I am really pleased to have contributed, in a small and rather quiet way, to this video that Jenni has put together for EDS Awareness month. Jenni is a vlogger/blogger and goes by the name 1nvisibl3Girl – please have a look at her channel & blog and the social media sites of the other great (very young!!) EDSers on this short film!!
“This video is all about living with Ehlers Danlos syndrome (EDS) as the zebras I have been lucky enough to get to know, and I, share our own experience of this chronic, invisible illness. We talk about what EDS is to us, how we manage our symptoms, how EDS has changed our lives, why we started our own EDS based blog or vlog and our hopes and dreams for the future. We hope this is shared as much as possible this May as it is #EDSawarenessmonth so people can learn what it is really like to live with EDS but also to support those also living with the disease. I know it is long but please watch it all if you can. There are some amazing people describing some very difficult things in their own words. This is a project I am very proud of.” Jenni Pettican
So yesterday saw me back in our local cardiology department to undergo investigations for my funny turns & faints – the symptoms of a malfunctioning nervous system, common with EDS. I was inexplicably nervous – particularly when I think about some of the major operations I have had over the years. Maybe it was the thought of having my symptoms induced or worrying that the tests might be negative and I might have to start convincing everyone that I’m not imagining my symptoms.
Anyway we arrived at lunchtime, me having starved for the obligatory number of hours, and the first test was an echo ultrasound of my heart. The first thing to establish was whether my scs would interfere with the scan as it did with the 12 lead ECG on my last visit. I perhaps should have been more concerned about my joints as I managed to pop my shoulder out whilst lying on my side, scaring the young sonographer silly as it literally “popped”. Not a good start before the tilt table as a sling was hung from the very same shoulder to support some of the machinery! The ladies performing the test were most concerned about my pain and my ability to stand still for long enough – I was instructed not to be brave. At this point we didn’t know if I would be able to keep my stimulator on or whether it would interfere with the heart trace. Happily there was no interference, so at least I would be able to keep my leg pain under control!
The first part of the test is easy – provided lying flat isn’t an issue (I managed) – lying on the table and being monitored for about 10 minutes. The next stage would normally be to be tilted up to standing – yes I was strapped on – and monitored for a further 20 minutes prior to GTN spray being put under the tongue, ahead of the final monitoring after the blood vessels had dilated. So great care was taken to elevate me gently to avoid jolting my back….and within seconds my vision was going, my blood pressure dropped, my pulse jumped and I started to heave! With this heaving apparently my BP dropped too low to measure and the student thought I was about to throw up over her. The next thing I was aware of was being flat and being told that this was the quickest and most dramatic positive result they had ever had! The same thing happened when I was slowly sat up 5 minutes later, so the test needed to go no further.
Not looking quite my best today! The ECG is attached to one pad on the chest wall and via a lead to another pad below the left armpit. The monitor can be unclipped to shower.
I was sent home attached to a 7 day ECG monitor which I need to activate every time I have palpitations, sweats or dizzy spells and am due back to see the cardiologist on Thursday presumably to talk POTS (postural orthostotic tachycardia syndrome). This morning I woke with the headache from hell and have been so tired, and I’m also feeling slightly paranoid about when I am pressing the heart trace button on my new piece of equipment -did I really feel something?? For the next few days I will be filling in a data diary and be even more wired than usual – with electronic gadgets that is!
I wrote about my visit to the cardiologist last week, and as an Ehlers Danlos bendy with chronic pain and other strange symptoms including fainting, I found this article by a UK based GP to be easy to read and understand. At the moment I’m not sure what I will be labelled with, but the more I read the more i am able to join the dots on a variety of symptoms from over the years – for instance the strange discolouration in my feet and calves as a teenager that looked like fluid pooling, for which my GP prescribed circulation tablets. Just last week during the hot weather, every time I let my hands lower below heart level they turned purple, then navy whilst swelling with bumps resembling varicose veins! See lovely pictures of my swollen hands – fortunately I was able to pull all my rings off before it was too late!
Our series continues as GP Dr Lesley Kavi discusses this lesser-known condition.
“Recognising disorders of the autonomic nervous system is a challenge for GPs. Symptoms can be subtle, non-specific and mimic other conditions (1). Yet dysautonomia can be a source of considerable disability and poor quality of life for patients. The postural tachycardia syndrome is no exception (2)”
See full article at Source: Obscure diagnosis – postural tachycardia syndrome | Feature | Pulse Today
Another week has flown by and here we are in the UK at May bank holiday & half term. Where is this year going? I have had 2 medical appointments this week and each of these have led to even more. The first was my monthly visit to the GP and I actually owned up to
the pain in my right hip that has got increasingly worse since it “popped” sideways – subluxed to those in the know – a couple of weeks ago. Rather unfortunate as this is my “good” hip!! The pain is completely different to the nerve pain and definitely EDS induced – it is deep in the front hip crease and at its worse on walking, to the point of literally taking my breathe away. Or that could be because my hip gives way and I fall over!!
So a referral is in the post for an ultrasound and orthopaedic appointment, and poor old Geoff, my very patient physio, is going to receive a call to ask for help with not just the shoulders any more. I have also spotted a tube of ibuprofen gel in my latest prescription bag….I wonder which dodgy body part I’m supposed to apply it to? There isn’t enough to cover them all!! The second appointment was with the neurologist to check me out for seizures. I am delighted to report – and just slightly relieved – that I passed muster and don’t have epilepsy. But – and no great surprises here – the faints, dizzy spells, palpitations etc are probably due to the collagen issues of EDS within my blood vessels combined with the chronic nerve pain…so another referral is winging its way to a cardiologist to put me on a tilting table to attempt to play havoc with my blood pressure!! And investigate POTS – no not another foray into drugs, but postural orthostatic tachycardia syndrome!
Another couple of referrals and I will have stamps in my book for consultations with every body system. Nearly a professional patient. Something that did make me laugh is that the lovely doctor told me that I must lie down immediately when I feel the aura of a dizzy spell/faint coming on – not sure how this will be received in the aisles of M&S.
We managed a trip to our book club this week – we meet in the pub, so Duncan isn’t going to miss this easily – and I have also been lucky to join The Book Club (TBC) on facebook. For those of us who have “bad” days, reading can be a huge part of our lives from comfort to distraction to enjoyment. Through TBC I have joined a group called Netgalley, which is a forum for “professional readers” to read and review new books prior to official publication. I’m not quite sure how I will get on with either of these sites – both ask for honest reviews to be published on goodreads and Amazon – but I thought that I would also have a go at posting some Book Chat on Painpals for my friends in the chronic community. At the moment I have opened a new page at the top of the blog and my first review, which is for a new book on TBC, can now be found there. Please stick with me on this, as I might find that I need to alter the theme of the blog if this doesn’t work out! Guest reviews would be most welcome too.
We have a trip to Exeter later in the week for Olly to visit the university open day – Lucy and I plan a day shopping, but she is getting concerned in case I have a fall. I did suggest borrowing a wheelchair – I know that I can’t walk very far and I have a feeling that Exeter is hilly – but I’m not sure that she fancies pushing her mum……to be continued!