I remember shuffling home in a long woollen coat aged 18 with a slipped disc and when I got home my boyfriend told me how he’d driven straight past me thinking I was an old lady. I hadn’t gone to hospital this time but had at other times gone to A&E and been given strong medication and explanation.
I don’t remember being much affected as a child. Although I could perform a few tricks popping my right hip in and out grotesquely and could pop my jaw out loudly, tunefully on both sides. My mother discouraged me from doing this. I had “growing pains” and nut and dairy allergies. I had bleeding noses that were impressively long and suffered horrendous period pain when that came along aged 12, plummeting moods along with it. I gashed my leg aged 11 and none of the local anaesthetic worked, in the end the pain of the repeated injections into the wound was
so bad they just stitched me up. The scar is wide and strange and exactly where Dr Burling did the skin check for stretch. I had winter tights on and missed the criteria for Classical EDS diagnosis on 0.5 cm on this knee. Every time I have subsequently had a visit I have forgotten to mention this.
I was diagnosed with Hypermobile EDS. At 50. With comorbid MCAS, POTS and also polymyalgia, not fibromyalgia as previously misdiagnosed.
Prior to this for 5 years I had been self diagnosed with Ehlers-Danlos.
It was considered sacrilegious to watch daytime TV in the house I grew up in and this stuck with me into adulthood. However I was laid up with a double sprained ankle and was watching an afternoon programme when a Suzanne Paul ad came on for collagen cream, 2 for the price of 1. I googled it. At the bottom of the page was the fine print listing symptoms of a condition where people
don’t synthesize collagen. A light bulb moment. I had all of them. The past 5 years I had been detailing to my elderly GP all the things I was suffering and had presented her with a stack of injuries I’d had osteopathic work on; she looked at me blankly as always and said… nothing. The weird rashes and drug reactions I had were also met with shrugged shoulders.
Since being diagnosed 8 years ago I have been helped a lot by taking hydrocortisone steroids for the polymyalgia. I am awake all day until 4 pm instead of fading at 1 pm. The days-long severe headaches also resolved with my brain more hydrated. The MCAS is more under control from taking the anti-leukotriene for 7 years. I am having a break now from it and taking as needed rather than every day.
Still the injuries hit out of the blue no matter how careful and mindful I try to be. Last year my sacrum detached and buckled twisting underneath me which
was a difficult and long recovery. I recently attended a retreat in Wanaka sitting cross-legged on a cushion for 10 days.
Support is thin on the ground. I try and stay active and get out and about but this is a life-limiting condition.
I have found nurses to be the worst in terms of not knowing anything about it, followed closely by physiotherapists.
There is a double edge to having free treatment through the hospital as they sort of snigger about me and put me in the “too hard” basket. I had access to 6 weeks in the hydrotherapy pool which was great, but having an injured elbow and shoulder on one side made the steep steps out of the pool majorly hazardous and I asked to be put in via the hoist which was a fuss for them.
It is hard to ask for what you need; they see you as stroppy and unfriendly, difficult.
We have a little local EDS coffee group, no one is well enough to run it and it is somewhat erratic but people make lasting connections through it.