Stiff Person Syndrome Describing … PAIN
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- เผยแพร่เมื่อ 6 ก.พ. 2025
- This feels like a powerful and truthful comeback.
Thank you Ilea for articulating something many of us struggle to describe or even talk about because of fear.
What is pain when you suffer from SPS…
Pain is lonely. so lonely.
@@monaelsayed1 thank you for sharing. Yes it is and it is one of the reason we decided to choose this topic to start and hope as many people in the community share in the comments. If only to feel a little less lonely. Big hugs 🤗
angesdavis 12m
SPS pain nearly crushed out my last breath. For me, it is a brutally fueled assassin as my muscles squeeze my bones until they fracture or break.
One of the most cruel heartbreaks is neurological specialists telling me with their words, "yes, we
understand your acute intractable level of pain," but then refusing to treat my pain properly. It is always under-treated, so it is always present, always threatening to sharpen further as I fight to move, walk, take a shower, climb into the car to endure another medical appointment that ends up
intensifying acute pain even more. I often cannot open my eyes because pain has imprisoned my body, and tears just drop from my eyes involuntarily as they try to release some of pain's cruel, mighty grip. I am frozen, paralyzed by this infinite void of SPS pain. I love you guys.♥️
We love you more 🤍 Thank you for sharing the above. Each one of us describe it with our own words but as SPS patients we understand what we mean - this makes it a little easier to know someone understands what pain means 🫶🫶🫶
Pain to me can be isolating at times. If not physical pain for me,it is mental. I have good days & bad. Just trying to stay positive. Not easy for me since not many understand SPS.
Thanks for sharing ladies & welcome back! ❤❤
@@WendyGulla thank you for sharing your truth with us. We agree it can be isolating, so misinterpreted because it can be physical, mental, emotional and sometimes all at once. Sending big hugs 🤗🫶
The pain and exhaustion are a complete assault on my body, mind, and soul.
@@AmandaIsalia yes they are! Thank you for sharing 😘🤗🤗🤗 big hugs
I think of pain as a little person, I personify my pain. It wasn’t intentional. It simply started by my saying, “tell them to stop, make them stop.” Now as I describe my pain I say things like, “they’re chewing me, they’re peeling my skin off, they’re breaking my wrist ….” You get the idea. Maybe it helps me to think of it in third person. And just to clarify, this only happens when I’m in and episode. The “regular” pain, I don’t do that. It’s only when I’m out of my mind being torn apart and shredded.
Thank you. Appreciate that you took off the time you needed but sure nice to see you back 💖💕
@@laurajeanholt1755 thank you for sharing how you describe, deal and manage- we think and encourage everyone to share because we can all learn from each other in order to deal as best as possible and maybe attain a better quality of life! Yes we are back and many more episodes to come on a weekly basis.
Is there a topic you want us to discuss in particular? 🫶✨🫶
I agree with both and totally identified with you, what does pain mean to me? There are no words that describe what my pain is like or how it destroyed my life in all aspects and the atrocious, extreme fatigue, dysautonomia, visceral, musculoskeletal, myofascial and neuropathic pain, hell, my voice, my vision, my cognitive level , my digestive problems are so hard, this dysautonomia...not being able to sleep, when I get sleep and then wake up it's endless hell and what I can do is meditate, deep breaths, relaxing music, I love traditional Chinese and Japanese oriental music etc, the tones musicals calm and serene me in my despair, I also pray and talk with God, the universe and with myself, I detached myself from the body to be mind, soul... I live 24 hours in bed-sofa but I live through my mind and imagination ...this is how my days are, having faith that one day everything will be better, I dream of the day of feeling health, strength, vitality in my body again and being able to be independent...I dream of driving, swimming, walking, being able to have a conversation, endure the light, noises, an area with people... and that day will come, a huge kiss to all of you, thank you for this channel, I never spoke but I follow you, kisses, besitos🙏😘😘😘💕
@@mariavictoriadiazcharte6611thank you for sharing your experience with us and also for your appreciation of the channel. We are all different but we think with this word we can all identify with our shared feelings, views, words… un gran abrazo de nosotras 💕💕💕
Thank you for an insightful discussion. Although I rarely see pain mentioned as a symptom in SPS journal articles, as a patient pain rules my life, limits my activities and often makes me an unreliable friend. It can be tiring, lonely and isolating.
@@EileenKotler right? It is barely addressed or mentioned… we relate to every word you wrote! Thank you for sharing with us 🫶🤍🫶
This somehow is always hard for me as pain has been exponentially growing since septic shock and is very difficult to