Rant.. I guess š«¶š»
Often, the second I think of sharing how much pain I actually am in
All I get is all this ridiculous stuff about what I SHOULD do
Maybe it is well intended⦠but thereās conditions out there you just canāt imagine the level of pain that can come with them. Ehlers Danlos Syndrome, just one of my underlying conditions, is one of those.
And my pain is REAL. And not easy to manage. In fact the only real management they have for me is to reduce activity, and I said NO. You see me. Iām active. I wonāt stay in bed wasting away like they had me doing at first.
So.. Iām on enough muscle relaxers to knock out a horse but Iām still tight af everywhere
I get BONE pain in my hands neck and hips
And neurogenic pain everywhere down my spine and in my neck and shooting down my legs and arms esp if my neck doesnāt relax
And I can get INJURED just moving around my house
My CK is always high, my muscles are always breaking, my kidneys are struggling my blood is always trying to clot, my heart is struggling and my oxygenation isnāt so great a lot of the time
The oxygen problems causes muscle issues even more causing intense pain on a muscle level where if you just touch my muscle lightly, just bump me, itās SORE
Like if you just did the craziest leg gym workout ever and sat down and the seat hurts your legs? Thatās me every day just from normal stuff
I havenāt practiced law for 7 years.
I canāt hold my phone up to talk without my whole arm going numb
I canāt talk for long without my voice disappearing
I canāt eat for long without my muscles in my face getting tired
I canāt play games or draw or type for very long because my hands cramp and hurt so so badly
The things I do: yoga, walks, some martial arts. Theyāre to stay healthy and stay alive
Because donāt get it twisted: Iāve been in a fight for my life for years.
I just am good at smiling through it. And will keep doing that til I canāt š
May is Ehlers-Danlos Syndromes Awareness Month. What are the Ehlers-Danlos syndromes (EDS)?ā
ā
The Ehlers-Danlos syndromes (EDS) are a group of heritable connective tissue disorders that vary in how they affect the body and their genetic causes.ā š§¬ā
ā
ā Variants in the genes that determine how the body makes collagen and other proteins that work alongside collagen have been shown to cause EDS. ā
ā
At this time, genetic variants have been found in all types of EDS, with the exception of hypermobile EDS (hEDS).ā š¬ā
ā
Connective tissue is everywhere in the body. It provides support and structure to other tissues and organs, including bone, ligaments, tendons, blood vessels, lymphatic vessels, the tissue that holds the gastrointestinal tract in place, etc. ā
ā
āļøā Signs and symptomsā
ā
Some certain signs and symptoms are common across all types of EDS. However, these can vary in severity between individuals, even with the same type of EDS. ā
ā
These include:ā
ā
⢠Joint hypermobilityā
⢠Joint instability with dislocations and/or subluxationsā
⢠Injury to connective tissues in and around jointsā
⢠Joint, muscle, and nerve painā
⢠Scoliosisā
⢠Herniasā
⢠Pelvic floor weakness and prolapseā
⢠Easy Bruisingā
⢠Stretchy skinā
⢠Fragile skinā
⢠Scarringā
⢠Slow or poor wound healingā
ā
In rarer genetically-defined types of EDS, there are specific concerns with certain tissues of the body that can present with complications such as:ā
ā
⢠Arterial/intestinal/uterine fragility or rupture (usuallyā
associated with vascular EDS (vEDS))ā
⢠Pneumothorax (collapsed lung)ā
⢠Severe dental and gum diseaseā
⢠Severe scarring of the cornea of the eye��
ā
Across all the types of EDS, a number of conditions and symptoms are now also recognized as common. These include:ā
ā
⢠Fatigueā
⢠Autonomic dysfunction (such as fast heart rate and/or low blood pressure)ā
⢠Headachesā
⢠Gastrointestinal problemsā
⢠Anxiety disordersā
⢠Heavy and painful periods and bladder painā
⢠Allergies and intolerancesā
ā
ā”ļø Learn more here: https://t.co/hkadA9VH9j
ā
āļøWhat would you like people to know about EDS?
#MedTwitter #MedEd #EhlersDanlosSyndrome #Healthcare #Hypermobility
15 years of chronic pain. Floods of tears. Countless doctors telling me all my pain was in my head. I've finally been confirmed for Ehlers-Danlos Syndrome.
I feel like celebrating.