‘I lost control of my legs. ‘Call an ambulance!’ My tongue started to go down my throat. The pain was excruciating.’: Chronic illness warrior shares journey with fibromyalgia, POTS

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“These last 2 years have been a massive roller coaster for my health. But I like to speak openly about my journey to raise awareness for my illnesses and reassure others they are not alone. My name is Rachel, I’m 21 years old, and I live in Lincoln, UK. I am originally from Northamptonshire but moved to Lincoln in 2018 for university and since graduating, I am still living in this beautiful city with my boyfriend, Adam.

Courtesy of Rachel

Let’s go back right to the start and delve into my childhood. I was very happy, loved going on holidays with my mom and dad – especially to Devon and Cornwall – and was very funny, if I say so myself! However, I was very shy and was a very anxious child. I was quiet and really didn’t feel comfortable speaking up at school. Apart from being very clumsy and fracturing bones, and my clicky hips, I didn’t really have any major health issues. So when I was at primary school and we had check-ups with the nurse, I was absolutely terrified when they told me I had a very high heart rate and was requested to have further tests. With being an anxious child, you can imagine how much I hated going to the doctor and how hysterical and nervous it made me. I had numerous tests done and the pediatrician told us I had a naturally fast heart rate.

Courtesy of Rachel
Courtesy of Rachel

I was diagnosed with fibromyalgia in 2019, and while all of my symptoms developed at the beginning of the year, there were symptoms I had throughout my time in secondary school. While these symptoms were nowhere near as severe as they are now, they were troublesome and impacted my time in education. I would experience growing pains that wouldn’t go away. I experienced joint pain quite often, which caused me trouble during my dance lessons. I had difficulty concentrating, remembering things, and being forgetful, and would have issues remembering instructions given to me. This, as I know it now, is brain fog, one of the most frustrating symptoms of fibromyalgia. This made exams very difficult. I refused to go to doctors about anything because I was still so terrified of them. 16-year-old me would be so proud of me now. I’m doing things I never imagined I could.

Courtesy of Rachel

Let’s skip forward to a few months before my health started to deteriorate. I had confidence for the first time in my life! I was in my second year of university and had a very good social life and was out partying a lot. I was happy and I had finally found myself. It was a very good time in my life. I had good energy levels and could (somehow) be on a night out until 3 a.m., and still manage to make my 9 a.m. lectures. I never thought, only a matter of months later, I would be unable to attend my lectures at all, even with a 10-hour sleep!

While I was very happy and more confident, I was still terrified of going to the doctor and would overthink any issues with my health. I was 19 years old and was unable to take tablets. It’s something I struggled with since being young. The thought of taking tablets terrified me and I just didn’t know how to take them. I was taking Calpol, the only thing I could take. If I had to take paracetamol, I would break it up and mix it with yogurt – it was gross! Again, this is an aspect of my life that changed so much, so quickly. Within one year after this, I was taking five prescribed medications and very strong painkillers.

Courtesy of Rachel

At the beginning of January 2019, I became unwell with Scarlet Fever. After a week, I recovered and another week later, I started my 7-week teaching placement in a nursery. This was a terrible decision because I truly believe this was a big factor for me developing fibromyalgia. The fatigue I experienced was absolutely horrible. Having to come back home and plan and prepare activities for the next day really took it out of me. Thankfully, I met Adam right before I started to be ill, and he was a big help with preparing things for placement!

My energy levels were so low, the energy I developed at university disappeared quicker than I could’ve thought. I kept catching illnesses. I’m pretty certain that for the entire 7 weeks, I had a sore throat and cold. My joints were aching so much – and the long days just made it worse. Straight after I finished my placement in March, I went to my doctor and had a blood test and it was discovered my vitamin D levels were severely low. I started my vitamins and my levels shot up so quickly, yet I felt the exact same, well – much, much worse. This is when I knew something was wrong.

Courtesy of Rachel

These symptoms only developed as the months went on. This made university a massive challenge. I was having to get extensions on all of my assignments, I was struggling to meet deadlines and struggling to attend lectures. I lost my social life. I couldn’t go out and party like everyone else. I became so isolated so quickly. I was receiving so much judgment from everyone around me and no one believed me. One friend commented to another saying I was ‘supposedly ill’ – which just sums up the judgments I received. I was too fatigued to attend birthday nights out, yet my friends acted as though I did it on purpose and hated me for it. I was so lost. I didn’t know who to trust. Unfortunately, this wasn’t the end of these sorts of comments. One friend sat me down and told me my illness was psychological and due to me being anxious and depressed. The hurt I felt was real.

