Chronic Pain members - Welcome, please introduce yourself

Hi @marylin14, welcome to Connect. Everyone responds to Gabapentin differently so it's a tough call. How long have you been taking it?

Thank you so much… I had the opportunity this year to go from full time kindergarten teacher to part time (3 day a week) intervention… the hope is to step away and I feel like that decision is coming very soon… I want to be able to step away and heal… I come back to Mayo on the 21st for the pre assessment appointments for the BeST program. I’ve started looking into the pain rehabilitative program as well, as they sound a little similar… it was truly encouraging to hear you share it was the best decision you had made. Thank you. I’m trying to get up my courage and protect my heart. I love helping my students…

I’ve been taking gaba pentimento for about four months. For the first two months I took one in the morning and one at night. It didn’t seem to be doing any thing so the neurologist said to double the dose but I thought that would be too much so I’m taking two in the morning and one at night . It does seem to help the neuropathy. It’s less painful on my foot but now I have this pain in my thigh that’s horrible. Don’t know what to do

Hello, my name is Sue..living in Ireland.
I have huge back problems.. partly mechanical,partly nerve - the pain has changed my life.
I am a pro active positive person and basically have tried everything.Had 2 surgeries and been told they can't do any more...SO.. I had a Nevro SCS implanted late 2022 and have had NO relief to date.I didn't have a trial -surgeon is very reputable &was sure it would be a success. I am getting desperate now and wondering whether anyone has had a similar experience..

My heart and prayers go out to all of you, my fellow pain-sufferers!! My name is Jim, 67 years old, with an intractable level of chronic pain in my lower lumbar region - my constant companion 24/7. No visible evidence of any sort of trauma to lower back, so I suspect that the degeneration of discs, vertebrae, and the spinal bundle is the result of my active duty in the Marine Corps. I was stationed at Camp Lejeune for 6 months in 1975 and drank/bathed in the incredibly, highly polluted water in the base wells - VOCs (volatile organic compounds) such as tetrachloroethylene & trichloroethylene, benzene, and a number of other chemicals which are lethal to the human body in quantity. Other health issues associated with the water pollution are heart problems (AFib, HBP, elevated heart rate) and a damaged liver with associated abdominal ascites, foot & leg edema and hyper ammonium (all resolved except the need to purge ammonia from my body daily. Took opioids continually since 1985 for back pain and was forced to cut my USMC service obligations after 18.5 years and received a token disability rating. VA continued to treat my pain with opioids and the dosage level climbed to daily levels of 400 mgs MS Contin (morphine sulphate) sustained release (oral meds - 4x100mg tabs) and 60 mgs MS Contin immediate release (for breakthrough pain - 2x30mg tabs). In 2016, the VA announced discontinuation of all opioid meds due to "war on opioids." I initiated my own taper, completing it in less than half the time the VA gave me to quit the meds prescribed me. Too much to type about the heart/liver issues, but my current situation with no longer receiving further opioid medications is because of liver damage so I have to mention. Over the years, I have been subjected to numerous ineffective operations (open back surgery for L4~L5 fusion, more micro-surgeries than I can remember at the moment), numerous injections of steroids, radio-frequency ablation of 8 medial nerves (both sides at L1~L5), electrical stimulators, transdermal patches, everything that is/was available. Currently have an intrathecal pump embedded in my lower left abdomen with a catheter inserted into my spinal sac somewhere at the C4~C7 level to provide a very tiny flow (measured in hundredths of micrograms) of fentanyl into my spinal fluid. My pain clinic titrated upward until they refused to go any further, but I have yet to feel any relief, so clinic recommended that I try other opioids. I tried morphine in the pump without any noticeable pain reduction, so I was forced to start looking for other solutions as of today. I had the pump turned to its lowest trickle level and left the clinic. My last option is getting Ketamine infusions, but after learning about the procedures and out-of-pocket costs, I find them to be something that could very well turn into an unwelcome necessity every month or two - not for me.

