Looking to connect with people who have non-diabetic neuropathy

I got Neurontin ca 2,5 yrs ago and quickly reached max dose. After a while they didn't help any more so last spring I started Lyrica 300mg ×2. I haven't been to a specialist or gotten a diagnosis. Lyrica is starting to fail me as well. as for pain relief, I can only take paracetamol and ibuprofen which is all I get as Ive got a super slow metabolism of cyp2d6 so tramadol and opiates doesn't really work except when taken in too high doses like 50mg Tramadol ×4 ,3-4 times a day, not healthy. I take omega 3 every day and I think it helps a little. I've got modic changes 2-3 and arthritis in my back and neck and trapped nerve, the isjiasj nerve, so constant pain/cramps in my right leg/got. Probably from falling off a horse once or a hundred 😅

Please post for all. Every little bit might help someone. I’m a retired nurse. I was taking Tramadol for several years for my back. When the feet started driving me crazy, with tingling and burning, my pain dr. put me on Gabapentin. All I wanted to do was sleep. He said that would go away. And it did.
So for the most part it helped me for several years. I know the next drug will be Lyrica and I don’t want that.
I have progressed from Tramadol to Norco and I won’t go any further. I’m 78 and maybe coming to my end of life
But my father made it to 94. In a veteran’s home with very little enjoyment.
I’m not increasing my drugs from now on. 🫰🏻Just staying with my meds & vitamins. Voltaren on my feet at night.
I hope this has helped someone.
Surgerymardy44
05/2023

I got Neurontin ca 2,5 yrs ago and quickly reached max dose. After a while they didn't help any more so last spring I started Lyrica 300mg ×2. I haven't been to a specialist or gotten a diagnosis. Lyrica is starting to fail me as well. as for pain relief, I can only take paracetamol and ibuprofen which is all I get as Ive got a super slow metabolism of cyp2d6 so tramadol and opiates doesn't really work except when taken in too high doses like 50mg Tramadol ×4 ,3-4 times a day, not healthy. I take omega 3 every day and I think it helps a little. I've got modic changes 2-3 and arthritis in my back and neck and trapped nerve, the isjiasj nerve, so constant pain/cramps in my right leg/got. Probably from falling off a horse once or a hundred 😅

Wow Nicole are you certainly have learned all the ins and outs and are a wealth of information.

I was diagnosed in December with sensory Peripheral Neuropathy. I’ve been searching for a diagnosis for about 8 years. I have had trauma to my head and back which required surgery in 2015. Ever since I’ve been suffering with dizziness, instability, weakness in my limbs, difficulty walking numbness in my legs and feet and blurred vision. my back is the primary source of my pain. I will be going to my pain doctor in about two weeks to check into the Abbott proclaim. SCS.

Can you give me some details about that specific procedure and whether or not it works for you. I also would like to know if insurance covers this procedure.

Thank you in advance for the information.

Sandra

I have Peripheral Neuropathy and have a Spinal Cord Stimulater and yes it helps, but it doesn't continue to help. Over time my pain continues to increase and the medicines don't help either. I'm on Lyrica 100 mg 3 times a day, hydrocodone 10/325- 3 times a day. Lyrica just causes me to be sleepy. I'm not able to stand or walk or anything much at all my life is not what I want at 72 years of age. Chronic pain and PN is understandable. Charlie#807

Hi Charlie,

Thank you for your reply. I am very curious about this device and have an appointment Thursday with my pain management doctor to discuss it. I’ve been taking gabapentin (900 mg per day) now for about three weeks and honestly it hasn’t helped that much.
May I ask how long you’ve had your SCS and the brand name and would you do it again given your experience? Also, how long have you had PN? I believe Abbott is the company that my doctor uses. I have already had two sets of steroid injections in the spine but the relief only lasted for about three weeks.

I am really trying to determine what PN stage I’m in. I am still able to walk with a Rollator, and use my wheelchair some of the time. I am very unstable and dizzy. I’m 68 so I’m not ready to be bedridden and confined to a wheelchair. This is all very new to me.

Thanks Charlie for this important information.

Sandra

I'm also dizzy and a stable. I had the spinal stimulate SCS put in 2 years ago hoping that it would give me the relief the trial gave me. It did for the first year and a half. It can be adjusted and that is what I need to do. It just seems like every time I adjust the pain keeps getting ahead of it. Everyone is different, so it's worth a try for you. I try everything I can. I had surgery in 2010 for L-5 S-1 infusion and the doctor didn't check my nerves and left screws on my nerves. I didn't feel any different after surgery , plus my right leg was numb for a year afterwards. Awful!! He sent me for PT and Pain Clinic knowing exactly what was wrong. Then in 2014 went for revision of L5-S1 different doctors and he's was hoping to remove hardware and my nerves damage would reverse, but it different. So I've had neuropathy ,since 2010.
The company that works with my doctor was Medtronic. I hope you the best if you try it. Just remember it can be adjusted like I need anytime you need. My pain doctor can adjust which I forget. I'm 71 years old and I just forget to get it adjusted.
It's definitely worth the try. Good luck to you Charlie short for Charlotte.

I can testify that, in the 3 states in which I lived, not one doctor could come up with ANY solution to ease my pain, although one in particular worked her heart out trying.

Is MGH stand for mass general hospital.?sounds
like a good dr if she is willing to stick with you and try to help . All my guys just keep sending me on to Neurosurgeon who think both hand and feet probably coming from stenosis, but will not believe any of them so of course they pass me.on.My neurologist sent me to them. Going to Hopkins in sept but that is huge institution so not looking forward to that . Talk about who could care less . I was just hoping they had better medical devices an test to help me figure if this is small fiber nueropathy.