Polyneuropathy Pain
 

Hi I just cant take the pain anymore! feet, legs, hands, arms hurt all the time . had to stop working 8 mon ago trying to get ssdi. I cant take it being alone all day I'm going crazy...........

All I can say is I understand. I am alone with the exception of my wonderful dog and it is difficult. Not having someone to talk (to vent to) makes it even more difficult to deal with and I tend to focus more on my pain. I have started meditation which helps for the short term....it keeps my mind quiet. I have been doing yoga for quite some time now and that helps me. It seems we have to find something we like that we can do that helps keep our minds occupied. The doctors don't get it. I don't know what wil have to take place to bring this horrible disease to the forefront. But something WILL happen....hang in there.

I know exactly how you feel too. I don't know about you but for me getting very upset intensifies the pain significantly. But, the pain and situation this has brought about make me very upset. I'm sure most of us here can relate. Like you I worked and had to stop. The stress of the additional worries relating to money and security can take their toll. If you can get the ssdi and feel some level of financial comfort - even if it's far removed from what you had- there may be an impact on the stress and in turn the pain.
I'm having serious conversations with people I know about accessing Marijuana now. It's another stress as I don't want to get caught out on that one, especially as a parent. I'm sure a few of my curtain twitcher neighbours would sniff it a mile off. But, managing the pain is so important. I'm hoping it might help a bit.
Tramadol can be helpful when things are severe and I feel hysterical with pain. I don't know what you take but that is an option. I try not take it every day but that can be hard.
You aren't alone so I hope there's some comfort in that.
I've applied to a few voluntary positions with the hope of something for 4 hours a week max. I've looked at roles where you are seated but engaging with people. Sometimes the pain is so bad that nothing escapes it apart from mental distraction which can push it slightly to the background. If you are only recently out of work you might not be in the right place for that yet. I appreciate it might take everything you have to get up and do it so don't want to undermine your suffering by suggesting that.
It's hard dealing with such awful pain alone. I truly understand that. The worst part is often that you know nobody around you would even comprehend what this feels like. So even when I am around other people, I often feel very alone.

you certainly are not alone. you have a lot of company with the pain, disability, isolation, and career loss. I too lost a career and everything that goes with it , money, advancement, social aspects etc. Sometimes I go out to a store or meeting and stumble with my words because i havent spoken to anyone else that whole day until then. Are there any peripheral neuropathy support groups in your area? It helps to meet with and talk to people who understand what you are going through.

Dearest catdog, We hear you and we understand.

We are here for you. Your pain is real and your loneliness is too. I am almost completely housebound at this point. And I cannot drive, but I hope to able to drive in the future.

Is there a pain support group or a program teaching methods of handling pain in your area. I don't mean medications, I mean relaxation and meditation, use of heat, exercise, and other means of managing pain. I also see a therapist once a week. This kind of pain damages not only my life, but lives nearest to me, and I owe it to everyone to get as much help as possible.

Also there ARE several medications on label for the pain of neuropathy, particularly Cymbalta, which I have taken since 2010, and other SSRIs, and any one of the drugs for seizure disorders (Gabapentin, also called Neurontin, Depakote, and a host of others).

I was taking Naproxen Sodium (Aleve, an NSAID) and it was my 'go to' magic pain relief, UNTIL, I began having gastric pain every night. Once I stopped the Aleve, the pain went away. Now I take Tylenol, which isn't as effective, but provides some help. It's a mixture of medications, different for each of us.

The key to progress of many of us is finding a team of professionals to support us with medications, therapy.

Exercise in a wam water pool is central to my feeling of well being...it keeps me flexible and doesn't add to my pain. In fact it helps.

Don't give up.........keep asking for help, You deserve it.

Hugs, ElaineD