Ehlers-Danlos syndrome: tips for the newly-diagnosed

Vonne Reeves on her basic basics for EDS newbies
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When I was 19, something went wrong with my health. Suddenly I felt like I was a different person. I was so tired and full of aches and pains, all I could do was rest. I was told I was lazy over and over again, but I really wanted to work and be normal: I had plans just like everybody else. So I kept pushing, and breaking myself. And finally, a full decade after first becoming ill, I got diagnosed with Ehlers-Danlos Syndrome, or EDS.

Unfortunately, diagnosis hasn’t made a huge difference to my life yet. My GP still doesn’t really seem to believe me, I’ve been waiting eight months for my first physiotherapy appointment, and there’s so much information online about EDS that it’s a bit overwhelming. Eventually, I managed to cobble together this list, which for me are the absolute basics that I can do to make my life a little easier. I hope it will help someone else who’s newly diagnosed and struggling.

1. Get some supports

For me, knee, elbow, foot, hand and wrist supports are a must. It seems every EDS sufferer has a particular joint that burdens them the most, for me it’s my knees. I’m barely without my knee supports anymore, and can’t walk very far without them. Supports are usually hidden away somewhere in stores like Tesco, Boots, Superdrug, sports stores – and of course online.

2. Take vitamins

Vitamin D was recommended to me because Ehlers-Danlos Syndrome sufferers apparently aren’t great at soaking this up and our immune systems are pretty rubbish. I’d had an annoying and ongoing cold for over a year before I started using vitamin D spray (the spray seems to be the best way to get vitamin D into me). Other than this I take multivitamins, vitamin C, etc. just to keep on top of things

3. Invest in a lap pad

This is great for me when my supports are getting itchy and I’m not getting up today. I keep my weighted lap pads on my knees or hips usually, and they’re more portable than a weighted blanket. There are some great ones on Etsy that aren’t that depressing hospital beige colour.

4. A weighted blanket is the most worthwhile thing I ever bought

Weighted blankets are expensive, but in my opinion they’re absolutely worth it. Probably the most worth it thing in my whole life. My blanket stops me moving around so much when I sleep, so I can sleep on time, I can sleep the whole night through, and I’m far less tired when I wake up. I can finally recharge my body the entire night due to the pressure. Remember when getting a weighted blanket to buy one that’s 10 per cent of your body weight.

5. CBD products for Ehlers-Danlos syndrome

I’ve personally found CBD products really helpful for pain relief and the anxiety that pain causes me. CBD oil, cream, body wash – I use all of them. It doesn’t take pain away, but it definitely takes the edge off.

6. Accessible pens

Turns out I can’t hold a pen anymore without it hurting me and setting me back a week or so. As an artist and a general scribbler, this kills me. Luckily for me there are more accessible pen grips and pens out there. I’ve tried a few grips, none of which I have taken to, except for the PenAgain Y-shaped pens, which also come in a pencil version and with refills. They’re very weird to use at first but it doesn’t take long to feel comfortable with them, not to mention that my handwriting is the best it’s ever been.

7. Salt

Constant thirst? Frequent urination? Forever bloated? I haven’t actually seen this online, so maybe it’s worth mentioning: Himalayan pink rock salt. My doctor mentioned this to me and it’s worked. Ehlers-Danlos syndrome muscles and tendons apparently aren’t great at soaking up electrolytes, so I’ve been thirsty my whole life. I just put enough salt in every drink (not to taste it) and it’s one less thing to worry about.

8. Walking stick

Maybe your legs are weak, or maybe, like me, you often randomly twist your knees or have one pop out of the socket (still grosses me out) and it takes a few days to heal just enough to walk. I recently bought a walking stick to just help to get around the house, otherwise I’d be slowly and painfully dragging myself around. I also found out that walking sticks are actually surprisingly cheap (thank god, because being disabled is stupidly expensive).

9. Hot water bottle

This is probably the last thing I bought to help with the pain and I regret not getting one sooner. When I’ve injured myself, this makes the healing process MUCH quicker. Heat is a must for sore muscles of any type.

10. When you have Ehlers-Danlos syndrome, it’s OK to lean on everything!

You probably do this already, but I tried not to in an attempt to ‘look normal’, and everything started to fall apart for me. My pain and bad moods were at an all-time high and it just wasn’t worth it. So don’t forget to put your feet up, lean on walls, take a seat whenever possible and lean back in your chair. Extra points for giving the room a casual vibe.

There’s a lot more to EDS than this – and please seek medical help if you suspect EDS but don’t have a diagnosis yet. But these are the most basic basics that I have found that have worked as I’ve tested a lot of products in a short period of time.

5 thoughts on “Ehlers-Danlos syndrome: tips for the newly-diagnosed

  1. Hello please could you let me know where you bought your weighted blanket from? Thanks

  2. Hi there! We asked Vonne and her response is: “I suppose I use a lap pad on my knees the same way, I wore compression supports on them. but it gave me a break from having to wear them all the time, so I just had a lap pad when I was laying down. Although I don’t use a lap pad anymore as I’ve strengthened my knees up with exercise over time. The lap pad just gave my knees a break and just feels particularly relieving.” Hope that helps!

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