Psychological effects of living with neuropathy

I was diagnosed with spinal stenosis of Lumbar area in October 2021. After a year of trying PT, massage, pain clinic with injections in my spine, I finally was almost unable to move and gave in and had a 4-level laminectomy. Immediately, the pain all down my buttocks and legs was gone.... but I then noticed the neuropathy in my feet. It could have been there the moment my stenosis pressed my nerves to the point that it caused the leg pain and I wouldn't have known the differencce. So, whether it is idiopathic.... or from some antibiotic I took in the past... I may never know. At least I am able to walk again. My neuropathy does not (yet) incluide much pain.... rather, my feet just feel numb and tingly. But if I were to walk barefoot and step on something sharp, I would know it. It's just enough to affect my balance slightly. I need to walk every single day and rebuild some strength in my legs. For the two or 3 years before all this we had the Covid lockdown and I was not as mobile. Sitting on my keester most of the time didn't help at all. So i suppose it is a combination of things contibuting to the balance issues. I am still going to PT, but I think that has about reached it's peak. I try to still go and do as much as possible. I may have to walk a bit more slowly.... or rest a bit more often.... but I still make myself go. I feel for those who have terrible PAIN.... and cannot find any relief. I tried Gabapentin (made me loopy) and Lyrica(didn't help but I gained 30 lbs).... and now I'm taking Amitryptiline, but I can't really say it's helping. I'm taking R Alpha Lipoic Acid and Benfotiamine everyday for the past year. Not sure how long one should stay on those, but I'm about ready to cut back and see if they are really doing anything at all for me. If I notice myself getting worse, I can always go back to them. But no point in spending the money for things that don't really help a lot. Welcome to all newcombers here. I have not been her long, but I have found this site to be chock full of great information from others who are walking the same, or similar, path. Best to everyone! Mike

@domiha Mike - reading your posts, I have to be honest, in light of your situation I feel you are handling this quite well. Why? You are discussing it and I feel that is part of the "healing" and to get to various acceptance points in this damn disease. When I went to Mayo in Rochester MN, I was told point blank there is no cure, no pill to fix for my PN. And no cause. A tough day to say the least. I experience no pain, I do have numbness, very poor balance and a periodic feeling of a decrease in confidence when a fall takes place. Your words....but I still make myself go. That's great. I was glad to see you are doing that. Keep up with doing things and keep moving. In time, it might not be easy but remain as positive as you can and yes, we sure do learn a lot from one another in the Connect. We deal with this on a day-to-day basis, who is best to know ALL the effects of PN other than those of us who live with it. Stay well! Ed

Yes. Mine started about two years ago.I started with a cane and then had to go to a walker. I am extremely depressed. Used to travel, ski, fly, backpack, etc. Now can't even get to my pool in backyard. Stuck in my house with nothing to do. Old friends and even relatives not interested in me as I am now disabled to a point I can't go anywhere. At 76, I feel my time is up. Rich

Most general practioners do not appreciate neuropathy.
You can get help if your proactive. After many months of pain and discomfort I told my GP that he had to due something. He recommended pain mgt and I received the pain killers. If you have painful Neuro go to pain mgt
and get a nerve conduction test. You can have your life back.

The availability of opioids, either by the manufacturer, the FDA or CDC, has been adversely affected. While I have been under the care of a pain mgt. specialist for over 10 years, it has become almost impossible to find prescription Oxycodone & Methadone. My care has been greatly impacted and I am currently going through opioid withdrawal-in other words, another layer of pain!

FYI I feel all of what you are feeling every day. I get up hoping my day will be more productive, more energy filled, more cheerful but that debilitating feeling of neuropathy never seems to go away. It just hangs around like a dark cloud ruining the day. Hope this cheers you up knowing someone else shares your misery, lol. Hugs and keep your chin up!

I, also, can identify with all who feel as you do. I injured my back 7 years ago while skiing. Really did a job on my lower back and buttocks. They gave me a 4-6 week time frame for an L1 stress fracture to heal, which it did. I was feeling pretty good for a few months. Then, all kinds of pain erupted. Since then I've been to more docs than I can count. Right now, I am seeing a new pain specialist who is trying to figure out what new drug to put in my pain pump that will have some helpful effect. Like you, I wake up every morning with hopeful expectations of a better day, but then it's "same old, same old". What helps me are two things: 1. Have faith that God is still in control and has a purpose for this mess. 2. I try to plan out a couple of projects that I can do and accomplish. Oh, and I try to remember that there are still lots of folks out there who have it a lot worse than me. Remember all the lousy stuff that the Apostle Paul went through for his faith, yet "considered it pure joy" to be persecuted.

Hi crossette, Thank You, will look into it today!

Hi dogman,
The only medication that works for me is IVIG infusions. If you are interested Company is AOM Fusion1- 845-639-4531. Your Neurologist will take of it if you have Autoimmune Symptoms.
I hope this helps?

Hello, domiha,
I had a Laminectomy 2008, took S-1 L-2 L-3 L-4 L-5 NO FUSION!!!!!!!!! WENT DOWN HILL COULD DRIVE ANYMORE!!!!! THEN WENT TO JOHNS HOPKINS, BIG MISTAKE, PAIN MANAGEMENT DID A "NERVE BLOCK" DID NOT WAIT UNTIL SEDATION KICKED IN, I FELT HIM HIT A NERVE THAT I CAN NOT EXPLAIN HOW PAIN FULL THAT WAS, DID NOT EXPECT IT I SCREAMED!! OUT! DR. SAID, "OH THATS THE NERVE!
NOW I HAVE A PAIN PUMP THAT HELPS THE SPINE BUT DOES NOT HELP SMALL FIBER NEUROPATHY! I AM VERY DEPRESSED, I'M OUTGOING AND MY HOME IS MY JAIL. HUSBAND AND I HAVE NO FAMILY. I DON'T TELL OTHERS HOW BAD I'M BECAUSE PEOPLE HAVE THEIR OWN LIVES AND.........! NOV. 17 GOING FOR A PORT. HARD TO TAKE BLOOD NOW AND INFUSIONS.MY HUSBAND DOESN'T GET HOW BAD THIS IS. MAYBE BECAUSE I FORCE MYSELF TO COOK, LAUNDRY, STAIRS, ETC. AND I HURT MYSELF IN THE END. I REFUSE TO BABY MYSELF. DUE TO CONSTIPATION PAINFUL SITTING. THANK YOU FOR LISTENING. DO PHONE THERAPY WITH A PSY.