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

Hand pain causing problems - ideas?

Lately I've been having difficulty with a lot of things due to pain and instability in my finger joints. I'm struggling to stay on top of my schoolwork because it hurts to write for long periods of time, and as a physics student I have to do a lot of pencil-and-paper work so typing isn't an option. I can't practice violin very much either, which is slowing my progress in lessons and disappointing my teacher. And I can't knit for long periods, which is frustrating since it's a new-ish skill for me (started about a year ago) and I want to be able to get good at it. Does anyone have things they do that help with hand issues? I just want to do my normal activities without getting aches in my fingers or worrying that my thumb is going to sublux (which I don't think it has, but sometimes it feels like it really wants to!!)

#EhlersDanlosSyndrome #hypermobilityspectrumdisorder #Jointpain #Accommodations #musician #Knitter

15 reactions 11 comments

Diagnosis finally!

I've been diagnosed with hypermobility spectrum disorder very recently. I'm currently trying to process everything and work out what help I need to go back to the rheumatology team in January. I've had symptoms since I was a child but I've been really struggling with pain in my hands and feet particularly in the morning. I've had this for over a year now and been going back and forth with doctors until I finally got to see a GP who referred me for every blood test she could think of and referred me to rheumatology and cardiology to cover all the bases. I'd be interested if anyone has tips on exercises or pain management. I'd love to get fit again but the pain next day just makes it unbearable. #hypermobilityspectrumdisorder #JointHypermobilitySyndrome #Hypermobility #PainManagement #Pain #Exercise

1 reaction 3 comments
See full photo

What helps you cope with gastroparesis?

We're nearing the end of Gastroparesis Awareness Month. As we've discussed this month, gastroparesis can be a very challenging condition to live with, whether the challenges have to do with our signs and symptoms or the lack of knowledge and acceptance we see from other people.

While managing gastroparesis is tricky, I'm sure our community has a ton of great coping techniques for dealing with this condition and any other health challenges that come our way.

For instance, I cope with gastroparesis by scouring Pinterest for fun recipes that won't cause my symptoms to flare. I also find it helpful to talk about my experiences with folks who know what it's like to live with gastroparesis and other conditions like it.

💚 So, fellow Mighty spoonies, how do you cope with gastroparesis? 💚

Maybe you have a go-to TV show or movie that makes you feel better. Or a book of puzzles you like to do to distract yourself. There could even be a blog you follow that helps you learn how to manage your symptoms.

Let us know in the comments below! 👇

#Gastroparesis #EhlersDanlosSyndrome #Diabetes #ParkinsonsDisease #GERD #Neuropathy #hypermobilityspectrumdisorder #CheckInWithMe

2 reactions 15 comments
See full photo

What media has helped you in your journey with Ehlers-Danlos syndrome?

Living with EDS often means that we have to become experts on our condition. There aren't a lot of resources out there on EDS and the conditions commonly associated with it. While we are able to learn from each other and discuss our experiences in communities like the one here on The Mighty, it's easy to feel pretty lonely and lost while dealing with a rare condition.

So, Mighty zebras, we want to know what books, TV shows, movies, YouTube videos, TikToks, podcasts, video games, or any other type of media has taught you about EDS or made you feel seen and less alone. What do you wish you had read, seen, heard, or played right after you were diagnosed (or on your diagnostic journey)?

Your answer may be used in a Mighty story!

#EhlersDanlosSyndrome #EDS #POTS #Gastroparesis #MCAS #Hypermobility #hypermobilityspectrumdisorder #SmallFiberNeuropathy #Migraine #CheckInWithMe


Temporary Alternative to Silver Splints?

Hey lovely people! Quick question about finger ring splints. I have several splints from the Silver Splint Company and I’m looking to order some more. However, I would like to try out the type of splint to make sure it actually addresses the pain before I invest in a silver splint. So I was wondering whether anyone knows of a company that makes similar splints to the Silver Splint Company/custom splints but in plastic or another (less expensive) material? Due to my location, an Australian-based company would be ideal, but if not, any company that currently ships internationally! Thank you so much! Apologies if this post is a little rambling - my brain fog is on point today haha.
Sending you all light and love!

