Increasingly Difficult to Accept Peripheral Neuropathy

Posted by fisbo @fisbo, Oct 10, 2022

I am finding it increasingly difficult to accept peripheral neuropathy it's all very well people coming up with suggestions but carrying them out is quite another. I am no longer who I was and think I am boring and miserable because I am now. Pain takes over and I have become fearful nervous prone to panic attacks which are awful because I start to shake with worrying about the future. I have other worries anyway but if this damned PN would go away it would help.

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On antibiotics, due to the fact that I had Cipro, Augmentin, Avelox and other heavy duty antibiotics in and around the time my PN started due to a few bouts with pneumonia, I asked my primary doc at that time the same thing. Good luck getting a straight answer. Several yeas later, around 2013, I ended up with another bad infection which I picked up of all places on a cruise ship, ended up in the ER after the ship docked and had to get Vancomycin. About 18 months later, the PN became more intense. So far, 3 neuro docs have dismissed that as the cause for my axonal PN. I was told the time lines could not have initiated the cause for my type of PN.

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@nukhan

In reply to @pacodennis Have your ever used cipro or any other antibiotic of the fluoroquinolones family if you can recall.
I understand these antibiotics are known for their serious long lasting if not permanent side effects encompassing symptoms ranging from psychiatric and sensory disturbances to problems with muscles, tendons and nerves that continue after people have stopped taking the drugs. They call it being 'floxed'

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First thing you can do is accept the situation because is no cure.And if you accept it will make your days easy.I suffer for the same thing and in my left foot and I do massage and help a lot.Sometimes I put my feet and cold water.I wish you the best with my advice.Blessings

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@fisbo

I am 65 my pn is in the feet and lower legs presumably you are same? It is a lonely journey as I feel that nobody really listens or particularly cares this is what makes it so awful. I spend days just laying down. I swim but that's not what it used to be and I find myself more like a beginner in the pool I am so slow now. This pn is no joke is it and what the hell are we supposed to do? There has to be a reason and cause and that in turn should be remedied that's how I see it. I am sure if we were famous it would be cured or at least remedied in some way to ease the pain.

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I’m in constant pain. No hope in sight.

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Our fate! As I have aged so many of my peers are suffering severe, disabling and in many cases terminal prognosis'. I try and tell me that I am one of the lucky ones and even though it hurts at times and is miserable, try at least to feel like I am lucky. Last week a very good friend who just retired and looked 20 years younger than he was, got a pretty bad cancer diagnosis and this is his first year retired from being a HS principal. Another former colleague taught kindergarten for 40 years. His very first post retirement weekend went like this; toss tennis ball up to serve and wham....he goes down forever. Any how, this is how I get by with neuropathy. As far as recommendations go: keep on the move i.e. swim, walk, stretch, do house work and make goals.....little goals.

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@pamelaz

I’m in constant pain. No hope in sight.

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Me too Pamalez, (for @fisbo too) I'm 71. Do you have problems with other people not understanding what you are going thru? Mine is diabetic related. What have you tried and what seems to work even a little? When my nerves in my feet are inflamed I just don't want to do anything. Can't even read a book and watching a ballgame is even difficult. It's a horror but I think different things work for different people.

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Mine hurts all the time. I don’t have anything that works and it’s not diabetic. I can hardly walk. I’m trying Cymbalta but that makes me walk funny and gives me tremors. Doesn’t work I tried Gabapentin but had an allergic reaction to it my mouth swell shut. And my who body goes into spasms. It doesn’t even put me to sleep. It makes my mouth do horrible things Lyrica isn’t any help and I have GERD.

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I hear ya. It miserable and seems to define us because I’m always turning down my friends who invite me over for dinner or go to the lake or watch a movie. I got tired of always breaking the commitments I made. So I just say no. Some I am defined by this disease. I’m sorry you are struggling. But we all are and it never gets better and never goes away. With that said there are many medications that can help. But see a neurologist, not any neurologist, find one who specializes in neuropathy. If not they will be of little help.

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@julkun

Me too Pamalez, (for @fisbo too) I'm 71. Do you have problems with other people not understanding what you are going thru? Mine is diabetic related. What have you tried and what seems to work even a little? When my nerves in my feet are inflamed I just don't want to do anything. Can't even read a book and watching a ballgame is even difficult. It's a horror but I think different things work for different people.

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I’m 65 and have been sick with this for 15 years. I also get horrible attacks where nothing works. I can watch TV or listen to music, it’s too much sensory overload. I want to lay down in a cool dark room and try
To sleep it away.

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@julkun

Me too Pamalez, (for @fisbo too) I'm 71. Do you have problems with other people not understanding what you are going thru? Mine is diabetic related. What have you tried and what seems to work even a little? When my nerves in my feet are inflamed I just don't want to do anything. Can't even read a book and watching a ballgame is even difficult. It's a horror but I think different things work for different people.

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Yes people don't understand and probably think I am miserable which I am with this Nothing gets done housework wise and I feel that things are falling apart. The neurologist has arranged a DAT scan which test for Parkinsons but that won't address what I went to see him for .....my peripheral neuropathy.

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@frattmaa

I hear ya. It miserable and seems to define us because I’m always turning down my friends who invite me over for dinner or go to the lake or watch a movie. I got tired of always breaking the commitments I made. So I just say no. Some I am defined by this disease. I’m sorry you are struggling. But we all are and it never gets better and never goes away. With that said there are many medications that can help. But see a neurologist, not any neurologist, find one who specializes in neuropathy. If not they will be of little help.

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You don't get any choice with neurologists under NHS so getting one who specialises in peripheral neuropathy would be lucky. Presumably you suffer with it. I find myself sleeping away a lot of the time. I go swimming but that has gone down hill nowhere near as I used to be. I have been like this for 2.5 years now and not getting used to it. I cannot accept it and I am incredibly depressed about it. Everything about me has changed and I am nowhere near looking as I used to look and be as a person. It's taken so much away from me and left me afraid and nervous.

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