Chronic Fatigue Syndrome, Fibromyalgia, Fibromyalgia Blog, fibromyalgia warrior, Health, Spoonie

Diagnosed with Fibromyalgia at 20 years old was truly devastating by Rachel Harding

Fibromyalgia warrior, Rachel Harding, suffers from Fibromyalgia. Rachel has added her face and story to Faces & Stories of Fibromyalgia. I am so grateful that Rachel has shared this, as each story told raises awareness and helps fellow sufferers.

You can connect with Rachel by following her on Instagram.

Rachel Harding

I first started to get my fibromyalgia symptoms in January 2019. I was feeling extremely weak and had a severe lack of energy. During the beginning of this, I was told I had scarlet fever, as I had a rash and felt so poorly. But now, doctors are suspecting the rash was the start of fibromyalgia – but it’s all so uncertain! A few weeks later I went on a school placement as part of my university course, and it was on this that I really noticed I wasn’t well. I was leaving the school exhausted and felt so fatigued. Straight after the placement, I found out I had a severe vitamin D deficiency and was told it was this which was making me feel so unwell. I was put on supplements and a few weeks later found out my vitamin D levels had raised, but I was feeling worse! It was so frustrating having doctors shrug everything off when I was so scared of what was happening to my body! It took months of investigation until my doctor referred me to a rheumatologist to investigate further. My symptoms were progressively getting worse and were interrupting more with my daily life. The wait for my rheumatology appointment was 3 months. My family and I were counting down the days to the possibility of getting answers. However, I went through such a tough time with my anxiety during this wait. I was scared what was happening to my body and was so anxious as to what people were going to think of me, if I had to keep cancelling plans. I didn’t feel like myself anymore and found it so, so difficult to think positive. I just wanted the pain to go away. I was so emotional but felt as though I couldn’t control it. I couldn’t control how I felt, so it felt as though I really wasn’t in control of anything in my body. My doctor prescribed me my first medication which was amitriptyline, and I found these made my day slightly better, and relaxed my muscles too. This was a difficult part in my journey, but I feel proud that I kept on going, and got through it!

During my rheumatology appointment in August, I was told I had fibromyalgia. Being 20 years old and being told I am going to have this condition for life was truly devastating. The pain that I wished would go away was going to stay with me my whole life. I would never wake up without pain again. I had so many questions going round my head, including how this condition would affect my time at uni? How would I be when I’m at work? A diagnosis like this is completely life changing. For days afterwards, I was so upset as it felt like I was grieving for me, the version of me that I would never get back. I had to try so hard to try and understand what was going on in my body and how I could adapt my life to it. Soon after, I moved back to university and tried my hardest to keep my head held high and not let fibromyalgia define me. The distraction helped me too, and I soon found the motivation to keep fighting. I had to start to find myself again and kept the determination in my mind. I came back to university feeling like a completely new person. I would say my illness has changed me. I’ve had to change a lot to adapt to it. Although I won’t let it define me, it is a massive part of my life. I’m not the same person I was before having fibromyalgia. But looking back at it now, I’ve changed for the better. I am completely happy with who I’ve become, and I prefer the new me. Whilst settling back in to uni, I soon started some new medication, pregabalin and found the side effects were awful, but they were worth it for the benefits. Over a few weeks my mindset had improved massively. It was such a journey, but I was so pleased with how positive I felt.

I’ve had a few problems along my journey so far, which have caused a massive impact on my journey through fibromyalgia. One significant one was when I was rushed to hospital in October due to a severe reaction to metoclopramide. This led me to be in a dystonic state, with my tongue close to going down my throat and then protruding out my mouth with zero control over it. It also caused a massive strain in my legs, which has been the worst pain I’ve ever felt. I was unable to control me legs, my ankles were going inwards, and they were that strained it was making me move down the bed! This was all made a lot worse by my fibromyalgia, and even now I don’t think I’ve made a full recovery from it. It’s had such a massive strain on my body, and since then, my hip pain has been much more severe and it has triggered horrendous back pain. This has been a massive impact on my journey, but I’ve kept on smiling and have celebrated everything I have been able to do since. It’s better been so difficult, but I can look back and feel so proud that I have got through it!

