Way back to when I was a little girl I can remember pain. I would wake in the night and cry, waking up my parents. The pain would be in my legs, my knees or my ankles. Occasionally it would be in my neck or shoulders. I know that mom had taken me to see the Doctor because she always said that she’d been told it was growing pain. Then later, it was cramp. I think at times she thought I was just attention seeking, especially after my baby brother was born. Then my Dad passed away. I decided not to complain so much, mom had other things to worry about. I did lose a lot of time from school though, I didn’t always say it was pain in my legs, sometimes it was tummy ache or headache.
Most days I felt okay. I would play with my friends, I would run and walk with no problems. If I did too much then I would find sleep difficult but I didn’t actually make the connection back then. The more I’d done in the day, the worse I felt at night.
I’ve always been double jointed, or hypermobile as they like to call it these days. Still, I wondered why I could be so bendy yet so rubbish at gymnastics. I had no balance, no poise, no grace. I was always falling over. My body is the wrong shape, my limbs are too long. I found quite early on that I could pop joints, as a child I developed a tic where I was popping my shoulder out, I became addicted to loud click it would make. The pain was addictive too in a strange way. I managed to stop myself when the kids at school started commenting. I can still do it now, but it hurts more.
As an adult I have managed okay. I’ve worked full time, sometimes doing quite strenuous jobs. With one job I was on quite strong painkillers from the GP when I did some damage lifting.
My pregnancies have been painful, but I honestly believed that everyone felt that way. Surely most women felt that their bones where going to break carrying that extra weight around, their legs ached every night and they never felt comfortable, they found it difficult to even get dressed, just like I did. With my third child I felt the horrifying crunch of my pelvis and was diagnosed with SPD, I could barely walk. I had an epidural with my first child, it didn’t work. I never bothered again.
Going to the dentist has always been a nightmare. I stopped going when they stopped offering gas. I said it was because I didn’t like needles. I don’t mind needles, they bruise me something terrible, but I’m not afraid of them. The anaesthetic at the dentist never worked but they didn’t believe me. They thought I was just being silly. Then I had a good dentist who made sure I had enough anaesthetic, which was at least twice as much as normal. The only thing I’ve not been able to have is a root canal filling, it was less painful to have the tooth extracted.
In my mind I believe that I don’t complain much about my pain. I try to hide it as often as I can. My family will disagree, they think I’m always ill, I’ve even been accused of being addicted to painkillers. I try not to take them unless I really have to. If they knew how much I do hurt all the time they probably wouldn’t believe me anyway, who would? Who can possible hurt so much without having some serious disease. Surely it must all be in my head?
Lately the pain has spread. I now get pain in my hands and wrists. In the past the pain in my upper body has been limited to my neck and shoulders. I’ve been to the GP who tested me for Vitamin D deficiency and I was borderline. Now I’m taking Vitamin D for three months before he will check anything else. I’m not sure he will find anything.
My little girl has been diagnosed with Elhers Danlos Syndrome, something I’d not even heard of a year ago. Her diagnosis was based on her hypermobile joints, her pain and because she subluxed her cervical spine and they had trouble fixing it because her ligaments were too lax. Elhers Danlos Syndrome is a connective tissue disorder, the tissues are too lax and the joints can sublux, or pop out. Symptoms of EDS include having difficulty with anaesthetics and easy bruising, sufferers can also have problems with their teeth and gums. Other symptoms that both myself and Star have are gastro problems, headaches and sleeping problems. I also have dizzy spells and brain fog.
Other things taken into consideration when diagnosing someone with EDS is their family history. Both myself and Star’s older sister have symptoms.
I don’t have an official diagnosis, but Star’s doctor believes that I have EDS too. For the first time in so many years I can actually put a name to why I feel so much pain. It’s not all in my head. I will still go on hiding it as much as I can though, It hasn’t beaten me yet, it sure isn’t going to now.
This month is Elhers Danlos Syndrome Awareness month, if you wish to find out more about the condition please visit http://www.ehlers-danlos.org
I you are wondering why on earth I am doing the Race for Life
then I can tell you I was inspired by the amazing Lara Bloom and you can find her story on YouTube in Issues With My Tissues