HSD

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    Community Voices

    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

    14 people are talking about this
    Community Voices

    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

    2 people are talking about this
    Community Voices
    ReBax

    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

    2 people are talking about this
    Community Voices
    ReBax

    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

    2 people are talking about this
    Community Voices

    My Sensitive Skin Friends, I Need Your Advice!

    <p>My Sensitive Skin Friends, I Need Your Advice!</p>
    42 people are talking about this
    Community Voices

    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

    5 people are talking about this
    Community Voices

    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

    7 people are talking about this
    Community Voices

    Came for Hypemobilty, came out with possible Lupis??

    Today’s visit was something, apparently my blood work suspects Lupis? (Positive Ana, low creatinine and low MCHC??) my grandma has Lupis so it might be connected? I also got a confirmed diagnosis of HSD and she said probably EDS??? So got 6 tubes of blood to check kidneys and see if that comes back with anything x_x

    I come for one thing and leave with 10 others.
    #Undiagnosed #ChronicIllness #HSD #EhlersDanlosSyndrome

    2 people are talking about this
    Community Voices