Join the Conversation on
165 people
0 stories
17 posts
Explore Our Newsletters
What's New in

Just saying hello

Just wanted to introduce myself! I’m Jody, a fellow #Potsie I am 56 yo, however I feel so much older as I have a total of 15 dx chronic diseases. Unfortunately, a little more than 2 years ago, I was fainting just a little too much (lol… 🤣), as well as having "gray outs", and my wonderful doctor told me that I could no longer get behind the wheel of a car!! It’s really nice to have to depend on your 85 yo mom to drive you around (who we are not sure if she should/should not be driving distances & freeways) to doctor’s appointments, etc.
#livinglifeinafishbowl #PosturalOrthostaticTachycardiaSyndrome #saltlick #Dysautonomia #SmallFiberNeuropathy #MastCellActivationDisorder #Gastroparesis #EhlersDanlosSyndrome #Subluxations #dislocations #Fibromyalgia #ChronicMigraines #ChronicNausea #ChronicDiarrhea #chronicconstipation #MyalgicEncephalomyelitisChronicFatigueSyndrome #Osteoarthritis #RheumatoidArthritis #Facetarthritis #ChronicPain #Depression #Lonliness #bored #icantpeople

24 reactions 14 comments

Amy of you stop breathing at night?

It happened a few times and it's very stressful. I suddenly wake up in the middle of the night to breath in. It happens on the extra flexible days, only when I sleep on my back. After these few times I figgured that my jaw relaxes too much and constricts my airways. My traumatomogist and my dentist were perplexed and didn't know what to suggest. I sleep with a mouthguard to not clench my jaw too much (otherwise muscles hurt so bad!). Any of you experience something similar?
#EDS #TMJ #dislocations #breathingproblems #Sleep


How do I prevent shoulder dislocations? #HEDS

I have shoulder subluxations daily, and recently I’ve been dislocating my shoulders completely fairly often and I really need to find ways to avoid that. I’ve been doing strengthening exercises for my shoulders and back that my chiropractor gave me and they’ve been helping some. Any recommendations? I really don’t need anymore emergency chiropractic visits to put my shoulders back... #HEDS #dislocations #Subluxations

See full photo

In response to a post about being strong...

I have been through trauma after trauma, ran away to follow my dreams and did! However, soon after I had injured myself and then diagnosis/chronic illnesses mounted - I never got better. Though my condition is genetic and I've always been sick. I have survived more than most can handle- any given year of my life- people assume that I'm the strongest and most resilient person because I have harnessed the power of mindfulness and silver linings. When misery is standard, any excuse to escape the reality is welcome. This doesnt mean I'm all better now, It means I'm o.k at the moment, I'm managing, I'm finding something to live for in that instance. AANNNNDDD then someone comes and makes me into a hero uses my pain as an inspiration story on how things could be so much worse for Them. I hate "I don't know how you do it?" Like I had a choice in my genetic makeup, like my struggles are speed bumps when to anyone else they are mountains, landslides and monsoons. Like "wow you are so brave and strong" for existing---!%@^#%@& gee thanks. And then when I crash from holding myself together (literally I have EDS) "they" are gone. I'm too dramatic or "I need to get it together" Uhhh No, that's not how strength works! That's not how one becomes a fortress in the eyes about them, it's the same hard work anyone does on themselves, its then humble cry for help because my walls are crumbling. Yes I'll be trying, but strength is not measured by the number of tears that Dont fall. Strength is admitting its it's ok to crumble, its it's ok if you just need to survive the next day or hour or minute. Rather I feel the strongest when bolstered by those that validate my feelings and my experiences as any other. I am just as human as any, don't make responsible for inspiring you when all I need is a hug from someone with compassion. #ChronicPain #EhlersDanlosSyndrome #HypermobilitySyndrome #orthostaticintolerance #DegenerativeDiscDisease #Osteoarthritis #Incontinence #ChronicFatigue #CPTSD #GastroesophagealRefluxDisease #dislocations #Anxiety #OccipitalNeuralgia #Dysautonomia #Dystonia #MTD #TemporomandibularJointDisorders


My vertebrae are playing tricks on me

So I had to have my spine realined by #ManualTherapy 4 times in the past 3 days due to #Hypermobility . Yesterday I had 5 vertebrae partially dislocated in the morning, and different 4 ones in the evening... The doctor said I'm doing everything right, and my lifestyle choices are ok. But all of this #Pain is just so annoying. I can't help but feel that I'm doing something wrong or moving weird or.. IDK. I couldn't work a single day this week, as I was so dizzy. Couldn't even walk straight. It totally looked like I was drunk in the middle of the day 🤦‍♀️ Apparently my brain was getting only ~70% of bloodflow. Now that my spine is aligned again, I still have #BrainFog . As I'm writing this, I heard another pop in my neck 😳#GoodPopOrBadPop ? I wanna do stuff and not be bored laying in bed not moving, but my body is just saying 'nope'. #EDS sucks.

#CervicalSpineInstability #SpineProblem #EhlersDanlosSyndrome #dislocations #Subluxations #spinal subluxations


Does anyone know how to relieve dislocation pains?

I’ve just recently been diagnosed with patella alta, hyper mobile Ehlers Danlos and have been dislocating knees and hips. Wondering if anyone has suggestions that aren’t hot/cold therapy and painkillers. Thanks xx #dislocations #Ehlers -danlos #Pain


Has anyone with #EhlersDanlosSyndrome been able to find a way to put their #sacroiliac #Joint #dislocations back in place?

I've been in severe pain for 4 days now. (it was 'just moderate' before) I haven't slept, I keep vomiting because of the pain. Even morfine combined with NSAID's doesn't help.
My #POTS is all over the place because of all the meds and not being able to drink enough.
My physical therapist tried to put the SI joint back, which seemed to help but after an hour it just popped back out of place. I've been in an out the doctor's office... They have no idea what else to try.
I feel so tired and hopeless since no one seems to have a solution...
I'd love to hear any suggestions, also on prevention.
Anyone who had a #Fusion done?

See full photo

The signs were always there! #elhersdanlossyndrome

I’m almost 40 years old and the signs of elhers danlos syndrome have been there since I was born! Not to mention my discovery lead to realizing that my brother has it too!
Had echocardiogram and appointment made with genetics department! Meanwhile my shoulders either partially dislocate or fully dislocate! Don’t get me started on my knees and ankles! And my back ugh! I sound like a walking rice crispy treat literally! My new life! #EhlersDanlosSyndrome #GeneticDisorder #dislocations #JointHypermobilitySyndrome



Stop trying to make me laugh at my pain. This is not a bdsm collar. Laughing actually hurts. Your efforts to cheer me up making my pain worse or more apparent. This is still an open wound , numbing it with laughing gas- wont work and is ignorant. Laughing at others pain has never been something I enjoyed, now it makes me sick. - Trying to ease your discomfort with my disability is not my responsibility. #EhlersDanlosSyndrome #ChronicPain #notfunny #Anxiety #createempathy #ChronicIllness #Braces #spineinjury #dislocations #Subluxations #Neuropathy