My name’s Jess and I’m a 21-year-old girl from Perth, Australia. When I was 16 I started getting a lot of unexplained pain and fatigue. My activity and stress levels had just dramatically increased after I began studying a certificate IV in musical theatre whilst completing an intense workload at school for year 11. After a month or so, my body began to crash. I had been working it to a level that was too much, so as a result I began to get pain in my hips, which then progressed to other joints & areas, and my existing back pain got worse. I was tired all the time, and getting more sleep didn’t help.
After the initial investigations into my hip pain found nothing, I was put on the waiting list for many specialists. After seeing one after the other I only felt more confused, misunderstood and scared. Many different doctors gave me many different labels; it felt like they just wanted to fit me into certain categories. As a result I was repeatedly misdiagnosed, and I was never given a clear picture of what was happening to me. All the while all my symptoms were just getting worse. I had become extremely debilitated; I would remain in bed throughout the day, and would use crutches if I ever needed to leave the house (I refused a wheelchair).
All of my test results came back normal, so sometimes people would question if I were actually sick. Not feeling believed when I desperately needed help was one of the hardest things to deal with.
Determined and desperate to find someone who could explain what was happening and put me on the right track to recovery, my family and I kept on searching. Eventually we came across my current rheumatologist (the 4th one I had seen) and from there things started to seem clearer. He recognised and diagnosed me with Joint Hypermobility Syndrome (JHS) with secondary Fibromyalgia. Most importantly, he was able to explain why it had suddenly developed, when up until a few months prior my life had been normal.
I was born with Joint Hypermobility (having unusually flexible joints due to a more elastic type of collagen) that had always been an asset to my dancing career. However, my sudden increase in activity and stress challenged my body to an extent that was too extreme for it to cope, even though I had always been fit and athletic throughout my life. This triggered the development of JHS; the onset of widespread neurogenic and musculoskeletal pain and fatigue.
I was initially scheptical to include the secondary diagnosis of Fibromyalgia. I had been diagnosed with Fibromyalgia by multiple doctors before, but it had just seemed like a category that put me in because they couldn't figure out anything else to label it. I had thought it to be a bad diagnosis and the word had (and still has) a lot of negative connotations to me. But I have realised that it encoumpases a wide range of pain and other symptoms that I feel everyday don't feel can exclusively attribute them to my JHS. So whilst it has always been on my medical records, I have only reccently accepted it myself, and chose to include it in my blog.
Most doctors were able to recognise the associated pain and fatigue symptoms, but few recognised or understood the link to my Joint Hypermobility. By missing my underlying cause, their treatment suggestions revolved around trying to manage my symptoms, not improve my overall condition. A hint would have been that even after months of medications (anti-inflammatories, codeine, neuropathic meds) my symptoms hadn’t improved at all, instead I developed numerous side effects including acid reflux and stomach problems which still bother me today. And in the mean time, my body was getting weaker and weaker.
After learning the underlying reason for my symptoms, I had a greater understanding of why certain things like aerobic exercise, strength & tone, movement awareness & control, a wholefood & healthy diet, and proper sleep would help in my recovery. With this new understanding, my reason for exercising changed. I began to do these things because of my drive to get better, rather than because it was what I was told to do. I had a newfound sense of self-motivation and empowerment, all because I felt I understood what was going on. I had a new understanding of why these things would help, and perhaps most importantly I felt that I had the power to change my situation.
I resumed my exercise program with new insight; I was motivated to keep going and trying even when I had setbacks, and there were multiple setbacks. Even when I had bad weeks, I knew that in the long run, doing these things would help me.
I started with 5 minutes on a stationary exercise bike a few times a week, and then I gradually increased it to 8 minutes and then to 10, always in small increments. The key thing was only doing on a good day what I could on a bad day. In other words, if on a bad day I could only manage 5 minutes exercising, then for the rest of that week, even when I felt I could do more, I would do just 5 minutes. I found that if I altered my exercise based upon how I was feeling at the time then I would push myself too far and my body would crash for the next few days/weeks depending on how far I had over done it. I used this graded exercise program to 'desensitise' my nervous system to movement.
It was never a linear journey. There was a long while where I bounced back and forth between 5 minutes, 8 minutes, 10 minutes and back to 5 minutes, and there were even weeks where I did next to nothing because I felt so discouraged and sore. But slowly I began to bounce back and forth between 10 minutes, 12 minutes and 15 minutes. So even though I would have good weeks and bad weeks, I was still steadily increasing the amount of exercise I could do. And by increasing my exercise capacity, I was also increasing my capacity for everyday life.
Since then, in 2014 I developed symptoms of dysautonomia / POTS (Postural Orthostatic Tachycardia Syndrome), affecting all the automatic process in my body (digestion, heart rate, blood pressure, breathing, hot and cold regulation) meaning I have a really fast heart rate when sitting or standing (high 90's to over 100 bpm) which could be a contributer to my fatigue levels, as well as low blood pressure so am prone to getting really dizzy and faint, especially when changing postures. If you want to know more, I go into more detail in about me: dysautonomia and about me: diet.
In 2015 my headaches and migrains took themselves to a whole new level, and are still just as bad now at the beginning of 2016. I'm sort of proud to say that these are my biggest problem currently, because it means that the rest of me - my other pains - are getting better. I'm waiting to see a neurologist for management of my headaches/migraines.
Through all of this I've learned even more how to accept where I am at, and to listen to how my body is feeling rather than fight it. Taking the struggle out of this has really helped me manage my pain and be accepting of my limits.
And of course there are always ups and downs with my exercise routine and pain levels. Although my condition still requires daily management, now four-and-a-half years on, I have almost completed my third year of a five year double degree in Physiotherapy / Exercise and Sport Science. I understand the importance of pacing, and incorporating exercise into a daily schedule, even when life gets busy and tough. I see a physio most weeks who I work with to continually develop my exercise program (involving pilates, cardio and weights). I walk my dog often and spend a lot of quality time with my family and friends. I live a wonderful life and have come so far from where I was four-and-a-half years ago, and am still gradually improving.
There are always ups and downs, but as long as the ups are always slightly greater than the downs I know I am on the right path.
My blog is me sharing my story as well as the things that have helped me and inspired me to keep going. I hope by doing this others can gain the knowledge, understanding, empowerment and self-motivation they need to persevere.
“Turn your face always towards the sunshine, and shadows will fall behind you” – Walt Whitman