Basingstoke Team Parish

Lauren: Piecing the jigsaw together - EDS and PoTS


As a child I was always accident prone, would often complain of joint pain and had severe asthma also. My mum tried to convince doctors that there was something wrong, but they ignored her passing my pain off as 'growing pains'. As I got older the pain got worse and the chest pain developed into having further symptoms - I would often have dizzy spells, heart palpitations followed by immediate shortness of breath (in a different way to asthma attacks - it felt it was coming from the centre of my chest rather than down the bottom), feel faint, have blurred, double or tunnel vision, instant headaches when I stood up, and many other typical symptoms from PoTS. 

At the age of 14 things had developed until I required knee surgery and was given an ECG for the heart palpitations. The ECG was clear (I was laying down when I had it) and the knee injury given as a sports injury and so no other investigations took place. By the time I started university at 18 I'd had a further 2 surgeries to my knee and occasional ECGs - the knee injuries were given as instability caused by the first surgery and returning to sports too quickly following surgery and the ECG was still clear so still no answers. 
Whilst at university things went from bad to worse; I broke my wrist twice, needed yet more surgery to my knee, repeatedly dislocated my shoulders, had partially dislocated my elbow following an accident and was having a lot of pain in other joints too. At 19 the break-through came. My mum was down her GPs and read 'Pick Me Up' magazine in which there was an article about a young lady with Hypermobility Syndrome - she immediately called me to tell me she thought it was what I had and to go to my GP to discuss it. As soon as I suggested it to the GP and he had done some simple tests he agreed and referred me to a rheumatologist who agreed with this diagnosis. Unfortunately things didn't improve straight away and I was still having heart palpitations and the other symptoms, to the point that in my final year I fainted in one of my university exams and was unable to continue or retake the exam. Things seemed to hit rock bottom - the Hypermobility was completely out of control, I was dislocating my shoulder so much that I didn't bother to put it back in some of the time and despite specialist physio I wasn't able to keep my joints stable. 
In 2011 I had shoulder surgery for cartilage damage and the surgeon referred me to the Royal National Orthopaedic Hospital for a 2 week in-patient rehab course; whilst I was on this course the team treating me realised how out of control things were and so asked my GP to refer me to one of the rheumatologists at RNOH. After seeing this rheumatologist I was confirmed at having Ehler's Danlos Syndrome Type 3 (some say HMS and EDS are the same thing, others don't) and also fibromyalgia... still no explanation to the heart palpitations etc. 
Then in March 2012 I injured my knee again and required my 6th knee surgery to the same knee and this is when it was clear that my knee wasn't going to improve - I lost much of my movement in my knee and it no longer took my weight - and any further surgery would be futile and could potentially make things worse rather than better, therefore leaving me using crutches and a knee brace. I felt like my world had come crashing down - my knee injury meant I could no longer go into the line of work I had trained for at university and was also unable to do many of the things I enjoy, but throughout this there was still no explanation as to why I was having all the chest problems. I felt like I was going mad and that no one believed me when I said what it felt like - they thought I was confusing it with muscle spasm, though I knew it was deeper in my chest than that. 
Finally in January 2013, after losing my second job in a row due to health issues caused by EDS, I requested that my doctor refer me to see Professor Graham at University College London Hospital as I knew he specialised in EDS and thought he might have the answer to my prayers about my knee and other problems. I saw him on 18th April 2013. Unfortunately he wasn't able to help with my knee and he had no further suggestions from what was already in place for my other joints, but whilst there he ran through a number of other questions and did some tests - when he asked if I had certain symptoms such as the dizziness I felt a sense of relief, someone finally believed me! The tests he did showed that I had PoTS and he has now referred me to one of his colleagues to get the symptoms under control. I was so pleased that someone believed what I was saying, had an answer to what it was and was going to send me to see someone who could get things under control that I cried. I'm hoping that it won't be too long before I see this doctor the symptoms are quite bad now and as a result, when combined with my knee problems, I'm not allowed to have a bath or shower unsupervised and I can't bend down to the oven among other things. I'm thinking positively now, I have the answer and things can be controlled - it can only get better, and at 24 that is a huge relief as I want to get my life back and be able to go back to work. I'm also starting my own business in the cake industry - though at the moment my husband has to help me get things in and out of the oven. 
My story is complex, but it normally is when EDS is involved. I just hope that someone out there that reads this will feel the sense of relief that I felt when all the pieces of the jigsaw were put together, and know that they're not alone and not to give up fighting for people to listen. 

View all stories