Adapting to her diagnosis of Ehlers-Danlos Syndrome has been a real challenge for Jaime Davis

I am 30 years old and live in Surrey in the UK with my partner, who is also my carer. My journey with Ehlers-Danlos syndrome has been a long one with many obstacles.
It took 10 years to get a diagnosis of Ehlers-Danlos Syndrome Type 3 (Hypermobility), during which time I was told that I was depressed, the pain was all in my head, that I had fibromyalgia and lastly, that I was an attention seeker.
I actually stumbled across the condition myself after learning of a friend who suffered from a rarer form of it. I did a lot of research about EDS and raised my suspicions with my GP. Finally I was referred to an excellent rheumatologist who confirmed it.

What is Ehlers-Danlos Syndrome?
A disorder in which the structure of connective tissue is abnormal due to a gene mutation. This results in fragile and hyper-extensible tissues which can lead to a range of symptoms that affect many of the body’s systems. There are different types of the condition and a vast spectrum of symptoms that include joint pain, fatigue and hypermobility with the joints having a wider range of movement than usual. There is a lack of knowledge about EDS in the medical profession so it is often misdiagnosed or overlooked.

After Jaime’s diagnosis…
Due to an intolerance to many painkillers it took me a long time to find a balance of medication that takes the edge of the worst of the symptoms.

EDS has completely changed my life. I used to be very active, relatively sociable, worked full-time and enjoyed dancing and amateur dramatics. Now, I am in constant pain and need a walking aid. I have even needed a wheelchair at my very worst. I haven’t been able to work for over four years.
It has had a major impact on my social life and independence too. Everything is 10 times harder than it used to be and even everyday tasks (cooking, eating, showering, getting dressed, cleaning, etc) can feel like a battle.

I have found it very difficult to adapt to a new way of living and thinking and still find myself mourning my old life and the independence that went with it. I find that I now have to think about everything I do from putting one foot in front of the other to how many tasks can I accomplish in one day so that I am not completely useless the next. It can be easy to overdo it just because I am having a “good day” or because I am feeling stubborn and I want to do it.

A vast array of other unpleasant symptoms are part of the EDS package, one of the more common of which is irritable bowel syndrome (IBS). And in my opinion, it’s one of the more difficult ones to live with. I was diagnosed with IBS three years ago after several years of putting my upset stomach down to side effects of all the different medication I had been taking. After I had a “drug holiday” and weaned myself off all my medication I noticed that my upset stomach was only getting worse. Although I had not been diagnosed with EDS by this point I found it very hard for my doctors to take my concerns about my stomach seriously. It wasn’t until my GP referred me for further investigations that I finally got a diagnosis of IBS.

I love food so I have found it very difficult to give up anything that is technically classified as “bad” for people with IBS. I know that I may come across as being weak willed but with so many other things I have had to give up over the years, I just found the special diets quite depressing. So I try to practice moderation. Instead of three large meals I have several small meals throughout day as well as drinking plenty of fluids to stay hydrated.

Anxiety seems to play a big part in my IBS. This, for me is because I worry about not having access to a toilet if I need to go. And stress has an impact on my IBS as well as all my other symptoms and can be self-perpetuating. You have a flare-up, get stressed because you are having a flare-up and the flare-up gets worse. Other times it might be an outside source of stress that will cause a flare-up but either way it is not always easy to recognise the signs. If I do notice that the flares/stress are getting increasingly worse, then I try to practise mindfulness to help get through it.

I have known many people who have had IBS over the years as well as myself. I have found most of them have had difficulty with diagnosis. There are others who just won’t bother going to see a doctor because they are “pretty sure” it is IBS and don’t believe a doctor will do anything anyway, and some who are too embarrassed. From my experience I do understand why people don’t want to go because it isn’t always a straightforward journey. However, it is vital for diagnosis and understanding of what is going on inside your body and the best way to treat/manage the symptoms.

When preparing to go see a doctor, write down a list of all your symptoms (even if you think they are a bit random or embarrassing, as they might be important), tell your doctor that you are concerned you might have IBS and try to be as open and honest as possible. If you are not satisfied with the care your doctor has provided then say something or the process takes longer and becomes more stressful.

Don’t forget that EDS and IBS affects everyone differently. What might work for me may not work for someone else so do not judge yourself harshly if you aren’t coping with it as well as someone else is.

Further information/support
• EDS support in the UK, contact Ehlers-Danlos Support UK: www.ehlers-danlos.org or tel 0208 736 5604
• EDS support in the US, contact the Ehlers-Danlos National Foundation: www.ednf.org.
• IBS support in the UK, contact the IBS Network: www.theibsnetwork.org or tel 0114 272 3253.
• IBS support in the US, contact the International Foundation for Functional Gastrointestinal Disorders: www.aboutibs.org or tel (888) 964 2001.

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