hypermobility syndrome

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Hi, my name is Patronusgirl04.

#MightyTogether #PTSD #ADHD #Anxiety #Depression #HypermobilitySyndrome I was recently diagnosed with ADHD (about a year ago) I've been in Physio for a few months due to a work injury. last week my new physio therapist said my shoulder blades were hypermobile. so did the scale and determined that I'm hypermobile. I have an appointment to talk to my Dr about it and to see what help I can get since I'm always in pain. I've also started getting severe POTS symptoms.

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When will they understand #exhaustion ?!

"If you would just exercise more, you wouldn't feel so tired". Are you freaking kidding me?! Remember when you had COVID and could barely walk to the bathroom and back to your bed without wanting to collapse into a puddle? THAT is how I feel after 2 minutes of exercise! Argh!!! #frustration #AutonomicDysfunction #HypermobilitySyndrome #cancersurvivor

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Trial & Error Woes

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

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Holistic Medicine - yay or nay?

What are your thoughts on holistic medicine?

Aside from fibro I struggle with migraines, chronic fatigue, hypermobility, etc. I went to a chiropractic/brain wellness/nutritionist/gut health doctor yesterday for a consultation (not covered by insurance of course). She validated my pain and experiences (rare with most doctors). Maybe she can help like she claims but I am hesitant with no guarantee and paying out of pocket. Has anyone tried something like this before? Is there any hope for relief?

#Fibromyalgia #Migraine #ChronicFatigue #PostconcussionSyndrome #PTSD #ChronicPain #HypermobilitySyndrome #Anxiety

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Pillow struggles

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

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Generational pushing though pain

Recently I switched my Primary doctor, and was able to get more clarification regarding diagnosis of HSD vs hEDS. Without genetic testing for hEDS and no family history of diagnosis, I have to get to more specialist appointments and do some investigating of family medical history. Both sides of my family are known for pushing through pain, fatigue and presyncopic symptoms, to the point I thought many of these things were normal as my parents both just dealt with it their whole lives.
But regardless of what I find out family history wise, it seems like my health provider is labeling HSD and hEDS as the same diagnosis of “hypermobility syndrome”. They will only genetic test for the other EDS subtypes if I have family history or my specialist appointments reveal possibilities of a different subtype.
It does feel a bit pointless to further investigate this knowing they dont consider these separate conditions. However, if things change with my health provider, at least I’ve started this work with my primary doctor.

Also, I feel like they are putting a limit on how they can help with managing hypermobility and comorbidities associated from what information I was given by them.

** So, I’m curious if anyone has holistic, homeopathic remedies they recommend for managing pain, fatigue, and other issues that come along with HSD/hEDS? **

I feel like I have some help via my health provider with PT and some acupuncture, but curious if there are other things I should look into for pain relief, feeling less foggy mentally & joint/muscle support. I’d appreciate any advice/suggestions offered!

**** Edit to add: Any recommendations for pillows?
Back, neck, hips, knees - any types and brands to get that help support while sleeping would be much appreciated!

My mattress is pretty shoddy and cheap, but affording a high quality mattress isn’t feasible any time soon. So I’m hoping if I can get some pillow recommendations, that can help until a good mattress is affordable for me. Thank you all in advance for helpful advice and recommendations! ****

#HypermobilitySyndrome #EhlersDanlosSyndrome #ChronicPain #ChronicFatigue #Fibromyalgia

50 reactions 15 comments

I’m new here!

Hi, my name is westiegirl. I've been diagnosed with fibromyalgia, hypermobility syndrome and chronic fatigue. I also deal with panic attacks and migraines. it's difficult to find doctors and others who understand. I'm looking for advice and support while navigating my illness.

#MightyTogether #Anxiety #Depression #Fibromyalgia #Migraine #PTSD

18 reactions 7 comments