chronic illness EDS

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    Another diagnosis

    Hello everyone has anyone heard anything about scapula dyskinesis? Or experience with it ? Sometimes called winging. My scapula is twisting rather than sliding IDK I'm confused. Apparently I've had this issue for a long time but the pain was continuously ignore by every doctor I asked. New doctor tells me that's what it is and pretty much ended the conversation at that. Anyone got any advice or suggestions #EhlersDanlosSyndrome #ChronicIllnessEDS #Hypermobility #ChronicPain

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    Freaking out a bit ( just kidding a lot ) #ChronicIllnessEDS #EhlersDanlosSyndrome #hypermobileehlers-DanlosSyndrome(hEDS) #Anxiety #Brace

    I'm freaking out and trying to not let my anxiety and depression suck me in. I sprained my ankle end of Aug not to bad but got stuck in a brace.Finally got an MRI and I not only have a sprained ATF Ligament but also tenosynovitis of my Posterial tibial tendon and peroneal tendon. That sucks but the worse news is tedinosis of my peroneal tendon so I've pretty much frayed and shredded the tendon and the only fix is surgery. I'm freaking out, the dragon has had a rough day with my stress

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    Quick update

    Hi guys!

    Just wanted to hop on here and give you all a quick update about what I've been dealing with.

    I posted a bit ago about combilities, and it turns out I have a few. Just found out that little things my whole life growing up was actually hyper mobile eds, and that could be the reason I developed POTS in the first place.

    I am changing medications, and its not going well but I am hopeful for the best. Maybe with a bit more time I will adjust.

    I ended up starting a blog to try and reach others who struggle with disabilities, specifically for those who travel or who want to get out of the house in an accessible way.

    I am staying hopeful that the future will be fruitful for not just me but for all of us. #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #ChronicIllnessEDS

    Question

    PRP injections for pain, does it work?

    Looking for anyone who's gotten PRP in any joints or weak points and what your experience was #EDS #HEDS #EhlersDanlosSyndrome #ChronicIllnessEDS #hypermobileehlers-DanlosSyndrome(hEDS) #Fibromyalgia #ChronicPain

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    Feeling shocked by next step with urological stuff 🤯😳🥺

    So I had an appointment today with the Bladder & Bowel team (first face to face appointment in around 5 years…!) as I’ve been getting worse bladder symptoms that, now I have the formal diagnosis of hEDS, I wanted to push to get actually investigated and not just assumed as linked to my back injury or severe B12 deficiency nerve damage… she wasn’t initially keen to refer me to Urology, but has now said that she will speak to her colleague tomorrow at the other hospital and see if they can suggest anything they can do in terms of investigations or if we just continue with the next stage of the plan with this team (that is happening regardless). This next bit is the one that has left me fully shocked as she has referred me to a nurse specialist to learn how to carry out intermittent self catheterisation (ISC) in the hopes that it resolves the urgency incontinence, frequent UTI’s and urinary retention issues I get. I don’t know of anyone who has ever done anything like this to themselves and so it has sent my anxiety through the roof, leaving my IBS playing up and a splitting headache. Not helpful as we have a heatwave again in the UK 🥺. Has anyone here had positive experiences with ISC that you are willing to share? Normally I’d ask for all experiences but right now I’m really scared and anxious so am asking that negative ones are not shared, just to allow me time to calm these feelings before I get the bigger picture - I have previously refused/delayed treatment after hearing negative experiences and ended up needing emergency hospital admission and far more invasive treatment to get me well (ish!) again. Thanks in advance! 🦓🦓🦓 #HEDS #EhlersDanlosSyndrome #ChronicIllnessEDS #ChronicPain #BladderIncontinence #BladderIssues

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    I’d really appreciate your feedback and opinions on this topic. Gimme the good, the bad, and the ugly!

    What are your thoughts on using thc (marijuana) for the help in treating mental/chronic/autoimmune/pain, illnesses? I’m talking about taking low dose amounts, not getting Snoop Dogg high! What do you think? #Depression #Anxiety #CPTSD #Trauma #eattingdissorders #LGBTQIA #Fibromyalgia #ChronicFatigueSyndromeampME #ChronicIllnessEDS #ADHD #ChronicPain

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    Remember to take social media with a grain of salt! 😉

    We are never shown the bad days, the lonely times, the fights, the sadness, the hated job or abusive relationships. You don’t want to compare your real life with somebody who has edited theirs with only the best highlights of their life! Have a great day friends! #Depression #Anxiety #PTSD #EatingDisorders #LGBTQIA #Fibromyalgia #BorderlinePersonalityDisorder #BipolarDisorder #ChronicIllnessEDS

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    Little Bit of Progress.

    I just thought I would share the first strawberry I picked that I grew on my allotment this year.
    Sometimes progress we make or the things we get achieved in a day can feel as small as this strawberry.
    But even something as small as a strawberry can bring happiness 😊
    Keep at it people, and rest when you need.
    💪🏽🍓 #EDS #ChronicIllnessEDS #EhlersDanlosSyndrome #EDSHT #EDSAwareness #HypermobileTypeEDS #Spoonie #SpoonieProblems #ChronicIllness #progress #happy

