Hi, my name is Rivi. I'm here because
#MightyTogether #sjogren 'sSyndrome#Gastroparesis #PosturalOrthostaticTachycardiaSyndrome #ChronicInflammatoryDemyelinatingPolyneuropathy #ChronicPain #AutoimmuneThyroidDisease #AutoimmuneImmunodeficiency #AutonomicDysfunction #Hypoglycemia #Hypoparathyroidism #Migraine #small fiber neuropathy #medical ptsd #Muscle constractors
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Wanting to know if anyone gets these. Orginally I use to get these muscle spasms that I think are in my arms or legs. Now in my #hands as well
They are extremely #painful and tend to happen when I am extremely tired, hadn’t slept or needing sleep.
Now they seem to be happening more frequently and violently. I may be on the couch watching tv and all of a sudden my body will violently #Jerk . I may be holding my cell phone and it flies out of my hands (this happens often).
After it happens I’m wide awake because it is extremely painful.
It reminds me of like when you #fall #asleep and you dream that you fall. You wake up because your #body jerks but it is normally not painful.
It’s not the same as when you get a #Muscle spasm in your #back or #legs it’s more like the #whole #body #spasms . Does anyone understand what I’m talking about??? Or get this feeling? Thank you #Gentlehugs #warriors
Does anyone go thru this?:
When I take muscle relaxers or gabapentin I have difficulty urinating. I end up doing all kinds of gyrations trying to get a stream started let alone keep it going. Then I end up with a UTI because I haven't been fully emptying. It's a if my urinary tract spasms like my intestines do in conjunction with my IBS and when I take the meds Im unable to relax the ureter so I can release. #Fibromyaliga #urinating difficulty#UTI #IBSD #Muscle relaxers #Gabapentin
I feel like my mitochondria are suffocating.
I feel like my cells lack oxygen.
Laying down, I feel like I’m being crushed by bricks.
My heart is beating too fast, too hard. I feel it through the thin wall in my chest and it throbs.
My circulation feels cut off when I lay on my arm.
My muscles ache. They twitch and spaz.
This fatigue is incomprehensible.
When I lay on my side, one knee atop another, the contact of bone is uncomfortable.
I want to scream, but lack the energy to do so.
I’m hungry, but too weak to get up to get food.
I’m exhausted, but can’t sleep.
I’m in pain, but meds require too much from me to get up and take them.
I’m bored, but too brain-fogged to do anything productive.
My arms won’t hold a book up.
My fingers are weary from typing.
My eyes are too sore to look at a screen.
I’m too sick to work but apparently not sick enough to get disability.
I only make it into the doctors office on good days.
I want to enjoy my good days; pretend I’m not sick; then to everyone else it looks like I really am not sick.
I’m in too much pain to go on, but not severe enough to get help from the ER.
My doctors don’t have answers.
Other practitioners treat me like a guinea pig.
Everyone has their idea of what will “fix” or “cure” me, or what I’m doing wrong.
It hurts to lie down. It hurts to stand. To sit, to walk.
I move from my bed because I hurt, then back to my bed because I hurt; all the meanwhile using energy I don’t have.
My spoons have run short. I think I’m on next year’s supply.
I wish I had a doctor who knew more about what’s going on with me than I do.
#LymeDisease #ChronicFatigue #ChronicIllness #ChronicPain #Muscle #Joint #ahces #Pain #Fatigue #exhaustion #nausea #Twitching #Hunger #tired #Spoonie #help #Relateable #mitochondria #circulation #Tachycardia
We teamed up w US Pain Foundation & #RareDisease on The Mighty asking YOU about spine pain! Read article > tinyurl.com/h6jqtbv
SEPTEMBER is Pain Awareness Month #LetsTalkAboutPain #ChronicPain #neck #back #Muscle #chronic #joints #remedy #sundaythoughts #teamwork
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