32 'Hacks' That Can Make Life With Ehlers-Danlos Syndrome Easier


Living with Ehlers-Danlos syndrome (EDS) is no easy feat. You may struggle with intense pain and fatigue, or constantly worry about moving your body in a way that will cause one of your joints to sublux or dislocate. It can also be difficult to find a doctor and/or physiotherapist who is knowledgeable about EDS, and friends who understand the physical and emotional struggles you face every day.

Although there’s not a cure for EDS, some people have developed tricks they use to prevent or manage symptoms. We asked our Mighty community to share some of their “hacks” for making life with Ehlers-Danlos syndrome a bit easier. Maybe some of these ideas will help you live a bit more comfortably, too.

 

Here’s what the community shared with us:

1. “Lots of pillows in bed. I have to prop myself into a certain position or things start subluxing in my sleep.”

2. “Get a good physical therapist. My PT is like a dad to me because he’s been working with me since I was 14. He is such an amazing resource. If I have any questions he figures out answers for me. He calls around to my doctors and does lots of research if he doesn’t know an answer to a question I have. PT has given me the ability to have some normalcy.”

3. “Hot bubble baths! It’s a pain getting out of the bathtub, but sitting in the hot water with bubbles helps with my joint pain, so it’s worth it. I subluxed my hip the other day, so I took a hot bath and the hot water made it feel 10x better!”

4. “I do all my shopping online. No lifting and walking required.”

5. “Facebook EDS support groups. I’m, in a sense, surrounded by people who understand my pain, struggles and worries. It helps just knowing that my feelings are validated by others, rather than being brushed off. It gives me the emotional strength to keep fighting and spreading awareness.”

6. “I shower at night before sleeping. Otherwise I’m way too worn out to make it through the day.”

7. “I keep a trash bag in my car so on the days when my vertebra are misaligned, I can put the trash bag on my car seat and sit on it to swivel in and out of my car easier.”

8. “Always carry an emergency kit. I always have a pair crutches in the car, and an extra set of medications on me. I also always have an extra set of chargers and my medication list with a protocol letter with me. EDS is unpredictable, so I’m always prepared for Murphy’s law.”

9. “I sit down when I get too tired. I also take naps often when I need to.”

10. “I do progressive muscle relaxation for when I’m way too stressed or have insomnia.”

11. “Cheap memory foam insoles for your shoes. Try to wear flats or something with a heavy sole. Anything with even a slight heel is hell for me. Shoes that cover the ankle are more supportive – even just Converse.”

12. “Thermal leggings. They act like compression leggings and a heat pad in one – a must for the winter or a bad flare.”

13. “I use voice dictation software to write papers more easily and save my fingers some typing.”

 

14. “I drink a full glass of water right after waking up and before bed so it helps regulate my heart rate.”

15. “My pets. They never judge or make me feel broken. They just love me as I am. They help keep my mood positive on the days where everything hurts and I can’t do anything.”

16. “I’m a songwriter and Ehlers-Danlos has made it quite difficult to play guitar. A few months ago, I invested in some finger splints to help with dislocations. They are super helpful and make using my fingers less painful. My handwriting has also improved dramatically.”

 

17. “A rolling laundry basket so I don’t have to carry heavy baskets around. I use this for many things beside laundry.”

18. “I use a bar stool at the sink for when I am unable to stand to wash dishes. I also have a TV tray stand that I use when I’m in a wheelchair and can’t reach the counters so I can prep and still do some cooking.”

19. “Having a pillow right next to my home office chair so I can lean over the table and rest when it feels like I’m going to pass out from overwhelming tiredness.”

20. “I have found easy hairstyles such as a wearing my hair in a cute bun because I just can’t do my hair every day. It’s too much on my joints.”

21. “I always keep a ‘pharmacy bag’ with me that has my allergy medicine, painkillers, an emergency inhaler, a fan, etc. and it has come in handy so many times. I also always keep my knee supports and an Ace bandage with me because more times than not, I find myself needing them to be able to walk.”

22. “I use a brush to do dishes instead of a sponge because scrubbing with a sponge makes my fingers hyperextend.”

23. “I use my heating pad or ice packs whenever possible as a natural way to relieve pain. My headache hat and my heating pad are my best friends!”

24. “I have vascular EDS and heat causes serious problems. I use cooling cloths, infusion cups to make sure I get plenty of water with fresh fruit, get groceries in the evenings when it’s cooler and stay indoors during the hottest parts of the day.”

25. “Going to a pain doctor that understands. It took me, as a 23-year-old, a year and a half to find a pain clinic that didn’t discriminate against a young girl like me, that understood my pain disorders and my needs.”

26. “Ultra Strength Bengay cream is my best friend. I use it practically all over and it feels amazing.”

27. “Comfy clothes and pajamas. I can’t stand certain fabrics touching me so the material is the most important thing in clothes.”

28. “I keep my house clutter-free. No knick-knacks lying around to trip and fall over since I do that enough on flat ground.”

29. “I take a muscle relaxer every night. It helps me by giving the muscles around my joints a rest. Then I use braces and KT tape when the pain really flares up.”

30. “Buy bags of frozen prepped vegetables. For example, I buy frozen chopped peppers and onions. I know you can get all sorts of other stuff too, like garlic, ginger and even sauces. But for me, just having that main bit of prep done helps a lot.”

31. “If I have to go to the emergency room, I now take my pillow with me because I know I’ll be there for a few hours at least and want to be as comfortable as possible.”

32. “Friends who make the effort to understand! One of the nicest things anyone has said to me was, ‘I Googled EDS last night. It sounds really tough! How are you doing?’ Small gesture, but meant the world to me.”

32 'Hacks' That Can Make Life With Ehlers-Danlos Syndrome Easier
TOPICS
, Listicle
JOIN THE CONVERSATION

Related to Ehlers-Danlos Syndrome

two friends lying on the beach and talking

To the Friend or Family Member Who Doesn't Understand My Illness

It has been 13 years since my symptoms began to manifest and five years since the first of my five diagnoses. Some have you have been with me and supportive from the very beginning, some of you waited until I began receiving diagnoses to acknowledge there is something wrong, some of you have only known [...]
mother and daughter sitting on a bed and playing games

To My Future Baby, Who Might Inherit My Chronic Condition

Dear baby, I know you must question why I decided to have you when there was a chance of passing along my disease. The truth is, every inch of my body wanted you so badly I saw no other option. And your dad – wow, your dad was so supportive and reassuring. He wanted you too, [...]
blue drawing of a woman crying

It's OK to Have Teary Days When You Live With Chronic Illness

It’s taken a long, long time to realize this. 34 years, in fact. But I’ve finally realized that when living with hypermobile Ehlers-Danlos syndrome (hEDS), chronic pain and mental illness… It is OK to have a day, or week, or month where all you do is cry. I’m having a teary day today. Hormones are flying around, [...]
woman falling in a field

When Gravity 'Brings Me Down' Due to My Ehlers-Danlos Syndrome

A little over a year ago, I was struggling up the stairs at my twin sister’s place. Stairs are an obstacle I tend to avoid, and there are many days where it is simply impossible for me to climb them. With my dizziness and depth perception issues, it is hard for me to know where [...]