Day 4! May the fourth be with you! Today is all about flare ups.
What a “flare up” looks like for me.
During a flare-up, I tend to sit at 8-10 on the pain scale, with prescription painkillers only bringing it down to about a 5-6.
I also have constant dislocations that don’t like to go back in place properly and make the pain worse.
I also tend to have fatigue and insomnia at the same time. And, as you can imagine, that’s all sorts of fun.
I also tend to have constant nausea, a chronic migraine and have blackouts.
My flare-ups are usually random, and last for varying amounts of time, usually anywhere between 2 days and a month. The most common causes I’ve come across is being overtired, over-doing it, stress, lack of sleep, and anxiety.
There’s not really a lot to be said on this topic, so that’s all for this post. I hope you’ve enjoyed reading and I’ll see you in the next post!
My journey with hEDS begins at 6 years old. At 6, I was rather athletic (or as athletic as a 6 year old can be). I danced, was a gymnast and did trampolining, played tag rugby, was an orange belt in Karate. Everything was fine.
I then started to complain of “hot and cold” up and down my legs, so my mam took me to the family GP, who looked at my feet and legs and concluded that I had flat feet and tendonitis and needed to see children’s physiotherapy and podiatry. The podiatrist agreed that I had flat feet and tendonitis as well as being hypermobile, which was what had most likely been causing the problem. Everything was fine.
I can also remember as a child I could (and still can) pop my right hip out of its socket and this would really freak people out because, you’re not supposed to do that, especially as a six year old.
The next sort of big “warning sign” that came was that I have a high/narrow palate and had awful dental crowding, but this wasn’t picked up on until I was about 13. I was (and still am) tall. I’m 5’9” aged 16, and I remember I grew 6 inches in a two month period when I was eleven and then had freakishly long arms, long arms which now fit the hEDS diagnostic criteria.
Then when I was twelve, I had a sports injury that changed my life. Picture this, a Year 7 gymnastics lesson, and the teacher supervising the girls asked us to form a human pyramid, and because I was one of the taller girls, I was one of four girls on the bottom. As you’re probably already imagining, it went awfully wrong, and the pyramid collapsed, leaving me underneath twelve girls and causing my knee to make a sickening crack. I immediately knew something was wrong because it didn’t feel right. I tried to tell my teacher, who quickly dismissed me as a wimp who wanted attention.
When it still wasn’t right a week later, and began “locking” and became increasingly painful, my mam took me to the family GP who referred me back to physiotherapy and sent a referral to the paediatric orthopaedic consultant. Physiotherapy gave me crutches to use when my knee was locked and wanted an MRI scan and some x-rays to send to the Orthopaedic consultant. I was on crutches for 9 months, had three sets of x-rays and two MRI scans before the Orthopaedic consultant decided to open me up and we discovered a hairline fracture along the surface of my right knee cap that had gone unnoticed in all sorts of scans and x-rays for 9 months.
The surgeon came to the conclusion that when the other girls had fallen on top of me, my knee joint hadn’t stayed together (due to the hypermobility) and had broken.
Then, everything was fine. I recovered from my surgery, was rehabilitated to walking, and got back to the doing sport. Everything was fine for a year.
But then my left knee started hurting. It would hurt when I walked, when I stood, when I went up and down stairs,when I wouldn’t do anything, it would hurt. The knee then started ‘locking’ (what we now know was severe dislocations), so I went back to my crutches and back to my orthopeadic consultant. Only this time, my consultant said he was “out of his depth” because he’d never dealt with anything like this before and sent me for a second opinion.
So, I was send to a different Orthopaedic consultant who wanted x-rays and scans of my left knee so he could see if anything was broken. It came back normal. This new consultant then decided that all of my pain and physical symptoms were definitely either psychological problems, or me exaggerating a soft tissue injury. So he sent me on my way back to a different physiotherapist who shared the same attitude. So, for another nine months I was on crutches having regular scans and x-rays, living with chronic pain and fatigue and having no idea why, until one day the new orthopaedic consultant decides that he has no idea, and tells me to stick with the physiotherapy. The physiotherapist then discharges me, because clearly there was “nothing wrong” with me (At this pint my right knee was also dislocating as well as my hips). The consultant got confused and sent me back to the physio, who would then sign me off again (this happened about 5 times).
