By LisaDobecki on Thursday, April 18, 2002 - 04:29 am:

Hi my name is Lisa and My daughter and I both have EDS Type III...she ws diagnosed first. I now have problems with both my knees and ankles and hips ..... What do I do to get the relief I so desperately need when it comes to this condition? What info or specialist do I have to see before I lose my mind from the pain???!!! Any suggestions out there?

By Michelle on Thursday, April 18, 2002 - 02:51 pm:

I have just been diagnosed with EDS 3 after being fobbed off for 12 years, I know exactly what you mean about trying to get pain meds. The way I get mine is a bit underhand and I would only suggest that you try it as a very last option!

I tell my GP(I'm in England) that my specialist has suggested a few pain meds, and which does he/she think would be the best to try first. In my experience not one of my GPs have ever double checked, it is not the sort of thing that a specialist would ever put in a letter to a GP (I used to be a medico-legal secretary). I know this seems really underhand and it's probably not the best way to go about it, but it is the only way that I have managed to get the meds that I need to enable me to get by at work every day.

Lay it on as much as possible and say that it's making it nearly impossible for you to work and that the pain is very debilitating. Find out as much as you can about pain meds so that if you do decide to follow my underhand way of doing things (which I would only suggest if it really is your VERY LAST OPTION) so that you are not saying ones that are too strong or that would not be suitable.

I am on cocadamol, and also have sodium diclofenac for inflamations (it's a pain med as well as an anti-inflamatory). I do use the diclofenac very sparingly as it can do a lot of damage to your stomach and kidneys if used too often.

If at all possible though, I would just say ignore the looks from your dr and refuse to leave the surgery until you get stronger pain meds. This is the best suggestion that I have, sorry I probably haven't been much help.

Good Luck and God Bless
Love Michelle