My Fibromyalgia Story with Advocate Lynne Said

My Fibromyalgia Story with Lynne Said. The blog banner for Lynne's story features a snapshot of her website called The Healing Within Fibromyalgia.

Hi, I’m Lynne. I live in Kingston-upon-Thames, England. Homelife is pretty chaotic as I am a single mum living with my four teenage sons. I have six children. My daughter (27) and my eldest son (21) have now moved out. We also have our two little rescue guinea pigs, Doris and Bonne who have me wrapped around their paws. One squeak and food arrives!

I was diagnosed with hypothyroidism and fibromyalgia in 2014.  

Lynne’s Fibromyalgia Story and Health Journey

My health story is more like a novel so I will try to keep it short but perhaps not so sweet.

I believe there are many possible factors to the onset of fibromyalgia, and I can just about tick all of the boxes.

Trauma is one of those boxes which I know had a huge impact on my health. I was living with chronic stress, anxiety and fear in an extremely challenging and abusive marriage for over eleven years. After I mustered up enough courage and strength to get a divorce, life became a little calmer. I say a little calmer as I was left to raise six children alone, which is when I noticed how exhausted I was.

There were days I could barely drag myself out of bed. My doctor thought I must have a post-viral syndrome, but I hadn’t been sick for years. I shrugged the suggestion off and carried on as usual thinking it would pass. I was wrong! 

The exhaustion became relentless and migraines more frequent. After a short time, the pain started. Cramps and stabbing pains in my legs became constant, all-over body aches, red eyes and blurred vision, stomach issues, and irritable bladder.

The list could go on, but I know anyone living with fibro knows just how long this list can get. I visited my doctor more times than I can count. He tested for various possible causes, but all my tests returned normal apart from one abnormality, my immune system was suppressed and no one could answer why. 

My fear grew because I knew there was something wrong regardless of the test results. The more anxious I became, the worse I felt. I was at my wit’s end trying to ignore my greatest fear: the doctors were missing something serious.

Just when I thought I couldn’t feel any worse, I did. I was losing hair and feeling even more drained. My doctor suggested that I may have fibromyalgia and gave me an A4 leaflet. At the same time another blood test was sent away but this time it confirmed I had hypothyroidism. The fibro diagnosis was put on hold until I started levothyroxine. I prayed this would be a solution to all the symptoms, but unfortunately, it wasn’t.

I was finally diagnosed with fibro a few weeks later at Guys Hospital in London. Relief was replaced with devastation when I was told there were no real answers as to what fibro was and no cure. 

Fighting fibro became futile. I was in agony and exhausted. I was so angry and frustrated because I had come through so many difficulties and yet here I was facing the biggest one in my life, the loss of my health. I was running a business, looking after my family and home, and trying to have what resembled a social life. It wasn’t long before everything came crashing down around me. I couldn’t walk properly and used a stick to walk.

My focus became hazy as the fibro fog rolled in. I’d never had a great memory but now it was non-existent. I avoided conversations because I would lose my train of thought mid-sentence. Medication had been my last resort but didn’t work at all for me. I didn’t feel my doctors could support me anymore, not because they didn’t want to but because they couldn’t.

Suddenly I couldn’t see a future for myself which was terrifying and that was my turning point. I had to take my health into my own hands and honestly, probably for the first time in my life. This is where my journey of mental, emotional, and physical self-care began. 

Self-care was such a foreign concept to me, but I realised it was critical to my future. My journey was one of the longest, bumpiest, and loneliest journeys I have ever taken.

Lifestyle changes are not a cure for fibromyalgia, it’s true. But it was those small consistent changes, and many baby steps over a few years that gave me my quality of life back and that was exactly what I was looking for. I even began horse-riding again which I never thought would be possible. 

Has fibro affected me on a personal level?

It’s strange and a little ironic how fibromyalgia has affected me on a personal level. There are two sides to this story.

In the beginning, I felt totally out of control as fibro took over every area of my life. It became my identity and I no longer recognized my life. I hated my life and the prison my body had become. My confidence, self-esteem, and self-worth plummeted. It’s natural to tie self-worth to the ability to get things done and now I could no longer do very much at all. I felt totally inadequate. 

I was also racked with guilt because I couldn’t be the mum I wanted to be. Quality time with my family was gone and it was just too painful to even hug my children. I had loved my own space and socializing but at this time I hated both.

People that I thought were friends made a gracious exit which hurt a lot. This was one upset I had to let go of because holding onto grudges made me feel worse… Fibro was already doing a good enough job of this!

I went through so many emotions until I became numb and isolated myself from everything.

Here’s where irony enters: it was fibromyalgia that forced me to look at my life on every level.

I had swept so much under the carpet, but the time had come to deal with all the repressed emotions and trauma that were causing PTSD and every area of my life that had been neglected for so long.

I am so thankful for this because who knows what could have happened to me if I had not made these changes. Now I feel more in control of my life and health than I have ever been. 

