Looking for up to date post for neuropa... - Neuropathy Support

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Looking for up to date post for neuropathy and PN.

trishj46 profile image
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Where are up to date post???

trishj46

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trishj46
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Cb1963 profile image
Cb1963

Hi trishj46, unfortunately not many folk tend to use this site much regarding nureopathy, I'm a long term sufferer myself so if you wanna chat about your condition I don't mind, I've had mine for nearly ten years, its in my feet, legs and is in my hands, and yes it's painful, unfortunately treatments are very limited, and trying to cure this condition is slim, so if you want any more information, I'll be happy enough to message you back 😊

trishj46 profile image
trishj46 in reply to Cb1963

I have had for ten years of neuropathy, spinal cord pain. spreading just about everywhere. I have it worse rectally & vaginally---non-stop right now. I am packed in ice! There is really no cure for me---I have had everything! I am gradually losing feeling, but not nerve pain in my leg, genital, feet, back. I could scream. Because of spinal cord I am going to lose legs and more. The only thing that helped for a year was compounded medical suppositories of gabepentin and lidocaine every six hours rectally---it was a miracle---ask your doctor!You can use other meds too rectally that might help---we are trying others right now!

Where do you live?? What have you tried? I am in bed a lot! Hate it!!! Have you had the injections? Do you have PN or just neuropathy? It is beyond painful for me, its consuming my life! If you want to write back, ok. Just buried my sister on Friday, so I am a wreck!!

My name is Pat ! Good Luck! Hugs! trishj46

Cb1963 profile image
Cb1963 in reply to trishj46

Firstly so sorry to hear about your sister 😢, and I'm in the UK 🇬🇧, my PN was ultimately caused by drinking, please don't judge me, I had a couple of traumatic incidents that led me into a life of alcohol, my medication I use is pregabalin, mirtrazapine, and lidocaine patches, its my feet that give me the biggest problem, and I don't think I'm near the same extent as yourself, but I now need B12 injections, and this deficiency also has similar issues, but also causes tinnitus, the PN is constant burning, pins and needles, you name it, it never goes away, I physically ache anyway, so I don't know if this is old age, or partly because of the condition, the PN, can be caused by medication or failed surgery or collapsed discs so many individuals are suffering in silence, and I'm surprised this page doesn't have more followers, maybe because of its difficulties in trying to make individuals better, and the success rate is so low might be that's the reason why, all in all, not a pleasant condition , I'm sure it will take many years before the specialist's get on top of this condition to help people , and say we have a cure, btw my name is Chris, pleasure to speak to you 😀x

trishj46 profile image
trishj46 in reply to Cb1963

I was on pregalin & so many others, but get so many side effects. I would like to be on an anti-depressant but can't with neurogenic bowel. I use to write on this site all the time but everything seemed to change, so I stopped. I was up all night with rectal burning and pain---I always use ice pack and the suppository did help. Do you see any kind of therapist? I do and its a help as I am pretty isolated in this house and I need to talk, there are pain therapist. Yes my feet are bad too. They go back and forth between burning or freezing! I put heating pad or ice packs, but goes on all night too.When I walk they feel like I am walking on nails! I can get pretty depressed at times, especially now with my sister gone. She was a big help to me! Have you tried any of the neuropathy creams for your feet? They are over the counter and can be a big help. Yes, I physically ache too everywhere, and It can also be old age with me too, lol.

There is a spray for burning feet---I think its called STOP THE PAIN---it cools the feet down. Do you get spasms in your feet? See I had a spinal injury years ago and I got PN from that!!! Take care! If you want to write, its up to you. I have a few people I write to and it a help!!! HUGS!!!! Pat

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