Fibro Warrior Interview with Lynne Said

Today we’re talking with Lynne Said of Kingston Upon Thames, Surrey, UK. She is single after a divorce in 2009 following a not so great marriage. She has six kids and two guinea pigs. She loves nature, especially horses.

Tell us a bit more about yourself:

I have one daughter aged 26, who now has her own little girl, Poppy (who is just the cutest), and five boys (what was I thinking?). My eldest son has moved out and now I have 4 teenage cavemen at home. We have two guinea pigs, Doris (who we rescued this year) and Bess who has been with us since she was a baby.

I love nature, animals of any kind, but especially horses. My son rides every week and I started again last week after 29 years ago, and planning to ride monthly and slowly build it up.  (I started riding from age 3 until 20 but gave it up for my career and family then fibro set in and I didn’t think it would be possible again). 

I love being near the sea although due to Covid that hasn’t happened this year but will head there as soon as things calm down.

 I am now an NLP master Practitioner and will qualify as a Health Coach in February, 2021…almost there 😊. I also write my blog, which has a positive focus on how we can take our quality of life back despite fibro and the many ways we can do this. It’s my passion to support others take those steps because I know that it took me so long to realize it was possible, even to acknowledge it was possible.

When were you diagnosed? 

I was diagnosed with fibromyalgia, along with hypothyroidism, in 2014, at the age of 43. But, I know the fibro started way before, I think it was around 2010 but the thyroid issues definitely started a lot later as I’d been tested many times and it was fine.

Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?

I had lived with severe anxiety and PTSD (due to a violent and oppressive marriage) without knowing it for years before fibro was diagnosed. I knew something wasn’t right at all but threw myself into looking after my home and family and just brushed everything under the mat.

I also have hypothyroidism. I remember feeling worse than ever, I could barely move out of bed.  My doctor at this time suspected fibro anyway (I was waiting for a referral to Guys Hospital London), but decided to send me for more blood tests. The pain was agonizing throughout my body and fatigue goes nowhere near explaining how exhausted I was. I had very thick fibro fog, and my memory was at an all time low.  I also began losing a significant amount of hair which was terrifying.  The symptoms really did overlap a very strong fibro flare. 

I was also diagnosed with cluster headaches and migraines increased. My vision was impacted by fibro too and became extremely blurred.

I also have a bit of a strange diagnosis called Rathke Cleft Cyst, it’s a cyst very close to the pituitary gland…initially all the symptoms I was experiencing from fibro were put down to this. I have this monitored every two years by MRI but all seems good.

What lead up to your diagnosis?

I’d never gone to the doctor very much at all until I started to get these random symptoms and then I was there so often I can’t even count.  The symptoms leading up to diagnosis were, increased migraines, muscle cramps, nausea, blurred vision, extreme exhaustion and not being able to even cope with daily chores. My blood pressure was up and down and I was taken into hospital for 10 days because it got so bad, I would almost just pass out.  I had terrible mood swings which is not like me at all. UTI’s on a regular basis for seemingly no reason and then irritable bladder symptoms.  I plummeted into depression and was extremely anxious just feeling on edge constantly.  My quality of sleep decreased significantly due to pain, vivid nightmares and needing the toilet.  

The scariest part of all of this was that all my tests were returning normal and no one seemed to know what was happening and some doctors no believing me at all.

How has your return to horseback riding affected your fibro symptoms?

I ride every month and am building up to ride more often but need to be sensible about it.  As soon as I get home I have a magnesium bath and have very little pain following riding which is just wonderful. (honestly it’s something I thought I would never do again so it’s amazing.) In 2018 I could hardly walk and never without my stick so this has been an incredible improvement for me.  

What do you feel is the most challenging aspect of Fibro?

Now I have reduced fibro symptoms significantly, but the most challenging symptom was fatigue and it can still be a problem every now and again, I would say more so in the winter months.

How open are you with friends & family about your illness & symptoms?

