Chronic Pain members - Welcome, please introduce yourself

Has anyone been treated w/ BOTOX for Pelvic Floor pain? Did you find it beneficial for relieving the pain? The surgeon is recommending the treatment.

Hello I am ireneD - 73 yrs of age and recently diagnosed with idiopathic neuropathy typical stocking/glove …. Very cold sensation in lower legs . As yet not on any medication as trying Agmatine as a natural safe pain killer for nerve pain …. worth reading up on it ! Perplexed why the medical profession don’t recommend !! Have also heard PEA very good

Hello im MJ ive been diagnosed with mild dextroscoliosis...but my pain does not go away...always having neck problem and feels a nerve pinched that causing my headache too...i can feel the pumping in my head and at the back of my head...thoracic is also in pain and shouldrs

Welcome @irened, I also take supplements for my idiopathic small fiber peripheral neuropathy but I only have the numbness and some tingling and no pain. I posted my story in another discussion here - https://connect.mayoclinic.org/comment/310341/.

There are a lot of different supplements that have shown helpful for relieving neuropathy symptoms. There are no cures but if they help with the pain that makes for a much better quality of life. The Foundation for Peripheral Neuropathy has a list of supplements shown to help with neuropathy on the website along with other complementary and alternative treatments here - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

I thought I would share a link to a small pilot study on agmatine in case you haven't seen it.
-- Evidence for Dietary Agmatine Sulfate Effectiveness in Neuropathies Associated with Painful Small Fiber Neuropathy. A Pilot Open-Label Consecutive Case Series Study:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7071502/
I always wear long diabetic loose fit socks at night to help keep my feet feeling a little better.
Have you tried any other supplements or treatment to help with the cold sensation in your legs?

Interesting paper on agmatine - thanks for sharing. I guess I will give it a try too as I am running out of ideas/things to try since I have refused the pharmaceutical route.

@irened Hi irenD Can you please let us know if the Agmatine ends up helping with your nerve pain? PEA seems to be helping mine in combination with protocol 525 that the Mayo mentors have given us information about.

I do not know if this group is still going or not. My name is Denise and I have been a chronic pain suffer for 25 years. At first I was taking ibuprofen twice a day but after losing a kidney in 2008 I had to stop that. So, I was put on morphine and oxycodone.
I will tell you what happened to me. When I was 24 I was coming home over an intercoastal canal bridge when I was on top of the bridge there was a stalled 18 wheeler. I was going around the 18 wheeler and I guess the man did not see me as he was busy getting the flares out to put them in the back of the truck. It was either hit him or hit the truck I chose the truck. I fractured my neck and no one found it till 20 years later when a spur was growing into my cervical cord. If it would have continued on or if I was in a wreck and was jilted it could’ve severed it and I would’ve been paralyzed from the neck down. So, the year 2000 was my first anterior surgery on C 5, 6 and 7 with fusion. I then started having pain in my left shoulder and my neck area where the shoulder joint in the neck it also went down into my shoulder blade at times. My muscle in my shoulder would get so hard I just couldn’t get it to release. Even my pain management doctor had me go get a CAT scan of it because he thought my muscle was not normal. The CAT scan showed that there was nothing wrong with my muscle. I suffered that way for 12 years then in 2021 my pain management doctor told me to go see an orthopedic surgeon. I had an MRI and it showed that anterior C 3 and 4 were strangling my cervical cord and no liquid could get around it. I then had my second surgery. Well I felt I had relief and then I didn’t. I went back to the same doctor told him the pain was excruciating and he ordered another MRI which showed while I was healing the posterior bones caught a ligament. I then had my third surgery in 2022 where they removed posterior C 3, 4 and 5 and put two rods in my neck. I now have three plates, six screws and two rods. My neck is not that large i am a small woman. I must say the intense pain is now gone. I would recommend anyone that has chronic pain to make sure they go to the right doctor I really should have gone to a neurologist. But my orthopedic surgeon did a good job. I just wish I would’ve gone to him sooner, it would’ve saved me years of chronic intense pain. I hope this helps someone.

I hope you have been able to find relief with all our new technologies. I have been a chronic pain patient for years and have now been relieved of the intense pain. While having that intense pain I had no life the only relief I had was laying on the couch or in the bed other than that once I was up moving I hurt. With the right surgeon the intense pain is now gone and my pain is more manageable I now have a life what the worst was that no one understood my pain level if you’ve never had this intense pain before other people just can’t fathom it

I take Gabenpentin for nerve pain but nothing will help with coldness but a heating pad. If it weren’t for the medicine I would be in bad shape.

What baseline liver panel can I check on? What is the test?