Hi Judy (@jujubbb), I also would like to welcome you to Mayo Connect. I had to look it up to learn what the rare condition is. I found this page on Mayo Clinic's website and it looks like you are already doing some of the recommended self management actions:
http://www.mayoclinic.org/diseases-conditions/syringomyelia/manage/ptc-20267786
I'm hoping some other chronic pain Connect members with spinal cord health conditions join the discussion and offer what works for them. I did a search on Google Scholar (https://scholar.google.com/) on the term "syringomyelia treatment" and it may provide some links that offer some helpful information:
https://scholar.google.com/scholar?as_ylo=2017&q=syringomyelia+treatment&hl=en&as_sdt=1,24&as_vis=1
John

Judy (@jujubbb), I would like to invite Jim (@jimhd) into the discussion as I think he uses several treatment methods to manage his chronic pain. Jim do you have any suggestions that might benefit Judy?

Welcome, Judy @jujubbb . Diagnosis and finding treatment that works can be a long, and sometimes frustrating process. I have overlapping medical issues that make the process even more challenging. I hope you find the help, as well as the answers you need soon.

Jim

Hi, Judy @jujubbb

John mentioned that I have a few resources for my pain management. I have idiopathic peripheral neuropathy, and have tried every medication available for neuropathy pain, including some that are off label. The only two that have helped are Lyrica and Morphine sulfate contin. I took the Lyrica for a week and I had severe reactions to it, enough to put me in the hospital for a few days. I was really disappointed because it was helping relieve the burning pain. I finally started taking Morphine sulfate contin, and it takes the edge off. The one thing that actually gave significant pain relief (80%) is the spinal cord stimulator implant, in June of this year. I have good and bad days, often connected to activity level. Standing on a hard surface for very long, or walking any distance on hard surfaces will remind me of how far I've come.

I fell from a falling ladder 8 years ago and broke my lower back, so I have pain from that if I do much heavy work. For that, I take, if anything, Percocet and a muscle relaxer, Orphenadrine.

Because of bleeding ulcers 7 years ago, NSAIDS are off the table, but I do take some when my hands hurt too much from arthritis.

So, those are the things I use to keep me going. I didn't mention the meds I take for depression and other mental health issues. The combination of chronic pain and depression is a common one, but can be difficult to deal with.

As I said in another note, I hope you find resolution soon.

Jim

Thank you. Getting treatment had been a challenging process---and finding a medication to help pain.

Jim: my neurologist dismissed the idea of a spinal cord stimulator for my condition. I have consulted with 2 neurosurgeons -- both advised pain mgt only. I take 200 mg Lyrica but it has taken over 2 months to increase from 100 mg daily. I had lethargy, sleepiness and some blurry vision. Effects seem to be subsiding and Med seems to ale edge off pain. It sounds as if you have had quite a struggle. I pray a lot!! Judy

Judy @jujubbb

Hi, I have gone thru similar trials to quell the pain and discomforts of Peripheral Neuropathy. I currently take Lyrica for the stabbing/shooting sensation I get in my feet and legs, and for the constant feet/leg pain I am using Medical Marijuana. It is a godsend, and it takes care of my depression one gets for the ceaseless pain.

Judy @jujubbb

Since joining this group, I feel very fortunate to have the few things wrong with me that I do. And I feel guilty about complaining about pain.

Jim

My pain is central cord stabbing pain--- Lyrica helps a bit but I am considering cannibis at some point.

Judy @jujubbb

There have been many people on Mayo Connect who've been helped by cannabis. There has been quite a bit of conversation in a discussion group here in Chronic Pain. Is it legal where you live? I live in Oregon, where it is, but it's out of my budget range.

Jim