At first I wasn’t at all open with friends, I just felt as though I was a burden and complaining wasn’t the way to go. After a short time I felt forced to tell them because I was having to cancel plans and a couple of friends had mentioned I looked tired.  It was a similar case with my family but they saw daily how I looked and felt and that I was spending more and more time trying to sleep. When fibro was at it’s worst, I was very depressed and isolated myself, my family saw a huge change in my personality and physical ability to do anything including walking, but I didn’t really talk about it very much, which thinking back must have been really scary for them. Now I am very open and I feel that is the fairest and clearest way for everyone.

How has fibromyalgia affected your relationships?

I am a single mum so I haven’t had a husband or partner since fibro started. I lost many people who I thought were close friends when I started to get more sick, which hurt at the time, but I realized there are many more amazing people out there to meet and that will stick around if the going were to get tough, just as I would for them. I don’t focus on negativity or hold grudges because it’s so detrimental to my own health. I felt very guilty because I couldn’t be the mum I wanted to be although my kids have been very understanding. I think they had to step up and take a little more responsibility for chores in the house, but then I think this is a life skill too. Isolation was a natural progression of how I felt. So many relationships were damaged by that, including the relationship with myself. I don’t remember feeling anything accept numb.  I was totally disconnected from myself.

What (if anything) have you found/ done that has improved your symptoms?

It’s been the thing that I shunned for the longest time, and definitely didn’t believe would make any difference to fibro symptoms. A holistic lifestyle change, and to think I actually used to get angry when people suggested this. By “holistic” I mean whole life – not just diet and nutrition, but how I handle stress and balance life as a whole.

To be honest, my life is better now than it ever was, my nutrition both on and off the plate is completely different and self-care is very much part of my daily life. When I look back at my pre-fibro life, I didn’t stop, I was always busy and I just don’t think that is healthy for anyone. Pacing is key to a healthy life for anyone whether you live with a chronic illness or not. We need to rest and rejuvenate!

What do you do to cope on bad days?

It’s rare that I have a bad day now in comparison to what a bad day used to be, but if anything it’s fatigue that catches up with me, so I just accept that I have done well today, I’ve done enough and I’m going to rest.

What is the best advice you’ve received regarding Fibromyalgia?

The best advice is to truly be honest with yourself about your lifestyle and I mean all of it. It’s not just physical aspects it’s also emotional and mental.

What is one thing you’ve learned about yourself since your diagnosis?

That I needed to care for myself as well as everyone else.  My feelings, wants, needs and desires count! I love helping others and when you help yourself first, your self-care and love spills over onto everyone else. 

What’s one good thing that has happened in your life since you became ill?

I have changed direction career wise which is just amazing and have learned so much that I use and share with others living with fibro, to help empower and support them. It’s also very much the self-care aspect that has entirely changed and now, unlike before, value myself too.

What is it that inspires you to keep going, despite your illness?

Firstly, my children inspire me because there are so many things I want to do with them and I want them to learn from me…kids don’t follow your words they follow your actions.

Other people’s stories also continue to inspire me and knowing that if I share my story it might just help someone to live a healthier & happier life with fibro.

What is the most important piece of advice you would give to someone newly diagnosed with Fibro?

Be kind to yourself and do not take other peoples opinions to heart. Secondly, to remain curious and not judgmental. We grow up with so many beliefs and through those beliefs we can ignore or shun information that could really make a difference to our quality of life.

What inspired you to blog about your illness?

My inspiration comes from my own story. I thought my quality of life was gone, and it was just so difficult to see any sort of future, I just existed…this is not a life. It just took a mind-set shift, and the strength & belief that followed, to start making those changes that led to a far better quality of life and again doing the things I want to do. I know that if I can do it, others can and that gives me huge fulfillment to know that others may have been helped by my story.

Is there anything else you’d like the readers to know?

I believe that a better life with fibro means listening to your body and the signals it’s sending you instead of fighting them and trying to go against how you feel. Pain, fatigue & fog is the only way your body can communicate with you that something is wrong.

Be sure to visit Lynne’s website and connect with her:

• Website: www.thehealingwithin.co.uk
• Facebook page: https://www.facebook.com/thehealingwithinfibromyalgia
• Email: lynne@thehealingwithin.co.uk