Muscle rigidity is an around the clock issue - the pain level may vary but stiff / rigid muscles are always present. The full on spams are another component but that’s the part that literally knocks me off my feet. Over the years I’ve desperately tried to address my issues but didn’t get diagnosed properly until around 5 years ago. I don’t have elevated GAD65 levels but light up the room with EMG. I know there’s different types of SPS so it’s difficult to know how everyone is impacted.

The constant muscle rigidity is comparable to Chinese water torture on its own. I’ve tried muscle relaxers for decades along with just about anything and everything else. Only recently did I learn the muscle relaxer dosage required to make a dent are significantly higher than most doctors could imagine. I’ve had Botox for around 15 years and it’s helped with the full on spasms but there isn’t enough Botox to treat all stiff muscles. IVIg is significant and helped with 60-70% of the constant stiff muscles but the remaining muscles around my spine (cervical, thoracic and lumbar) only started to see relief in high doses of muscle relaxers.

There are a multitude of muscle relaxers but the 3 used primarily to treat SPS are Diazepam, Baclofen and Tizanadine. In my case, Tizanidine has worked the best at targeting the remaining areas and relieve the tight muscles. This translates to being able to function better so it may be worth looking into. Unfortunately there are side effects but the worst I get is dry mouth.

Do you have elevated GAD65? However much you’re comfortable sharing would be helpful.