Rachel Harding: How fibromyalgia has impacted me

Hi! My name is Rachel and I am 20 years old. I am currently in my third year of my Primary Education degree. I started getting symptoms of fibromyalgia in January and was diagnosed in August 2019. I feel that I am a different person to who I was before fibromyalgia. This isn’t a bad thing, though, as over time I have learnt to love the person that I have become.

Before becoming unwell, I was very social and was always going on nights out. I had finally found my confidence, something I haven’t had before. I had lots of energy, and was always on the go. My studies were going very well, and I was getting good grades that I was so proud of. My goal of going to university was so I could become a primary school teacher - which had been my dream for so long. I felt so content and happy, and to have this part of my life snatched from me was so upsetting. This was something I found so difficult to understand when I was first diagnosed.

I started feeling unwell in January when I was on a school placement - I was so weak and rundown, and was absolutely exhausted. I was becoming very forgetful too - which made remembering things to do on my placement a real struggle. It wasn’t until March when it was found that I had a vitamin D deficiency. When I was put on supplements, I didn’t feel any different. My levels rose, yet I was still extremely fatigued and weak. My doctors kept putting it down to vitamin D, until one of them recognised it needed further investigation. I had so many blood tests, each came back clear. At this point my symptoms were becoming worse - fatigue, agonising pain, body weakness, processing and cognitive issues etc. In May I was referred to a rheumatologist, with my appointment being in August. This was such a long wait, which was so scary as my symptoms progressed further. I had numbness, tingling, bad brain fog and had a big rise in anxiety. I was scared at what was happening to my body. I wasn’t in control of my body and it was so unsettling. At my appointment, the rheumatologist said that I have symptoms of fibromyalgia, and gave me information about it. I was absolutely devastated. At 20 years old, I never thought I’d be told I’m not going to get better. The pain I want to go away is going to be with me for the rest of my life. I felt like I was grieving for the ‘old me’ before fibromyalgia. The life I know I will never get back. It took a lot to pick myself up. I was encouraged to make my life as great as I can, enjoy every moment and be proud of what I’ve achieved.

Right now, I’m still at university. I was advised to defer the year, but I didn’t want to do that. I’m determined to battle through this course and graduate. I have had to make some adjustments to my time at university, but I won’t let this put me down. There has to be some bumps in a journey! Fibromyalgia really impacts on my ability to study - the difficulties processing information, the sensitivities to different things, brain fog, and the pains which make me nauseous. But my university are being so supportive, which is so helpful and reassuring! I wouldn’t have been able to do any of this without the support from my parents, boyfriend and some of my friends. It’s been hard on all of them to see my health deteriorate, but their encouragement and support has made me have the strength to keep fighting. During my battles, there has been so many people in my life that have chosen to be unsupportive, and have been doubting the fact I’m unwell. This lack of understanding has been so upsetting since I have lost friendships, but I don’t want negative influences in my life, and focus on the people who build me up!

I am still understanding and learning about my fibromyalgia. It’s a hard battle, but believe me, it will pay off. I have learnt to be proud of myself for everything I do. When I’m having a flare day, I listen to my body and do all I can. Just having a shower can be absolutely tiring and can wipe out all the energy I have. Rather than putting myself down, I feel proud I was able to do it. This is one tough battle to face, but it’s so rewarding to know how much you can achieve whilst living with it. Even if I’m having a bad day, I always try to focus on the good, small things in each day. Making memories is my favourite thing to do, and I always reflect on these to bring me lots of positivity. As I said earlier, I’m not the same person as I was before having fibromyalgia. I prefer me now. I’m no longer comparing myself to the old me, as there’s no reason for me to. Fibromyalgia is such a nasty, debilitating condition, but I won’t let this define me.

To anybody who is living with fibromyalgia, or is in the process of being diagnosed, keep going! You are not alone in this fight. There are so many people who you can reach out to during your journey. It takes a warrior to fight something like this. You’ve got this!