Drs. (military, VA, and civilian/private practice) will no longer consider oral, IM, or IV opioids because of uncertainty of liver health. I do not know what to do at this time as the opioids help make the pain more tolerable and nothing else works. Without the masking of this incredible pain, I cannot enjoy any kind of life, I have no mobility due to the pain, and am unable to get out of the house because I can't get past this pain to maneuver my wheelchair onto the transport trailer.

It has been a 35+ year journey for me, and I have not yet found acceptable relief. Has anyone experienced this type of pain in the lower back? If so, how do you handle it? Solutions? I haven't read many posts yet, but I intend to, and if I can provide any helpful information from my experiences, I will do so.

Thanks, - Jim

Hi, I’m new to this group. I have horrible abdominal pain due to exocrine pancreatic insufficiency (EPI). EPI also causes me to suffer from nausea. I also have fibromyalgia, which ironically is not bothering me much now. I use medical marijuana, which helps with the nausea, but not the pain. I am not yet on Creon (can’t afford until next month). Can anyone tell me how to make it till then? I am surviving on toast, bananas and crackers.

I get Ketamine through Tripsitter.clinic for C-PTSD and treatment resistant depression. My doctor there is working extensively on pain care also with Ketamine. I started it one year ago and still take 800mg oral 3 times a week alone in my home. Because it was 350 a month when I started, i now pay only 400 a month . That is 1/4 of my disability check but it is worth it. I have lots of shoulder pain that interferes with sleep. The Ketamine helps my pain. If you want to connect with the doctor helping me send me a text and check out Tripsitter.clinic. I know my Doctor would love to help you in any way possible. Prayers !

Thanks for responding to me. I am finding that when I reach out to other pain clinics, they learn very quickly that I have an intrathecal pump and will not accept me as a new client. They will not explain why they can’t take me for various reasons. I had passed on the Ketamine infusion because the information that I received/read was that one would need 6 infusions (IV) in 2 weeks and then repeat every month or so. The cost, I was informed, would be $1K per treatment - that’s too much for one on disability. However, if you can get it in oral format at $400/mo, it is worth it. I think my e-mail is on file at this site, but I haven’t seen anyone else’s e-mail, but I don’t want everyone to have it.

I will definitely check out the web site. I have exhausted every potential solution and have been considering having a surgeon find the offending nerves and cut them. Thanks!!

I will watch the video soon but I tried CBT for 5 weeks. Did not do much for me. I tried 2 physical therapists. I tried aqua therapy and liked that-for 6 weeks. When I have pain in my head I want to know what is happening in there. Is my brain changing? I believe my memory has been affected.

I'm happy to hear you took positive steps to help phase out slowly from teaching. It must be a heart breaker for you, but one thing I know from my experience is that sometimes we have to learn how to put our needs first for a change. I never knew how to do that because I'm a natural empath and giver. Mayo PRC really helped me learn about myself. I went to the Florida campus and worked with Dr. Sletten. He is absolutely amazing, and so is his team. The program was much more than I could have ever anticipated. Super hard, but continuously rewarding and worth the effort.

Keep hope in your heart. Hope for yourself to heal both mind and body. The most important thing is that you are trying and that is a positive step!

I found this Mayo article about Functional Movement Disorder and the BeST program.

Treating Functional Movement Disorders - BeST:
- https://newsnetwork.mayoclinic.org/discussion/diagnosis-and-treatment-for-a-mysterious-illness-turn-despair-into-hope/

It looks pretty good! I wish you the "best" of luck (tee hee) and hope this program helps turn things around for you. I will say that you always have PRC as a possible option in the future should you find that you'd like to inquire. I'd be curious what your referring Mayo doctor thinks about PRC in comparison to BeST. Please let me know if you ever find out.

Looking forward to hearing updates on your progress with the program, and your quest to heal. Will you check back in?