HypermobileEDS

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    How do I know if I have reached the point of needing a wheelchair?

    Hell, everyone. A little bit about me.. I have hypermobile ehlers-danlos syndrome (hEDS), POTS, small fiber neuropathy, fibromyalgia, Myalgic Encephalomyelitis, Hashimoto's disease, severe GI issues, and a litany of other conditions.

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    I currently use a rollator walker with a seat pretty much every time I leave the house, but do not use it in my apartment because it's a small space, I need it less inside the house, and my apartment except for my partner's is not mobility aid accessible. I am on IV saline infusions for my POTS. I am noticing as I get older, my POTS gets worse, I may have good lungs but I always feel dizzy, lightheaded, weak and out of breath. I also am very prone to chronic pain and injury due to my hEDS especially from standing and walking longer distances.

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    I am reaching the point where I am wondering if I need to get a wheelchair in the near future, but dealing with a lot of internalized ableism. Am I faking it? Am I being dramatic? Am I just lazy? How do I know when my health is bad enough to need it? With my weakness, dizziness, and severe fatigue from my CFS/ME and POTs combined with chronic pain, chronic injury, chronic stomach problems causing more weakness and fatigue and dehydration, and my rapidly declining neuropathy, I know I need help, but I do not know how much.

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    I know I need to strengthen my muscles and I need to exercise, but the threshold between the right amount of exercise and over exertion is so so small because I can only do a tiny fraction the amount than the average joe.

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    I also deal with paranoia that I will be harassed and hurt by strangers and doctors more because I would be an ambulatory (part time) wheelchair user as well as because I am plus size. When did you reach the point where you knew when you needed it? Has anyone needed it specifically struggling with hEDS, POTS, Small Fiber Neuropathy, or stomach problems? When did you know?

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    #SmallFiberNeuropathy #PeripheralNeuropathy #EhlersDanlosSyndrome #EhlersDanlos #HypermobileEDS #HEDS #POTS #posturalorthostatictachycardia #Gastroparesis #IBS #CFSME #CFS #ME #hashimotos #Wheelchair #ambulatorywheelchair #MobilityAids

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    How long/hard was your social security (SSI) application process?

    Hello! I applied for SSI a few months ago, and not much as happened yet. I know it is a long and grueling process and most people are denied at first and have to appeal. Because I am unemployed, I am struggling greatly financially and I am becoming more and more scared, impatient, and antsy. What helped you all with the social security process whether it's tips that helped expedite the process, tips of information to include/not include, or even just tips of how you coped mentally and practiced self care during these stressful times? I am also currently working with an organization that helps crowdfund for medical and financial expenses specifically for disabled people to try to help me during these trying times. I am trying so hard to make ends meet during this long process and not get discouraged. It's scary having no income and having to wait prolonged periods of time for a lifesaving decision!! #My link for my specific campaign to donate with personal story is:

    helphopelive.org/campaign/19188

    #ChronicIllness #Disability #SocialSecurity #fixedincome #Fundraiser #crowdfund #boost #EhlersDanlosSyndrome #HEDS #HypermobileEDS #Bipolar #MentalHealth #Disabled #financialadvice #Support

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    Does anyone have recommendations for the best type/brand of hip brace to prevent dislocations and subluxations?

    #EhlersDanlosSyndrome #HypermobileEhlers-DanlosSyndrome(hEDS) #HypermobileTypeEDS #HypermobileEDS

    4 comments
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    hEDS Diagnosis

    Hi everyone. Last week I received an official diagnosis for hEDS (and a few weeks before that I was diagnosed with dysautonomia, but I have to see a cardiologist and get a tilt table test to confirm that it's POTS).

    I am 18, and I have been experiencing symptoms of hEDS for the past 5 years just thinking it was normal. I am constantly in pain, either in my joints, muscles, or sometimes in my bones. My joints crack all the time, and often it is painful. I am not sure if these painful crackings are always subluxations, but I am certain that my hips subluxate daily. A few weeks ago my hip came out of place and I couldn't get it back in for 3 hours. It hurt so bad I couldn't walk. I am really struggling to process this diagnosis. On the one hand, it is a relief to put a name to all these symptoms and to know that I am not crazy. On the other hand, being diagnosed means that this isn't something I am going to grow out of. I will always be like this. And that sucks. I feel very isolated and don't know who to talk to about this. My partner has been very supportive but I don't want to stress him out with all of my worries, and I really would like to talk to other people with EDS.

