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Have any fellow sufferers of PN found anything that helps with the pain or neuropathy?

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Laylaremi
Laylaremi Community member Posts: 2 Listener
Hello fellow sufferers , I am an 80 year old widow with many health issues since 1986 when I developed Pemphigus (my grandmother died from it) it is an auto immune problem. 
Developed PN about a year ago and as many of you will have experienced not had a nights sleep since. 
I don’t think unless you have experience PN pain you could imagine how distressing it is. 

I am lucky in so much I have all I need and want and manage to potter in the house on walkers and do a lot of  furniture surfing ! Have a mobility scooter so even manage to water plants  in the garden, a lady helps once a week. 
I have a car but due to PN will not drive as do not feel it is fair to others if I do not have proper feeling in feet.

Been on Pregabalin, and now Gabapentin and not had any relief from them. Have been on so many more medications since 1986 which have kept me alive and I am grateful for. 35 years on steroids does nothing for weight !!! 

Have spent hundreds on creams etc advertised for ‘ Neuropathy’ and nothing works. 

Have any other sufferers found anything that helps ?

in desperation last night I tried Vicks Vapor  rub - no it did not work.

Are there any exercises that any one can recommend? I cannot walk as most people suggest so looking for anything that may help me get some sleep.

Some of your stories are heart breaking and I wish you all peace and solutions, free from PN.
Regards
Layla

Comments

  • Biblioklept
    Biblioklept Community member Posts: 5,022 Championing
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    I don't have PN so can't recommend anything but I hope you find some relief and things that help you. 
  • Laylaremi
    Laylaremi Community member Posts: 2 Listener
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    I I have not slept at all for 4 nights and feeling like a zombie, not functioning properly during the da , brain fog. I cannot understand why it is worse when I lie down.
    I am elderly and disabled and getting nowhere with NHS. I understand how stretched they all are, I worked for it for 35 years .
    my health has been bad since 1986 when I developed an auto immune disease which my grandmother died from, but PN is the worse thing I am trying to deal with.it is in my right leg and the pain comes every 20 seconds .
    Have just finished Pregabalin, no help. Started Gabapentin , have to try it.
    i have spent £1400 on Pernaton over a couple of years as it is the only thing that help with sciatica and arthritis, and to a lesser degree PN. Use it in desperation.
    Like all PN sufferers just need a simple solution and some sleep. 
    Good luck to everyone and hope we find something soon. 
  • SueHeath
    SueHeath Community member Posts: 12,420 Championing
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    Morning @Laylaremi welcome to our great group.
    When you are ready have a look around the site, any problems just ask
    You will find lots going on, join in with any of the chats or ask your own question.

    Hope you do not mind me asking but was is PN ? 
  • chiarieds
    chiarieds Community member Posts: 16,198 Championing
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    Hi @Laylaremi - & welcome to the community. I don't know if you've looked further online, but there's a website about PN, which I believe is Peripheral Neuropathy here:  https://www.foundationforpn.org/
    I had a quick look at their resource library, & found an interesting one which suggested ankle length compression socks may be helpful to wear in bed: https://www.foundationforpn.org/peripheral-neuropathy-qa-why-does-pn-pain-bother-people-more-at-night/
    I hope the Gabapentin helps (I couldn't tolerate it, but Pregabalin helps), altho in the same Gaba family, quite often it seems that one may work better than another, as we're all different, so fingers crossed.


  • peggy123
    peggy123 Community member Posts: 16 Listener
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    I feel all your pain I have not slept other than two hours per night for past two years .horrible disease nureopathy 
  • peggy123
    peggy123 Community member Posts: 16 Listener
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    Also the worst now is all over body nureopathy itch it’s just awful 
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