Hypermobilespectrumdisorder

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Remy Soberanes
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@remysoberanes
ChronicIllness 3y
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Vaccination day

It's National Poetry Month and my first covid vax day so I combined them together with a limerick. I'm nervous because my body doesn't do well with vaccines but I keep telling myself that it's worth it so I can hug my grandkids!

...

Conspiracy theories are on the rise
don't be swayed by all the lies
get your shot
without a second thought
so we can safely socialize

- Remy Soberanes

...

#limerick #micropoetry #poetry #poetrycommunity #poetrylovers #poem #poems #poets #poetsandwriters #writer #nationalpoetrymonth #napomo #covid #vaccine #vaccination #covidvaccine #shots #ChronicIllness #Fibromyaliga #Hypermobilespectrumdisorder #Hypermobility #InflammatoryArthritis #Dysautonomia

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griffinbean
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@griffincharlie
Hypermobilespectrumdisorder 3y

How do you handle the bad pain days? (Back and abdominal pain in particular)

Having terrible back pain (the type that feels as if my spine is being pulled apart). I have a puppy who I have to keep busy and work and am seriously struggling to survive anything else. I am using my wheelchair more and more but even that doesn't help. #Hypermobilespectrumdisorder #HSD #ChronicPain #EhlersDanlosSyndrome #BackPain #IrritableBowelSyndromeIBS #ChronicIllness

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griffinbean
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·
@griffincharlie
Hypermobilespectrumdisorder 3y

How do you handle the bad pain days? (Back and abdominal pain in particular)

Having terrible back pain (the type that feels as if my spine is being pulled apart). I have a puppy who I have to keep busy and work and am seriously struggling to survive anything else. I am using my wheelchair more and more but even that doesn't help. #Hypermobilespectrumdisorder #HSD #ChronicPain #EhlersDanlosSyndrome #BackPain #IrritableBowelSyndromeIBS #ChronicIllness

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griffinbean
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@griffincharlie
HypermobileEhlers-DanlosSyndrome(hEDS) 3y

What does a diagnosis of HSD mean for treatment? I know it's related to EDS but not sure if docs will treat me differently because of HSD

#HypermobileEhlers-DanlosSyndrome(hEDS) #Hypermobilespectrumdisorder #JointHypermobilitySyndrome #EhlersDanlosSyndrome

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Fylakas Lechsinska
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@fylakas
Hypermobilespectrumdisorder 3y

Ulnar Nerve Entrapment & #HEDS

Hey y'all.

So lately I've noticed my pinkies are deviating away from all my other fingers. I've always experienced knuckle aches but they have been changing, and I've been experiencing pain and more snapping in my elbows. Not to mention numbness from my fingers down to my arms.

I told my ortho and he stated I most likely have ulnar nerve entrapment. Of course, my follow up question was, "Is this part of my #hypermobileehlers-DanlosSyndrome(hEDS)?" His answer, "I'm really not sure." I appreciate his honesty, and he explained that due to the versatility of the disease and the laxity it causes, it COULD be a result of hEDS.

So here I am, wondering if anyone on the #Hypermobilespectrumdisorder has issues with this? Or anyone who has this, what you did to help it?

Thanks!
#ChronicPain #ChronicIllness #CheckInWithMe #JointHypermobilitySyndrome #Dysautonomia

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Seikatsu Askew
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@seikatsuaskew
Up All Night 3y

Insomnia, guilt, grief or all of the above? #ChronicIllness #EhlersDanlosSyndrome #Hypermobilespectrumdisorder #EDS #HSD #Dysautonomia #Dystonia

Today- anxiety.. let's call it ... episode, from about 5-10pm. If it could flare- it did; If it could attack-it did. #Anxiety #ChronicIllness #ChronicPain #CognitiveDisorders #PanicAttacks #ChronicAnxiety #ChronicOrthostaticIntolerance #BrainFog #RaynaudsPhenomenon

I emotionally put my partner through alot, throw in #Allodynia and #Fibromyalgia annnnnd we have full on sensory and cognitive overload. I'm inincapable of speech until I'm not and I'm an incoherent self defeatist sobbing mess, followed by outrageously apologetic. WHY BODY WHY!? Knock it off already so I can discover sleep and the strength to fight the resulting lows tomorrow!!!

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Fylakas Lechsinska
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@fylakas
Depression 4y
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I Feel #hurt

I think I've done a pretty good job with handling the pandemic. I worked with EPS, as is my job, until they moved me to work from home. I have attended the doctors appointments I can and have adapted within moment's notices. I'm keeping up with homework. I rolled with the punches when graduation was cancelled. I'm figuring out how to get safety with telecounseling since I am in an environment where I don't feel safe. I'm avoiding being overloaded by media panic. I'm embracing mostly healthy coping skills.
Yes, I'm in my room a lot. Yes, I'm in pain a lot. Yes, I could do more to feel better if I tried real hard.
I feel like I was doing well though, rolling with the punches and adapting well, considering I hate unexpected change.
But I feel the dam holding my worries and #Depression back got broken when my family told me that they have bets going on ~when~ I'm going to get #COVID19. They know I get sick easily, and despite the doctor telling my I'm not immunocompromised, they are essentially just waiting on me to get ill. They have money on it. My lil sister even told me that I should enroll in a scientific study for $7500 to help with the vaccinations and get injected with the virus so she can win the bet... like what even?
Of course it's "just a joke" but damn, it really hurts and now all the motivation that kept me on track is out. My batteries need replacing. I have officially shit down. #EhlersDanlosSyndrome #Hypermobilespectrumdisorder #HypermobileTypeEDS #Asthma #IrritableBowelSyndromeIBS #AcidReflux #Tachycardia

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