Last week as part of Ehlers Danlos Syndrome Awareness Month, I recycled a post I wrote in 2014. As with any illness / condition / disease when you look back you can see how things have changed. Some things may have improved and new symptoms may have reared their ugly heads. Ehlers Danlos Syndrome is no different, I sometimes think it’s like playing a slot machine each morning never knowing what the combination of joints giving me pain (and problems) will be that day.

I am still as bendy as I was at this point three years ago, although getting my thumb to touch my wrist isn’t as easy as it was before, my thumbs now seem to sublux (partially dislocate) or strain the ligaments on an almost daily basis. Who’d have thought something as simple as taking my trousers / underwear down would be enough to cause pain but it does. Looking back on the photo’s of my fingers it is clear that they are more flexible now than they were two years ago. Although some with EDS will stiffen up with age despite being 44 this year, I seem to be getting more lax. I wonder if by the time I am 80 I shall just be a floppy mess unable to move due to the collagen (the glue that holds us together and is what is faulty in EDS) just being stretched beyond belief.

I wrote at the time that my elbows are normal and as usual when I write anything about my condition, it’s like an open invitation for things to change dramatically. Doctors don’t seem to be able to agree on whether my elbows are hypermobile or not, to me they don’t seem to be but then it’s difficult to gauge what a normal range of motion is when you have been surrounded by anything other than the norm. My normal is growing up within a family that is hypermobile, so I never considered my flexibility to be anything other than that. My elbows can be very sore first thing in the morning, as I am asleep when I am doing the damage I can only assume that I am over extending the joint. It makes my elbows really ache and feel clicky, I can feel tendons and ligaments rub over the bones.

My spine is still the area of my body that causes me the main problems. I am currently waiting for a spinal x-ray to try to find out what’s going on at L5-S1 level. This pain is very different from my “normal” EDS pain, it hurts when I lie down or sit down and eases off when I am moving. In the mornings I am very stiff and look like a hunched over old lady. After a few hours it eases up but the minute I go to bed the pain starts up again. I have been taking a NSAID and it’s really helping which is the first time a nsaid has ever helped. I am hoping the x-ray shows something as it’s hard going with it affecting my sleep.

My fingers are also causing a problem not with them being more lax than they have been previously but with them swelling, clicking and pain. Some mornings I can barely use my hands as they are so swollen. When they are bad the only thing I can do is just wait it out until the swelling starts to subside. My grip is also a lot weaker, so opening child-proof bottle tops is a nightmare, I am struggling with even normal bottle tops because I no longer have the strength of grip I had previously.

These are just some of the problems I face with EDS on a daily basis and I could never predict what was going to hurt not hurt the following day. It feels totally random and at times, the pay back for relatively undemanding activity totally disproportionate. I always laugh when medical professionals say we need to learn to pace ourselves as I never seem to have the same energy level on a consistent basis. I never know when I have done too much until hours later and the pain starts. If I paced myself I would never do anything for fear of causing pain or fatigue. Both of which are just a standard part of my day.

I was finally diagnosed with EDS when I was 37, my condition suddenly deteriorated in 2007, it took until 2011 to get some answers. Whilst it’s great to find out that no, I don’t have a low pain threshold, yes I can feel things after I have had a local anesthetic the problem now is that aches and pains get blamed on EDS rather than being investigated properly.

There also seems to be a blanket policy in many of the hospital trusts that unless a condition is life threatening, surgery (if needed to correct a problem) will not be performed. This is done under the guise of “first do no harm” and the worry of making things worse however unless you’ve lived with this condition you have no idea the levels of pain we can function at. I have bowel adhesions (fibrous bands of scar tissue that have wrapped themselves around my intestines), I had them surgically removed in 1998 (before the EDS diagnosis) because they were causing me to collapse due to the pain they caused on a regular basis. I still get awful periods of time with them, I have to be careful what I eat, so I can’t have raw vegetables as it triggers the pain, yet when I saw a surgeon a few years ago I was told unless my bowel becomes obstructed they won’t operate. I have heard similar stories from other people around the UK, that they have various problems that could be sorted out by surgery yet due to the EDS diagnosis they are told they can’t have the operation.

I was so pleased when I got the diagnosis as it finally explained all my weird symptoms but it’s a poison chalice. I have better pain medication but I am pretty much left on my own to deal with medical issues as they arise. Many in the medical profession believe that because there is no cure for EDS it means that there is no point trying to treat us. Now I have the diagnosis the level of help I get is severely limited.
There was a lot of drama recently within the EDS groups on-line as the diagnostic criteria had been changed. Many people diagnosed with Hypermobility EDS would now be classed as having joint hypermobility syndrome rather than Ehlers Danlos Syndrome. Having checked the new criteria I would still be classed as HEDS and to be honest even before checking the new guidelines, I wasn’t that bothered. Regardless of the label most people with EDS or JHS will receive shit care, have their problems minimised or ignored and surgery that would be offered in normal circumstances declined. It would have been far better if the bodies that spent all this time and money on designing the new criteria actually focused their efforts on getting patients better care.