r/hypermobileEDS

30F 5'2" non smoker, Dx Ehlers Danlos / HSD, taking Clomipramine, Adderall, and bc pill

I have somehow, through overtensing my muscles, managed to do something to permanently numb both half of my right hand and halfway down my calf to my feet, causing foot drop. This was happening intermittently to my lower right leg (mostly from wearing sandals) but has now become permanent. In the beginning I was rolling my ankle constantly, but muscle memory seems to have kicked in and allowed me to walk despite the drop. I know this is probably bad for my back because of the way I am replicating flexion of the ankle by lifting instead of striding. It's that or I am walking heel toe with my left foot and toe heel with my right.

I am suspicious this all began when I tore my right rotator cuff a year ago. I currently do not have health insurance and am doing fine, but the only response from research I get is “go to the ER yesterday.” I am mostly concerned because I've completely lost grip strength in my right hand (will literally forget and drop plates/mugs lol) and now it is seemingly spreading to everything below my knee. It is a little hard to type as well unless I watch my hand whereas it used to be something I could just do. I also think adderall has me so tense all the time, but ironically it also really helps with the general fatigue - so I still feel better on it. But this is getting weird. Left side is completely fine.

This has been the case for months now. Has anyone experienced this?

Recently my skin seems 10x as fragile as it used to be, kt tape rips my skin raw, small amounts of friction wear my skin off very fast, is this typical for heds? I received a diagnosis of heds a few months ago, it says slight skin fragility is normal online is it supposed to be like this though?

It’s honestly infuriates me that a lot of influencers post their party tricks or things they do that they know they shouldn’t just to point out they do something differently than they should. I feel like the #1 thing is DONT do party tricks. But to each their own you know🤷🏼‍♀️

I am looking for a specialist in hypermobility and ehler danlos in Manchester. Any good experiences?

I’m recently diagnosed with hEDS, but I also have cPTSD. My partner has MS.

I feel a lot of guilt about bringing up pain or symptoms because it feels like I’m being a downer or complaining or trying to compare my condition to hers. She has never made me feel this way; it’s a fear of invalidating her experience the way people in my past have invalidated my experiences. I also have been chronically dissociated for a lot of my life so I never noticed some of my pain or it was normalized until recently.

Does anyone else feel guilty for talking about their experience with hEDS or HSD with loved ones with other chronic conditions? How do you navigate that?

Hello fellow sufferers,

I have experienced significant problems and symptoms throughout my life, and HEDS had been previously mentioned to me by an orthopaedic surgeon. I was finally diagnosed six months ago when I presented to my doctor with allodynia (pain with no painful stimuli), and they put all the pieces together. I underwent a series of tests to rule out other potential culprits and was scored against HEDS criteria.

Things have been especially tough over the last year, and I just need to reach out partly to vent to those who understand and partly to ask how you are coping. I’ve been through a period of significant stress following the death of my father, and I feel my symptoms have significantly worsened.

I’m exhausted to my bones and frustrated with feeling unable to do the things I want to do. I work from home but barely make it to the end of my working day. I’m incredibly unproductive at times. I’m a trained artist and jeweller and try to spend as much time as possible making and drawing outside of my full-time job in finance. I find that if I have a spare hour in the evening, my mind so craves for me to pick up my tools, but my body just can’t... Other days, I feel both physically and mentally exhausted. I spend a lot of time lying down.

The allodynia is brutal. Large patches of skin down my arms, across my back, shoulders, and thighs feel sunburnt. The slightest touch of my clothing or a hug from a loved one is so uncomfortable. I was prescribed pregabalin, and while they help a bit, they make me feel as though I’ve had six strong drinks, so I can’t take them and drive, and they can make productive working more difficult.

I have the most unhappy stomach of anyone I’ve ever known. It’s “upset” almost all of the time, with very little respite from racing to the toilet, terrible cramps, and uncomfortable bloating. I take Imodium if I have somewhere to be out of the house for any time, but I feel that the slowed digestion after-effects of those can cause more issues, and I’m always straight back to the same unhappiness.

I cannot sit for any length of time as my coccyx is incredibly painful. Firm chairs or airplane seats are torture. I wake up at night with pain in my hips and pain from my knees knocking together. My shoulders ache constantly, and following a spinal fracture in 2012, I experience crushing back pain over the previously injured vertebrae.

Since my diagnosis, a lot of the symptoms I’ve experienced over so many years have made much more sense, and I’m glad to have answers, but I’m deflated that there are no real fixes.

Some days, I feel quite withdrawn from life. I was and am such a social person, but these days, I couldn’t make it to the end of a night out. Friends and family don’t always understand the condition, and whilst my partner means well and has been a huge support, he’ll say, “surely there’s something else wrong,” and I feel misunderstood and alone.

Sending out an SOS and grateful to hear from anyone who finally understands what we are going through.

Hello! I'm diagnosed with hEDS and I'm sorting my sleep situation but I'm seeking opinions.

I currently have a medium firm mattress with a 4" foam topper. I used to use a pregnancy pillow, but it was messing with my neck so I went back to the pillow between the knees & squishmallow between my shoulders as I'm mostly a side sleeper.

I've been looking at new mattresses, but I need something very soft. I need my body to be fully hugged into place with whatever I get. That all said, do any of you have mattress recommendations for super plush mattresses? I like the avocado mattresses but they're pricey as hell. Any and all recs are welcome!