Right now, I’m still at university, and I’m in my last year. I’m so close to finishing, which I am so pleased with. I’m determined to complete my course, and will feel so proud once it’s done. I’m in the worst pain I’ve ever felt, and my symptoms are still progressing. I am studying Primary Education at university and this is so full on, but I’m counting down the days! I was advised by university to defer for a year because of my health reasons, but I decided to just keep going as much as I can. I don’t put pressure on myself when doing things like this, as it’ll make it so much more stressful which is very likely to trigger a flare. I aim to pass, because fibro affects me, I don’t want to feel disappointed if I don’t do great. Anything above the pass is a really fab bonus! I’m keeping my mindset as positive as I can, creating self motivation to keep going. I’ve has to learn to not compare myself to others on my course. I’ve taken the time to think about myself, and doing things because it’s what I aim to achieve, rather than comparing myself. It’s an important skill to remember and to learn, but I’ve felt so much better for it. I’ve had so many troubles with getting help from doctors, and this has been such a big problem for me. With my fibromyalgia, I’ve found that the doctors don’t investigate further because they just put the symptoms down to fibromyalgia, which I really don’t understand! University doesn’t help my health as it exhausts and drains me, but I’m hoping to persevere the best I can as I know it’ll all pay off. Mentally, I feel happier than I ever had before. Despite my symptoms getting progressively worse, I feel so happy and content. What I’ve tried to do is share my happiness more with people, and by being so open with everything. I’ve found that being so open has helped to relieve me of everything building up unable to explain fully what’s going on.

Last November, I took the decision to create an Instagram account called @myjourneythroughfibro to document and share my journey through the condition. Here, I have a great space to be so open and share my feelings, whether good or bad. I’ve shared my account with family and friends also so they can all see the full extent of my condition, and how it affects my daily life. When sharing my frustrations through the condition, I don’t think of these being negative because it helps to create awareness. By sharing with others how fibromyalgia affects us, it helps to create the further awareness we need. This is something I am so so passionate about, and I am going to push for greater awareness as much as I can. The response to my Instagram account has been absolutely incredible and unexpected. The love and kind comments by so many people has been so overwhelming. I’ve become part of a such an amazing and supportive community, and have met some incredible people! This account has brought me so much happiness and joy, and I encourage anybody to create an Instagram account if you haven’t already!

I wanted to take time to share my advice and support to anybody else who has been in the same boat as me, and is battling fibromyalgia. I know the journey may seem so difficult and scary, but believe me, you are so strong and you’ve got this. It may all seem very overwhelming, but you’re not alone. There are good times ahead and you’ll make plenty of happy memories. Reflect on all the memories you’ve been able to make whilst being unwell. Treasure these happy memories! It’s okay to feel upset and to grieve, it’s a completely natural response. Please reach out to somebody if you are feeling low about it all. I’m only a message away and I’m always here to listen! I hope that you can find a doctor who can support you through everything and completely understands. Also, please check your medication your doctors hand out – they hand them outs like sweets sometimes! I’ve learnt that it’s going to take a while to be on the right dosage of meds, as the effectiveness reduces over time. I’m still trying to find the right dosage of my meds, but I know it’ll take time and it’ll be worth it in the long run! I’ve also lost a lot of friends throughout my journey which sucks. Some people did not believe I was actually unwell, simply because they could not see it. I’ve had remarks made about me, and some upsetting comments. I’ve got rid of any negativity from people, and have avoided comments like this. I didn’t want to surround myself in things like that as it would just drag me down. If anything, it’s made me feel extremely grateful for the people who have stuck by me through everything. I’ve learnt who the true and legit people I have, especially learning who my real friends are! It’s opened my eyes a lot, and I am so lucky to still be surrounded by so many incredible people!

I believe that my positive mindset has helped me get through a real tough journey so far. I refer to it as my journey due to it not being the start, or the end, it’s just my journey and route through my life-long condition. Through my journey I can reflect on every stage of it and how I have built on it. This is what helped me think of my Instagram account name – @myjourneythroughfibro. I also refer to it as my journey, as I’ve learnt everybody’s experience with fibro is different. Our journeys are unique and are not the same as somebody else’s. My journey is ongoing, and I feel that in such a little amount of time I have progressed so much! I’ve come a long way, as you can probably tell from my story! I want to share this positivity the best I can, I want everyone to know that there’s good times ahead and to keep fighting! Please keep fighting, you’ve got this! Reflect on the good things that happen every single day, no matter if it’s big or small. Do more of the things you love, and surround yourself with as much happiness as you can. I’m going to do all I can to share happiness and positivity with everyone to help you through your journey through fibromyalgia. Please reach out to me if you need someone to talk to, I’m always here.

Thank you so much for reading my story. Take care everyone 💜

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