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.
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!
Oh no! I can’t imagine how traumatizing is must have been to have the side of your head go numb! I’m so glad it wasn’t a stroke or brain damage. I’ll look up the Cala Trio device, thank you.
I have to do day driving trips for one of my jobs, the only way I managed is with my vehicle’s adaptive cruise control. It’s truly a life saver.
Hello @ubelinda, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. You have asked a great question and now your learning journey begins. The more you can learn about your condition and options available to you, the better your chances of finding help will be. Here are a couple of good starting points for learning about your peripheral neuropathy.
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 @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?
@user* I've been thinking about no one being able to think of a dr who has been helpful to them - and - there must be so many kinds of PN, so many causes, there must be equally as many treatments, and to find the one that works for a particular individual might be like looking for the proverbial needle in haystack? or, perhaps as many have said - there is no treatment!!! You do have to be your own advocate - keep looking, trying new things, sharing what you have learned and what others have learned.
i have Idiopathic neuropathy and its in my head neck shoulders arms hand both my legs and feet even between my legs. In others words whole body. I had it for almost 3 years and its starting to get worst. taking pregabalin 300 daily along with duloxetine 30mg along with celecoxib 400mg daily. I am afraid it will take my eyes and hearing along with my limbs which leaves nothing left to work with except pain and pills. I am looking into stem cell therapy, prednisone or IVIG therapy. If anyone has had any success with the above mention treatments I would love to hear from you.
Hello @ubelinda, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. You have asked a great question and now your learning journey begins. The more you can learn about your condition and options available to you, the better your chances of finding help will be. Here are a couple of good starting points for learning about your peripheral neuropathy.
Thank you John for sites. I will read. I was diagnosed with peripheral neuropathy close to 10 years ago, after tingling and some numbness in hand and feet. Lately these symptoms have been getting worse; just waiting for my EMG test results now. The worse symptoms for me now are the involuntary dropping of things from my hands and pain in my legs. Thank you for responding. Ubelinda
I was diagnosed with peripheral neuropathy 10-12 years ago. If worsened after tkr in 2016z BC came along in 2020 and I went on plant based diet and lost 50!lbs., My neuropathy was so much better… almost gone after being pretty tuff.,during this time I was taking harmony therapy for my cancer. End of January I had Phizrr vax. I immediately started having more pain in feet legs and hand was completely useless . I had many other reactions. I decided it was the hormones therapy snd quit taking it in Fed most difficult effects went away but my neuropathy got worse I have to walk with a cane snd cannot bare long pants or skirts to touch my leg . Shoes must by open and no socks., no covers on my legs at night either. It just keeps getting worse. I’m thinking it must be a different side effect of the vaccine there is no
Other reason got me to be a cripple
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What is in the compound prescribed and does it help?
Oh no! I can’t imagine how traumatizing is must have been to have the side of your head go numb! I’m so glad it wasn’t a stroke or brain damage. I’ll look up the Cala Trio device, thank you.
I have to do day driving trips for one of my jobs, the only way I managed is with my vehicle’s adaptive cruise control. It’s truly a life saver.
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1 ReactionI have peripheral neuropathy. Is there anything I can do to prevent this condition to advance? I would like your suggestions.
Hello @ubelinda, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. You have asked a great question and now your learning journey begins. The more you can learn about your condition and options available to you, the better your chances of finding help will be. Here are a couple of good starting points for learning about your peripheral neuropathy.
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/lifestyle/managing-peripheral-neuropathy/
You may also want to read through the posts in the following discussion to learn what other members have shared helps them.
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
Can you share a little more about your diagnosis and what symptoms cause you the most concern or pain?
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1 ReactionWhat is the smart pill test?
How Smart Pills Identify Gastroparesis – Cleveland Clinic: https://health.clevelandclinic.org/how-does-a-smart-pill-help-diagnose-your-gastroparesis/
I don’t think anything helps. I can’t walk without shoes, even socks make me nervous. In bed it feels like I’m wearing wooden shoes, however.
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1 Reactioni have Idiopathic neuropathy and its in my head neck shoulders arms hand both my legs and feet even between my legs. In others words whole body. I had it for almost 3 years and its starting to get worst. taking pregabalin 300 daily along with duloxetine 30mg along with celecoxib 400mg daily. I am afraid it will take my eyes and hearing along with my limbs which leaves nothing left to work with except pain and pills. I am looking into stem cell therapy, prednisone or IVIG therapy. If anyone has had any success with the above mention treatments I would love to hear from you.
Thank you John for sites. I will read. I was diagnosed with peripheral neuropathy close to 10 years ago, after tingling and some numbness in hand and feet. Lately these symptoms have been getting worse; just waiting for my EMG test results now. The worse symptoms for me now are the involuntary dropping of things from my hands and pain in my legs. Thank you for responding. Ubelinda
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Like -
Helpful -
Hug
1 ReactionI was diagnosed with peripheral neuropathy 10-12 years ago. If worsened after tkr in 2016z BC came along in 2020 and I went on plant based diet and lost 50!lbs., My neuropathy was so much better… almost gone after being pretty tuff.,during this time I was taking harmony therapy for my cancer. End of January I had Phizrr vax. I immediately started having more pain in feet legs and hand was completely useless . I had many other reactions. I decided it was the hormones therapy snd quit taking it in Fed most difficult effects went away but my neuropathy got worse I have to walk with a cane snd cannot bare long pants or skirts to touch my leg . Shoes must by open and no socks., no covers on my legs at night either. It just keeps getting worse. I’m thinking it must be a different side effect of the vaccine there is no
Other reason got me to be a cripple