Courtesy of Rachel

I was diagnosed with fibromyalgia in August 2019 by my Rheumatologist. While I thought getting a diagnosis would be a massive relief, it did quite the opposite. Secretly, I was hoping every single day I would recover and I would get my life back. But now I knew that would never be possible. I would have to battle through this horrible condition for the rest of my life. I am so thankful for my parents, Adam, and my true friends for being there and helping me through this stage. I don’t think many people are aware of the mental and emotional impact a diagnosis can have on someone. It is far from easy, and I feel for anyone else experiencing the same feelings as I did.

There are still so many things you will be able to do and achieve. Take yourself about any negativity surrounding your illness. I had one ‘friend’ ask me questions such as, ‘Will you be able to drive with fibromyalgia? Will you be able to work full time? Will you be able to have children?’ These questions were not ideal when I was struggling to accept my diagnosis and only made me completely doubt my future abilities. I advise anyone reading this to focus on the now and try not to worry about the future, as it’s uncertain what will happen and there’s no way to know until it happens.

Courtesy of Rachel

Soon after, I came back to university to begin my third year and this worked as the perfect distraction. I started to get my life back a bit more. I sort of became used to my body now and learned more about my symptoms and just tried to own them really. I started taking two medications that really proved to benefit me. I was experiencing horrible nausea though, which made it difficult to eat, ultimately causing weight loss. I started an anti-sickness tablet called cyclizine. However, on the first day of taking it, my heart rose to 160 beats per minute and came off straight away. My doctor then decided to put me on another anti-sickness tablet called metoclopramide – taking this was one of the worst decisions I’ve ever made.

Courtesy of Rachel

I was having a day out with my boyfriend and his parents and I started to feel very unwell. While we were walking, I started to lose control of my legs. I couldn’t move them to walk, as though there was some force stopping them from doing so. My feet were being pushed inwards, the pulling sensation was so painful. I was so scared, and then my tongue started to go down my throat. I couldn’t talk and I was struggling to breathe. We called for an ambulance and the first responder arrived and was very concerned and at that point, my heart was going past 156 and the pain was excruciating.

In the ambulance, my tongue started protruding out of my mouth and my jaw was being so stretched and it was close to dislocating. They put a cannula in my hand and gave me different medications but none of them helped. I was rushed through to resus where the pulling was so bad, it was moving me down the bed! They took blood tests and then put a cannula in my arm – and this was so painful! The doctor then established I was having a dystonic reaction and tachycardia due to a severe reaction to metoclopramide. At this point, my heart was staying at 170-180 bpm, but they gave me medication that reversed the effects of the metoclopramide and settled the dystonia. My heart was struggling to settle and they decided to keep me in overnight. I luckily was discharged the next afternoon with a new beta-blocker to settle my heart.

Courtesy of Rachel

This experience was a big turning point for me. I faced all my fears and felt like a boss woman! I didn’t panic and remained calm, and was chatty once I finally could talk. I thought of my mom the entire time I was in the hospital. She is the strongest woman I know. I admire my mom and her strength throughout everything she’s been through. I wanted to be a brave and strong girl just like my mom, and it worked! In the photo of me taken in resus, I’m smiling even before the medication started to work. I stayed as positive as I could through one of the scariest, most painful times of my life – I am so proud of myself for this.

Courtesy of Rachel

I became happy to share my experience and my journey because I wanted to make people aware of the risk, and impact of everything I’m going through. This saw the birth of @myjourneythroughfibro! In this year and a half, my account has grown so much and I am so chuffed at the response I have had. I like to think I’ve been able to help people and help educate people on the impact of multiple chronic illnesses. Making my account has been one of the best decisions I’ve made.

Unfortunately, this is not the end of my health journey, and from the beginning of 2020 to now, my health has only gone and gotten much worse. But I must say, this has been the happiest time of my life. I’ve found myself again and I’ve learned it is still possible to have good days.

Courtesy of Rachel

Let’s start the next chapter of my health journey. At the end of December 2019, I developed horrendous spine and lower back pain which was making it difficult to walk, sit down, and lay down, and the pain was making me feel so nauseous and lightheaded. This came on suddenly, I did absolutely nothing to trigger it. Urgent care sent me up to A&E for further testing as they were uncertain of the cause. Yet, I sat in A&E for hours just for them to do a blood test and tell me it was muscular without actually looking at my back! I had to plead with my Rheumatologist to scan my spine and hips, as my hip pain was horrific also. I had an X-Ray on my pelvis and hips, and an MRI on my spine. My results showed I had a Cystic Lesion on the L4 of my spine. While they said it may be incidental, all of the symptoms matched up and it just made so much sense. I soon named this cyst Cecilia, as it made it much less scary for me. I had a CT scan done on the location of the cyst and an isotope bone scan which terrified me – but I did it! This scan basically looked to see if there were any other cysts in my body and to determine whether this cyst was cancerous through a cannula in my arm pumping radioactive stuff around my body.

