hypermobile type EDS

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hypermobile type EDS
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    After some advice please

    For quite a while now I've been having dizziness with almost like a seizure at the same time. I'm totally aware of what's happening when it happens but my body and limbs shake quite violently. Doc sent me for a brain MRI and all seems normal. Has anyone else experienced this? Any ideas on what it could be?
    #EhlersDanlosSyndromeAwarenessMonth #EhlersDanlosSyndrome #HypermobileTypeEDS

    2 reactions 13 comments

    Temporary Alternative to Silver Splints?

    Hey lovely people! Quick question about finger ring splints. I have several splints from the Silver Splint Company and I’m looking to order some more. However, I would like to try out the type of splint to make sure it actually addresses the pain before I invest in a silver splint. So I was wondering whether anyone knows of a company that makes similar splints to the Silver Splint Company/custom splints but in plastic or another (less expensive) material? Due to my location, an Australian-based company would be ideal, but if not, any company that currently ships internationally! Thank you so much! Apologies if this post is a little rambling - my brain fog is on point today haha.
    Sending you all light and love!

    #EhlersDanlosSyndrome #EhlersDanlosSociety #JointHypermobilitySpectrumDisorder #hypermobilityspectrumdisorder #HypermobileTypeEDS #ChronicIllness

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    Tortoise Thoughts

    Hello all.
    This is Meldrew, he's my tortoise.
    Sometimes he walks faster than most people can imagine, other times he walks slow, but he always gets to where he is going eventually.
    Some we can feel like the pace we are going is like that of a tortoise, but remember, as long as you get to where you are heading eventually it's all okay. Don't worry about the pace you are going. ❤️ Have a fantastic day everyone.
    #tortoise #pet #Ehlers -Danlos #EhlersDanlosSyndrome #Ehlers -danlos #hypermobileehlers-DanlosSyndrome(hEDS) #HypermobileTypeEDS #EDS #ChronicFatigue #ChronicPain #ChronicIllness #Spoonie #SpoonieProblems #spoonielife

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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

    1 reaction 27 comments

    Going for an EDS Diagnosis

    Hey all, I hope this is allowed (I don't think I saw anything in rules to say it isn't), but I was looking to get some thoughts on what I think may be EDS (perhaps hEDS) and my next steps.

    This post will probably be pretty long, so I apologise in advance for that.

    So, I was diagnosed with Fibromyalgia about three years ago. The GP also thought I could have ME. Generally speaking, I have been in constant widespread (joint and nerve) pain for the past 15 years, but every few years I seem to deteriorate further.

    I haven't experienced dislocations, but perhaps subluxations. I honestly am not entirely sure, though I feel like I should be. My joints are extremely tender, get worse with movement, and I click frequently (which seems to also cause pain).

    I don't have stretchy skin and I'm overweight. Basically, what I'm saying is that I don't believe I will be listened to by doctors because I don't fit the generalised view of EDS.

    I also didn't think I have EDS (a few of my friends do) until people started mentioning the possibility to me. After having done a lot of reading, I'm starting to see it might fit, but I've experienced so much invalidation, weight shaming, and placing blame on my mental illness from so many GPs now that I'm scared to seek help. As such, I've decided to raid the little house deposit savings I have and seek a private diagnosis, in the hopes I can be referred back to the NHS for treatment.

    So, I guess what I'm looking for from the group, if possible, is some thoughts on whether you think my symptoms align with a diagnosis of EDS. I'll list what the worst ones are for me below:

    Injuries: last year, I herniated my disc from simply turning around on the sofa. I've been in constant pain since and am due to see orthopedics next week.

    Bladder Control: a year or so ago, after experiencing bladder issues for years, I lost a lot of my bladder control. I need to pee every few minutes, though when I try, it often takes a long time to actually be able to, and I've had to wear pads now for months due to a lot leaking. Sorry if this was TMI!

    Possible Subluxation: a bone recently popped out in my wrist and has been painful and tender for about a month. I've been too scared to go to the GP. I eventually tried pushing it back in myself and it seems to have shifted somewhat, but isn't exactly as it should be or was before.

    Digestion Issues: I've long believed I have GERD (silent acid reflux), but only recently discovered those with EDS often have digestive issues. I had a really bad episode, lasting six months two years ago, but it dissappeared with only a few symptoms remaining. I am currently going through two months of not being able to eat (or even drink water) without belching, dizziness, bloating, gasping for breath, heart palpations, etc. I'm so, so uncomfortable and scared to eat. I've been told by friends who have it that this also sounds like POTS (I also experience a lot of dizziness upon standing) and MCAS.

    Food Allergies or Intolerance: this one has been with me since I was a child, but the foods I can eat without symptoms are becoming less and less. I recently discovered soya is a big no-no, feta recently made my mouth swell up after years of tolerating it. The list goes on.

