Stiff Person Syndrome Invisible Symptoms

Pain - what is pain? What measures pain? An invisible symptom so heavily part of SPS, a subjective topic, although pain felt by any SPS patient is beyond anyone’s expectations.

[@Leslie-h1b]

May you heal and feel better Lea. I understand the pain. SPS sure isn't just about being stiff. For me, pain is a constant and at it's worst, it's off the charts and exhausting. Since it can go way beyond 10 on the pain chart, the medical community who's not familiar with SPS often don't understand and often think we are being overly melodramatic. I'm glad we with SPS and those who are trying to understand SPS have you articulating these experiences and how it affects our emotional wellbeing esp. if we don't have someone who gets it. I'm glad you're both here and I don't feel so alone and you're there for one another. Love your glasses Ilea.

[@stiffpersonsyndromeHeart2heart]

We thank you for your kind words. And yes we know her glasses made all the difference 😉🥰

[@Marilinaa]

Lea feel better soon. Such a useful chat guys, it made me think about a lot. Cool glasses Ilea - Linda T.

[@stiffpersonsyndromeHeart2heart]

Thank you 🙏🏻 Glad you found the episode helpful 💕

[@tnavarro1601]

Thank you Thank you!

[@stiffpersonsyndromeHeart2heart]

Thank YOU for watching! We hope you keep liking the episodes ☺️

[@ExploringSitkaAlaskausin-wj4wu]

I have been dealing with this condition for at least 25 years. Don't sit around. Stay active. Try getting off Gluten Products. It has helped me. Reduce your sugar intake to almost zero. It has helped me. When you do sit or lay down, administer a heating pad on any muscle you feel beginning to stiffen or cause pain. Don't sit around all day. I never sit more than an hour without getting up and stretching and walking around. At night, the pain wakes me up every 20-40 minutes. When it does. Get up and stretch. At night I move from a bed to a recliner to a couch. I may move 10 times per night. Depending upon the discomfort and pain. Keep active. Keep moving, or it will defeat you. I have a youtube channel about how I cope. I am 73 years old. I also now have acute arthritis in almost all my joints! More pain and fun..... However, I quit taking any and all medications. I no longer have any faith or respect for the medical community. Keep moving!

[@stiffpersonsyndromeHeart2heart]

@@ExploringSitkaAlaskausin-wj4wu thank you for sharing your experience and strength with us! Keep moving forward sure! I hope we were able to help you through some of our episodes. 🫶