FMA UK Statement on Medicinal Cannabis

From our posts, you should be aware that we are eager to support research looking into all treatment options that could potentially help people living with fibromyalgia. We are registered stakeholders in various consultations by NICE, the National Institute for Health and Care Excellence, who provide national guidance on the use of medicines. Our involvement includes participation in their guidance on the use of medicinal cannabis. We have also linked up with other lobbying or research groups in this area too. Further research is required to better understand the benefits (and consequences) of alternative therapies for fibromyalgia, including medicinal cannabis.

Firstly, we would like to clarify some definitions. According to the NHS website ( https://www.nhs.uk/conditions/medical-cannabis/ ):

"Medical cannabis" is a broad term for any sort of cannabis-based medicine used to relieve symptoms. Many cannabis-based products are available to buy online, but their quality and content is not known. They may be illegal and potentially dangerous.

Some products that might claim to be medical cannabis, such as "CBD oil" or hemp oil, are available to buy legally as food supplements from health stores. But there's no guarantee these are of good quality or provide any health benefits.

And some cannabis-based products are available on prescription as medicinal cannabis. These are only likely to benefit a very small number of patients.

CBD oil is a product that comes up in conversation frequently and we have been approached by quite a few suppliers and other groups asking if we will promote the use of specific products. While we will do what we can to advocate for those who are affected by our fibromyalgia, it would be inappropriate for us to advertise specific products which do not have sufficient clinical evidence behind them. We are aware of the current legislation from the European Commission that CBD oil is governed by and its status as a Novel Food. The suppliers are required to prove it is a safe product and are not allowed to market it with claims about its ability to treat conditions such as fibromyalgia. It is not to be marketed as a medicine.

Unfortunately, we have found that there are a number of suppliers entering the market in the UK and not following the rules or bending them in ways to increase sales. We are not a regulator, but we do feel that there are some that are putting their sales before ethical and moral duties. Testimonials, false claims, and insinuating brands within a disease community seems to be some of the methods currently used. We are not saying that all suppliers are doing this, as they are not and there are some that share common goals advocating for further research to see if certain products help people with fibromyalgia, doing so in a rigorous and evidence-based manner. Some companies are self-regulating and looking to follow a set of agreed guidelines to improve processes, which is reassuring.

Given some of the practices that FMA UK have seen recently, the charity felt it was right to publish this article which states that at this time, we are not supporting any CBD suppliers or sellers with referrals or affiliates, and any that claim that a portion of their sales comes to the charity is incorrect. If you see anything that suggests this, please get in touch with FMA UK directly. You can take a look at our online platforms below so that you are familiar with our branding and contact details. The information that we provide is impartial, unbiased and based on good quality evidence, adhering to the Information Standard.

Please check sources of information and what websites or social media platforms are saying so that you are sure the information receive is factual and unbiased. Only the sites via the links below are managed by FMA UK. Any others that sound similar are not.

https://www.facebook.com/ukfibro/ (FACEBOOK)

https://twitter.com/fmauk (TWITTER)

https://www.instagram.com/fma_uk/ (INSTAGRAM)

https://healthunlocked.com/fibromyalgia-action-uk (HEALTH UNLOCKED)

Kayleigh Thomson: Living with Fibro

My name is Kayleigh, I’m 22 years old and have been diagnosed with Fibromyalgia since I was 20.

I’ve been experiencing pain since I was a child, but it was always put down to growing pains. Then at the age of 12, after my parents pressing for answers, I was diagnosed with Hyper mobility syndrome. So, since that diagnosis every ounce of pain I experienced was put down to that and treated with anti-inflammatory pain killers. It wasn’t until I was around 17/18 the pain was so bad it was becoming bed bound and the pain was lasting longer and longer each time. We were back and forth from A&E, sometimes resulting in stays in hospital until in October 2017 I was that poorly my Mam put her foot down and demanded further tests and a diagnosis. That’s when they came back with Fibro.

