Addressing the psychological impacts of neuropathy

Posted by andyjustin @andyjustin, Apr 26 6:18am

You know, I read a lot of posts about the pain and medication and dealing with the pain physical. I don’t see a lot of post dealing with the psychological aspects about the daily grind about the amount of time we spend thinking about our pain and weighs on our thought processes and interrupts Our ability to act in clearheaded manner, I spend hours a day sometimes in a very dark place, thinking about the ramifications of my autonomic neuropathy and mood swings. How my neuropathy affects my ability to socialize sometimes and interact with others when I try to go to sleep at night and I hear ringing in my ears and my thoughts take me or make me think about what symptoms going to come next what ability I’m going to lose How it’s impossible to make Those close to me understand how challenging this can be living with one autonomic neuropathy

Interested in more discussions like this? Go to the Neuropathy Support Group.

@26sabrina

I am 75 and have been dealing with peripheral neuropathy for 8 years and only recently found a neurologist who actually spent time with me from the start. I am currently on Nortripyline and I'm pretty pain free. I have rare days that my feet feel very hot and swollen. On those days I take Tramadol maybe twice on that one day.
For the first 5 years I was an emotional wreck. It seemed like no one understood what I was going through. I felt that even the neurologist I was seeing didn't understand my distress. I tried again couple support groups but was still depressed.
Then I heard something totally unrelated to neuropathy. It focused on taking responsibility for your life. I realized that I am in charge of my life. I had been holding on to lots of stuff both physical and emotional. I started slowly decluttering my house. Sometimes a couple of drawers, I filled bags with clothes that I wasn't wearing some I kept sentimentality. I've been doing this in spurts. I have also taken time to give myself permission to unload some of the stuff I've been holding on to emotionally. I've forgiven myself for stuff I had been beating myself up for. I have made peace with the people in my past that I can't contact.
I didn't do all this alone. I have a psychiatrist that I finally started really talking to.
Now my neuropathy is a very small part of my daily life. I do live one day at a time.

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Taking control, great step. Getting your neuropathy under control even better.

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@diana55

Je me suis reconnue dans votre récit. Egalement atteinte depuis 8 ans. Traitée par immunoglobulines. Ça m’aide mais bien entendu ça ne guérit pas. Les jours se suivent et ne se ressemblent pas. J’utilise une pommade de Laroxyl (préparation en Pharmacie) et que je garde au frigo. Ça m’aide à calmer (momentanément) mes brulures- j’utilise également les patchs Versatis.
Quand les douleurs sont insupportables je prends Izagi + 1 Doliprane (tous ces médicaments m’ont été prescrits par ma Neurologue)
Bien entendu je ne peux pas faire de projet
Je ne peux pas faire

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I do not speak French sadly I can’t understand your post

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@andyjustin

I know it’s hard to make family friends and loved ones really understand how debilitating neuropathy can be it, invade your thoughts, your body, and your soul and I’m beginning to believe that it’s impossible to make people really understand the weight the burden we all suffer at times I believe that’s why these chat rooms are very important. I know it makes me feel less alone and regardless to the façade I put on to all those around me not letting on how uncomfortable my symptoms can be thinking that they will think that I’m just crying wolf bottom line if you don’t have neuropathy and it’s many forms you can’t understand it at least that’s the way I see it

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Hello Andy,
Believe me that, sooner or later, people like us trying hard to cope with this insane condition will eventually get to a point of not really caring one way or the other what people around us may or may not think. Whatever they think or not think will not have any effect on changing what we're going through. No one knows what a certain pain is except the one going through that pain. Unfortunately, we put too much into thinking that the closest people to us, be it family or friends, will get out of their stupid boxes and try to find out about what we're going through. Sadly enough, the state of the world today is: me, myself, and I. Caring and compassion are evaporating from people's vocabularies. No wonder the world has come to such a chaotic state where only the dollar is making people dance.
It's never easy, but we need to move on as best we can and stop looking for care from anyone. And like you said, this chat platform is probably our only sanctuary.
Have you by any chance looked into the Foundation For Peripheral Neuropathy. You might want to check out their website: https://www.foundationforpn.org/support-groups/
take care and please stay in touch.
gus

