingling, and pain are slowly getting worse. But, I’ve only been on the supplements a couple months. I have my first appointment with a neuromuscular doctor on Monday, so I’m hoping she can offer some treatment ideas. Do you see a neurologist?
-
Like -
Helpful -
Hug
2 ReactionsHello @athenalee,
Thank you for your reply. I appreciate the very helpful websites and suggestions as I am just exploring my options from basically the beginning. Not that I haven’t had this a while, however, as a typical guy you know we don’t need to stop for directions! Stubborn I guess. My reading of all of these comments in materials has really made me more aware and wanting to learn more. PN has such a number of different symptoms I went for years without even a diagnosis therefore I did not focus on it. I retired 2 years ago and now it has my attention. One of my favorite things I used to do was write and print. I do miss that.
I am so happy that you were able to get a liver and hope that things go well for you. It is difficult enough with just the PN but with anti-rejection drugs and all that go with it I can’t imagine.
I especially appreciate the website for assistive devices. This reply is totally done with voice dictation and I use it all the time including Siri. Fortunately I am fairly computer literate and use mostly Apple products which have great assistive features.
The only neurologist I have is the one I saw at Mayo a few years back. I am not aware of any local specialists here in central Illinois. I probably should check into that, I don’t know why I have not. Thanks again!
-
Like -
Helpful -
Hug
3 ReactionsI have autonomic small fiber neuropathy and my life has changed drastically. I have no stamina to do things that I used to do. I have burning pain 24/7 in my thighs and knees. My feet have a numbness to them. My neurologist prescribes 600mg of Gaberpentin taken three times a day. It does help but it’s not a cure all. She had a compound made for me with five different ingredients which I rub on my thighs and knees nightly. Since I have autonomic small fiber neuropathy my bladder crapped out in 2013 facilitating the need for bilateral bladder stimulators. I am also getting the smart pill test November 2nd to check for motility issues.
-
Like -
Helpful -
Hug
1 ReactionThat’s great you’ve mastered voice recognition. I have to practice more! Adjusting to PN is tough. And, the symptoms are so weird. For me it developed suddenly and definitely unexpectedly. Thought after my transplant life would get back to normal…not!
Driving has taken a lot to get use to. Do you have numbness? I can’t really feel much in my legs or abdomen. It’s been developing in my arms too.
I can relate to lack of medical services in rural areas. I live in southern Vermont, my town has 12,000 population. We do have an ok hospital though as our area is quite cultured and very touristy. There’s two neurologists, so it does take a while to get an appointment. But the one I saw successfully diagnosed the new autoimmune disease I developed that is causing my PN. So, you might be able to find one not too far away I hope.
-
Like -
Helpful -
Hug
2 ReactionsYes, PN does seem to get worse. Driving becomes less safe, for me mostly when traveling a greater distance. I am concerned about my reaction on the brakes with feet that feel like cement shoes. Recently the left side of my head became numb, prompting a head scan last week. Fortunately the results were good with no signs of stroke or bone or brain damage. Such a strange place for it to occur.
I did read up on the new wrist worn device the FDA approved for tremor so that is a little encouraging (Cala Trio from Cala Health). I pray for more technological advances to move toward solid results for all those suffering! It is a journey along a road with many potholes, but there is hope and companions to help carry the load!
-
Like -
Helpful -
Hug
2 ReactionsHello @dianecostella,
I can sympathize with the numbness and mine is popping up even on my scalp. I have both legs numb below the knees and yet have occasional sharp stabbing pains in my feet and toes, feels like bones are being crunched. All part of my PN I am told. I have not have any pain relievers except over the counter, and Xanax for anxiety and pain attacks. The bladder issue is new to me. I pray that your pain can be relieved, and your testing goes well. I am looking into some supplements to try, maybe a formulated mix like you describe. No cures I understand but we keep hoping!
-
Like -
Helpful -
Hug
1 ReactionDiane, I have idiopathic sensory motor axonal peripheral neuropathy. I have similar symptoms as you do. I also have feet that feel hot and cold at the same time.
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Helpful -
Hug
1 Reaction