Judy, @jujubbb I can certainly understand now your interest in finding others who are dealing with condition. It would be great to have some people who could relate to this and share their experiences with you. Perhaps someone will come forward and post. In the meantime, here is some info on an online support group for people with this type of disorder, https://www.dailystrength.org/group/syringomyelia

Teresa

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?

Hi, I am Patricia. I have had chronic left upper quadrant pain for 5+ years with no definitive diagnosis.

I am Marilyn from the state of Washington and was diagnosed with fibromyalgia 12 years ago. To add to the fun, a antibiotic resistant infection left me with post-surgical pain. Other than that, aging has been a bucket of giggles.

My drs thought I had fibromyalgia and myofascial pain for over 40 years before I finally had an MRI —now I know chronic pain from the cyst in my spinal cord. Turning 70 has not been my best year!!

Maybe an MRI would show real cause of pain.?

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

Between the point of your shoulder and your nipple? Check your spleen with an echo. Anything more than 5%over expected is too much. If so, call Angela Dispenzieri or Martha Grogan at Mayo-MN

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

Welcome, Patricia @pagray24

No definitive diagnosis is certainly discouraging. What kind of tests have been done? Have you seen specialists? I know others will offer ideas and roads to pursue. Keep us posted.

Jim

Hello Patricia, @pagray24 and welcome to Mayo Connect. As I looked at Judy’s suggestion regarding an MRI, I was wondering have you had an MRI? If not, what other diagnostic tests have been done? We look forward to hearing from you again.

Teresa

Hi, Marilyn @marilyn624. Seeing a pain specialist was the best decision I made in my search for relief from peripheral neuropathy pain. Are there medications you can take that have helped?

Jim

Hi Jim and Teresa,
OK, get ready it is a long list. I will spine=cts, mris, thoracic epidural, post ganglion nerve block.
Chest=x-ray, CT, Mri, us, CT angio, intetcostal injections, antibiotics.
Abdomen=hida, kub, small bowel follow thru, multiple CT, Mri, us, egd,colonoscopy, gastric emptying, camera pill, multiple barium and nuclear studies.
Pelvic=CT, Mri, us, transvag us,doppler.
Specialists: multiple Gastro, surgeons, pain management, cardiology, neurology, nephrology rheumatology, endocrinology, pulmonary, infectious disease, ortho, gyn, and primary care! You
Have I missed any?