Laura

I spent a lot of my teenage years travelling across the country to see different specialists in the hope that somebody would know what was causing these leg problems. During my sixth form years, I was under the care of an orthopaedic surgeon who believed that this pain was the result of a sporting injury as I was very sporty at the time, doing ballet twice a week, badminton and athletics when I could. To test this, he advised giving up sport for four months and seeing what the outcome was. 

Four months down the line, I had developed chronic fatigue, severe joint pain, and depression. I struggled to get up in the mornings because I felt so ill and essentially wouldn’t leave my bed unless I had to, which was made easier by the fact that it was the summer holidays and I had nowhere to be. To see such a drastic decline in my health was devastating and infuriating, as it felt like I was further from the answers I so wished for. However, I was lucky that I was so active before this as it highlighted just how much my active lifestyle was off-setting a copious number of symptoms that had previously not been noticeable. 

Two years ago I had my first hip operation to correct the numerous labral tears that I had developed as a result of my excessive hypermobility, and found again that the same thing happened. Taking time to rest rather than push myself to do my physiotherapy left me catching the bus to university and sleeping most of the day away as soon as I returned from lectures.

How did I bounce back?

Already having years of ballet training under my belt really gave me the determination to get back on my feet; however, making improvements to your quality of life is just as much a mental battle as it is a physical one. I started slow with core exercises, focusing on simple pilates movements and stretches that I could do laid down in my bed. Similarly, I spoke to physiotherapists who provided small repetitive exercises to do that would work my muscles hard without stressing the joints to any extent. I returned to ballet, and whilst it was not as easy as it had previously been, my ballet teacher allowed me to drop in and out of exercises as it suited me to allow me to work myself back to where I was before, and to continue to improve. Eventually, I worked myself back to a place that was similar to the condition that I had been previously: still dislocating hips and experiencing leg pain, but my body had adjusted to the chronic pain and learned to block out a substantial amount of it. Equally, my fatigue improved as I was encouraging my body to want to rest through working my muscles. 

Where am I now?

Having adapted my lifestyle to allow for some form of exercise every day, I am now able to set bigger targets for myself. My first hip surgery took me 10 months to recover from and was hard work as I wasn’t dedicated to the sheer amount of personal responsibility there was to do my physiotherapy. My second hip took 2 months to recover and I was able to complete my first ever ultramarathon (100km) immediately after those 2 months. I set myself this target to raise money for EDSUK and I used that as my drive to get better; I did physio three times a day, did yoga and pilates throughout the day and went for very short steady runs when I was free of my crutches (emphasis on the VERY short!!). 

I have been extremely lucky to have received answers at a young age as to what my problems are and how to address them; whilst I did not receive an official diagnosis until I was 21, I had some idea of what I needed to do to improve from age 19 and I haven’t looked back; I now work out once a day whenever possible, and paired with dietary alterations I believe that I am able to lead a ‘normal’ life. 

Laura’s Helpful Tips

1. Schedule exercise into your day: Whilst it might feel that you have no time in the day to do exercise, exercise doesn’t need to be laborious, nor does it need to take hours out of your day! Set a time of day to do some form of exercise, whether that be first thing in the morning, on your lunch break or before bed.
2. Aim to do at least one activity a day: This may seem an impossible task on first thought, but it doesn’t have to be! If you aim to exercise seven days a week, then if you miss two days you have still accomplished five. If you plan to work out on Monday and Wednesday and you miss Wednesday for whatever reason, then you’ve only trained once that week and you risk losing the motivation to workout the following week. Make it part of your daily routine.
3. Find something that you enjoy- Mix it up! It is important to mix up your activities to work different aspects of your fitness. You may wish to do pilates one day for strengthening deep muscles, then going on the exercise bike the next to slowly train your cardiac system to respond better to normal movements like standing up or climbing stairs. Similarly, find something that you really enjoy and involve your friends and family! If I’m feeling down and don’t want to do exercise, I grab my sister and we play ‘Just Dance’ on the Wii- exercise shouldn’t be boring.
4. There is ALWAYS something that you can do: We all have our own journey with our conditions, and we all start at different stages along the exercise train. If your workout is flexing and extending your ankle muscles to strengthen your ankles enough to stand up, then start there! If you are bed bound, start with horizontal movements and work on that until you feel confident enough to be upright. Similarly, if you are going back to sports that you did before your condition declined, don’t be disheartened if your targets are lower than they used to be; learn your new platform and work your way back up. 

Some science behind the benefits of exercise

1. Endorphins are 18-33 times more potent than morphine: Endorphins are our body’s natural painkillers, and come with the added bonus that they do not have side effects as our body is built to respond to these drugs. Endorphins are released in high doses during exercise and can be really beneficial in reducing chronic pain. Whilst they may not be enough to allow you to stop taking your pain medication altogether, with time you may find that your tolerancy for pain increases and isn’t as debilitating.
2. Exercise can help with chronic fatigue: Exercising works your muscular system and your cardiac system, and encourages the release of adrenaline. Both adrenaline and endorphins are beneficial in making you more energised and alert during the day. However, exercise has the added bonus that it encourages your body to WANT to rest, and as such you may find that your sleep at night improves over time, resulting in you feeling more refreshed.
3. Stronger muscles leads to better blood flow: Your vascular system relies quite heavily on your muscles to pump blood around the body. In many of us with PoTS and EDS, our blood pools in our extremities, which can leave us feeling faint or resulting in fainting. Strengthening your muscles can act to increase the force of contraction of your muscles, allowing your body to push the blood around better and reducing the pooling in your feet, thus, reducing your PoTS symptoms.

Lastly, remember that I was where many of you are now.

It is easy to read stories like mine and forget that we struggled once to get to the place that we are now. This story is not to gloat about how much I can do, but to show you that setting yourself targets over time and making time for exercise can go a long way to making slight improvements to your health, whether that be allowing you to walk an extra 10m without the support of crutches, or allowing you to function better in the daytime due to decreased levels of pain and fatigue.