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Ehlers-Danlos Support UK
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Post Your Top 5 Relief Managing Hacks for EDS/HSD

I was thinking whilst at work today that it might be a good idea for all of us with Hypermobile conditions, to post our own Top 5 methods of pain relief and symptom management. This is intended to be personal, and not be interpreted as a concrete medical aid, but rather to inspire some useful suggestions which you can adapt to your individual problems and requirements.

So I'll get the ball rolling, with my Top 5.....

1. Drinking warm water throughout the day. I do like a good cup of tea, but obviously cannot drink it constantly through the day, so I mix some water from the kettle with some filtered water to drink throughout the day and find this really helps keep my body and brain quite active and alert.

2. Electric Bike - If like me you commute by bicycle or enjoy cycling recreationally, if you are able to do so, then I'd recommend getting yourself an electric bike. It gives you the back up of a motor to do the work when you go uphill, so that you're not overusing your leg muscles, ligaments, tendons etc.

3. Taking 10-20 minutes, around 2/3 times a day to lay down (not a nap) to think and plan what you intend to do over the next few hours or days. I think the act of just closing my eyes helps me to think more clearly, as visual stimulation makes me tired. I get quite a lot of brain fog throughout the day and forget certain things, so this gives me a chance to retrieve those thoughts/plans. Some people would call this meditating but I don't think I'm sophisticated enough to use that word!

4. Making lots of pen and paper notes about appointments and other ideas I have throughout the day. It's almost like a journalists log of quick snippets of information as another means of ensuring that I don't miss anything. I am a creative person as well, and I hate forgetting really good ideas! It can be a notepad or little bits of A4 paper which can be kept in a wallet or purse. I find this method very helpful

5. The Ehlers Danlos YouTube Channel. This is probably second nature to most of the people on here but I can't recommend highly enough how useful the youtube channel is. I've learnt more on here than any other source. Thank you to all the doctors and charity workers for your continued work and also for taking the time to share expert knowledge on EDS/Hypermobility - absolutely priceless!

Those are mine, please feel free to share yours - I'm sure everyone would appreciate your time and suggestions!

All The Best x

9 Replies
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Thanks - a good idea. My 5 are:

1. Electric Reclining armchair - best buy ever. It lifts my legs up and takes the weight off my body, so I can relax straight away.

2. Microwave heated warming bags. 2 minutes in the microwave gives huge relief.

3. Lists and Google calendar to help with brain fog.

4. 'Good grips. gadgets, can openers and cooking items, and a long reach grabber/reacher to help with holding things and picking things up.

5. Sketchers or Hotter shoes to help both support and relief to subluxating ankles and feet.

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1. Pacing activity/giving myself lots of “margin” or “space” in my schedule so I don’t get into a cycle of overdoing and crashing.

2. Google Keep app on my phone

(Electronic post it notes- you can make lists, add links or pictures)

3. Eating a time restricted ketogenic diet. Nutrient dense and anti-inflammatory. Helps keep energy stable and lessens arthritis pain.

4. Taking my meds and supplements regularly.

5. Heat and sunshine. Warm coats and sweaters, gloves and socks for cold weather.

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Hi what is the diet you mention?

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Time restricted eating means eating only in a “window” of time, then fasting for several hours. For example, I eat 2 meals in between noon and 8 pm, then fast from 8 pm until noon the next day. Look on you tube for Dr Satchin Panda.

Ketogenic Diet is a a very low carb diet. I don’t eat any grains and keep my carbs at 20 grams per day. Look at website of Dietdoctor.com

And also the work of Dr Jason Fung.

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Thank you for your reply

And what does this diet seem to help with you ?

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It allows your body to use ketones for fuel. It is anti inflammatory, lessens my arthritis pain, helps to lose weight.

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Great I will have a look at that thank you !

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Brilliant to hear some of your suggestions so far - very interesting mix of ways to bring relief and assistance. Would be great to hear some more, feel free to post your Top 5!

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Here are my 5:

1) portable electrolyte packets (I personally like Dr. Price's Brand as they are sugar-free and have 72 trace minerals) for when you need added salt/boost to get you through the day.

2) Electric Throw Blanket- I am able to do most of my work/activities sitting at a desk and am usually cold, so this helps keep my temp a bit stable.

3) Sugar-Free/Aspartame free hard candies- Helps with dry mouth caused by many medications

4) Ace Bandages/Compression Wraps- Well...you know...holds us together :c)

5) Essential Oils- Therapeutic and comforting to me

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