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@26sabrina

I am 75 and have been dealing with peripheral neuropathy for 8 years and only recently found a neurologist who actually spent time with me from the start. I am currently on Nortripyline and I'm pretty pain free. I have rare days that my feet feel very hot and swollen. On those days I take Tramadol maybe twice on that one day.
For the first 5 years I was an emotional wreck. It seemed like no one understood what I was going through. I felt that even the neurologist I was seeing didn't understand my distress. I tried again couple support groups but was still depressed.
Then I heard something totally unrelated to neuropathy. It focused on taking responsibility for your life. I realized that I am in charge of my life. I had been holding on to lots of stuff both physical and emotional. I started slowly decluttering my house. Sometimes a couple of drawers, I filled bags with clothes that I wasn't wearing some I kept sentimentality. I've been doing this in spurts. I have also taken time to give myself permission to unload some of the stuff I've been holding on to emotionally. I've forgiven myself for stuff I had been beating myself up for. I have made peace with the people in my past that I can't contact.
I didn't do all this alone. I have a psychiatrist that I finally started really talking to.
Now my neuropathy is a very small part of my daily life. I do live one day at a time.

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Hello Sabrina,
Having been recently diagnosed with neuropathy and confirmed at the age of 67, I can tell you for a fact that the psychological aspect of neuropathy plays the biggest role in coping with the condition. We not only need to declutter ourselves from material things but we also need to declutter ourselves from toxic uncaring people around us. And that takes much more energy to achieve. And yes, one day at a time since for me each day is diferent with this condition.
Take care and keep up the decluttering you have started and the connection with your psychiatrist.
Wishing you the best,
gus

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The biggest frustration for me, (well, second to dealing with Medicare Advantage, as Andy has so well described) is trying to get some guidance from neurologists on ways to handle symptoms without just having more medication thrown at me. Also, having them level with me and explain a diagnosis, which at times I've noticed changed on written reports without the doctor actually explaining why or what it meant. I mean, they have to go out on a limb and use specific codes for insurance, why not let me in on it as well? Post-Covid, medical care seems to have gotten even worse. Peer-group "commiserating", like this, is sometimes more helpful.

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I’ve given up on neurologist as far as dealing with my AN my diagnosis has been made very clear to me and it’s not going to change, and I cannot wish it away. I think these groups offer better advice and ability to commiserate the negative impact each of us feel with neuropathy. I think these groups let us share our thoughts and some of the methods that we individually use to deal with our specific neuropathy for some of us medication works a variety of supplements, spirituality meditation, and just the ability to share our personal experiences. I’ve learned that being able to share those experiences Has given me a better understanding and the ability to deal with my neuropathy, and I know that I am not alone. And I am not the only individual who is living with the symptoms both psychologically, and physically I don’t feel so isolated anymore.

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@andyjustin

I’ve given up on neurologist as far as dealing with my AN my diagnosis has been made very clear to me and it’s not going to change, and I cannot wish it away. I think these groups offer better advice and ability to commiserate the negative impact each of us feel with neuropathy. I think these groups let us share our thoughts and some of the methods that we individually use to deal with our specific neuropathy for some of us medication works a variety of supplements, spirituality meditation, and just the ability to share our personal experiences. I’ve learned that being able to share those experiences Has given me a better understanding and the ability to deal with my neuropathy, and I know that I am not alone. And I am not the only individual who is living with the symptoms both psychologically, and physically I don’t feel so isolated anymore.

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I agree. It has been an ordeal that came upon me quite unexpectedly. You are not alone and I need to remind myself of that. But never give up hope.

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