Stiff Person Syndrome: Want to connect with others

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

@gary1316 I thought I would invite you to join the Mental Health Group if you'd like to connect with other members on the topic of Bipolar Depression since you shared how much pain it causes you. Please join the group if you are interested: https://connect.mayoclinic.org/group/mental-health/

I find your comment encouraging. While I do not suffer from physical pain, my bipolar keeps me full of internal pain because of the pain that I cause my best friend in life, my wife. It’s absolutely never intentional but it’s kind of like not intentionally running someone over with your car... it was an accident but they are hurt nonetheless.

I feel like I am clutching at straws here but I will literally try anything at this point.

I have found I am somewhat better if I do keep as active as possible. I do ordinary household chores, ride my recombent bike and I mow my lawn and work on my garden - weather permitting. I have found I get worse if I am not as active as I can be. I certainly cannot do as much as I did before I regressed. I do not have face pain or brain fog - I have very stiff posture and my feet shuffle as I haultingly walk, and my balance is very poor - I have to use a cane if I walk a long distance to keep from falling. I pray for Jesus to help me and He does, I don't know what I would do without Jesus - He is my strength and ever present help in time of trouble.

Hello @bdaniels7 and welcome to Mayo Clinic Connect. I understand you are interested in connecting with others who have SPS to find out if they get brain fog and if their face hurts, along with best tips for living with it.

You will notice that I have moved your post into an existing discussion on SPS in order to allow you to connect with members like @speechless623 @maliakajeme @estelatorres @pattygail @sandra319 @peggi @suzanneleafbrock @bryan_in_dallas and @hammere4 who may be able to provide you some information based on their personal experiences.

Of your symptoms so far, which has been the most challenging?