EDSers United



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Getting Dressed

  • Use a long-handled shoehorn when putting on shoes. Avoid shoes with laces or buckles

Staying Active (Avoiding Atrophy)

  • Work up a sweat, without over-exerting yourself. Exercise is one concrete step you can take that will yield life-changing results. That endorphin rush boosts your mood and lessens your stress, and it offers long-term health benefits, including better bone health. It is important to not over-exert yourself, if you're an EDSer, during your workout. Know your limitations, start out slow, and assign a time-slot for strengthening exercises to your weekly schedule. It is a known fact that working out in the pool is highly recommended for EDSers looking to strengthen their aching bodies. Locate the nearest YMCA, and pick up a pool schedule. You may even want to become a member if it suites your budget.
  • Utilize your smartphone to count how many steps you take within your day. Most apps will convert these steps into how many calories you have burned (which can help you manage weight loss/gain if that is a concern of yours). Most EDSers will begin to notice after a certain amount of steps (on average ~5000 steps per day), the pain levels will be significantly increased the following day. Utilize this information to manage your week. If you know that you have to make sure you are strong enough to get through a certain activity on a specific day (i.e. family BBQ) then make sure to not over due it the previous day by managing how many steps you take with your smart phone pedometer. Many apps will (like the S Health Android App) will allow you to set up notifications when you are half way to your "goal." Of course, as an EDSer, you don't want to accomplish your goal if you plan on being active the following day.

In the Kitchen

  • Always have a pair of rubber gloves around in order to help you generate a grip to open tight containers.
  • Sharp Scissors are the most useful thing you can use in order to open bags when you are not strong enough (or in too much pain) to pull them open. You can also use sharp culinary knives to cut meat instead of using knives. 

In the Bedroom

  • Use orthopedic pillows when you sleep. They're designed for every part of the body and many people swear by them. Dry yourself after a bath using small lightweight towels. They're easier to handle.
  • Use a wooden spatula to tuck in bedsheets
  • Embrace blue light. We all agree that fluorescent lights are depressing. But even your standard incandescents could use a makeover. Try swapping your basic light bulb with a blue bulb. It's a calming color. Another good option to try is full-spectrum bulbs. They expose you to wavelengths of light you might to be missing if you don't get outside much. You'll have more energy and sleep better too.
  • I love my Yogibo! I traded my bed in for it. I can mold it to whatever position I need and provide support to the parts of my body that are the most painful. I suggest Yogibo become a Gotta-Hav-Able. Check them out at www.yogibo.com.

Managing Emotional Positivity

  • Go easy on yourself. In the course of a day, you could do 100 things right and screw up one. Yet if you're like most people, you probably can't stop kicking yourself for the single slip-up. Remind yourself every day that making mistakes is a part of being human, and recite to yourself a positive affirmation. For example, "I'm a strong and capable person who sees setbacks as opportunities. I am a SurFighter." To help reduce the pressure of comparing yourself to others, keep in mind that being a success is doing your best, not being the best. 
  • Surround yourself with upbeat people. If you spend a lot of time with folks who continually gripe and complain, your own outlook will sour too. Think of those friends as crabs in a bucket; they're pulling each other down, and you along with them. Seek out ones who share your commitment to happiness, and distance yourself from the 'Debbie Downers.' What if you are the "Debbie Downer' of your group? Being in chronic pain, doesn't mean you have a pass to continuously gripe 24/7. Of course this is easier said than done. When you are in pain and nothing seems to even touch the high intensity of it, the last thing on your mind is "Don't complain!" You are thinking, "THIS SUCKS!" You are human and you are allowed to gripe and complain. Just make sure it isn't a 24/7 thing. The pain may be 24/7 but you're going to find yourself deeply depressed and possibly suicidal if you don't get a hold of your constantly negative mindset. Review and practice the suggested ways to increase your joy quotient and find yourself being more positive and ultimately more tolerant of your life as a survivor.
  • Take control of what you can and look for the silver lining when you cannot. Change some of the tasks that cause you anxiety. If your house is messy, arrange a sit-down with your partner and kids and divvy up the chores. If your stress is coming from something that's harder to eliminate (for instance, your ability to help to care for an ill child), challenge yourself to see the matter differently. Take a deep breath and find the good in a less-than-perfect situation. Invest in your family, especially your romantic relationships. When you're unhappy and stressed out, the people around you suffer too, and the gradual deterioration of the situation can leave you feeling under-appreciated and alone. Just knowing that you have a supportive partner can help you weather the bad times, so make sure that you reconnect every day with loved ones, and plan a few regular, longer "just us" get togethers as well.
  • Greet the world with a smile. Everyone is carrying some sort of burden. Although you might not be able to erase someone's pain, stress, or grief, you can make that person feel a little happier just in how the two of you interact. And when friendliness is a habit, you attract kindness in return.  
  • Show gratitude. Think of three things you're thankful for every night and reflect on them. Research shows that appreciative people are 25 percent healthier than those who aren't.
  • ‚ÄčListen to classical music and movie soundtracks in order to calm your mind 


