Crazy Cures for EDS

I’ve been offered some lovely advice from people who care deeply since my Ehlers Danlos diagnosis. However, these cures and treatments have stacked up an I’ve decided to compile a list of everything I’ve been recommended in no particular order.

This list probably won’t stop growing until I’m done blogging.

Flight socks
Really sexy. Although, this one does help a bit with the potsy stuff. The theory I that wearing flight socks stops the blood pooling in your legs. Suffice to say, the black socks look better. edit: a few months down the line and they do indeed help with both dizziness & mahoosive swelling of feet

Bee Sting Therapy
Oh yes, you heard me right. This is the idea that by pissing bees off and getting them to sting you will somehow make your joints stop aching. This has something to do with botox I think rather than fun with anaphylaxis.

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Drinking Collagen
This was a suggestion from my sister-in-law, (who may as well be my rral sister) and I can totally see her perfectly logical link. Ehlers danlos is a connective tissue disorder and is linked to a genetic mutation with collagen. Rather than a lack of collagen, I’m just a mutant.
Also, the collagen in these drinks is made from the ground down bones and cartilage. Ew.

Heat
If there’s any one thing that’s more effective for my joints than any narcotic it’s heat. For years I’ve used a variety of heat sources all of which are beneficial in different ways.

Hot water bottle – longevity. Nice to cuddle. Risk of scalding.

Homemade barley microwave bags – ready in 2 minutes. Last 30 minutes. Smell nice. Weighty on shoulders (that can be nice). Refillable when they get old. Need to be near to a microwave.

One use heat pads – discreet. Sticks to my skin. Lasts for 6-8 hours. Not very warm. Terrible for the environment.

Electric Blanket – someone on my local EDS Facebook page suggested this as she used it for her daughter. It’s incredible. When I was a teenager,  I used to lay in the sun reading just to feel the warmth of the sun on my skin. It made the “growing pains” go away. This is a similar feeling – lay on the blanket and feel the knots & spasms in my muscles melt like chocolate.

Praying – If that’s your thing, then that’s great for you. But it’s not my thing. Please don’t lay your hands on me. I’m still pretty pissed that your God (whichever that one may be) laid this at my door.

Chiropractors – I spend every day trying to stop my bones from coming apart. Why pay someone to do it for me?
See also osteopathy.

Massage – it works. Specifically myofacial release. This isn’t namby pamby rub it better stuff.  This is find that knot and squeeze or push it until it releases.

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Because my ligaments are shot,  my muscles take up the slack, but them my muscles go on strike too and I end up in a horrible tense twitching mess. Only Mr Geek manages to do this successfully  (and daily ) because he just knows where it hurts and how much. If anyone gets to do the laing on of hands, it’s him.

It hurts, but he can diffuse a migraine in 15 minutes. The man is a magician.

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TENS
This is one of my favourite ways to get through the day. Seriously, who’s going to argue with the teacher intentionally electrocuting themselves?!
Also, it works. Oh good God sweet pain relief for all the time the electricity is bubbling through my body…. it’s meant to carry on working for up to 4 hours after. Ehh not so much.
I’ve written about my love of TENS here
… and here

EMS
This is similar to TENS (same machine!), but instead of settings for pain relief, this is all about stimulation of the muscles. Imagine the benefits of weight lifting, but without the dislocated limbs…. cool eh? This also Stimulates blood flow to the muscles and helps break down knots.
Downside, you have to sit around visibly twitching which is a bit disconcerting to other people.
DO NOT DRINK TEA whilst using EMS on your shoulders…. just don’t.