Hi, @hammere4, and welcome to Mayo Clinic Connect. I am glad you have joined us here.

Sounds like you've been through a challenging time trying to get the best medications for your condition.

I thought I'd ask if @nan45, @suzanneleafbrock, @pattygail, @lora, @shellwil, @twirlgirl101, and @judiff, who have discussed Stiff Person Syndrome previously, might have any thoughts to share, especially about the emotional effects of few people understanding this disease, due to its rarity?

I am sorry to hear about the anxiety and depression. Can you tell us more about what you've been experiencing with these?

Hi, I think my husband does not expect others to understand. He sometimes tries to explain it, but it seems people just don't get it or they forget. So for the most part, he doesn't expect people except his immediate family to truly understand. I think he chooses to just carry on as best he can and avoids much conversation about the disease or its impact, emotionally or physically. That probably doesn't help much, but that is what I have observed in his situation.

I also do Nero Feedback and it helps with pain

Any treatments that have worked im still waiting for infustion treatemen

Anyone out there gave stuff person syndrome

That helps just to know someone else

What should I expect

Hi from U.K. my husband had a stem cell transplant in March 2020 in India, has anyone else had this treatment? He is still on medication but definate improvement and praying he will get full remission, I know he would like to talk to others who have this condition, thank you 🙏

I just joined this mayo clinic connect. I have been struggling for over 2 years now since my car accident. I was diagnosed with fibromyalgia. chronic pain, and pelvic floor dysfunction. The other day my whole body from my neck to my ankles became stiff, so stiff I wouldn't move at all. I couldn't walk, turn my head, or flex any of my muscles without extreme pain going throughout my body. I had to call 911 and be transported by ambulance to the ER. When I was at the ER they said it was a withdrawal from my meds that I take for my Fibromyalgia and that it'll get better. I have had to use a walker and cane. I can't drive. I have trouble doing a lot of things. I have seen so many doctors over that years that I can't even keep count anymore. I scheduled any appointment with my pain management doctor and they said that this is weird and doesn't sound like fibromyalgia. They told me to go see my primary care doctor, I didnt a video visit with my PCP. He is concerned and referred me to physical medicine and rehab. That is all I cant say right now but after looking up my symptoms; Stiff person syndrome came up. So I am trying to figure out if I have that rare condition. I have tried physical therapy, chiropractic, water therapy, occupational therapy, massage, and bariatric surgery (to lose weight), Nothing had worked and I am at a stand still.

Hello @maliakajeme and welcome to Mayo Clinic Connect. You have had quite the last two years and, by the sounds of it, have seen several doctors looking for answers.

You will notice that I have merged your post into a discussion on Stiff Person Syndrome to allow you to go back and read through the information already shared by members such as @peggi @suzanneleafbrock @bryan_in_dallas and @hammere4.

You have certainly been diligent in advocating for yourself, however, this is a lot to keep track of for one person. I am wondering if the doctors you have seen are coordinating care between your visits? Do you happen to know?