  • Re-usable Heating packs - these heating packs are great because you can take them on the go, click the coin inside the pack and instantly have a heating pad ready to calm your muscles. When you get back home, all you need to do is boil it back to it's liquid state and it's ready to go again. 
  • Folding Cane - many EDSers need assistive walking devices, like canes, after a bad dislocation that didn't slip back in as easily and  is now throbbing and making walking difficult and painful. Many of us should be using canes to prevent dislocations, but sometimes the younger EDSers feel a tad bit more stable and able to walk without the guidance of a cane. Either way, a folding cane is something we all should have available in reach, just in case.  
  • ACUMAT - doesn't look comfy, but believe it or not, a few minutes spent lying on the prickly mat is designed to make you feel good. "The sharp prongs strike a balance between pain and pleasure. These 'hedonic points' activate the production of endorphins and oxytocin, hormones that can ease discomfort and give you a sense of physical well-being." 
  • Disability Products - Disabled World provides a host of assistive devices and products that can help with daily tasks. 
  • Products for the Disabled - Special Needs Solutions provides a host of assistive devices and products that can help with daily activities and tasks.
  • Products for Independent Living - MaxiAids provides a host of assistive devices and products that can help with daily tasks.
  • Deep Blue Rub - this rub provides soothing benefits for sore, aching muscles and strains.  Many EDSers, and non-EDSers with RLS, Fibromyalgia, and neurodegenerative disorders, utilize this rub every night in order to ease neuropathic and muscle pain to allow for a long nights rest. This item is a doTerra Product. Although this product is available at EDSers United's gift shop, you will also be able to find the Deep Blue Rub and many other wonderful products at www.mydoterra.com/edsersunited. All proceeds from your final purchase will benefit EDSers United Foundation.

Have any tips that you'd like to share?

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Tips For EDSers By EDSers

Many of us have come up with ways to make accomplishing daily tasks easier and less painful. If you use a product/item, and/or have a useful tip for the community that is not already listed, please feel free to contact us and we will add your tip to this site for the community to utilize. 

Social Etiquette 

  • If your EDS affects your fingers, hands or wrists, and you would prefer to avoid shaking hands, try this tip. When you find yourself in a situation that may require a hand shake, use it as an opportunity to casually educate another individual about EDS. Who knows? You may gain a hug and a new friend. 

On the Road

  • Place a silk scarf on the seat of your car so you can easily swivel in or out of it. If you can't find a silk scarf, visit your local fabric store and purchase a yard of silk to pin down to your car seat.
  • Practice belly breathing. Inhaling and exhaling fully from down in your diaphragm increases the amount of oxygen that goes to your brain, calming your mind. Inhale deeply through your nose, expanding your stomach rather than your chest. Hold your breath for 5 seconds, feeling your tummy contract. Repeat this breathing exercise when traffic comes to a halt.
  • Use extra time in the car to release neck tension while strengthening your chest, shoulders, triceps and abs. Sit up straight with your shoulders down and your neck erect. Grasping the steering wheel firmly, press it as if you were trying to push forward an away from you (for hypermobile EDSers, elbows should be bent in order to prevent accidentally hyperflexing). Hold for 10 second; release. Repeat 5 times, breathing regularly.