    Mobility: honestly, this is where I tend to gaslight myself because I'm overweight, but I know other overweight people who don't live like this, so I'm trying to be kinder to myself and validate what must be something physical. So, I try to walk from the car to work (I am a jewellery maker and have my own studio, so can luckily work to my own pace). The walk is roughly ten minutes, but it is enough to cause a flare-up for the rest of the day. That said, walking is infinitely less painful than standing. Even before my back injury, I have long (maybe the past 10-15 years) experienced severe pain in my lower back when standing. The only thing I've found to help with this is if I sway gently from side to side. The gentle movement seems to help me stand for a little longer, but it's still agony.

    Issues Sitting: I don't know if this is anything to do with EDS, but I have been unable to sit upright on a sofa or most chairs for longer than a few minutes without experiencing severe pain in my lower back and legs. I often cry because I want to sit up, but I always, always have to resort to lying down.

    Joint Pain: All my joints seem to hurt, but the worst is, by far, my hips. As a side sleeper, I find it terribly painful to try to sleep at night. It feels like I'm lying on a brick! Ive also had an extremely tender ribcage for the past two-three years, so much so that now my partner can't cuddle me without excruciating pain and pressure.

    Weakness: again, I'm unsure if this is related to EDS, but I haven't been able to hold a book for about ten years, maybe longer, because I physically cannot bare the pressure it puts on my wrists, the weakness it causes in my arms, and the pain it causes in my neck and shoulders. As such, I read, lying down, with a Kindle. It's the only way it's manageable.

    Uff, I'm so, so sorry! I know this has been an essay! I just wanted to provide as much information as possible in order to get some feedback.

    Looking at the EDS diagnosis, I'm pretty uncertain if I have it (some questions I don't understand, others I don't have answers for), but reading about EDS in forums, talking to friends with it - that's when I start to think... this could be it.

    I guess I'm wondering if I'd be wasting time and money to see a specialist when this might all be something else.

    Thanks so much for reading. ❤️ #EDS #EhlersDanlosSyndrome #HypermobileTypeEDS #ChronicIllness

    1 reaction 7 comments
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    What has your experience with treatment for EDS been like?

    EDS treatment types and experiences can vary from person to person. You may have tried (or are currently on) over-the-counter medication like acetaminophen or ibuprofen. Or perhaps you are currently trying (or have tried) physical therapy.

    What treatment experiences didn’t meet your expectations? In what ways, if any, have you been pleasantly surprised?

    Share in the comments below. ⬇️

    #EhlersDanlosSyndrome #JointHypermobilitySyndrome #HypermobileTypeEDS #ChronicPain #ChronicIllness #PosturalOrthostaticTachycardiaSyndrome #Fibromyalgia #Depression #Anxiety #Insomnia #ChronicFatigueSyndrome

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    How does EDS affect your mental health?

    If you live with chronic illness, you know it’s no walk in the park. Not only do the challenges affect your daily living due to physical symptoms, but it can also negatively impact your mental and emotional health as well.

    How does living with EDS impact you emotionally? What have your experiences been like?

    📚 P.S. Need something to read? Here’s a Mighty story I love on this topic: The Part of Chronic Illness We Don't Talk About Openly (But Should)

    #EhlersDanlosSyndrome #RareDisease #Hypermobility #EhlersDanlosSociety #ChronicIllnessEDS
    #HypermobileTypeEDS #ChronicIllness #ChronicPain #Spoonie #Fibromyalgia
    #MentalHealth #Anxiety #Depression

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    I’m starting IVIG next week, in the hospital - 5 days.
    I’m terrified.
    Not sure what to expect/fear/dread. #LivingWithPOTS #Dysautonomia #HypermobileTypeEDS #SmallFiberNeuropathy #Fibromyalgia #Stroke #DegenerativeDiscDisease #AutoimmuneDisease


    The Update No One Asked For

    My dentist appointment was the day after my first appointment with my new Primary, so this is gonna be a two for one update.

    The appointment with my new Primary went interestingly well! Although she thinks EDS is an autoimmune disease, she otherwise has a basic understanding of what's affected, what to look out for, and who to get in contact with. She's also hilarious, so that's an added bonus (I don't think I'd ever survive a doctor who doesn't fake laugh at my jokes in a pained way). She has me getting blood work done (today, actually), and I have a cardiologist appointment scheduled for some time in March! I'm a bit nervous, but I'm glad we're working on getting some answers.

    As for the dentist, I was nervous and worried for genuinely nothing. Other than a cap that needs fixing and some mild cavities that will be filled, my teeth are pretty dang healthy!

    #EhlersDanlosSyndrome #HypermobileTypeEDS #HEDS #BloodTests #Anxiety


    Sprained angle, top grade

    Hello, everyone. Hope you are all well. This is the first question I will be posting, as I just joined. I am excited to be here and speak with others who suffer with EDS.

    I sprained my ankle about three months ago, had some hairline fractures on foot, tore ligament, tendon, other damage that wasn’t noticed, I’m sure. I had to use a chair for two months. This past month it seems I can walk some days but I’m very stiff in the mornings. Then if I do actually walk as frequently as one would in a day around the house, next day I have to stay in bed. I read it could take up to six months to heal but my ankle keeps dislocating because for a short while I whore the heavy boot urgent care prescribed. Only made things worse. #ChronicIllnessEDS #sprained ankle #Elhers #EDSHT #HypermobileTypeEDS