Pain: What does everyone take for pain... - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK

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Elishaannxx profile image
4 Replies

What does everyone take for pain wise, my pain is just too much all I’m on is paracetamol as not much I can take due to allergy’s, I’m seeing another pain management to see if I can have anything stronger I’m really struggling! Also having surgery on the 5th may on my finger due to my finger constantly been dislocated I had surgery on it last year but it didn’t work so I’m having to have another 😫 any one suggest anything for pain wise? TIA xx

4 Replies
cyberbarn profile image

Hi, Like you I can't take anything other than paracetamol. I take it you know that it works best if you take it all the time rather than just the occasional dose? My podiatric surgeon said that when he first started training they were told that patients should start taking the paracetamol the day before surgery rather than after surgery. then that was quietly dropped but it was now being taught again.

As for the surgery, it is the surgeon's responsibility to make sure you have adequate pain relief, but again, I hope you know about icing? When I had my food done the first it was 10 minutes every hour but a few years later it changed to 15 minutes every 2 hours, and some protocols are four times a day. Hopefully the surgeon will talk about that.

As for anything stronger, with my first foot surgery I had complications that were really painful, and I found the best thing was watching the box set of Green Wing (a comedy that is set in a hospital, but don't worry, there are no patients in it! I found that laughing with my son while watching took the pain away, because my brain couldn't concentrate on the really funny visuals, the slick dialogue, the jokes, and my pain at the same time. And there is good evidence for laughter releasing endorphins which are nature's natural pain killers.

I hope the surgery goes really well this time!

Elishaannxx profile image
Elishaannxx in reply to cyberbarn

Hi, thank you so much, yeah I have paracetamol all the time and the pain was just me asking in general was separate to my operation, I’m struggling with pain I have done for a while but like there’s not much I can have I’m waiting to see a pain management for the 2nd time to see if we can come up with a plan urgh it’s a nightmare isn’t it xx

cyberbarn profile image
cyberbarn in reply to Elishaannxx

Yep, its a pain to be in pain! I have just had to accept that this is my life. Mind you, I have my grandmother to look up to. It is likely that she had EDS (she died in 1996 at age 96) but she was diagnosed with severe osteoarthritis. She didn't take painkillers, but she always went for walks. They were shorter as she got older, but every day she would put on her pedometer (one of those mechanical ones like a watch, that you pinned to your stockings!) and go for a walk. This was in Canada and when she moved to a sheltered apartment she measured out the length of the single room she was in, figured out how many times she had to walk it to make a mile, put the TV on and walk up and down, especially in winter when it was too dangerous to walk outside. She also kept knitting, much more slowly than when she was younger, but she kept doing. I am determined to be like my grandmother and not let the pain rule me!

delli profile image

I have found CBD Oil to be helpful with my joint pain. I rub a couple of drops into my gums & palette a couple of times a day. I use Jacob Hooy brand as other brands I've used haven't been great. You can get it online from Holland & Barret

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