Then the physiotherapist suggests that I go to a children’s physiotherapy rehabilitation session each Thursday, to which I say “Whatever” because I was sick of her and the consultant at this point.
Worst decsion ever. Or best decsion ever. There are pros and cons.
wasn’t able to do much
injured myself more
Three new physios suggested EDS
Met other chronically ill kids
The head physiotherapist suggested I have an emergency review with the head of the department to see whether I could continue. The department head said I NEEDED to see a Rheumatologist NOW, and asked us to get our family GP to refer me. We saw the GP and she was said; this is quite obviously hEDS and put the referral through.
Due to the pandemic, I’m still waiting to see a specialist. But I’ll get there eventually.
The Ehlers-Danlos Society has started the photo-a-day challenge for EDS & HSD awareness month, so here’s Day 1.
Hello there! My name is Grace, I’m 16 and I’m from the UK. I’m passionate about education, history and health sciences. My ideal career would be in medicine, and I would love to become a neurologist, but this may not be possible due to my illness. So another plan for me is medical pathology because the research field is fascinating.
I live in the North East of England (or, God’s country as my Grandmother would call it), and come from a long line of manual labourers who worked in coal mines, brickyards, steelworks and shipyards. My heritage is actually 58% Celtic, with both sets of great-grandparents coming from Scotland and Ireland. The next massive majority of my genetic makeup is Scandinavian, something which an Orthopaedic surgeon blames for my EDS: “it’s very common in those with Viking heritage” (I have no idea what he meant by that, but he was a bit of an oddball if I’m honest)
My hobbies include: listening to music (words cannot describe my music taste, I’ll listen to anything), I used to play the drums (though not as much anymore), I love to read, and I’m a member of Girlguiding UK (and training to be a Guide leader) and I have pen pals that I write to across the world.
I hope you’ve enjoyed my little introduction of myself, and I’ll see you guys in the next post!
The month of May is Ehlers-Danlos Syndrome (EDS) and Hypermobile Spectrum Disorder (HSD) awareness month. I thought I’d dedicate a whole post on FAQs about EDS and HSD.
What is Ehlers-Danlos Syndrome?
Ehlers-Danlos Syndrome is a group of thirteen connective tissue disorders which are caused by a gene mutation which produces faulty collagen. Each different type of of EDS has a different identified gene (except for hEDS, whose gene is unknown) and set of diagnostic guidelines.
What is Hypermobile Spectrum Disorder?
Hypermobile Spectrum Disorders are a group of conditions related to joint hypermobility. HSD are intended to be diagnosed after other possible answers are excluded, such as any of the Ehlers-Danlos syndromes including hypermobile EDS (hEDS). HSD, just like hEDS, can have significant effects on our health.
What are the symptoms of EDS?
There are a lot. Like, a lot. The symptoms of EDS vary in each type, and EDS often presents alongside a varied amount of conditions such as Postural Tachycardia Syndrome (PoTS), Fibromyalgia, Chronic Fatigue Syndrome (CFS) and Mast Cell Activation Syndrome (MCAS). The most prevalent symptoms across all types of EDS are: joint hypermobility, stretchy skin, and skin that bruises and breaks easily. But, EDS can affect people in different ways. For some, the condition is relatively mild, while for others their symptoms can be debilitating and disabling.
What are the main types of EDS?
As mentioned previously, there are thirteen types of Ehlers-Danlos Syndrome. The most common type is Hypermobile Ehlers-Danlos Syndrome (hEDS). Other common types of EDS include; Classical EDS (cEDS), Vascular EDS (vEDS) & Kyphoscoliotic EDS (kEDS).
Is there a cure or treatment for EDS?
The short answer: no.
The long answer: There are treatments for the symptoms that EDS causes such as painkillers for chronic pain, etc. Physiotherapy is often used to try to strengthen muscles around joints to avoid injuries or manage pain. Occupational therapists can provide proper equipment to help manage day to day activities. Certain types of EDS require regular scans to check for damage to organs. But there is no ‘cure’ for EDS.
I hope that you’ve enjoyed reading this blog and have potentially learned something! I’m going to play catch up with some posts for the photo-a-day challenge for EDS awareness month. So stay tuned for those!