Psychological effects of living with neuropathy

Wow. Couldn’t agree with you more!!!! If I don’t get up and deal with the pain I wouldn’t have a day at all. Pain is 24/7 and always changing. I may be out and about, but it doesn’t mean I’m feeling well. I’m just dealing with the pain. It’s ever present!!!! I do what I can do, when I can do it. Never heard of SFN until I was diagnosed. But knowing what you have doesn’t make the pain disappear. You just know why you’re in pain. It took 3 years for a proper diagnosis. Three misdiagnoses and 3 useless surgeries only made matters worse. The medical community seems clueless on how treat this disease. I’m considered idiopathic, so there are no targets for treatment. It’s all about pills!!! And nothing seems to work very well. So I deal with the pain and try to keep a smile on my face.
But it’s not easy. And it will probably just get worse in time. I haven’t given up just yet. Seeing a new neurologist in January. Appointment made in February!! Eleven months to just get a consult. But I’m told she’s the best. Time will tell.

I agree, doesn’t help much,like you said.
If I take a Tramadol 50mg tab it helps,but it also makes me sleepy.
I take one at bedtime so I can sleep without foot pain.

You have my empathy and understanding.
I, too, whine……..in my head. (I can’t imagine that anyone wants to hear my tale of woe over and over again, so I try to keep it to myself.)
That’s why this on-line forum has become an important part of my life. I read and think about the similar struggles so many others are facing. All who post on this topic have become my “virtual” friends. You, too, understand the destruction that chronic, severe pain wreaks in one’s life.
Thank heavens we can whine here, because I think that it’s a natural expression of our frustration.
I know I’m not the stoic “warrior” who is often written about in inspirational essays and memoirs.
I hate this constant pain, and I’ m grateful for a place where I can express that.
Whine on, we’re here and we understand.

I understand!!!!!!!!!!!!!! I have no life anymore! Husband does not understand, feel alone. Family sadly is gone. We were All so close, I miss them a lot! He helps me but emotionally nothing. I get out of bed around 12, 1:00. Pain, spine from failed Laminectomy, pain, Small Fiber Neuropothy, Sojgrens. Hip surgery. Sitting very painful.
Due to the Neuropathy the nerves bowel area very difficult passing stool, Urinate constantly 24 hours a day!

I had a failed Laminectomy 2008, Morristown Medical Center, NJ.
Surgeon REMOVED : S-1. L -2 L -3 L-4 L-5 NO FUSION!!!!!!!!!!!!!!!!!!!!!! WENT TO Johns Hopkins PAIN MANAGENENT, HE MADE ME WORSE, HIT A NERVE I SCREAMED, I WAS SUPPOSED TO HAVE MILD SEDATION!!!!!!!!!!!! DUE TO THAT I STOPPED DRIVING, MY WHOLE LIFE CHANGED! NEITHER MORRISTOWN M.C. OR Johns Hopkins ADMINISTRATION CARED WHAT SO EVER! HOW DO YOU GO ON? PAIN HAS TAKEN ME. I HAVE A PAIN PUMP FOR THE SPINE PAIN. TRAZADONE FOR NERVE PAIN, HYDROMORPHONE 4 TIME DAY, NOTHING

To Domiha and others,
Staying in the day has helped me stay away from fearing the future and mourning over lost vigor and independence. Counseling to deal with that grief and fear also helped. My physical therapy includes Aquatherapy at a nearby university pool, along with working against gravity another day at a university clinic with my PT. Because the PN was probably an autoimmune reaction to either spinal fusion surgery for stenosis, anesthesia, or infections unrelated to the surgery, I have also been prescribed immunoglobulin infusions, and they seem to have helped along with PT. My pain has lessened over time, and for that I am grateful. I have a supportive husband, good family and friends. But it is here that we can support one another in a bewildering and “orphan” disease, with few champions of knowledge and in its infancy in research. Check out the Foundation for Peripheral Neuropathy for the best information on that research, and on help for us coping with this multi-faceted disease.

For the first year of my neuropathy which seemed to have started out of the blue, I cried to myself everyday. Until I was cried out. I did find that Cymbalta helped somewhat. But, take heart, many of us on here are waiting for completion of WinSantor’s clinical trial on the use of Pirenzepine gel. So far, results seem very promising. It is hoped that the Pirenzepine gel will stop progression of neuropathy and help regenerate nerves. Phase 3 of the trial is coming up.

I have neuropathy in both feet and calves. It did not show up until I have had to have 3 back surgeries in less than 1 year. My feet feel like stones (no feeling) and having balance issues. I still want to play golf and enjoy this life. Anybody have any suggestions for me. I use laser light on legs and feet at present and a lot of B12 and ALA acid for B12 to absorb.

Welcome @shanegibbs, Sorry to hear your neuropathy started after your back surgeries. I know it's difficult when something interferes with what you enjoy doing. There is another discussion that you might take a look at to see if it might provide some relief for your symptoms.

--- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/.

Another good site for learning what might help is the Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/.

Have you looked into physical therapy or other treatments to see if it can help with the balance issues?

I can feel your pain and frustration.
I too have bowel issues from my neuropathy.
I have no feeling when I have a bowel movement, and I need to look to see if I did.
I have to strain very hard to have a movement, no matter what I take to help.
My husband tries to help me as much as he can, but honestly no one really gets what I’m going through.
My quality of life stinks, and there’s so much I can’t do,that it’s very depressing.