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.

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

I think it’s a given that it’s increasingly difficult to live with peripheral neuropathy or autonomic neuropathy, but the reality is that is one and all of ours reality and I think we’re all trying to search for answers when plainly at this juncture in time they really aren’t any a lot of quote research nothing conclusive as much as I’ve tried to engage in many groups on this website there is this reality we all have to deal with the consequences of our condition. Apparently, many people have found ways to mitigate some of their symptoms, and I imagine all of us will keep pursuing something to help us mitigate our symptoms whether it’s acupuncture, hypnotism implants medications, more medications therapy, and someone so on so I’m being pragmatic today. It is what it is today wasn’t so bad I was able to function very little pain onto tomorrow it’s not frustrating anymore. It just is all the best. Take care.

REPLY
Profile picture for efgh1020 @efgh1020

No cheerleading from here. Just what has so far helped me--
I have felt similarly for different reasons. I had a relatively good run into my old age, eating and exercising healthily. Then, wham! Stenosis, sciatica, failed PT, spinal fusion surgery, unrelated infection, re-hospitalization, dropped left ankle, numbness, pain, neuropathy, defensive surgeon, more pain, then searching for and finally finding an inquisitive neurologist, and an optimistic, knowledgeable physical therapist. Meantime, and crucially, my husband was able to switch to caregiving, assuring me we were still in this together, and I was not a burden. This was key to my beginning to regain a sense of worth.
Staying in the day and staying out of the dark movie my mind can produce about my future also has been key, along with therapy and prescribed medication for depression. Joining the local senior center and continuing a Zoom meeting with a former support group has also helped me keep my head up and more accepting of the "new normal."
In my mid-80's, I am learning to walk again, first with a rolling walker, and lately trying out forearm crutches. I'll still need my power chair, but I have greater leg strength through PT and exercising, and PT will concentrate more now on my endurance. My pain has lessened over the years, which is never guaranteed, but for which I am grateful.
My husband and I are also making plans to get ahead of any future health crises by selling our beloved home and moving to a nearby independent living community. These are big changes, but we are able to ask for and get help from our family, to navigate it mentally and emotionally, and to have this option financially.
So, while this is a long post, it's the condensed version of my time since neuropathy arrived in my life. While it is different from your story, the value we can find here is that we are understood, and not alone.

Jump to this post

Prayers

REPLY
Profile picture for jomarymarg @jomarymarg

Omg. Im so sorry that you have to live with this. I also have severe sensory autonomic polyneuropathy. Im in constant pain throughout my body.
Dr's are having a difficult time diagnosing the cause. Mine began in my toe in 2014, today its all over, my eyes my memory is going. I have it severely in my feet, I can no longer feel the ground and need cane or walker or I'd fall over.
My eyes began with blurring, now the light blinds and hurts my eyes. I've lost a lot of weight due to the disease. Im so weak, fatigued, anxious and lack sleep due to it.
When driving it sometimes feels like I'm in a tunnel it makes me anxious and afraid, but leaves in a couple minutes.
The severe throbbing burning pain in the legs from ankles to buttocks is so much worse when I lye did it's 24 hour pain.
Im becom a mean woman and can't seem to control my emotions.
I thought from the pain med, but have since gone off them and still can't control my feelings, mainly if something irratates me.
My hands and fingers have lost their strength, I drop things. My hand writing is beginning to be affected by it.
I cannot take the gabba, but still take it to help the pain some. It makes me feel so loopy also contributes to my imbalance.
I cannot live with this much longer. It's consuming me and has taken away all my joy, with family, friends, and all socializing.
Tell me you're still with us! I've told my family that this disease is killing me but no one seems to take the time to read up on it. They are oblivious as to why I need my cane or assistance.

Jump to this post

I have suffered with PN from diabetes for 20 years. I have the pain, the stabbing, burning, can't stand to touch my feet pain. They are also numb, but my right foot has more feeling than my left, so I can still drive. Neurologist said there is no cure, live with it. I tried every electrical device that came along, many experimental ones too, nothing worked for the pain. Best that I can get some relief sometimes is with a 24/7 pain patch Buprenorphine Transdermal System 20 mcg/hour. It is an opioid, so a controlled prescription from your doctor. You change it once a week. It does not make you loopy, like the pills do, you don't notice it at all, until you have moments of no pain. It does not take away all the pain, but makes it tolerable. Right now the pharmacy did not have it in stock so I am suffering this weekend. Lyrica and the other frugs did nothing for me but make me gain weight, did not take away the pain. This takes time to build up in the body, so best to not miss any days with it, but it happens in the rural area I live in. I am grateful I can still walk, but it is an unsteady walk.

REPLY
Please sign in or register to post a reply.