Chronic Pain members - Welcome, please introduce yourself

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?

Hi, I don't know if people still use this chat but I don't have anyone else to talk to about this so I'll give it a shot anyway. I just turned 20 last month and like any other 20 year olds, I should be exploring and having the time of my life. I started getting pain when I was in the 6th or 7th grade. It started with the back and everybody was kind of convinced that maybe my backpack was too heavy for my small frame. After some testing, I was told that I had minor scoliosis but that it was so minor that they couldn't treat me for it. Since then I've had more and more symptoms. Things really hit its peak towards the end of my junior year in high school. I started having pain in my spine, mysterious bruises, pain in my hips and down my legs, tingling in my legs, shortness of breath, chronic migraines, insomnia, and so much more. It's gotten to a point now where sitting, laying, or standing in one position for too long can cause pain. I can't even walk for more than 40 minutes before I have to take a break. Even through all this, I had such a hard time with getting people to believe that my pain was real. Parents, siblings, friends, and most especially doctors. Everybody thought that I was too young and healthy looking to be in pain. That perhaps I don't drink enough water or exercise enough. I had to force doctors to listen to me and they only really started paying attention when I was 18. I've been to multiple specialists, had blood drawn for so many panels, tons of x rays, and I've even had a brain MRI. Slowly, everybody stopped believing me.
However, recently I had a full DEXA scan which shows bone density. They found that I had osteopenia (which is a step before osteoporosis) in two different areas. They also found that I have osteoporosis in my left femoral neck which is the bone that connects my left hip to my left leg. My new pain management doctor was very surprised because it's usually found in the elderly and I was 19 at the time. He knows that somethings wrong it's just taking a while to find it. He ordered me to have a full MRI of my spine and another X Ray of my hip so I'm currently waiting for those results. I know that my situation could be a lot worse but I'm not afraid to admit that I'm scared and I'm sad. It sucks that my friends get to experience so much of the world even when it's too hard for me to do the same. I know that I can but it's harder because my body can't take a lot.
I'm open to any suggestions on how to better manage pain, preferably without so much medication (had a bad accident with it so I'm nervous to take too much). Thanks.

Hello @jocy, Welcome to Connect. I have osteopenia and lower back pain/aches but I'm older than dirt. I can't imagine trying to figure out how to deal with the pain and struggle you are going through at such a young age. I think you are on the right track trying to learn more about your condition and how you can better manage it. Since you mentioned having scoliosis at a young age, I'm wondering if you might find some suggestions in the following discussions:
-- Scoliosis: In pain morning noon and night: https://connect.mayoclinic.org/discussion/in-pain-morning-noon-and-night/
-- Scoliosis and Chronic back pain: https://connect.mayoclinic.org/discussion/chronic-back-pain-2c72ae/

Here are some articles that also might be helpful. The second link has many reference links at the bottom for more information:
-- How to manage osteoporosis before the age of 50: https://www.sciencedirect.com/science/article/pii/S0378512220302619
-- Patient education: Osteoporosis prevention and treatment (Beyond the Basics):
https://www.uptodate.com/contents/osteoporosis-prevention-and-treatment-beyond-the-basics
It's understandable to not want to use so much medication. Has your doctor offered any suggestions on alternative treatments that might help?