Hi katymac. We have an EDS and Hypermobility thread which runs on special needs children. Many of the mums on the thread have either EDS or HMS too, and so although we often talk about our dc, we are there to support each other too. Please come and join us.
I have EDS Ehlers Danlos Syndrome Hypermobile type, as does my ds. I was dx when I was 18 as having HMS, and then the dx was altered to EDS in my early 20's. Many specialists think that HMS is just a milder form of EDS, so I know exactly what you are going through and exactly how you feel. I too was dx with cfs when I was 17 years old, and one dr tried a dx of fibro, but all that has been swept away by the eds dx, those just being symptoms of the main condition. I was first given naproxen and paracetamol. They didn't stop the pain, and eventually I developed an anaphalatic allergy to all NSAIDs (asprin, naproxen ibruprohen etc). Now I manage with codeine, physio, keeping active and getting on with it. It isn't easy, it never is. My superb consultant said, pain is a message, don't keep going if something hurts, stop. This is what I live by, and it has served me well. I have had this for over 20 years now, I have 3 dc, one with eds, I had miscarriages, very fast deliveries, completely shot pelvic floor. I have lost a disc in my back, have degeneration in many joints, but I still work a 3 acre smallholding, raise three dc, and have lots of fun. I don't think it is unreasonable to not expect to see the rheumatologist again on the condition that if the drugs are not working you can get back there quickly, and if anything changes you can get back there again. Usually a referral lasts for 6 months after you have been seen, so ring up rheum and make another appointment if you need drug guidance, or you think physio may help. Otherwise if you go beyond the 6 months your gp can re-referral. Please come and join us, there are so many mums on the thread who can offer their support, experience and advice. I hope you are feeling a bit better today.