Coaching and Advocacy Work 

Fibromyalgia can turn life upside down. Trying to see your way out of the middle of your struggles is very difficult let alone find the energy to take the steps needed to feel so much better. I was partway through my journey and fibro symptoms had significantly eased allowing me to feel more control of my life again when I realised I could offer valuable insight to others. I knew the simple, sustainable lifestyle changes (or enhancements as I like to call them), that I had implemented for long-term results would help others. This inspired me to become a fully qualified Integrative Nutrition Health Coach and NLP Master Practitioner. 

I would strongly recommend working with a health coach who lives with fibromyalgia because it is important that they understand what it means to live a fibro life. Believe me, when my client says they are having a bad day, I get it!

In contrast to conventional medical care, coaching is unique to each person and does work efficiently alongside primary care by bridging the gap between being told to do something by your doctor and actually living that advice. 

Coaching is also unique in that it helps you to reconnect with who you truly are and to understand the needs of your mind and body. In short, you become the expert in your health care rather than a passive bystander.

It is through reconnecting with yourself that self-esteem, confidence, and self-worth are rebuilt. This leads to feeling in control of your life again. It may sound a little overwhelming, but it doesn’t have to be. It’s important to take the journey at a comfortable pace. As a coach, I am there to cheer my clients on when motivation is hard to find and celebrate with them with each achievement no matter how small. 

I know having the help of a health coach would have made the world of difference to my journey as I could have avoided the falls, self-sabotage, and loneliness that lasted for a few years. Time is precious and we don’t get it back. 

It’s important for people to experience coaching to decide if it is the right route for them and so I offer a free initial call. I coach one-to-one online and have exciting plans for the new year to create a group coaching program and workshops both online and offline locally to me. For lots of advice and top tips, I run my Facebook Page, The Healing Within Fibromyalgia, and my website www.thehealingwithin.co.uk. (There are extra links at the bottom of this post.)

As well as my first love of coaching, I also love writing. I was recently published in the Fibromyalgia Magazine and I hope to write more for them. I am also writing my book that will be available towards the middle of next year in 2022.

Community outreach and programs

I’ve wanted to do more in my local community but due to the outbreak of COVID-19 (and being hospitalized with it myself), this has been restricted to online. I recently started a group called Living with Fibromyalgia on the local Nextdoor website which is growing fast.

From this group, I will be offering support calls via Zoom once a month. I am also an admin of a wonderfully supportive fibromyalgia Facebook Group called, Fibro Connect, which I can’t recommend enough.

It’s a great non-judgemental, safe space, to share and support each other as well as lots of practical tips and advice.  

Essentials to know about life with fibromyalgia

There are so many things I want to share that I feel are essential, but I will drill it down to two. 

How you feel is real and it matters! You are not a burden on your family or friends! Don’t feel you have to suffer in silence. If family and friends are not supportive of you then there are so many other people that will be. Don’t be afraid to look for them.

Secondly, you do have far more control over fibromyalgia symptoms than you may realise or may have been told.

Acceptance and moving one step forward is the key. If I can get my quality of life back from fibromyalgia, so can you! Stay curious, not judgemental. You never know what will help you. 

My coping techniques 

One of the most powerful changes I made was to be compassionate, forgiving, and understanding with myself. I was my toughest critic and always had been. Instead of beating myself up and feeling frustrated with the new limitations my body dictated, I went with the flow (or lack of).

When I needed to rest, I rested, with no guilt attached. When I had to say no, I said it. If I needed to sleep earlier, that’s exactly what I did, I stopped fighting fibromyalgia and began listening which was a game-changer. 

Resources

There are so many fantastic blogs out there it’s difficult to pick just a few. My favourites are positive, creative, and inspiring blogs. www.fibrobloggerdirectory.com is a great website to find a whole variety of diverse blogs whose writers work hard to share their journey, support, inspire and help people living with chronic illness.

I also love the Fibromyalgia Magazine. It’s packed full of interesting articles offering advice, life experience, and support for over 20 years now. It can be found online and in print.

Some words of advice and encouragement if people want to reach out to me

Never be worried to be exactly who you are. I used to hide what was happening to me and how I was feeling especially when I was suffering from anxiety and depression. I continued to suffer in silence. It’s the loneliest place in the world when you feel like this and it will fuel more symptoms.

Please don’t stay silent. Reach out and say hi anytime.  

Contact Lynne!

Get in touch with Lynne by using the links below.

Visit Lynne on her FB page at The Healing Within Fibromyalgia
Email Lynne at:  lynne@thehealingwithin.co.uk

Book a free consultation with Lynne through her website at The Healing Within

Post Author: Carrie Kellenberger

I'm a chronically ill Canadian who has been living in Asia since 2003. I moved from China to Taiwan in 2006. I'm an experienced businesswoman and have worked in many leadership positions in Asia. In addition to my own work, I've been writing professionally about Asia, travel and health advocacy since 2007, providing regular content to publishing companies and travel publications in Asia and North America. I started writing about my health journey in 2009 after being diagnosed with Ankylosing Spondylitis. In 2014, I was diagnosed with Fibromyalgia and ME/CFS, which came with other massive health issues. These diagnoses were the start of my journey as a health advocate and patient leader. Since then, My Several Worlds has been recognized worldwide as a top site for AS, fibromyalgia, and chronic illness by WEGO Health and Healthline.

Leave a Reply

Your email address will not be published. Required fields are marked *