May Ehlers Danlos Syndrome Awareness Month - My Journey to Diagnosis


I've been wanting to share this with you all for a while but as it's a personal one, it's taken some encouragement and determination.

As far back as I can remember, I have suffered from pain in my joints. The pain started in my knees, some days were be pain free and other were agony. I went on living like this for years and as I was young, I put it down to growing pains.

How wrong I was.

One day, my mum was demonstrated her 'party trick'. She could touch her wrist with her thumb and I thought, that's so weird. I gave it a try myself and low and behold, I could do it too. I looked into it online and this is when I discovered Hypermobility and the syndrome itself.

HMSA's Definition of Hypermobility Joint Syndrome:

Photo & information: Hypermobility Syndromes Association - http://hypermobility.org/

It was like a light was switched on and the more and more I looked into it, I could relate. I tested the Beighton Score on myself and I scored high. I knew I was more flexible than others as in school, I often chose to sit in the Buddha position while on the floor and I found that comfortable.

In my early 20's, the pain had gotten worse and targeted more of my joints. I raised concerns with my GP and I was advised to self refer to the NHS Physio, which I did. For years, I went in and out of NHS Physio rooms with no one really understanding Hypermobility. I often found certain exercises were actually making my pain worse. The GP informed me that there was nothing he could do for me and it's quite normal for young people to be hypermobile. You may already know that yes, that can be true but not it's not normal to suffer pain from being hypermobile. A lot of athletes and dancers are hypermobile and it's perceived as a positive thing for their career and they can go on living life pain free.

I went in and out of flare ups for years with widespread joint pain and I had run out of energy and fight. When I was at my worst, I worked a full time driving job and that's when I needed crutches. I was used to working in active roles where I was on my feet all day and my body was in shock. I stuck at it for a year until I found more active work again.

At the grand old age of 29 (feeling more like 69), I'd had enough of being fobbed off and plucked up the courage to see my GP. By this time, I was back to working a non active job, full time in Admin. I had recently moved into the area so didn't know any of the GP's at my local surgery. I went through every GP in the surgery until I found someone who would listen. As expected, I again was fobbed off. I was down to the last GP and she was the one who listened. We talked about Hypermobility and Ehlers Danlos Syndrome which she admitted she knew very little about. I wasn't worried as it's often stated that GP's have never heard of the condition and I really respected her for admitting she had little knowledge. After years of not being believed, being told it was all in my head and that I was too young to suffer with joint pain, I could have cried when she said she would look into EDS. A week later, I had a phone call from her secretary who advised me I had been referred to Rheumatology at my local hospital, hooray!

I waited around 4 weeks for an appointment and the day soon came around. I was so incredibly anxious that after all of this, I would be fobbed off again and just told to get on with it. I turned up to my appointment early as my anxiety was at an all time high and I worried about parking and getting lost. Before the consultation itself, the nurse took my blood pressure and she could tell I was really nervous. She was so incredibly kind and told me everything was going to be OK and I would get the help I needed. Her lovely words helped me to relax and I was soon called through to the Rheumatologist.

The consultation began with a list of questions including family history, when the pain started and what other symptoms was I experiencing. The Rheumatologist then examined me. I was pulled, pushed and bended into every possible angle, I felt like a rag doll! During the examination, my shoulder went back into place and it made the loudest pop, we both laughed. After the physical examination, we discussed my low blood pressure result. I wasn't aware I'd had low BP but it made total sense as I regularly suffer from dizzy spells and heart palpitations. We neared the end of the consultation and that's when I received the official diagnosis, Ehlers Danlos Syndrome Type 3 and PoTS. I honestly could have cried right in front of her, I felt so much relief.

Where I am now
I received the report from the Rheumatologist by post a week later. Unfortunately, I wasn't offered a follow up appointment but I was informed if there were any developing issues, she would be happy to see me again. I'm now on regular pain medication that I'm still getting used to and it doesn't stop my pain completely. I use a TENS machine almost daily which helps with my back and knees. I use heat pads and water bottles throughout the day and I feel this is truly the only thing that eases the pain, at least short term.

I am lucky enough to be able to afford a private Physio who specialises in EDS and I have to work hard with exercises at home. I've tried going to the gym but the pain is just too much. I've started taking short walks again, I used to love walking and breathing in the fresh air.

Now is the waiting process for my Podiatry referral. My ankles roll in severely so I'm hoping for Orthotics. I have to say, I'm not looking forward to someone touching my feet, I am so ticklish!

If you're currently fighting a diagnosis whether it's EDS or anything else, please don't give up. I promise you, you will find someone who will listen and can help. You might have to go through a million health professionals to get there, but you will. It's taken me the best part of my twenties to get there. I did want to give up at times but I knew I couldn't live a lifetime of pain and why should I have to? We all deserve to be listened to by our health professionals and to receive the right treatment.

Can I truly say that getting a diagnosis has opened me up to the right treatment? It's still early stages but it's good to know I have the support of my GP. The current state of the NHS and pressure on the service saddens me and my future does worry me. Something has to give.

You can read more about Ehlers Danlos Syndrome and the different types here: https://www.ehlers-danlos.org/

Thank you for reading and I'd love to hear where you are with your condition, diagnosed or undiagnosed. Leave a comment below.



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