Kona

EDS - daily pain (a bit of a rant)

3 posts in this topic

I have recently been diagnosed with Joint Hypermobillity Syndrome (JHS) / Ehlers-Danlos Syndrome (EDS).

I've had my joint pain for the best part of 3 years and I've just put up with it. I've taken co-codamol when very bad, which seems to be daily recently - it doesn't help an awful lot. The pain is worse in my knees but also I've done something to my foot recently which means I've been debating bringing out my crutches. This injury (although IDK if it is that or my joints fault) is nearly 2 months old now and not getting better.

Anyway - is there a solution to the daily joint pain I experience? It comes and goes, seems to get worse later in the day. But when I walk, oh god, it gets about a 7/8 out of 10 on the pain scale... 10 being agony. So you can imagine I put off walking, I also do not drive.. I often have to push through this 7/8 level pain just to get to appointments. Too much exercise makes it worse, too long sitting in one position makes it worse... I feel a bit stuck.

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Kona, I know there are at least two people on here with EDS, and there are probably more. I can't remember specifically who they are, but one person I'm pretty sure has it is on a break right now. He actually does karate, and other physical activities. I'm trying to think of where your post can be better seen, but right now, this is probably it. My post will bump the thread, at least.

Look at "NOS" and see if that might be a better location. More people read that than this forum. Also, just a suggestion, but if you start a new thread, you should probably spell out Ehlers-Danlos Syndrome, because you never know who might not recognize the initials.

If you just wanted to rant, sorry for going on and on.

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I don't have JHS or EDS but I do have Rheumatoid Arthritis so I'm very familiar with excruciating joint pain. Like you, too little movement or too much movement kills me. I try as much as possible to balance activities and rest but know it's not a huge help or always possible. :/ I use ice packs sometimes to numb my joints for a bit of temporary relief. I have a lot of trouble with my knees too. It sucks. Wish I had some better advice for you....  being that I don't know much about either of your conditions I don't know if physical therapy would benefit them? I don't know if medical marijuana would be an option/ available to you if you wanted to explore it but it did help me some when I had access to it.

I don't know what you've tried already.. so disregard whatever above. Mostly I just wanted to say I can empathize with you and your situation... chronic pain and illnesses really suck. 

Hope you can find some new ways to help minimize your pain. Good luck and best wishes to you, Kona.

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