Stiff Person Syndrome: Want to connect with others

Hey Southern Charm, I have another idea for you. I have been thinking about you, because when my spasms happen they are ridiculously painful and incapacitating. I actually carry a prescription for Skelaxin. It’s a non-narcotic and does not make me sleepy nor slow the bowel. My Doc and I landed on this medication, because I never know when the spasms are coming, and I have to stay functional. Some of the spasms last for days and the skelaxin allows me to move and not trigger the return spasm. It may serve as a band aide for you, but for me it keeps me out of the ER. I hope this helps.

@upartist @southerncharm If your atlas is out of place, you will hate life! It can wreak all kinds of havoc ... I'm in like my 5th month of chiropractic care bc of a wreck I was in several years ago that messed up my cervical spine. I knew I had neuropathy problems, but not THAT bad just yet... good luck to you, hope you find some relief soon!

Hello, Your symptoms sound horrible, and very frustrating because of minimal solutions. I have a question that maybe out there a bit… but have any of your Docs imaged your atlas area? Sometimes the c-1, c-2 disc can herniate, or even a cerebral herniation can occur. I don’t know much about it, but it might be worth the research. Maybe John, the moderator has some resources? Good luck. Pain is hard!

Thank you....I would like to get a referral to a geneticist or immunologist....I've been sick a while now and have been investigated for 6 yrs now.....you start to lose faith in a diagnosis when there has been so much guess work....🥴

I have a similar problem. I have a rare neurological disorder HNPP and it effects my muscles and nerves. But now I’m dealing with neck shoulder and upper muscle pain which my neurologist doesn’t think it’s from my condition. So he is ordering more genetic testing.
There are times I can’t even move the muscle pain is almost paralyzing. So I would suggest you speak with your doctor about getting genetic testing otherwise you will be going around in circles. I’ve tried everything and nothing releases the pain!

Constant pain in neck, spine and shoulders...effects mobility and quality of life....nothing helps my pain but muscle relaxers that make me sleepy....😑😔

I am scheduled for PT next week. Maybe some stretching exercises can relieve this pain,

Hello @bjm5501, Welcome to Connect. You may find this discussion with @pattygail @sandra319 and @hammere4 helpful – Stiff Person Syndrome https://connect.mayoclinic.org/discussion/stiff-person-syndrom/

Here is another patient story that you may find helpful — Sharing Mayo Clinic: Diagnosed with stiff-person syndrome:
— https://newsnetwork.mayoclinic.org/discussion/sharing-mayo-clinic-diagnosed-with-stiff-person-syndrome/

Has your doctor suggested any physical therapy for you?

I am getting IVIG once a month and on baclofen. Has anyone used prednisone for treatment? I have ribcage, low back and side muscular pain 24/7. Baclofen doesn't seem to work to release my muscles from this awful tightness. It makes me walk like a tin man, It affects my posture and I don't move very fast.(I'm on a cane whenever I leave the house.)If anyone has had success with medications, please pass it along.

my child also uses nero feedback for Adhd and cognitive disorder