Hello! Welcome- @jjspokane61. I'm glad you have found this thread and thankful you have shared your story and that you have shared that compression gloves help you. That's fabulous! 37 years is a long time to have been living with this.

Is there a time in the day- maybe right when you wake that you feel no pain? or is it constant?

Dear jjspokane61, I’m sorry for what you are going through. You are not alone. I have the same nerve pain as you in my right arm from my elbow to my fingers- thumb, index, and middle. The neurologist thinks it is Parsonage Turner Syndrome. It all began in February 2017 with severe shoulder pain. Eventually the pain progressed to my arm and hand and disappeared from my shoulder and neck. I had ACDF surgery C6/C7 in May 2017. I regret having the surgery. The surgery didn’t improve my condition and two weeks after the surgery I developed the same nerve pain in the same three fingers of my left hand. It has now been 15 months since my initial shoulder pain and my pain continues to worsen. I wear compression gloves and a brace for my right hand. I also use a heating pad which I wrap around my arm and hand. This helps more than anything else. My pain management doctor prescribes Lyrica and opioids. That help a little with the pain. Not that much, however.
Thanks for sharing your story. I hope things improve for both of us.

Hello patrick17 - I'm so grateful to my excellent neurosurgeon who recognized this as NOT a cspine issue! The last thing I want is a surgery I don't need that would not have resolved the pain and likely caused alot more like in your case! So sorry you had to go through that - it's a little discouraging to see you have been dealing with hand pain for so long! The gabapentin seems to handle most of my pain - until I forget to take it then things get crazy. My neck and shoulder pain is gone, elbow still gets cranky when I try to straighten my arm. My arm is definitely weak. Do you have the issue with not having the full range of motion with your arm? I had a spinal injection (when they were still saying it was cspine) and got back my range of motion in 3 weeks. Not sure if that's a coincidence or what. I'm scheduled for another one in Sept - if there's ANY chance it helped the first time I'm going to go ahead with it. I see another neurologist the end of Aug who is supposed to be able to confirm my PTS diagnosis - but I'm reluctant to go through another nerve conduction study if it's just for that reason.

My conduction studies were a night mare. My hands and arms were jumping and falling . Within 48 HRS I had a heart attack brought on by pain and stress. I had a terrible neurologist and am on the look for a new one. I've already made appointment for acupuncture. We may have lousy neurologists but great acupuncturist. He taught in China for 9 years and has now been here for 25 years. Wish you good health.

Look up Acupunture on Medscape if you want. I always see if a specific practitioner accepts insurance. If you have had a heart attack I would definitely see your Cardiologist Before exploring “complementary” treatments. Dr Ron Rubenzer.

Hello @jjspokane61, I do have limited range of motion with my right arm. Weakness, also. I can’t raise it above my shoulder. My thumb doesn’t bend at all and my index finger only bends a little with great effort. My middle finger is about 90%.
My orthopedic surgeon was so alarmed at the deterioration of my hand and arm he said that I needed surgery right away. I guess he never considered PTS. I wish I had been referred to a neurologist first. However, even my first neurologist didn’t consider PTS.

I have had EMG tests performed by three different doctors. My first neurologist, who was highly recommended, literally had me jumping off the table. After he jolted me one final time with the worst jolt of all, he said, “Let’s stop here.” He said that I was overly sensitive to the test. My fault, I guess. A month later I had another more thorough EMG test by another neurologist and I barely had any discomfort at all. It definitely makes a difference how skilled the doctor is who performs the test.

I’m going to try acupuncture and cupping as suggested by one writer. Sooner or later I will find something that helps. I just can’t go on with this pain. It is very wearing. I’m glad your pain is controlled by the gabapentin.

Your story sounds way too familiar. I have it in both shoulders arms and pa5in like acid being poured on my hands. I have very little use of my hands although I can now touch my thumbs and fingers. Pointing finger is always pointing. When I was diagnosed with PTS I had been bedridden for 3 years because of pain in my spine from neck to tailbone. I am still unable to sit for more than 5 minutes. So 3600mg gabapentin, 2 x 9mg hydromorphcontin 4 x 2mg dilaudid forbreakthrough pain. We have never changed the meds because these are what the would give me. They help my back but foes nothing for my hands. It came on sudden and has been 18 months. I totally believe my issue is in my neck but I can have an MRI because in my centre chest I had a stentput in my bile duct when the removed my gallbladder. 3 years ago they did an MRI and the stent exploded now there are pieces everywhere and it's more dangerous to remove than leave them there. I feel your pain. I feel so sorry for you. It's a nasty disease. I have already wasted from 168 to 90 lbs.