#EhlersDanlosSyndrome #EhlersDanlosSociety #JointHypermobilitySpectrumDisorder #hypermobilityspectrumdisorder #HypermobileTypeEDS #ChronicIllness

See full photo

You know you’re an EDS patient when…

OK, friends, it’s time to sound off! What moments have you experienced that have had you saying, “Wow, that’s so typical of EDS?”

Maybe you’ve been sitting at the dinner table with friends when someone points out that you’re sitting with your legs intertwined in an “impossible” position. 🧘‍♀️

Or you could be on your third specialist appointment of the day and still have physical therapy that evening. 🏥

My most recent “You know you’re an EDS patient when…” moment happened when I squatted to play with my dog and my dad said, “How does a human move like that? You have frog legs!” 🐸

Fellow zebras, please comment below with your “You know you’re an EDS patient when…” moments! ⬇️

Your answer may be used in a Mighty story! ❤️

#EhlersDanlosSyndrome #ChronicIllness #CheckInWithMe #hypermobilityspectrumdisorder

See full photo

What helps you mentally and emotionally cope with having EDS or HSD?

Hi, friends. I'll put it plainly: dealing with these conditions is TOUGH. I recently went through a horrible depressive period that was exacerbated by my physical pain and the myriad of conditions that come with hEDS. I was luckily able to get myself into a group therapy program for a few months that helped me work through a lot of my feelings about being chronically ill and in pain all the time. I've also been in 1-on-1 therapy since childhood, which has proved to be quite helpful as well. It's an ongoing process, but putting in the work has been worth it!

🦓 As I'm sure many of us know, there are good and bad days when it comes to coping with chronic illness. So, Mighty zebras, what has helped you deal with the mental and emotional ramifications of having an illness like EDS or HSD?

💛 And if you're still looking for a coping technique, I hope you're able to find what you need in this thread!

#EhlersDanlosSyndrome #ChronicPain #ChronicIllness #PosturalOrthostaticTachycardiaSyndrome #RareDisease #Depression #Anxiety #Insomnia #hypermobilityspectrumdisorder #CheckInWithMe

See full photo

What are your go-to movies, TV shows, books, podcasts, video games, etc. when you're having a rough symptom day?

Happy Friday, friends! I hope you're all having a low-symptom day.

However, when you do have a painful day or are experiencing lots of symptoms, what do you like to do? What movies or TV shows bring you joy?

When I'm stuck in bed all day, I love to do crossword puzzles or play the same Nancy Drew computer games I've played a million times before. I'm also a big fan of rewatching my favorite Parks and Recreation episodes!

So, my fellow zebras, what do you watch, read, play, or listen to when you have to take it easy?

I'm looking forward to getting new recommendations!

#EhlersDanlosSyndrome #POTS #CheckInWithMe #DistractMe #Spoonie #ChronicPain #ChronicFatigue #hypermobilityspectrumdisorder #alwaysinbed #Migraine

See full photo

Writing is therapeutic

I've been in a pretty dark place lately. Moving has driven home (once again) just how painful and fucked up my body is. The first trip in decades that I've planned just for me, purely for fun, was supposed to be happening now but was cancelled because of the rising covid rates. I've had 2 potential dates ghost me because they were intimidated by my falling apart body. When my brain heads off on a dark path, I try to write... but that's hard to do when it gets so dark I can no longer see the path in front of me. Still, I know writing helps me find my way and working within the structure of a specific type of poetry gives me boundaries that help me feel a little less out of control. This morning (and the darkest parts of my mood) slipped away as I worked and reworked the words of this poem:

ink flows in my veins
from my dark heart & sparks
ebony soul fire

- Remy Soberanes


#MightyPoets #mightypoetry #ChronicIllness #Depression #ChronicPain #hypermobilityspectrumdisorder #JointHypermobilitySyndrome #EhlersDanlosSyndrome #Fibromyalgia #Migraine #Dysautonomia


No goal too small

"My job is to do what I can to take care of me. Today that meant taking a shower. It may seem small, but it was good enough for me.

Don’t worry about your goals. Don’t compare your goals. No goal is too small."

themighty.com/2017/03/achieving-goals-with-ehlers-danlos-syndrome #EhlersDanlosSyndrome #ChronicIllness #hypermobilityspectrumdisorder