Hi, I am a 67 year old guy diagnosed with Small Fibre Neuropathy 5 years ago, with burning soles of my feet 24/7 worse at night. I now limit my time on my feet to 5.30am to about 1.00pm and never wear shoes or even socks in an effort to limit the pain which always increases after 4.00pm or so. Have been on Pregabalin 150mg morning and night for over 4 1/2 years and tolerate the side effects because I'd rather not take an opioid.
I first experienced burning on the soles of my feet after work around 6pm, and this was for about 7 years before the pain suddenly escalated to unbearable over just 4 days at the end of 2016, never to return to those early levels.
I have experienced some night sweats but whether it's from SFN or something else, I can't say. I can relate to loss of balance, I tend to crash into furniture as I walk past, or bang my hand against things and cause a bruise. Other things like somnolence, fatigue, depressed mood, sleep deprivation, and memory depletion I put down to the combination of Pregabalin my hypertension medication and the whole SFN experience causing me to have to retire from my career 5 years early, change from an active outdoor life to a sedentary indoor one has taken a toll on me, physically and mentally. I am fortunate to have a loving, supportive wife, children and grandchildren to keep me going. This is my first post ever, and probably too long, but is there anyone else missing sleep due to the night time pain?
Welcome @mike365, I know it has to be difficult when the pain keeps you from getting the sleep you really need. I am wondering if you and @sueholdenf might find the following discussions helpful.
Welcome @mike365, I know it has to be difficult when the pain keeps you from getting the sleep you really need. I am wondering if you and @sueholdenf might find the following discussions helpful.
Hi John , you seem to be up on this neuropathy problem , I’m the 60 year old woman , suddenly I am having bouts of awful heat going through my body out of the blue , it’s quite distressing as it happens quite a few times a day . With the risk of sounding dramatic it is as though I cannot control my body temperature , have you ever heard of this ,
Hi John , you seem to be up on this neuropathy problem , I’m the 60 year old woman , suddenly I am having bouts of awful heat going through my body out of the blue , it’s quite distressing as it happens quite a few times a day . With the risk of sounding dramatic it is as though I cannot control my body temperature , have you ever heard of this ,
Hi everyone , I have small fibre neuropathy diagnosed 4 years ago , I am a sixty year old woman . I have tolerated this condition until now . I don’t want to blame the phyzer vaccine , but 2 days after having it all hell broke lose . I am in a lot of pain now , mainly feet , burning , loss of sensation and my balance has become poor . Why I am writing this is I now am also experiencing Unexpected bouts of extreme heat that comes on for no reason , it doesn’t last long but it is quite distressing. Is there anyone who has a problem with their temperature and this condition please respond if you experience this and if you know why
I ALSO a couple of days after pheizer booster got terrible burning tingling electrical feeling throughout my body. The peripheal neuropathy originally began. After the initial vaccine but was manageable. No answers from neurologists just prescribe drugs. My internist told me to take folate and i am trying a natural nerve formula daily nerve support bought on Amazon. Seems to be helping for the moment anytway, I continue to do my own research because I do not want to take these drugs they prescribe. Tried only a short time and did not like what they made me feel like, Soi I continue to follow these sites and trying to get into neurology dpt at Mayo which is next to impossible
Welcome @mike365, I know it has to be difficult when the pain keeps you from getting the sleep you really need. I am wondering if you and @sueholdenf might find the following discussions helpful.
Hi Sue and John, thank you for the comments, welcome and information. I'm working through strategies to get to sleep, including listening to boring podcasts in the background. I have tried listening to podcasts like "Sleep with me", and others similar, on Spotify and found it sometimes works. I also listen to favourite old music albums in the background helps also. I have pills I can take, but limit this strategy to once a month or so.
Staying asleep is a different matter. I'm thankful if I can get 4 hours, and overjoyed if I get 6 hours. I try to have a nap in the afternoons, and now view this as part of my SFN sleep cycle.
Thank you both for your comments, it helps just to know I can contact someone, and express myself.
Thankyou for this information , I will bring it up with my neurologist , as my GP. Does not know much about this condition . Another thing if you could help me please , I’m interested to know if or when. People with neuropathy affecting the feet , eg , numbness Consider to stop driving , would it be up to the patient or can the neurologist Stop you driving . They are quite happy with me driving at the moment , but if I feel the need I will install hand controls to the car ( not looking forward to that ). Do you know where I can get more info on this please . Susan
I ALSO a couple of days after pheizer booster got terrible burning tingling electrical feeling throughout my body. The peripheal neuropathy originally began. After the initial vaccine but was manageable. No answers from neurologists just prescribe drugs. My internist told me to take folate and i am trying a natural nerve formula daily nerve support bought on Amazon. Seems to be helping for the moment anytway, I continue to do my own research because I do not want to take these drugs they prescribe. Tried only a short time and did not like what they made me feel like, Soi I continue to follow these sites and trying to get into neurology dpt at Mayo which is next to impossible
Hi Sue and John, thank you for the comments, welcome and information. I'm working through strategies to get to sleep, including listening to boring podcasts in the background. I have tried listening to podcasts like "Sleep with me", and others similar, on Spotify and found it sometimes works. I also listen to favourite old music albums in the background helps also. I have pills I can take, but limit this strategy to once a month or so.
Staying asleep is a different matter. I'm thankful if I can get 4 hours, and overjoyed if I get 6 hours. I try to have a nap in the afternoons, and now view this as part of my SFN sleep cycle.
Thank you both for your comments, it helps just to know I can contact someone, and express myself.
