My dd has Eds which was originally dx as hms, we’d been going to the gps regularly throughout her childhood and getting fobbed off, even despite MANY visits to a&e with sprains and strains and other textbook symptoms from as soon as she was born we now know. By chance just at the point I was ready to push hard for a referral we saw a locum gp who LISTENED as I explained this latest sprain was one of many, of the other difficulties dd was having and that there was clearly something wrong and she needed to be seen by a specialist. She referred us to a paediatric orthopaedic specialist who, even though dd was by the time of that appointment uninjured, remarked to us that just by seeing dd walk and her overall stature she was fairly sure she already knew what was wrong. They referred us onto a rheumatologist. Dd was still thoroughly assessed, I can’t remember now everything that was done, and as I say initially Hypermobility syndrome buy following subsequent symptoms being recognised this was changed to Eds.
What we/she has found has worked for her to reduce/minimise symptoms/difficulties is
Good supportive footwear
Good rucksacks instead of using handbags, she only uses handbags now when she won’t be carrying much
Doing her physio (which she hates but has gradually come to accept it must be done religiously). She also exercises in other ways to stay as fit as possible as that helps but avoids high impact stuff. Swimming is her preferred option normally but that’s been difficult lately of course.
Wearing her orthotics! Again something she resisted for a long time but now accepts means she is much less likely to reach a point where the pain is unbearable! I don’t think it helped that her dx happened in the summer before she started high school so at a time when she really didn’t want to be “different” and was very self conscious about her appearance. She was also a bugger for not wearing her glasses at this point which meant she kept bumping into things which didn’t help!!
Recognising her limitations - eg a busy day needs to be followed by a non busy day wherever possible, limiting walking and especially using stairs as much as possible, stopping as soon as she feels “wrong” somewhere in a joint or if she’s feeling pain
Eating well and sleeping well as much as possible - Eds can make eating normal sized meals difficult and can also mean they burn more cals and those 2 don’t marry of course. She’s now used to having 5/6 small meals a day rather than eating like most others do. Healthy fats and oils and certain vitamins are crucial too to support the joints and musculature. Sleeping well, getting a good rest gives muscles a rest of course, plus it is quite a tiring condition in our experience.
As per pps painkillers and anaesthetics barely touch her! Thankfully we have a dentist who has a mother with the same issue with anaesthetics and so understands - I have the same issue too, my first general I was coming round far sooner than they wanted. Dd has only had locals so far but they wear off super quickly and it’s incredibly frustrating how many hcps are dismissive and frankly ignorant about this! Even when we TELL them they take the attitude that we must just be wimps!! So annoying!
On one occasion I was having a procedure that the anaesthetic used was used because it also reduces blood flow, the hcps treating me didn’t listen, didn’t believe me and got in a flap when I was bleeding more than they’d have liked! And I was like “I did tell you” I had to have the same procedure again a few months later, same people and this time they listened and acted accordingly.
In our experience its woefully under recognised and acknowledged - even once you have a dx!