Sorry if this is a weird question, but I'm not sure where else to ask it.

I'm not sure if being able to reach under my breast tissue and move it is normal/a hyper mobile Ehlers danlos syndrome thing (and if I should be concerned), like I can grab the tissue and move it away from myself (not very far, but it feels like it's being held in place by mostly the skin and a couple of strings. (I have a very small chest)

I also I couldn't find the tag for seeking a diagnosis, so I wasn't able to tag it as such

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I became unable to work, with cancer and many symptoms getting out of control. I have been facing a cycle of disability, poverty, chronic pain, homelessness, and lacking of all resources for so long now. I am needing to resort to all kinds of horrible things to survive. Most recently, I experienced a foot fracture for the first time(bone density so compromised that subluxing is causing fractures) in a lower extremity. Lack of healthcare waiting on a SSD determination has led to exponentially more and more bodily damage that is impossible to manage. I’m trying to start looking elsewhere and get even more creative for help. Ian determined to survive this. I will die before I even have a chance to live at this rate and I better fight harder than anyone ever has before. Please let me know if you are aware of any more EDS-specific resources that might help someone in my circumstances.

I don't even fully understand what a rheumatologist does in relation to hEDS, but my doc seemed certain referring me to the rheum was the next step in my (probably) hEDS journey. I was also referred to a geneticist, but they told me they don't do anything in regards to any form of EDS, so that was a bust...not like they can test for it anyways.

I appreciate any advice/suggestions so I don't feel like I'm going into this appt completely blind. I'm honestly surprised my doctor took me serious. (It's been a long road to get to accepting I likely have hEDS...probably MCAS and POTS, but one thing at a time. Spent thousands on dentists/orthodontists for jaw pain the past 20 years thinking TMJD was my only issue causing so much pain and migraines. I have been not believed and conned and ignored and gaslit by doctors. My amazing husband was the one who brought hEDS to my attention 2 years ago and I finally accepted I have a fuck ton of symptoms and brought it up to my PCP.) My doctor let me read out the whole symptom list I put together and typed it all out for my file. And after I read it all out and felt so embarrassed sharing everything I deal with daily/nightly, she said "I can tell you're hypermobile just by the way you've been sitting in that chair trying to find a way to be comfortable." We also went through the checklist criteria for hEDS and I have the criteria for it. It's nice to finally be believed, now I'm nervous I won't be believed by yet another doctor. Sorry for the ramble. Just nervous for this rheumatologist appointment and want it go to as well as it can for me. I hate anything medical related, but I feel like I have to do this for myself. I owe it to myself, especially if I am finally so close to an answer to what I have been coping with for so many years.

I have an hEDS diagnosis.

I am getting my wisdom teeth out in two days, and am curious on any advice for anyone who has gotten them out! Anything you can suggest, any recs., any experiences that you were not prepared for?

Three are impacted close to the nerve, and the fourth is “erupted” but is growing sideways into my molar 😭

OK so this might be a bit all over the place since I'm a bit mad at the moment. I've been diagnosed with hEDS for years. I've got all the joint pain, passed all the tests ect. Recently I went to a Rhuematolagist to get a POTS test done. At the end of the appointment, not only did we not do the POTS test, she told me she thinks I don't have EDS?? According to her, I'm just physically weak. What?? Yeah, I know strength training can really help with pain, I do that. (That's what I thought she was talking about at first) but no, she just didn't think I had EDS at all. My finger touches my forearm, my elbows and knees all hyper extend, I have the chronic pain, I'm literally the textbook set of symptoms.

Has this happened to anyone else? Honestly I'm more mad we barely talked about POTS more than anything else. ​

I have been having joint hypermobility issues forever and recently just a lot more health issues in general I've had progressed a lot and became more prominant. I'm 19, idk if its due to health declining from lack of something or just general progression of illness if I have something beyond general hypermobility.

I seem to have a lot of other signs besides the joint hypermobility of course. Which are soreness in them and random spots, locking, discomfort and needing to pop, pain for days in certain areas when I can't fix one cuz its stuck but I can't explain it to ppl, my joints litteraly are all over the place and I swear then become looser and pop more every day..

dizziness, life long mystery GI problems, regurgitation, heart rate spikes, passing out from knees locking once, numbness in limbs, passing out in general randomly, tunnel vision especially when reaching up. The list goes on-

I meet the diagnostic criteria from what I'm aware an have read myself but haven't brought it up to my doctor yet and am like oh my word cuz what would I even do with this information in the end? I get so scared bringing stuff up but I'm losing my mind slowly and cracking like a box of rice crispys. my s/o is already struggling and I don't wanna add stress or take away from the support they need since its A LOT on their body and I don't wanna sound like I'm being dramatic with my own bodily issues but why do I keep waking up with every joint being in pain when I haven't done anything and im waking up to a heart rate on 120 then having palpitations at 11pm after dinner but normal rate and don't know why and my shoulder blade sides also show uneven when I stretch my arms up hands together so now I'm concered abt that too..🫪

Sorry I went on a messy ramble but im genuinely so lost and would love some advice from anyone who may be able to help guide me in the right direction so please share thoughts and all!!

😣🌼

if you have questions I'm an open book