13 of the Most Surprising Things That Helped People With Ehlers-Danlos Syndrome
When it comes to coping with Ehlers-Danlos syndrome, there are a few strategies you’ve likely heard a few times, like using braces on unstable joints, perhaps some pain medication, physical therapy, and not performing “tricks.” But EDS is still often misunderstood by medical professionals, who may not have tons of coping suggestions to share with you. You might feel left to your own devices to figure out what helps you, and find that some things you would never have thought of are actually really useful.
• What Is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?
There’s no one better to ask about coping with EDS than fellow EDS-ers, so we asked our Mighty community to share the most surprising thing they found that helps them. They shared an amazing array of ideas, from practical items that help decrease pain to the mindset they’ve adopted that keeps their spirits up. Check out their recommendations below, and be sure to let us know in the comments what you would add.
Here’s what our community shared with us:
1. Body Pillow
“A full body pillow. I was skeptical as to how much use it would be but it’s been worth every penny,” Erika D. said.
“Using a reading pillow to sleep — it prevents my arms from subluxing and/or dislocating like they do when I try to get into a comfortable position with my arm under the pillow,” Ashley P. said.
For more pillow recommendations, check out these 27 comfortable pillows that help people with chronic pain sleep better.
2. Support Groups
“Going to a support group for people with chronic pain conditions. I’m the only one there with EDS but the people there are like my extended family and just knowing I’m not alone is really helpful. I also met my now-fiance there,” Sophie L. said.
“The online community!” Lauren R. said.
“Going to the support groups the Hypermobility Syndromes Association (HMSA) runs,” Chaz Lote said.
Find a support group by visiting the Ehlers-Danlos Society website or the HMSA website.
3. CBD Products
“CBD oil. Helps control my pain when no other pharmacy med could help me. Gave me a new life,” Brooke R. said.
Check out 15 CBD Products People With Chronic Pain Swear By.
4. Supportive Recliner Chair
“My Lay-Z-Boy supports my hips, so no subluxing SI joint just from sitting down. When reclined I’m in zero gravity position. Has handle so I don’t have to struggle to put the leg rest down. My neck is nicely supported with this model as many chairs throw my head forward. When reclining it supports my lumbar region. I can easily sleep in it if I have to i.e. when I’m too sore in bed or if have to be more upright to breathe. Also great for doing crafts in,” Louise M. recommended.
Recliner from Home Depot
5. Family and Friends
“My husband and my family. They are as supportive as they come,” Lia M. said.
“My family. Almost none of my [biological] family is involved anymore but my family I have from work, and extended in-laws are amazing. They keep me going, exploring the world, yet helping me take care of myself as well,” Shelby S. said.
6. Exercise
“Interestingly enough? Going to the gym. I know that when I say this, I’m usually met with a lot of criticism. But, well, for me, light weightlifting and low impact cardio help, well… everything. It keeps my muscles in shape, which in turn helps hold my joints in place better. The cardio helps with my tachycardia because it’s helped me lower my resting heart rate. It keeps my weight down, which is easier on my joints, and it just makes me feel good,” Kaye E. explained.
“Exercise! I have to keep moving or I seize up, just keep moving no matter what or it just gets worse,” Victoria P. agreed.
7. Compression Socks
“Compression stockings. I thought they were for old ladies, but I found cute ones on Amazon and they help with the blood pooling in my feet!” Taylor M. said.
8. Being Open About EDS
“Being open about my condition(s)… It seems to get people around me to understand why I do what I do and why it is ‘almost always something new thing that is wrong with me’… At least they know it is not just in my head, I am not making things up and my body is just really weird…”Aili S. said.
9. Service Dog or Emotional Support Animal
“My dog. He always knows when I’m not feeling well and will alert me before I pass out. He always knows how to cheer me up and is always there for me no matter what. EDS can be so isolating at times but with him I’m never alone. I rescued him not long ago, but the truth is he’s rescued me and I am forever grateful to have him in my life,” Amelia C. said.
10. Comfort Items
“My prayer beads and hot tea keep me going. When I’m stressed or hurting, they help me center myself and feel peace. I’ve learned that treating myself with radical acceptance and kindness helps me stay calm and keeps my pain from getting worse,” Sarah A. explained.
Prayer beads and worry stone from Etsy
11. Smart Home Technology
“Our Google Assistants. We have one in nearly every room so I can ask for help even if there’s no one near me. I can also set reminders on it, listen to music and podcasts,” Lidia M said.
For a review of smart home devices, check out this list of smart home devices that make the perfect gift for someone with a disability or illness.
12. Heating Products
“My rice heating pad I make. And being around my grandkids. They make me forget or not feel as much of the pain,” Donna G. said.
“Heated blanket/heating pads,” Ella C. recommended.
Rice heating pad | Electric blanket
13. Accepting EDS and Continuing to Live Life as Best You Can
“Accepting that I can’t change the fact that I have EDS. Embracing that it makes me different and that is OK. I have learned to adapt to the world around and survive. I love life and that’s what matters,” Melissa B. explained.
“Making the effort to live life and accept what is has absolutely made my life so much more enjoyable and less like a job. I always make sure I have at least one thing a month to look forward to, sometimes I have to miss them if I’m too poorly, but I enjoy life in my own adapted way by going to concerts, festivals and more… disabled facilities are gradually improving and a trip out will always lift my spirits and make life worth living despite the after pain,” Toni W. said.
Erin is the former senior editor and chronic illness editor of The Mighty. She joined The Mighty in 2015 and previously worked at Inside Weddings magazine, Mic, and The Huffington Post. She was also the features editor at The California Aggie, UC Davis' student newspaper. She is honored to be a part of the Mighty community!
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