Friends corner: Ehlers-Danlos Q&A {part 2}

Following on from part one of friends corner: Ehlers-Danlos Q&A, here's part two with some more friends. Enjoy!

Sarah

2005                                                                                             2006

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I became friends with Sarah around 2003 as we were part of a wider group of friends (scup the dirty AOH grungers, haha) and we later lived together.

I inherited the semi-famous Tubby cat (AKA Tubbz) from her, spent Christmases together (AKA St. Spickets), became godmother to her beautiful son Cian, and later devastated by his untimely passing. We've also been through many a carton of wine, mountains of white tights, bottles of Bucky, buckets of bobble hats and a million different hair colours between us!

Q. How do your illnesses effect pregnancy and child birth?

The road to Cork

As regular readers will know, I was diagnosed with joint hypermobility a while back (although this was nothing new to myself) and very possibly have dyspraxia (they seem quite commonly linked). However, I find myself in the predicament of being too unwell for physio and occupational therapy, and can't get any doctor to take me on or even advise me in my current state. Low muscle tone, no stable core, lack of balance and frequent subluxations... All becoming worse over time, as I continue to not acquire any medical help. But everyone in my GP office have been truly great, all willing to learn and research and try me on different medications. If it hadn't been for one doctor there stepping out of her comfort zone and putting me on Baclofen a few months back, I honestly have no idea what state my body would be in now. I'm far from being healthy but I'm a long way from where I was before I began taking Baclofen. It's one of the many reasons why I feel so strongly against both medication shaming and anti-science baloney (as well as pseudo-science). The wonders of medical science and the amazing things we have achieved as the human race leaves me in awe and amazement on a regular basis, so I loath any click bait scams that threaten our gullible society back into caves. 

...Well it wouldn't be a blog post if I didn't go even slightly off topic, haha. Right, so where was I...

So a bit about joint hypermobility: 

Having hyper mobile joints literally just means that your joints over stretch the usual range. If this is accompanied by pain it is often referred to as joint hypermobility syndrome. The joints over stretch, and as we looked at, can cause frequent subluxations or even full dislocations. This leaves me and many sufferers in constant pain. I find my subluxations were causing my muscles to react in intense muscle spams, which increase my pain (as well as make me look like a big, flailing fish on dry land), hence the need for Baclofen.

Many people are hypermobile/ double jointed, but they may not have any pain. So, if someone like me encounters a doctor who is not knowledgeable on such conditions as EDS, they may confuse the two.

The terms hypermobility syndrome and Ehlers-Danlos (type 3) are interchangeable, but really are the same thing. Some doctors simply prefer one from the other, and of course, using the term "joint hypermobility" spells the issue out in a more obvious way. To define hypermobility, doctors often use the Beighton scale in evaluating patients. If you Google images associated with EDS, you will find the extreme versions of the condition -please note that in order to be considered hypermobile, you don't have to have all of these signs, and you may not stretch as exactly in these photos. For instance, I can pull my thumb closer to my arm than most other people can, but not all the way to my arm as in the picture below:

In this example, I stretch enough to be considered hypermobile, even if not all the way. Other joints do over stretch to the full extent, and I'll talk a bit more about my personal case below -I just think it's important to note that you may not be as extreme as you will see in photos of the condition. While hypermobility is common in children, we all lose some of our elasticity as we get older -and those with hypermobile joints can be the same. In my own case, my body can stiffen and become very tense, due to the muscle issues. Being so tense and rigid goes against my body's usual hypermobility, and so it can make it hard to spot in older patients. Many specialists now use the Brighton scale, as they see a strict Beighton as outdated.

The cause of EDS lies within a fault in our collagen, the most abundant protein in the body that helps hold everything together (present in skin, joints, blood vessels -which is why symptoms can be so vast and hard to link). 

Because of this, the condition is more than just hypermobile joints and pain. A specialist will diagnose it on several criteria, including examining the patient and asking about medical history/ family medical history. Someone with EDS hypermobility type may have (although may not have all) some of theses symptoms:

Back on the road

Hi all, long time no write! Unfortunately, as those who follow my Facebook page already know, I've had several health issues impeding my typing and so have had to take an unexpected break (including good ol' peripheral neuropathy, an ongoing issue worsened by the long-term affects of chemotherapy). Hopefully the end of this is now, and I can start writing more regularly again.

So, to keep everyone posted -My latest health news, on the road to a real, full diagnoses... Or at least, the road to finding any form of doctor/ specialist/ consultant who will take me on, who I don't scare the bejaysus out of, who will not look at me with sad eyes and tell me "I'm sorry... I'm not qualified to deal with your case". 

I recently had yet another appointment with a physio -this was my third physio appointment as an adult, although this at least was in a Dublin based hospital, and was a sit down/ office appointment to review me for possible hip surgery. Like a pre-pre appointment before seeing an orthopedic surgeon.

Unfortunately, (as with the two previous physio appointments that I've had in the last 10 years, and the neurology appointments, and a couple within an rheumatoid department a long time ago) I heard those same words... "I'm really not qualified for this".

I'm not upset, or angry, I went in with little expectations. However, the next part hit me a bit hard - "A surgeon won't touch you... you're too unstable, you have no core strength or balance and will not recover well from surgery. I'm sorry". It was a blow, but an honest one, and perhaps it's something I should have considered....

Overall the appointment went well (yes, really, haha). She did all the relative and usual strength and balance examinations on me, before hitting me with these two bits of disastrous news... they're so embarrassing, I can't do them at all and feel like a massive idiot, I don't think