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Any tipps for someone new to this community? #EhlersDanlosSyndrome #newdiagnosis #HSD #Jointpain

Hi guys! I FINALLY was able to see a rheumatologist two days ago. The two doctors were pretty confident, that I have an inherited disease of the connective tissue. The possible diagnosis EDS was mentioned as well. I will now go to a sub-specialist for further evaluations. They said even if I had no inherited disease, my joint pain could be fully explained by my hypermobility. My main problems are: -joint pain in many joints
-Hip pain
-back pain& possibly a slipping vertebrae
-getting blisters very very easily
-my skin tends to „rip off“ very easily e.g. when tying shoes just from the lace
-selective antibody deficiency (according to doctor this could be related)
-other things

Do you have any tips for me? Thanks in advance !

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What is everyone's favorite electrolyte supplement!?

Just got my official HSD, Dysautonomia, and MCA diagnosis. I have been doing well with my water intake but the dr. Informed me that I need to be drinking between 65 to 128oz a day and half of that needs some kind of electrolytes added to it. #electrolytes #HSD #HEDS #help

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Enbrel or Lyrica; What's your experience?

Hello if you're reading this heyyy and thank you! I am asking what your experience is with taking Enbrel or Lyrica specifically for joint and nerve pain?? And what symptoms do they seem to help with/ what have you notice good and "bad"?

I ask because I have some persistent symptoms and am finally open to trying almost anything so I can function with my day to day, specifically with taking care of my 2 y/o son. I have been diagnosed with Fibromyalgia in 2013, and newly Hypermobility Spectrum Disorder which I suspected for some time. I've recently noticed more stiffness in my hands along with a rash, rough flaky dry skin and more stiffness there. Stiffness and tenderness in my spine, more nerve pain all over but burning and intense in my legs making it difficult to stand or be on my feet. Anyhow thank you for reading, peace & blessings! #Fibromyalgia #HSD #hypermobilty #EhlersDanlosSyndrome #Lyrica #Enbrel


I’m Tired of Living Like This

Today, I went out for about three hours with a friend. I really enjoyed my time with them, but when I got home, my body shut down. Fatigue set in, and as much as I wanted to resist taking a nap so late in the day, I felll asleep anyway.

Now it’s late at night, and my body is complaining about me going out and doing things. I can’t sleep because I napped earlier, and my joints are in misery. I needed to tell someone, but I didn’t know where to go. So I’m here. Talking to people on the internet that I’ve never met before because I trust them to treat my condition with more respect than my IRL friends.

I hate the fact that I have to spend so much money on braces instead of nice clothes. When I went on a trip out of town for a few days, I had a whole bag filled with knee braces, a back brace, compression socks, elbow compression sleeves, compression gloves, and ring splints, plus my cane. It still wasn’t enough to keep me together, and now I have to go searching for ankle and shoulder braces.

I’m tired of living like this, and as lovely as my friends are, I know that they can’t understand how much I perform to look healthy enough in front of them to be accepted. It’s that or slipping into social isolation, which I can’t risk doing for my unstable mental health.

I want to be able to go out and do fun things on a whim without having to consider my current pain level. I want to not have to purposely schedule large chunks of downtime into every single day so that my body doesn’t collapse on me. I want to not have to deal with deciding whether I need my cane enough to stomach the ableism that will come my way or if I can suck up the pain enough to avoid any comments.

I don’t really know where I’m going with this, so I’ll stop now and try again to get some sleep. #EDS #HSD #Osteoarthritis


Mobility aids?

I’m struggling with deciding whether or not I should approach my parents about some kind of mobility aid. I have a school trip Tuesday/Wednesday and I don’t want to fixate on the pain and exhaustion. #MobilityAids #HSD #HEDS #ChronicPain


TW: Self Harm

With chronic pain, I feel completely out of control. I have taken to biting the inside of my mouth because if I am cussing the pain, then I am in control of it. #HSD #HEDS #ChronicPain

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My Sensitive Skin Friends, I Need Your Advice!

I've been struggling with acne and extraordinarily dry and sensitive skin for as long as I can remember. I feel like I've tried every treatment, cream, and dermatologist's suggestion in the book, but nothing has made me feel confident in my skin. As I'm sure all too many of you know firsthand, having EDS can make our skin pretty difficult to deal with. I'm tired of the trial and error, only to have allergic reactions and rashes appear due to an ingredient in a product (I'm looking at you, hyaluronic acid).

So, my stretchy and sensitive-skinned friends, I'm turning to you:

✨What is your favorite way to care for your skin?

✨What routines and products have worked for you?

I'm looking forward to reading your suggestions!

#EhlersDanlosSyndrome #CheckInWithMe #TheBendyBunch #HSD #Rosacea #Psoriasis #Acne #Eczema #Dermatitis


Has anyone had success with the Mirena/progestin IUD ?

I have historically had problems with increased joint laxity and pain when using progesterone only contraceptives such as the mini pill or Implanon. However, I have recently been recommended the Mirena because the level of progestin is lower and so apparently it "might be better."

I am very feeling very cautious/skeptical of this suggestion due to the fact that insertion and removal aren't exactly a walk in the park, and I've heard a lot of negative stories about it. I was wondering if anyone else with EDS/HSD has actually had success with it?

Many thanks xx
#EDS #HSD #Hypermobility


Advice on canes?

Hi all! I have been considering getting a cane for a while, since I think it could really help improve my mobility and pain levels on bad days, but I’m not sure how to choose or find one that will work for me. Does anyone have any recommendations?
Currently I think what I am looking for is a folding cane with a gel grip, because I hear that is really good for hand and wrist comfort. I don’t know what handle style to get though. I do have some mild issues with my wrists and elbows, and moderate shoulder problems.
Also, I would prefer one with nice patterns on it, ☺️ but that is a less important consideration, and I suppose that decorating it myself could be a delight.
#Hypermobility #MobilityAids #Cane #ChronicPain #JointHypermobilitySyndrome #HSD #Advice