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    Just bleh

    I'm 31 and only just realizing the damage that's been done from, barely, living with #CPTSD . My life is just a shell and there seems to be no consistent way out. I live with chronic and debilitating physical and mental health issues. It's tricky to even go to the doctor's that I need to see. But I did make it to an appointment today to see if I qualify for Medical Marijuana, and I did. This should be a happy day and something to call a win, but was lost in the grief of not being able to afford the license or a trip to the dispensary. So the new problem is now with the one thing that could change my life completely as far as pain management, is seemingly unobtainable. I can't work. I haven't been physically able or mentally stable to work for 3 years now. My partner is also drowning in #CPTSD and can barely hold down his job. We are literally watching our last dollars fly out of our bank account with next months bills hanging over our head. We've only managed to get this far by sheer luck of stimulus checks and his tax returns. Everything we used to do was 50/50 up until I couldn't work. Now I'm just a black hole. I know I didn't ask to have health problems. I never dreamed I'd have #ChronicIllnessEDS but neither did he. We've been together since we were 15 years old. I wanted to work and have money and carry us out of this shit hole holler and out of this shit hole town, but I don't even know what my future looks like. If I can dream, it's beautiful, but it's mainly hopeless. I feel like it would've been better, for mostly everyone, had my mother just got an abortion instead of having me. But sadly, I made her life monitarily easier as I was her fast track to governments housing and food stamps. Not that there's anything wrong with that in general, but having a kid for that purpose just to abandon later in life bc I was too "gay" to be under her roof doesn't sound like a fair option for anyone. (Long story short, my partner turned out to be trans so jokes on my birth mother) I've been in therapy for 3 years, which helps with about 2% of what I'm dealing with. And I don't really click with my therapist, but am too nervous that if I were to move on, I'd find a worse one. I'm so tired of fighting myself and my life situation, the brain fog, the abandonment milange, and emotional dysregulation. I'm not going to say I have it better or worse than anyone else. I'd never compare. I'm only expressing what I feel from a lived perspective. I miss the life I could have, the relationships that could've or should've been. I miss closeness and trust between people. I miss the family that threw me out like trash and taught me to hide who I was. The people I was taught to crap fit myself to. I miss being able to put up with emotional abuse so I could feel connected for a second with somebody. I miss not having to choose between my authentic depressed self or happy go lucky masked self just to be part of a toxic family system. None of this probably makes any sense, but I do not feel mighty at all. I feel toxic, heavy, disappointed, infuriated, sad and tired. I just want to make it instead of scraping by. I want to feel like I don't have to choose between my dogs heart medication or my medication or medication vs food or gas vs car payment or tuned out vs feeling present or lonely vs seen and heard. I don't exactly know what I want other than better than right now. If only I could just go back to not existing.

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    Four White Walls and Spoonie Things

    I’ve been bedridden for 1 year 8 months and 9 days.
    I’m on an indefinite pause while the world whirls past me.
    It sucks not being a part of any of it. Being separated from everyone in the stale, dark, and yellowing rectangle room that I’ve memorized. While my friends, who have all moved on with their lives, eat, drink, and get married. (Pun intended).
    I love them all so much. And still; I deleted all my social media accounts so I wouldn’t have to scroll through and be reminded of what I can’t have. At least for a time. It’s just too painful right now. (Plus I just downright do not have the energy whatsoever.) I wish I could confide in them about this but even they have told me that they don’t fully get it. (You know, my health stuff since I’ve gotten so sick). While watching a chronic illness tv show, it had a very apt quote which was about having a group of ppl who are sick go through the same thing, and other ppl, no matter how much they care will not fully get it unless it’s the same thing. So that’s why im here now. So Hi! Nice to meet you👋🏼 I’m Kay, a Spoonie like you. Sometimes I sleep 18-20 hrs a day because I’m up literally alll night long from severe pain, and simply because my body literally is dealing with 14+ diseases. And the elderly care home I’m at (despite the fact that I’m 25 yrs old) is not able to give me the care I really need to battle it. But im doing PT and trying to learn to walk again so I can be among the living again. I’m not sure what, how etc that will mean since this is my only place to live and I have no family to live with in the state, so it’s in Gods hands from here. Before I was bedridden I was a lab assistant and worked myself almost to the grave. I kept telling myself I wasn’t sick because I didn’t want to be. At the time I didn’t have any confirmed diagnosis’s other than Lyme and multiple forms of co infections so I felt like that wasn’t enough to stop working long and hard hours. I’ve always had 1-3 jobs and ALWAYS felt super terrible physically, I just told myself I was fine and pushed it down. I didn’t want to be sick, I wanted to live life.
    Lol. Look how that turned out for me. 😂😆 YET, at the same time, I’ve learned a ton and although right now is an extra hard season, each season Jesus has taught me something, and always kept His promises to me. ♥️🤗
    In closing, here’s the thing.
    I don’t want to be on pause anymore. I’m doing my best to hit the reset button, but just as all you spoonies know, holy crap, does chronic illness kick butt. But keep going just like I am. (Not that I’m anything special). Don’t give up fellow spoonies. If I haven’t thrown in the spoons yet, after drs trying to literally kill me by illegal treatment, shaming me for losing my voice and saying I am faking it, refusing to read my text when it’s my only form of communication, and so SOOOOO much more that could fill a full series, and if other ppl, ppl I’ve read about and have endured much hardship can handle a lot, then so can you.
    WE can. Together.
    (You probably saw this the other day but I accidentally deleted it..technical difficulties😅.So here it is, again.😆💫✨)
    #EhlersDanlos #EhlersDanlosSyndrome
    #BorreliaTBRF
    #Babesiaduncani
    #Borreliosisburgdorferi
    #PosturalOrthostaticTachycardiaSyndrome
    #PainfulBladderSyndome
    #IrritableBowelSyndromeIBS
    #MastCellActivationDisorder #Viceralhyperalgeia #HypothyroidismUnderactiveThyroidDisease
    #HashimotosThyroiditis
    #AddisonsDisease
    #EBV
    #Fibromyalgia #raynaudssyndrome #TheBendyBunch
    #ChronicIllnessEDS
    #HEDS
    #hypermobileehlers-DanlosSyndrome(hEDS) #PainfulBladderSyndrome #ChronicPain
    #ChronicFatigue
    #RareDisease
    #Community