For me personally I have widespread pain which can leave me bed bound and cared for by my family sometimes for weeks on end. I can’t walk, or even stand up unaided, I can’t wash myself, make myself food or dress myself.   I get migraines, bloating, numb limbs, sensitivity to light and touch as well as so much more. It’s awful and sends me to a really dark place sometimes, I’m so lucky I have my amazing family to pull me out of that.

I also notice how bad it doesn’t just affect me but also my family, I see my boyfriend getting upset and tired but staying strong to help me. I see my mam, holding everything together but being so angry that this is happening. I also see my dad, who understands my pain as he also is in pain, but he wishes he could take mine away. I see my little sister, caring for her big sister and not even thinking anything of it. I even see how it effects my dog and how he won’t leave my side and puts his paw on my hand when I’m crying.

Fibromyalgia has completely changed mine and my family’s lives. I was working to my dream career and about to achieve it, but that’s now been taken away from me as I’m in too ill health to carry out the role. It’s gave us financial problems as I now can’t work as much as I did. It’s gave us all a different outlook.

I have gone from being an outgoing 20-year-old who loved to go out to being sometimes bed bound, with my own wheelchair, walking stick, medicine cupboard and a GPs receptionist who knows my name. But I’m one of the lucky ones with a supportive, loving family to help me through.

Case Study Requests

You may have seen a previous case study on our site or social media. Positive and informative case studies can help others that are struggling. True accounts can help people identify with others, and these studies can raise awareness as well. All of these case studies come from people with the condition and start by telling others about your journey. These can featured in media articles or used in our campaigns. 

If you feel you have something that you can contribute then please fill in the this Case Study request Form.

Dan Bradshaw: Why I am fundraising for FMA UK

My mum first became ill with fibromyalgia about 11 years ago. We didn’t know what it was, it wasn’t diagnosed until a couple of years later as she had other health issues that doctors believed what could be causing her pain, exhaustion and complete lack of energy. As a nurse who was regularly on her feet, the condition stopped her from working as there were some days where she had no energy to even get out of bed. However, through persistence  and determination over the past decade she has managed to get back to work and even do some regular gentle exercise

Me and my mum used to run regularly together, however it is too uncomfortable for her now as she suffers from hip pain if she’s on her feet too long. I’m running the Brighton marathon this year to help raise awareness about fibromyalgia as there are so many people who have never heard of the condition, let alone know what symptoms include and how it can affect people’s daily lives. Whilst my mum has improved dramatically, she still suffers from hypersensitivity, joint and muscle aches (particularly in the shoulders and hips) and profound fatigue. As she used to be extremely active this can be frustrating as there are days she wants to go out and exercise but her body won’t allow it

Fibromyalgia is draining both physically and mentally for all people that suffer with the condition and by running a marathon this year I hope I can raise money and awareness that will hopefully lead to more effective treatment and understanding

Dan Bradshaw: Why I am fundraising for FMA UK

My mum first became ill with fibromyalgia about 11 years ago. We didn’t know what it was, it wasn’t diagnosed until a couple of years later as she had other health issues that doctors believed what could be causing her pain, exhaustion and complete lack of energy. As a nurse who was regularly on her feet, the condition stopped her from working as there were some days where she had no energy to even get out of bed. However, through persistence  and determination over the past decade she has managed to get back to work and even do some regular gentle exercise

Me and my mum used to run regularly together, however it is too uncomfortable for her now as she suffers from hip pain if she’s on her feet too long. I’m running the Brighton marathon this year to help raise awareness about fibromyalgia as there are so many people who have never heard of the condition, let alone know what symptoms include and how it can affect people’s daily lives. Whilst my mum has improved dramatically, she still suffers from hypersensitivity, joint and muscle aches (particularly in the shoulders and hips) and profound fatigue. As she used to be extremely active this can be frustrating as there are days she wants to go out and exercise but her body won’t allow it

Fibromyalgia is draining both physically and mentally for all people that suffer with the condition and by running a marathon this year I hope I can raise money and awareness that will hopefully lead to more effective treatment and understanding