Joint Hypermobility Syndrome

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Joint Hypermobility Syndrome
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Just when you think you’ve heard it all…

It’s comments like these that can make a person wonder what it’s like to live in another person’s body. Is swaying a useful suggestion for anyone? Because it certainly wasn’t for someone living with frequent joint injuries and chronic pain.

#EDS #EhlersDanlosSyndrome #ChronicPain #ChronicIllness #JointHypermobilitySyndrome

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#ChronicIllness fighter . Living her best life! Overcomer ! #epilpseywarior Hidden Invisible Autitsc Striped zebra! With a creative mind!

#epilpsey Sezure awareness ; #MentalHealth
Hidden disbalty . Fribomlga warrior #LymeDisease #AspergersSyndrome / autism awareness! ADHD . #OsteogenesisImperfecta { brittle bones/ cognitive tissue disorder} hypersensitivity.
Sensory processing disorder! #JointHypermobilitySyndrome hypermobile Elers Danilo’s syndrome #RsdCrps

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Lost & Undiagnosed

I was diagnosed with "Hyper mobile Joint Syndrome" when I was in college in my 20s, but in the last 20 years, the only other thing specialists have been able to come up with are two other auto immune disorders (Sjogrens & Fibromyalgia). A few have wondered about some sort of EDS but none have actually been serious enough to look into it.
Any advice? I'm tired of being so sick and not knowing what's going on. Alot of symptoms aren't explained by my current diagnoses.
#JointHypermobilitySyndrome #

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Making A Statement

Hi everyone, I wanted to share an important press conference I was so grateful to be apart of. It was regarding my personal heath journey, and speaking out about the difficulties with health insurance. I wanted to speak out publicly for everyone who’s enduring this battle and to know you are not alone! Please watch
#Grief #Depression #BrainInjury #SpinalCordInjury #AlopeciaAreata #Anxiety #MentalHealth #Addiction #ChronicIllness #JointHypermobilitySyndrome #ChronicFatigue #Loneliness #MightyTogether

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Just a general question regarding prescriptions…

Update: recently had a change in dosage for ny medication - they gave me 2 medication info sheets upon pick up today. While checking to see if there was a difference, I saw the different inactive ingredients for the different doses by this manufacturer. Turns out, the red dye in my previous dose is controversial for causing cancerl with daily ingestion of high doses(it’s banned in multiple countries and soon to be banned in my state for use in food). It’s reasonable to assume long duration of daily ingestion could also cause cancer, especially since scientists have previously petitioned the FDA to overall ban this red dye (#3 ). Side effects include migraines, irritability, inability to concentrate and upset stomach… Explains why it didn’t seem as effective and why my body felt repulsed when taking it!


So my question is this:
Is it possible to request for a specific manufacturer of a generic formula when I’m ordering my prescription OR at least request not to receive a specific manufacturer when getting my prescription filled?

Does a provider need to make the request OR can I request it only if agreeing to pay for any out of pocket cost?

To give a little more background: I recently had my coverage changed, and when I received a refill of my prescription medication, the manufacturer company was different. While I have been able to receive generic instead of brand name medication for my prescription without much difference in effectiveness, this has been the first time I’m noticing that not only a difference in appearance.
I’ve received the same manufacturer company of the generic formula for several months until this month’s prescription. This “new” manufacturer has different appearance that seems to use a dye or coloring that gives an unpleasant taste. While I’ve overlooked this at first, I have noticed I don’t seem to be getting the same benefit from my medication now as I had with the previous manufacturer’s product.

I’m uncertain if the manufacturer changed because my coverage plan changed or if this was just something that changed in general based on stock at the pharmacy. But I’m starting to feel fairly certain that whether its the inactive ingredients used or the formula for this generic manufacturer, it is not being effective now. What I suspect most is that since the product itself looks different in coloring and that dye causes a noticeably horrible taste (which causes my body to feel repulsed), the inactive ingredients are likely the cause impacting the effectiveness of the medication for me. Simply - my body isn’t tolerating the inactive ingredient of the color dye used by this other manufacturer, causing the medication to be ineffective in treating what the product is supposed to treat.

And if this helps with providing an answer: my prescription is for ADHD medication - I take extended-release generic capsules of generic formula adderall. I have not had brand-name adderall dispensed for years, so I do not think it’s simply the generic formula that is impacting this change. Although I guess different manufacturers can still have different generic formulas?
#Medication #ADHD #JointHypermobilitySyndrome #Fibromyalgia #ChronicFatigue #Migraine #multiplehealthconditions

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💪🏻‘Courage’ is not ‘Fearless’💪🏻

Having courage is not the same as being fearless. When you complete a task despite being absolutely terrified, that is true courage! 💪🏻

#MightyMoment #PositiveThinking #MentalHealth #Depression #Anxiety #ChronicPain #ChronicIllness #FunctionalNeurologicalDisorder #JointHypermobilitySyndrome

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Tracheal shifts, mandible sheering, upper facial and nasal subluxations/shifts.

Do any of you other #EhlersDanlosSyndrome #EDS #JointHypermobilitySyndrome experience these types of subluxation? Do you reset them yourself (like I do)? Does it feel like it affects your breathing? It feels like I'm breathing through a bent straw at times. My top row of teeth shift around left right and forward and backward and I often wake up with it messed up from sleeping. My cheek bones sometimes need to be pulled back together towards the center of my face. Even my eye socket and brow bones need to be shifted back in. It gets so overwhelming when there is nothing that stays in place on its own. Can any one else relate to these particular issues?

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Welcome to my secret account to talk about EDS and hypermobility

Essentially people get weirded out by talking about dislocation like its normal… but if you dislocate and bruise stuff on a daily basis … it kinda becomes your normal?

Finding out for most people this isnt normal… is a bit reeling especially trying to figure out what everyone else calls “Pain.” And how to notice something as “Pain.”

Im dxed Hypermobile I am trying to get on a 5+ year waitlist for an Eds diagnosis with the only Geneticist in my area… however until then I only have hints that make me suspect Eds over hypermobility mostly GI comorbidities.
#EhlersDanlosSyndrome #JointHypermobilitySyndrome #HypermobilitySyndrome #ChronicFatigue #ChronicIllness #ChronicPain (I think?)

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