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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

How to convince my parents that i cannot just "WALK OFF" an EDS-related injury?

#EhlersDanlosSyndrome , #VEDS #HypermobileTypeEDS #Subluxations

I could honestly do with some advice, here; I have a pair of "caregivers" (my parents, incidentally) who seem convinced that I can just "walk off" my EDS-related subluxations, even when I complain I'm in so much pain as I attempt to walk the length of our 900sqft house in order to talk to them about it... :(

So does anyone have any tips, or expert websites for me to send to them? I would be eternally grateful to anyone who could help me make them take my injuries with hEDS as seriously as they do with my vEDS—which they had made me quit my job over after COVID hit state-side, mind you! (They were terrified of bringing it home to me, especially after the experts discovered that it was a vascular disease, as well as a respiratory one!

Any guidance would be much appreciated. Thanks so much in advance!

12 reactions 4 comments


After months of bed-bound difficulties (rapid gastric emptying, POTS-like issues, subluxations & injury of my knee, neck, hip), I’m in one of those euphoria upswings of decent health. I’m grateful to move without debilitating pain, complete chores, be social, and have renewed hope.
Nothing changed magically. I work daily on my health, trying to get diagnoses & treatment, resting, cardio everyday (thankful I found a pedal machine that lets me move even when my body doesn’t want to), meditating, increased protein intake, salt & fluids, losing weight, and researching. I also let go of daily plans/expectations and try to just focus on what is in front of me.
I’m a little POTS-y today, so will rest more. Also a little gurgle in my gut, so castor oil pack treatment as well.
Also just finished a check-in appt with my therapist. We book my phone appointment every 3-4 weeks. It gives me comfort knowing it is there. Sometimes I need her to help me shift perspective, hold me accountable, or to help me give myself permission to do what my body needs. Sometimes I get to just brief her on how well all my strategies and tools are working for me.
I have peace, grattitude, and hope. Things are getting better, and I feel better. My wish is that you get these beautiful breaks too, and they fill you with light, love, resilience, and strength too.
#EDS #HEDS #POTS #gastricissues #Subluxations #grateful

1 comment

Joint subluxation

How can you tell if a joint, specifically my thumb, is subluxed?

It’s been bothering me for over a week and my normal technique to get it back isn’t working. I had the chiropractor try to get it back on Thursday and even he couldn’t get it to budge. I thought it got better over the weekend, but today I was typing and using the laptop at work and all of a sudden it started hurting quite a bit more. The pain spread through the thick part at the base of the hand/thumb and down my arm. I can’t make a fist or grip the steering wheel without pain. I contacted my doctor and he said he doesn’t think it’s a true subluxation and that I should talk to the hand surgeon when they do my carpal tunnel release surgery on May 18th.

What would you guys do? I really don’t want to wear a brace 24/7 for 3 weeks....

#HypermobilitySyndrome #Subluxations #Fibromyaliga #ChronicPain #ChronicIllness #Osteoarthritis


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


How to realign back?

So I subluxed my back today right before work. I tried doing the same action that caused the subluxation, tried stretching it out, tried heating pad, and my oral CBD oil none of which have worked. Chiropractor is closed until Monday and I am scheduled to work Sunday and Monday night. Any advice for getting my back realigned? I see my PCP for a previously scheduled appointment Monday morning but that’s a ways away in terms of pain. I’m hoping it doesn’t get worse over night but we’ll see.
#EhlersDanlosSyndrome (?) #Subluxations #Hypermobility #ChronicPain


Any tips for Subluxation? #EhlersDanlosSyndrome

So I am waiting to be seen by 2 doctors (a geneticist and a rhuematologist) to diagnose me with EDS but that probably won't happen until January. The issue is I subbluxed my shoulder. And everything on the EDS society website I've found says not to worry and go to the hospital unless it's changing colors or numb all over the arm. But I would love some tips on how to manage it because it's been in so much pain the past couple days that I want to cry.
#ChronicPain #ChronicIllnessEDS #Subluxations


New #PhysicalTherapy

Hey y'all! I'm in the process of switching my general physical therapy to #PelvicFloorPhysicalTherapy for my lower back weakness due to #HypermobileTypeEDS . Has anyone else done this? Any tips? What's your experience been like?
#ChronicPain #ChronicIllness #CheckInWithMe #Subluxations

1 reaction 2 comments

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 Gabapentin make anyone else sleep a lot? #ChronicPain #HEDS #Subluxations

I’ve taken gabapentin the last two nights and I have woken up the next afternoon. The first night I thought it was just because I was getting my period, but it happened again. Granted I did stay up until 4:30 am (I was listening to You’ll Be Back from the Hamilton soundtrack and I couldn’t stop. Lol). But usually, I can only sleep for 4-5 hours at a time even with my meds. So wondering if the gabapentin makes me actually sleep for once? Thinking I’ll lessen my dose (I can take 1-3 pills depending) and go to bed at a decent time.
If anyone has had a similiar experience, please let me know!
It’s nice to sleep for once, but now I’ve missed the entire day so... not my favorite thing. My parents got worried and just checked on me. I’m alive, just tired. 😴 #HEDS #Depression #Anxiety #Insomnia #ChronicPain #Fibromyaliga