    Ironically, I have been involved in the rare disease community for pretty much my entire life, because my dad has a rare autoimmune skin disease called pemphigoid. For the past 4 years, I have been going to an event called Rare Disease Week on Capitol Hill to advocate for federal legislation that will help rare disease patients. The first year I went there, I met a woman with EDS, and she told me about all of the symptoms and how it gets diagnosed. Right there, she performed the Beighton test for me, and I scored a 9/9. She said that was very strange, and this was right around the time when I first started experiencing chronic pain and joint cracking. I thought to myself in that moment, "Wouldn't it be crazy if I had this condition?" But I didn't tell anyone about it. And as the years went on and my symptoms got worse, I kept going to Rare Disease Week and meeting people with EDS. I would show them how my joints popped and moved, and they would say "You should see a doctor, you might have EDS." But I kept it to myself because I didn't think it was possible for me to have a rare disease when my dad already had one.

    Even now that I have a diagnosis, I feel like I am making it up, like I just wanted to be part of the community so I invented this pain for myself. But I know that isn't true. I hurt so much every day. I know my joints subluxate (my hip is out of place as I am writing this). I know my skin is soft and fragile and scars easily, and I am completely hypermobile.

    I guess I am in need of some support. I don't know what to do.

    #EhlersDanlosSyndrome #edsupport #HypermobileEDS #HypermobileEhlers-DanlosSyndrome(hEDS) #HypermobileTypeEDS #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #RareDisease #RareDisorder

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    How did you sleep?

    "As an occupational therapist with hypermobile Ehlers-Danlos syndrome (hEDS), “painsomnia” (pain-induced insomnia) is something I come across a lot. I work with a lot of people who have pain and I also live with it. In fact, I had no idea chronic pain wasn’t normal until I was 19. I genuinely thought everyone was in pain all the time. Pain is my “normal” so it must be the same for everyone right? Seems not." themighty.com/2017/03/hypermobile-ehlers-danlos-syndrome-pain-at-night
    #HypermobileEDS #HEDS #EhlersDanlos #hypermobilityspectrumdisorder

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    Can you relate, Bendy Bunch crew? 😂🦓

    I feel like the “what I see” is so much more than just pill bottles — PT, surgery, pain, lots of emotionally draining conversations...

    What’s your take?

    #EhlersDanlosSyndrome #RareDisease #ChronicIllness #HypermobileTypeEDS #HypermobileEDS

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    ISO: suggestions on working from home w/disabilities

    I suffered through a tilt table test last week, which confirmed my #POTS diagnosis, as well as added a #NMH diagnosis. The next day I received an email from my Geneticist confirming my official diagnosis of #HypermobileEDS. All of which I suspected, just had to get the official answers. My issues tend to flair exponentially in the summer and the winter... anyone have any advice on how to go about establishing a #workfromhome job? Because as it gets colder and colder it just keeps getting harder and harder for me to get out of bed in the morning. And in the summer the heat just turns me into a puddle, melted on the ground.

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    When (and how) do you tell someone you are newly dating about your chronic health condition?? #Relationships

    I have Hypermobile Ehlers Danlos Syndrome, alongside a few co-morbidities such as Chronic Fatigue, Chronic Migraines, mild POTS and IBS. I have met someone recently and things are going well, but it’s very early. I’m going to have to tell him at some point soon-ish because I sleep a lot and need to make daily adjustments to keep myself on an even keel. How long do I leave it before telling him?
    And How do I tell him without making him want to run for the hills??!! #EhlersDanlosSyndrome #HypermobileEDS #ChronicIllness #ChronicMigraines #MyalgicEncephalomyelitis #ChronicFatigue #Relationships

    4 comments
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    Has anyone ever had a doctor‘s office hang up on you?

    I tried to call Baylor Genetics in Houston because my rheum just told me to call and get an appointment, but when I called the lady asked what the diagnosis was and I was trying to explain that I wasn’t sure because of some things. She then hung up because I was saying I wasn’t sure what type of genetic counselor he wanted me to see. I don’t know why but this made me so upset. :/ #Doctor #Genetics #HypermobileEDS

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    Yet another fall (Vent) #HypermobileEDS

    Sprained my ankle twice in the last two weeks thanks to hip subluxations. My knee has been cut open both times and I've ripped two of my favourite pairs of trousers. I'm not working at the moment, so it makes the loss of two pairs of clothes even more bitter. Im still recovering from whiplash in my neck from the first fall and generally, it feels like my body's been thrown down the stairs a couple times.

    I'm trying to tell myself I will feel better soon, but I'm mostly feeling annoyed with myself. I felt good yesterday morning and I was only going out to get milk from a shop 2mins away and suddenly, bam! I fell! I know I should feel lucky that I fell close enough to home for my husband to bring me my crutches but I mostly feel embarrassed from passer bys staring as I sat on the pavement. I wanted to get him chocolate from the store while I was there (he works from home) and I ended up feeling like I was more of a distraction then a help. #EhlersDanlosSyndrome

    2 comments