A fibromyalgia diagnosis changes everything. But everyone’s story of change is not always the same. In this fibromyalgia story, we hear about the changes the diagnosis forced Lynne Said to make and so much more.
Let’s hear what Lynne has to share about those changes in her own words!
Fibromyalgia stories are reader-submitted. The Disabled Diva Blog provides this space as an outlet to share their experience, give another point of view, and connect with other patients. See the link at the bottom of this interview to find out how you can share your fibromyalgia story.
Disclaimer: This blog post contains affiliate links. I may earn a small commission to fund my coffee drinking habit if you use these links to make a purchase. You will not be charged extra, and you’ll keep me supplied with caffeine. It’s a win for everyone. I am not a medical professional, and nothing stated in this article should be mistaken for medical advice…
Who is Lynne?
I live in Kingston-Upon-Thames, near London. I am 51 years old, a single mum of six children, two of whom have flown the nest now, and I have four sons still living at home, which can be chaos at times (don’t even try to picture it, it’s not pretty ). I am a health coach helping women who suffer from fibromyalgia. I love seeing my friends in my spare time, going for walks in nature (the sea is my favourite but it’s quite a drive, so it’s a real treat to get there), and going to the stables to see and sometimes ride the horses.
When did you first hear of fibromyalgia?
When my GP mentioned it.
How long did it take from the point of first discussing symptoms with a doctor to receiving a formal diagnosis?
It took 4 years to reach a diagnosis which was made in 2014 when I was 43.
Were you surprised by the diagnosis?
Yes and No, really, because there were no real answers for all of the symptoms over four years, which is the case with fibromyalgia. The only anomaly to show up was that my immune system was suppressed, and the doctors did not know why. I was constantly struggling with anemia which made everything more challenging. Last but not least, just before my diagnosis of fibro, I was diagnosed with hypothyroidism, which I had hoped would be the answer to all the symptoms. Unfortunately, it wasn’t, and I was diagnosed with fibromyalgia.
Fibromyalgia Story of Life Change
What kind of changes did it make regarding your home/personal life
The fibromyalgia diagnosis was a relief at first, as it is for so many people. Hearing the diagnosis finally meant I was not going crazy, and my symptoms were finally being validated. After a short time, the diagnosis hit me like a ton of bricks. The hope of finding a treatment or cure for all the symptoms was gone.
It wasn’t only my life that was affected by the diagnosis, but also my
children’s lives. I’m a single mum, so there was no one else to rely on for help in our home.
As my symptoms increased, family days out diminished. I couldn’t take my children to their clubs and activities or even hug them as the pain and fatigue were so severe. Daily chores that had once been easy felt like impossible mountains to climb each day.
I was forced to give up my business, and my social life became non-existent. I didn’t even recognise my life anymore. Fast forward several years, I feel that the diagnosis has forced me to stop and listen to what my body and mind need and to take notice.
Has fibromyalgia impacted your work life?
Yes, I had to give up my business because of fibromyalgia. I have totally changed my career as my fibro journey evolved, and I became a health coach, which I love.
The Hardest Parts of Living with Fibromyalgia
The hardest part of living with fibromyalgia is its unpredictability. You just never know how you are going to feel on at any given time or day. This meant not making plans or having to cancel them last minute, and this wasn’t a one-off; it was consistently.
Is there a misconception about fibromyalgia that has made your life more difficult?
Yes, there are several. One is no one, unless they live with fibromyalgia, understands the severity of fatigue…I’ve often heard I get tired too, which used to be so frustrating as I tried to explain how I really felt.
I was also asked if I still have fibromyalgia like it was a cold or something, and so the misconception that it can be cured or miraculously vanishes is frustrating.
Last but not least, the phrase, ‘You’ll feel better tomorrow’ well, I can’t even explain how I felt about this one…anyone living with fibro will understand!
Caring for Fibromyalgia and Health
How do you address your fibromyalgia symptoms and pain?
I was taking medication for a short time because of the amount of symptoms I was experiencing. However, I found that I was dealing with more side effects than symptoms, so I had to stop taking all medications. I have learned over the years to deal with symptoms naturally through emotional, mental, and physical lifestyle changes.
Has your fibromyalgia diagnosis interfered with any other health issues or with receiving care?
Because there were so many symptoms, I put anything new down to fibromyalgia, which proved not always to be the case. One of my doctors reminded me of this and was very understanding. I also found that doctors were not aware of all the possible symptoms of fibromyalgia, and I had many tests to see what was wrong; when they were fibro symptoms, It’s best to rule out anything else anyway, so this did give me peace of mind.
Do you use mobility aids?
I used a walking stick for many years, but when fibromyalgia was at its worst, I just didn’t go outside.
What accessibility services, tools, or products do you use?
I use lots of gadgets in the kitchen to make life much easier.
Do you have any other chronic illnesses or health issues that you would like to share?
Yes, I have hypothyroidism, the symptoms of which overlap fibromyalgia. Levothyroxine has helped to balance my thyroid, but I couldn’t state enough how important it is if you are feeling worse symptoms or have longer flares to check with your doctor that there isn’t something else going on. I struggle long-term with anemia and vitamin d deficiency, which also impact my health, making the fibromyalgia symptoms worse. I do have to take constant prescribed supplements and have had to have a blood transfusion and iron infusions.
Advice for Newly Diagnosed
Be patient and compassionate with yourself. Fibromyalgia can turn your life upside down, and being harsh on yourself won’t help at all. Processing emotions while being non-judgmental with yourself is so important, and if that means some temper tantrums, crying, or shouting (lord knows I’ve done them all), so be it and remember none if this is negative, it’s natural.
The next best advice I can give is fibromyalgia is real, and so is everything you feel. Don’t allow anyone to tell you otherwise.
What part of Lynne’s Fibromyalgia story of change resonates with you?
Keeping up with the kids hit home with me. Most of their childhood is just a blur because my main focus was surviving while getting them from point A to point B.