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Hello Im New Diagnosis is Stiff Persons. On Feb 9th 2023

On Feb 9th of 2023 I was told we have figured out whats going on. Your have #stiff Persons. I have been treated absolutely horrible by Drs, Specialist and ER visits. Im here just to not feel alone and find support. #stiffperson

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#stiff Person Syndrome & THE SILENCE

# Lonely & Don’t Know Who To Talk To (after being chronically I’ll and shut in (highly immunocompromised) #Solutions on coping with and handling loneliness? What works for you?

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Got this life saver years ago before I was Dx with fibromyalgia.
I was blessed to have help with the payments til I paid it off !!
Anyway it's like having ur own personal massage with heat.
Since my last massage I got hurt and am still recovering I decidee to go back and use this trusted aid!


Spine Pain?

Chronic spine pain? What is your latest "go-to" item that helps you feel better?
Lotions, creams, heat, ice, meds, massage, gadget - name your current #1 below.
#ChronicPain  #spine #RareDisease  #degeneration   #stenosis   #Nerves   #muscles  #patients   #Parents  #Kids  #adults   #ache   #stiff  #shock  #zap   #spasms   #vertebrae #Spinefusion #congenitalfusion


When you should be happy but aren't

#Rare illness #Depression #Anxiety #stiff person syndrome
I've just moved into a lovely new bungalow on a disability/over 55 community estate. It's lovely. I'm seeing my daughters and grandkids and a friend more often. Yet I was in such a bad place I needed to ring crises line. Yes my illness is still here ...back from the hospital after a soldier fall and still my spasms are here/ though upto now I've managed to stop the them with breathing techniques from leading onto the really bad full body painful spasms.
I'm in a bad place and finding it hard to move onto a happier one . I could write an essay on why my life is bad and all my triggers that take me to hell. But I've tried to explain so often that it's tiring in itself. It's so windy outside . Night time . The uncontrollable wind is like my mind. Thought bashing against each other . If anyone's out in it, they'll be wrapping themselves up to protect themselves . I'd like to protect myself from it too thanks for reading . Xx

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Slow Whine #Pain #stiff #exhausted #dontwanttobeabother

I awaken in the morning at 9am, check the time take my medication drink a glass of water. When I first step onto my carpet there is pain that I first feel in the bottom of my feet, then my hips and buttocks and lower back. I know the stiff pain, like a rusty ball bearing, will last for the next 2-3 hours as my joints slowly provide me with a steady structure for the rest of the days journey. I lower myself to my toilet painfully and wondering why I haven’t invested in a higher toilet. I void and check to ensure I’m not dehydrated prior to flushing. I wash my hands and whence because the water feels icy cold against my sore hands and whence again when I wipe my sore frozen fingers thumbs and wrist with an Egyptian cotton towel that feels like sanding paper on my skin. I creak across my bedroom carpet with the help of my cane, that helps me hold my back up and keep my gait. I feed glitter, my beta. I then creak into the laundry room to acquire fresh water for my African Grey, take this to her cage and feed her morning meal. Now with my trusty Akita, Bubba at my side, I feed him his kibble and give him clean water. Next that awe full hand washing routine again and I make myself a plate of fruit or a salad and painstakingly take it to the breakfast nook to eat while I watch my parrot, Pretty Baby, eat and chat with me while I enjoy my first meal of the day. Then I put the plastic plate and silverware in the trash, let Bubba out to attend to his needs and, afterwards, take my creak, pain ridden body that I have offered my unrequited love, back to that crypt that I call a bed and allow myself the unadulterated pleasure of listening to my Audible app while I attempt to convince myself of the duties I have planned for the rest of my day. It’s 10:00am