It was a strange experience, but thankfully, the results came back completely normal! My Rheumatologist was very dismissive and I was then referred to a neurosurgeon in Sheffield, who explained clearly what the scans showed. The cyst is there, but there were no signs of it affecting the nerves or causing any damage. Since then, I’ve just felt abandoned by medical professionals. Just because a scan can come back clear, it doesn’t mean there is not an issue. The flare-ups of pain are getting worse and worse and are so debilitating. It’s scary and so tiring fighting for somebody to listen to my issue and take me seriously and try not to prove me wrong. I would not wish this pain on anybody.

Courtesy of Rachel

While this horrific pain was going on, I had developed numerous other minor issues and was trying my hardest to complete my third year at university – all while my fibromyalgia symptoms were heightened. University work flared my fibromyalgia up. I was having very bad panic attacks. I was putting myself down so much and worrying whether or not I would pass. I couldn’t attend lectures anymore, which made me miss out on lots of information. I’ve never been one to set high expectations, and at this point, all I wanted was to pass my assignments. So I did, and even more. I managed to graduate with a 2:1 in Primary Education and I cannot tell you how thrilled I am to say that. To anyone else at university or planning on going to uni – I hope my case can provide you hope and reassurance you can do it!

Courtesy of Rachel

For about 8 months of 2020, I had recurring UTIs that made me feel absolutely horrific. This led to a referral to a urologist and an ultrasound on my bladder. I was placed on long-term antibiotics which really helped them and since then I have not had an infection! I had flare-ups of my asthma which was uncontrolled. I tried different inhalers and was placed on yet another long-term medication to help. I also had a B12 deficiency just after summer, which made me feel very poorly, fatigued and weak. I was having the six injections over 2 weeks and I ended up having a reaction to the injection – you can tell my body just loves to treat me! And in December, I developed bursitis in my hip, which we had to go up to A&E for because the pain was unbearable at that point! But at this point, I wasn’t getting upset when these things were happening because part of me was used to it. I had no reason to grieve now. I just tried to focus on the end goal of these issues fading. They’re just many bumps to our little roller coaster we have going on!

Courtesy of Rachel

If you remember at the start of my journey I mentioned, I was told I had a naturally fast heart rate. Well, this has developed massively this year. My heart rate started increasing very high whenever I stood up and was becoming very lightheaded and had very low blood pressure. On one occasion my blood pressure went down to 63/53! I had major two incidents – one during a blood test and walking to the bus stop for an interview. My heart was pounding out of my chest and was making me very lightheaded and weak. I couldn’t get to my job interview and I was absolutely gutted, and I was so scared for what my body would be like.

‘What if I pass out? What if I cannot get my heart rate to go down?’ Unfortunately, these are the questions that still stand now.

Each time I stand up, I feel like I could pass out. My heart spikes at random times during the day, and even at night time, which scares me massively. It terrifies me because when I’m asleep I cannot control it. I had numerous tests done on my heart in 2019 after my dystonic reaction, and this was the evidence the cardiologist used to diagnose me with POTS (Postural Orthostatic Tachycardia Syndrome), despite these being passed off at the time. This is a debilitating and life-changing condition, and I am still trying to get used to the impact POTS has on my body. I’m having to adapt my life. And while I’ve been having to rest and recover these last 2 months, I’m trying to stay as positive as I can and keep myself focused on the day all of these symptoms will be controlled. I will get there. One day. Just have to keep going.

Courtesy of Rachel

This has been a mad, overwhelming couple of years. My life has changed completely in such a short amount of time. I’ve faced some of my biggest fears and have done things I never imagined I could. I am so proud of the young woman I have become. And do you know what? I am the happiest I have ever been. I’ve learned how I can still enjoy and live my life While living with numerous chronic illnesses. I never thought this was possible, but it is. Sharing my story on Instagram has helped me to accept my illness while also raising awareness for my conditions. There are better days ahead, believe me. Keep going and keep smiling!”

Courtesy of Rachel

This story was submitted to Love What Matters by Rachel of Lincoln, UK. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more touching stories like this:

‘My legs froze. I collapsed. ‘It could be worse.’ Embarrassed, I was carried away in front of an entire field of people.’: Fibromyalgia warrior raises awareness for invisible illness

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