Hi new to eds

[denni1uk]

Hi everyone just wanted to say hi

Was diagnosed with eds I'm always so tired and in awful pain quite a lot of the time can anyone recommend any other pain relief as I'm on morphine and take codeine and paracetamol!! Feel like I'm just existing and not living!

[DISC]

Hi, I have EDS too and have been through so many meds with horrendous side effects and little joy, as we EDSers seems to have a resistance to most things, but a high pain threshold luckily. I take paracetamol throughout the day, and also wear Butrans pain patches which are slow release continual opiate pain relief releasers. It takes the edge off the pain. I also take liquid morphine at night. Nothing really takes the pain away I'm sorry to say, but you will learn strategies, learn when you have reached your limit, know what you can and cannot do, which will result in pain later. Night time is the worst for me, and it is a matter of falling to sleep with exhaustion and getting what sllep you can really, because it means if you wake up, it is pain! EDS is frustraing and mediacl people seem to neglect it, even though conditions such as CFS and Fibro seem to get a lot of attention. I also see the pain management service at my local hospital, which has helped for years, just to talk and work on pacing. However it frustrates me when all the posters are CFS, fibro, arthritis etc but NEVER EDS! Also if you have any surgery, you'll find anaesthetics don't really work at the normal level. I've woken up during many operations to be put under again, despite telling surgeons that i had EDS and would therefore have a resistance to sedation. I have had physio over the years but have found that more painful than helpful. I'm not immobile as I keep active, but physios seems to have little idea of how EDS works or how painful it is. I am always tired and always in pain too like you. TENs machines may help you to relax a little, and I have just invested in a Paingone Plus pen, which does give relief for about 10 mins at a time if you use it in a specific place. The thing which does soothe the most is heat, so heat patches are a godsend. Stick up on them when they are on offre, but the ones which you can attach directly to the skin are best. Also supports. Get an appointmnet with an OT, which may have to be through a physio. OTs will organise suppprts like wrist supports, neck braces, foot supports. I even had a knucle brace made to stop my knucles dislocating when I drive. It is amazing what they can do. I hope this helps. If you have any questions feel free to ask... I also have Gastroparesis as a result of EDS, so do you have any gastro issues... if so feel free to quiz me. Take care!

[Tillyray in reply to DISC]

Hi Disc. Such excellent info on pain relief options!! Thank you!!. It will be of help to many. May I also add that I have used an Actipatch -not really a patch but you do tape it on- which I've found helpful for trapezius muscle pain and aching. Apparently it has been used on race horses 🙂 Very best wishes xx