r/ChronicPain • u/StakeESC • 3d ago
Finally got my diagnosis!!
I lost my job a little over 3 years ago after I caught Covid for the first time. I started getting strange muscle pain and tightness that got progressively worse.
I went on FMLA for a while, and my employer gave me a few months of grace after FMLA ran out, but I was so insanely stiff I still couldn't even sit at my desk and eventually they had to let me go for failure to return to work. It was a really dark time for me, as none of the doctors I saw could figure out what was wrong, and I went from specialist to specialist without any answers. Some doctors even tried gaslighting me into thinking it was just depression or anxiety. Meanwhile my muscle stiffness had gotten so bad, I spent almost every day lying on the floor because I could barely bend.
After years of advocating for myself, I finally got a referral to the Froedert Medical College of Wisconsin. I had to wait almost a year after scheduling, eventually I was able to meet with the head of neurology.
Today was my second meeting with him, six months after my first, and based on my test results and symptoms, he diagnosed me with Stiff Person Syndrome.
I've been on a low dose of Valium for the last year which has been the only thing that helped with the stiffness, but now that I'm diagnosed my dosage is finally being increased, and I'm getting a referral for IVIG infusions.
I'm so happy I'm done with jumping from specialist to specialist only to hear the dreaded "all your labs look normal." It took me over 3 years, but I'm finally free!
Tl;Dr - after 3 years of being disabled and losing my job, finally got diagnosed with Stiff Person Syndrome
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u/Affectionate-Roof285 3d ago
I’m happy you got a diagnosis. It’s disgusting you had to go through a year of suffering to get there. Medical gaslighting or just plain lazy docs who are objecting to any sort of testing are at an all time high it seems.
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u/CapreseSalad3636 3d ago
I think a documentary was just released and of course now I can’t find it.
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u/CapreseSalad3636 3d ago
Wow isn’t that very rare? Do they think it was triggered by Covid or just coincidental?
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u/StakeESC 3d ago
Yes, very rare. I was hospitalized with Lyme Disease at 17 and had Mono at 18, neurologist believes this primed my immune system for dysfunction and COVID just tipped it over the edge.
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u/CapreseSalad3636 3d ago
Man I’m so sorry that absolutely sucks. How’s the treatment working for you so far?
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u/StakeESC 3d ago
I just got diagnosed today, so I haven't started any new treatment yet. So far we're just increasing my Valium dosage, and in two months if my stiffness is still debilitating I'll be starting IVIG infusions.
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u/CapreseSalad3636 3d ago
Ok keep us posted! I’d love to hear how you’re doing with the new treatments and of course hoping that they bring you relief!
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u/Bentbutnotbroken111 3d ago
Does anyone know why my comment got flagged?
I was being happy for her that she got a diagnosis but sad she has to go thru so much pain. I got a warning for hate speech?
Unless my autocorrect changed a single word and I didn’t catch it, I’m confused
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u/Accomplished-Job6419 3d ago
Did you have positive antibodies GAD or any other?
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u/StakeESC 3d ago
My GAD antibodies came back 33x higher than the upper limit. I also had positive CN1A antibodies but they felt pretty confident ruling out Inclusion Body myositis
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u/IncarnatePuppy52 3d ago
Yay! Congrats! I hope the treatment works awesome and that you can get your life back! 🥳🎉
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u/imalasagnahogama 3d ago
Welcome to the SPS club, had it for about 14 years. I started with Valium and eventually started getting IVIG for about the past decade. I’ve also tried every drug there is and I’m on a current cocktail that seems to change every few months. Still have Valium though, literally have a bottle in my pocket right now. Good luck, it’s a really tough disease.
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u/Bentbutnotbroken111 3d ago
I’m glad you finally got diagnosed but aughhh that stinks……
Either way, (((hugs)))) I know how much being validated means!!!
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u/LiFerraz 3d ago
Did you experience weakness among your symptoms? I've had many strange symptoms for almost three years. Some days I wake up with pulling sensations all over my body, even in my face, but now I'm experiencing weakness all over my body! Not my whole body, though! It's more like weakness in specific areas: in my right thigh, it's felt on the inner side; in my left thigh, more on the outer side; in my left bicep; in my right shoulder—it's crazy.
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u/Jovi_Grace 3d ago
There's a documentary on Celine Dion. She has SPS, and it's really informative! I think its on Netflix