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13 of the Most Surprising Things That Helped People With Ehlers-Danlos Syndrome

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Editor's Note

We hope the products below, all recommended by our Mighty community members, help you or a loved one in your health journeys. Just so you know, The Mighty may collect a share of sales from the Amazon links on this page. Prices and product availability are accurate as of publication.

Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

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

body pillow and husband pillow

“A full body pillow. I was skeptical as to how much use it would be but it’s been worth every penny,” Erika Davies-Budgen said.

“Using a husband 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 Payne said.

Buy the pillows featured above for $69.99 (left) and $27.99 (right) from Amazon.

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 Louise said.

“The online community!” Lauren Rutely 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 tincture

“CBD oil. Helps control my pain when no other pharmacy med could help me. Gave me a new life,” Brooke Reuter said.

Buy the CBD oil featured above for $159.99 from Sweet Leaf Relief a& Wellness.

4. Supportive Recliner Chair

black leather 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 Mace-Brown recommended.

Buy the recliner featured above [note: not the chair described] for $382.32 from The Home Depot.

5. Family and Friends

“My husband and my family. They are as supportive as they come,” Lia Madsen said.

“My family. Almost none of my blood 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 Alexis Slattery said.

6. Exercise

running shoe and treadmill pic

“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 Edwards explained.

“Exercise! I have to keep moving or I seize up, just keep moving no matter what or it just gets worse,” Victoria Payne agreed.

Buy the shoes featured above for $110 from Amazon and gym membership starting at $29.99/month from 24 Hour Fitness.

7. Compression Socks

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 May said.

Buy the socks featured above for $19.98 from Amazon.

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 Kirste Strømeng said.

9. Service Dog or Emotional Support Animal

dog bed and cat tree

“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 Castleton said.

Buy the pet bed featured above for $13.99 from Chewy and cat tree featured above for £34.99 from Amazon UK

10. Comfort Items

prayer beads and worry stone

“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 Allison explained.

Buy the prayer beads featured above for $28.71 and worry stone featured above for $2.99 from Etsy. 

11. Smart Home Technology

google assistant and echo dot

“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 Katalin Malone.

Buy the Google Home Mini for $49 from Google Store and Echo Dot for $49.99 from Amazon.

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

heating pack and electric blanket

“My rice heating pad I make. And being around my grandkids. They make me forget or not feel as much of the pain,” Donna Clendenin Grote said.

Heated blanket/heating pads,” Ella Cates recommended.

Buy the rice heating pad featured above for $14.99 from Amazon and electric blanket featured above for $28.96 from Walmart.

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 Anne Burnett 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 Wootton said.

Originally published: November 15, 2018
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