Joint Hypermobility Syndrome

My story -

I grew up in the 80s/90s where being “double-jointed” was just a weird quirk/party trick. Well, the women on both sides of my family were affected pretty hard by the hypermobility.

I was 12 when I had my first ever dislocation (and first signs of POTS). It was summer and my house was unairconditioned in Texas. I was helping my mom with dishes when I started to feel slightly dizzy, so I held onto the counter-top.

When I woke up after fainting, half of the dishes were broken on the floor around me, my mom was crying, trying to wake me up, and my elbow hurt. I was taken to my PCP, who had no idea what was wrong with me, but took xrays of my elbow and suggested that I drink more water.

And so, began my relationship with different doctors – specialists, primary care, whoever I needed to see, I would. But, besides being anemic, dizzy/prone to fainting, and hypermobile joints, no doctor had any clue what was going on with me.

Flash forward to age 28(no, really, 28), when I’m working for an established optometrist, he noted that I hyperextended my knees when I was standing tin place; he recommended that I see a rheumatologist/cardiologist because his wife and 2 children had vascular EDS(which if you know ANYTHING about EDS, you do not want vascular EDS).

So, I went to their specialists and was diagnosed with hEDS, POTS, Ankylosing Spondylitis, bursitis and inflammatory arthritis – after years (as in 10 years without any sort of diagnosis) of bloodwork, CT scans, MRIs, etc. My doctors then placed me on a host of medications, including a TNF inhibitor, which essentially made my immune system go bye bye – which my doctor elected to begin 2 weeks prior to the big shutdowns due to covid in March 2020.

When covid began, we had a host of friends that didn’t take things too seriously with restrictions, but understood that we(my partner and I) had to because of my new health findings. We didn’t have to worry about going to the stores because of grocery delivery options and restaurant delivery and our friends at that time would also bring by dinners, etc, since we couldn’t go out. But, empathy fatigue is real. After about 2 months, our “friends” started going back out again(Texas did not take covid seriously, at all) and we were kind of left behind.

I still have no immune system, cannot go to concerts, clubs, etc – which is starting to weigh heavily on my partner, who loves interacting with other humans. But those "friends" are all gone now and the loneliness of

My life looks completely different than I thought it would at this point in my life – I was an avid roller coaster enthusiast, but I know that this part of my life is behind me, along with most exercise, and my sex life (what sex life?!) – but I’m pushing through and trying to make the best of my life as it stands right now.#AnkylosingSpondylitis #Bursitis #ChronicPain #Depression #EhlersDanlos #JointHypermobilitySyndrome

I've been having episodes of low blood pressure. Really low. Like 77/54. The top number is often below 80. But then, I think when I'm in pain, it gets high. Like 148/104. I'm scheduled for autonomic testing next month. Does this sound familiar to anyone?

I’ve been diagnosed with HSD/hEDS, Orthostatic Intolerance (POTS-like symptoms), Chronic Migraines, ADHD, PTSD, and Fibromyalgia. Most of my medications prescribed are alternative use as treatments for my conditions, except my ADHD medication. So, it’s a lot of trial and error to see what works because of the general invisibility of my conditions & most being poorly understood, if not stigmatized.

Which brings me to why I’m posting - not only is this exhausting and frustrating for myself, but my partner gets extremely upset whenever I decide to try a new medication prescribed or try adjusting my medication with provider recommendation. Although it is voiced and agreed that we want me to feel better and not be so impacted by my conditions, it seems like trying out a medication to see if it helps is something that isn’t acceptable for him.

Some of the concern I understand as I have these anxieties about trying new medications. But I’m also willing to try something if it’s known to be used for my conditions and there’s a chance it will make me feel better, which in turn makes both of our lives easier… I’ve tried medication for my PTSD, but that didn’t work for me, so my provider and I agreed to discontinue since I found therapy to be efficient. That and HSD/hEDS are the only conditions I do not take medications for right now (most medications for hEDS/HSD are for chronic pain and comorbidities, though). But those 2 are mainly managed through other modalities; some of my medications can help reduce the frequency or severity of symptoms caused by those 2 conditions. It’s not perfect, and I’m still struggling to get better management of my symptoms that I get the relief needed to function more.

However, I need to alert my partner in case there’s side effects requiring medical attention. And I think fear is partially why he gets upset, but it’s directed at me in a way like I don’t actually need this medication or at least have no reason to try it to see if it works. He will make comments as if I have not looked into the medication before trying it out & as if I have not been significantly more impacted by my unmanaged symptoms over the past couple years that I can’t even do half the things I used to be able to do.

But all my conditions require(d) trial and error; at least with ADHD, the trial and error was brief in comparison to all my other conditions, which were more delayed in receiving diagnosis & dismissed for over a decade. And it’s also why multiple modalities are worth exploring since the delayed diagnoses have resulted in more complexity requiring longer recovery time overall.

So I ask…
How do you cope with all the trial and error with treatments/medications for management of dynamic and often poorly understood conditions?
How do you help the ones closest to you understand that this trial and error approach is what it takes to hopefully be able to function better with complex, dynamic, and multiple health conditions?

#JointHypermobilitySyndrome #HypermobilitySyndrome #EhlersDanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome #ChronicOrthostaticIntolerance #Migraine #ADHD #PTSD #Fibromyalgia #ChronicPain #ChronicFatigue #MentalHealth

Hi, my name is AutieJHS. I'm here because

#MightyTogether #JointHypermobilitySyndrome

With fibromyalgia, orthostatic intolerance (most likely POTS), and HSD/hEDS - I’m finding I need more pillows that provide support while resting reclined in bed and for sleeping without dislocating/subluxation.

** Any recommendations for pillows that support neck while sleeping? Or neck support while sitting reclined on the bed and back support pillows? **

I’m just curious if there are types of pillows or specific brands that anyone can recommend. My cervical & thoracic vertebra shift a lot while I sleep and my shoulder tends to dislocate while sleeping on my side. But I also don’t get enough neck support with my current pillows when I sleep on my back. I just can’t seem to find pillows myself that help me. #Fibromyalgia #HypermobilitySyndrome #JointHypermobilitySyndrome #EhlersDanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome #ChronicFatigue #ChronicPain #ChronicOrthostaticIntolerance

Hi, my name is rpullar. I'm here because I love learning new ways to take care of myself

#MightyTogether #HypermobilitySyndrome #JointHypermobilitySyndrome

I've got joint hypermobility and can feel my hands stretching when I use a rowing machine. Sadly rowing is something I've always enjoyed and it's my best way of getting exercise. But I've stopped for a while as the pain in my hands was getting too bad. I wondered if anyone else experienced the same and what you may have found helped? #JointHypermobilitySyndrome #Hypermobility

If new research into pain says "exercise more! Keep active! Get up every 30 minutes!" then can someone tell me where I'm supposed to get the energy from to do this? How am I supposed to be motivated to exercise if I feel like all my limbs are being pulled apart & my stomach is on fire?
I got a cold today & things are 100% worse than they were before, & I'm not even sure of the rules these days. Can I rest, or do I have to have a brisk walk round the garden followed by some stretching?
It just seems rules for healthy people are "stop exercising when you feel discomfort & rest when you're ill" don't apply to people with chronic pain. "You're in pain already, so develop an unlimited tolerance to it, suck it up & exercise" feel like the approach.
Maybe I'm wrong, but godamnit I need a rant! 🤬🤬🤬🤬🤬🤬 #Fibromyalgia #ChronicFatigue #ChronicPain #ChronicIllness #JointHypermobilitySyndrome