Increasingly Difficult to Accept Peripheral Neuropathy

Hello @pmom, my name is Chris and I certainly understand your point. The fact that there is no cure at this time is gut-wrenching at first. I was diagnosed with SFN (small fiber neuropathy) in 2013. I became quite interested in end-of-life options for some time. I couldn't imagine myself needing a wheelchair or restricting my activities, or being excluded from participation because my pain was just too much.

And when we know that neuropathy is the result of very slow nerve regeneration, it does seem reasonable to expect our world of technology to jump in and help.

So....what I have learned is that it is time to buckle down and learn how to cope.
1. Accept the diagnosis.....use mindfulness and meditation to help you.
2. Become educated about the condition and the available and legitimate coping options.
3. Find pleasurable alternatives to activities that are no longer available to you.
4. Get positive support for your abilities by volunteering in some fashion, somewhere.
The rewards for helping others seem to take our minds off our own displeasures.

Doctors specializing in neuropathy have chosen a difficult path. There are no miracle surgeries waiting to be discovered. And so far, there are no treatments or medical concoctions that have the ability to create nerve cells. And still, they have chosen to help us all.

Do you have a confirmed diagnosis for your neurological condition that you can share? What three medications did you try? Perhaps there is something that Connect members may be able to contribute that has the potential to be helpful.

What is your most challenging symptom?

May you be free of suffering and the causes of suffering.
Chris

Decided to reply as you saismd so much and I am truly sorry you are divorced. How did it get that you had to go to the hospital a lot and all? If you don't mind my asking that is. 15 years is a long time and I guess you are not that old. I am 65 and was a youthful one but not the case now. Relentless pain and pins and needles in my feet and lower legs prevents me from leading a normal life. Writing this is a distraction which is good

Because of my autonomic neuropathy I would have autonomic storms ( there are numerous names for this like autonomic dysnomia). It’s worse then dying. It’s like dying but not finishing the dying process.
I also am 65 and it started with Atrial Fib and severe pain in my feel. It felt like the bones in my feel were coming through my skin. All this progressed to where I am today. Hospice has been a great help. Pretty depressing that I’m declining pretty fast. But now when I go to the hospital they tell me there is nothing they can do for me. My last visit was my blood pressure was 60/44 and my oxygen level was 83. I’m now on oxygen 100% of the time now.

I meant feet not feel. Sorry.

I hope you get support from your family. You are in a mess and need looking after from the sounds of it.

No family in the area. My wife divorced me after 25
Years and 4 kids because of my illness. It’s jut me and my 4 huskies. It’s been difficult but Everthing in life is. With this disease we have nothing come easily.

That's awful for you. With four big dogs that's a handful for you. Great company though. I just hope things work out for you and improve if that is possible in our states of being. It certainly isn't easy. I try and distract myself.

Is true.No cure.To make your days easy just accept it.Do things you like to do.And keep your mind busy.I hope one day a doctor will find a cure.

I hear what you are saying. I am 70. I have had PN for aprox. 6 months. I just got a MRI for my cervical spine and brain. I have pain all day except for the night time med naps that last about 3 hrs. each. ( 5-6 hours sleep ). You say accept this. I am having difficulty "forgetting" the pain. Distract myself with things I am interested in. The only thing I can become interested in is stopping the pain. Ironic no? I am angry that my life has crashed into this PN illness. Self-pity is the worst, and I try my best to not wallow in it. But I am now aware that I am jealous of people who live their lives without pain. Sick no? I am chair ridden basically. If I exercise more that 20 minutes I get fatigued. I do not like this at all. I will calm down before bed and try to accept that tomorrow I will have to cope and manage this illness again. So what is the trick in accepting something you don't want?

I completely empathize with you. I developed neuropathy at 24 years of age in 1994. It was a nuisance until I got the COVID vaccine which has ruined my life. I have a good job (but disability on the horizon), lovely wife, terrific boys, nice home. And small fiber neuropathy is so debilitating it outweighs everything.

Truth is, is has sapped my will to carry on. I’m just so tired of fighting. I’m exhausted. Tears are streaming down my face now. I want to live. I just don’t want to live like this.

As if that is not cruel enough, I’m virtually certain that my eldest son has SFN and I also suspect one of the younger ones does as well. How is a person expected to have the strength and courage to endure this themselves virtually their entire life, but also bear witness to their children suffering the same fate? It’s all too much.