May Is EDS Awareness Month - My Story Of EDS

Hi Everyone!

I couldn’t let May, Ehlers-Dalos Awareness Month, pass without telling you my story with this condition & my journey to diagnosis. This is the first year that I have had the opportunity to mark this month as a diagnosed EDS zebra! So…

I have EDS-Hypermobility type &, though only recently diagnosed, have been suffering significantly for the past 5 years. EDS is a connective tissue disorder, where the production of collagen is affected. There are a number of different types of EDS. Hypermobility type being the most common.

As a child, I twisted on my ankles a lot. Mum took me to the Drs (I was too young to remember) on countless occasions but was told there was nothing to worry about.

I started having problems with my wrists when I was 17 & working toward my piano exam. When I went off to music college I struggled. My hands were painful & I found sitting in orchestra difficult. My back would ache & I had concentration difficulties. It felt like half an hour had gone by but when I looked at the clock it was just five minutes. At 19, I had an arthroscopy on my right wrist, showing that there is instability of the ligaments either side of my lunate bone. The surgeon was of the opinion that this is the case for both wrists. 

I managed to not have too many other problems until I was 22, or if I did, there was too much going on with my basilar type migraine that it was the least of my worries! Then all of a sudden my back was so painful that I had to lie on the floor at uni while waiting for lectures. My elbows also became painful for the first time (at least that I can remember). When I went to the GP, I was told that I had tennis elbow & poor posture - not the case & not helpful!

It’s only now that I understand how lucky I was that my teacher ditched me at this point for not doing enough practice (despite her knowing the difficulties I was facing). At the time, I felt completely lost - playing was the one thing I could always turn to when life was hard. It was a month or two before I found my ‘current’ teacher (I can’t play much at the moment). She also has EDS-Hypermobility type. She helped me understand the condition we both have & gave me some really good tips on how to make adaptations to make life easier. She is one of my heroes.

I struggled through my dissertation, two hours working, two hours sleeping. Mum did everything she could to help. I struggled to put my thoughts into words though because of the brain fog. This made dictating just as tricky, if not more so, than typing my work out myself. My wrists were so bad that I couldn’t open draws or get the tops off my tablet bottles. Things improved once I finished uni & wasn’t using the computer keyboard all the time!

The first rheumatologist I saw was when I was 23. He told me that I have 'chronic widespread multiple skeletal pain with aspects of Fibromyalgia.' I still have no idea what that is or means! He handed me two leaflets, one on Hypermobility Syndrome (also known as EDS-Hypermobility type) & one on Fibromyalgia. He told me that I didn't have either of these conditions, but that the leaflets may be helpful & sent me on my way.

My neurologist (migraine specialist) wasn’t happy with this as it’s not uncommon to find migraine, EDS (& PoTS) coinciding. He requested my GP re-refer me to the rheumatologist. This resulted in me receiving & hand therapy. Both of these specialists were helpful & together gave me a score of 7/9 on the Beighton scale (more on this later).

It took an operation to put my knee cap back into the right place & 4 sublaxes (partial dislocations), as well as my neurologist pushing even more for a diagnosis for me to get to the point I’m at now. It might also be worth noting at this point that, prior to my EDS diagnosis, I received a diagnosis of TMJD (essentially a problem with the jaw joint that, again, is often found in people with EDS).

In November of 2014, I was diagnosed with EDS-Hypermobility type. There are many diagnostic criteria for this type of EDS, which I won’t go into detail about here. The reason there are a number of criteria is because EDS is a connective tissue disorder that affects each person differently. One of the diagnostic criteria, alongside family history, symptoms & a number of other things is the Beighton scale. This is a scale whereby certain joints are tested for their flexibility. At this appointment, I scored a 9/9. Frustratingly, not all joints are covered by this scale (like the hips - one of my most flexible areas) This is another reason why the Beighton scale is just one of the things used to diagnose EDS-Hypermobility type. I was sent for a course of physio with a senior therapist who specialised in connective tissue disorders, which proved very helpful. This physio helped with physical supports to make it possible for me to play my oboe again.

In December of 2014, I was seen at a different hospital & apparently scored a 1-2/9 (seriously!?! Surely it’s a 1 or a 2!!!) on the Beighton scale. I was told that I don’t have EDS-Hypermobility type. I think he thought I was a hypochondriac. He sent me to physio to ‘deal with the pains’ I experience. I went once to see if they could offer anything the other hospital couldn’t (with the original physio’s approval). The rheumatologist also suggested I see a Cognitive Behavioural Therapist. The physio he sent me to initially agreed with this decision but by the time I was through with my appointment with her she was singing a different tune. I made sure she knew each & every thing I do & think about in order to minimise pain, make my life easier & live my life to the fullest.

This is one of the big problems EDS. It is often misdiagnosed & mistreated. I believe one of my sublaxes to be a direct result of & the other three to be the indirect result of these. Being told that I don’t have a condition I’ve already been diagnosed with & toldd that I need to see a psychologist affected me emotionally & had a detrimental affect on my IBS. I dread to think how this experience could have affected someone else psychologically.

Not only is EDS a debilitating condition (& in the case of some of the types, life threatening), it is also one that is little known or understood. As we have seen in my case, this makes getting that all important diagnosis & subsequently help difficult. Part of this is that each of us is affected by the condition indifferent ways. Off the bat of my diagnosis I am being investigated for Postural Orthostatic Tachycardia Syndrome - a related condition. 

A thought to leave you with - Talking on the program 'Issues With My Tissues' Professor Rodney Grahame noted that it was highly likely the late Michael Jackson was a sufferer of EDS-Hypermobility Type & that the management, or lack of, was ultimately the reason behind death.

If you’re suffering with &/or fighting for a diagnosis, know that you’re not alone. 

Tania Xx