I too don’t get enough sleep , waking during the early hours and that’s it I can’t get to sleep again . It’s awful and I know it makes our medical problem even harder to deal with , thinking of you
I suffered for many years watching the neurophy go from a big tow and foot slap to no longer being able to feel anything at all from my feet. Then my primary care doc discovered I had a hyper active parathyroid. The slightly by only a point or two elevated calcium in the blood higher than normal went unnoticed from 15 to 53. Within hours of successful removal of the hyperactive parathyroid got the use of my toes and feeling improved for 6 months.
But the calcium built up around my disc and excelerated disc degeneration. MRI 2years ago showed many mild bulging disc. Last week 4 in the L spine are now moderate to sever and one in-the T spine is quite sever. Both legs are numb for 8 weeks straight and had 24 hour bed rest massage and 6 hours of tens treatment before the MRI so it showed best case.
Have gone from a day or two a month with little or no sleep to an average of 3 or 4 hour a day depending on the week. But the nights where there is no sleep because muscle relaxer, pain pills and sleep aid are not always enough to get sleep.
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Welcome @mike365, I know it has to be difficult when the pain keeps you from getting the sleep you really need. I am wondering if you and @sueholdenf might find the following discussions helpful.
-- Burning feet and legs: https://connect.mayoclinic.org/discussion/burning-feet-and-legs/
-- Sponge Feet, Tingling and Burning: What can help me to get sleep?: https://connect.mayoclinic.org/discussion/sponge-feet/
-- Burning legs at night. Could something else be causing it?: https://connect.mayoclinic.org/discussion/burning-legs-at-night-could-something-else-be-causing-it/
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
The Foundation for Peripheral Neuropathy has some helpful information on managing and coping with neuropathy that might be helpful - https://www.foundationforpn.org/living-well/lifestyle/managing-peripheral-neuropathy/
Have you done any research into alternative or complementary therapies?
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1 ReactionThankyou John, much appreciated
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2 ReactionsHi John , you seem to be up on this neuropathy problem , I’m the 60 year old woman , suddenly I am having bouts of awful heat going through my body out of the blue , it’s quite distressing as it happens quite a few times a day . With the risk of sounding dramatic it is as though I cannot control my body temperature , have you ever heard of this ,
Hi Sue @sueholdenf, Autonomic neuropathy can cause temperature intolerance and sensitivity. There is a discussion on the topic here - Temperature intolerance and sensitivity - Autonomic Neuropathy?: https://connect.mayoclinic.org/discussion/temperature-intolerance-and-sensitivity-autonomic-nephropathy/
Here's some information on the symptoms from Mayo Clinic -- "Sweating abnormalities, such as sweating too much or too little, which affect the ability to regulate body temperature." --- Autonomic Neuropathy - Symptoms & Causes: https://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/symptoms-causes/syc-20369829
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1 ReactionI ALSO a couple of days after pheizer booster got terrible burning tingling electrical feeling throughout my body. The peripheal neuropathy originally began. After the initial vaccine but was manageable. No answers from neurologists just prescribe drugs. My internist told me to take folate and i am trying a natural nerve formula daily nerve support bought on Amazon. Seems to be helping for the moment anytway, I continue to do my own research because I do not want to take these drugs they prescribe. Tried only a short time and did not like what they made me feel like, Soi I continue to follow these sites and trying to get into neurology dpt at Mayo which is next to impossible
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1 ReactionHi Sue and John, thank you for the comments, welcome and information. I'm working through strategies to get to sleep, including listening to boring podcasts in the background. I have tried listening to podcasts like "Sleep with me", and others similar, on Spotify and found it sometimes works. I also listen to favourite old music albums in the background helps also. I have pills I can take, but limit this strategy to once a month or so.
Staying asleep is a different matter. I'm thankful if I can get 4 hours, and overjoyed if I get 6 hours. I try to have a nap in the afternoons, and now view this as part of my SFN sleep cycle.
Thank you both for your comments, it helps just to know I can contact someone, and express myself.
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Like -
Helpful -
Hug
4 ReactionsThankyou for this information , I will bring it up with my neurologist , as my GP. Does not know much about this condition . Another thing if you could help me please , I’m interested to know if or when. People with neuropathy affecting the feet , eg , numbness Consider to stop driving , would it be up to the patient or can the neurologist Stop you driving . They are quite happy with me driving at the moment , but if I feel the need I will install hand controls to the car ( not looking forward to that ). Do you know where I can get more info on this please . Susan
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1 ReactionThanks for your response silvers 12
I too don’t get enough sleep , waking during the early hours and that’s it I can’t get to sleep again . It’s awful and I know it makes our medical problem even harder to deal with , thinking of you
I suffered for many years watching the neurophy go from a big tow and foot slap to no longer being able to feel anything at all from my feet. Then my primary care doc discovered I had a hyper active parathyroid. The slightly by only a point or two elevated calcium in the blood higher than normal went unnoticed from 15 to 53. Within hours of successful removal of the hyperactive parathyroid got the use of my toes and feeling improved for 6 months.
But the calcium built up around my disc and excelerated disc degeneration. MRI 2years ago showed many mild bulging disc. Last week 4 in the L spine are now moderate to sever and one in-the T spine is quite sever. Both legs are numb for 8 weeks straight and had 24 hour bed rest massage and 6 hours of tens treatment before the MRI so it showed best case.
Have gone from a day or two a month with little or no sleep to an average of 3 or 4 hour a day depending on the week. But the nights where there is no sleep because muscle relaxer, pain pills and sleep aid are not always enough to get sleep.
Hope you find answers.