Diagnosed with Fibromyalgia and CFS – Who? Me?
In 2016, after about a year of unexplained illness, pain and extreme fatigue, I was diagnosed with fibromyalgia and CFS/ME. I’d never heard of either fibromyalgia or CFS at the time. But I’d felt so ill for so long that I began to think I might have a terminal illness, so boy did I feel relieved. I’ll just be able to take some tablets and it will all go away, right?
Yeah, you know it. Wrong, so wrong!
Life Before Getting Diagnosed with Fibromyalgia and CFS
I am (I’m not going to say was because that is just too final) so I am a very adventurous person and driven to make something of my life. I’ve travelled a lot, lived abroad, been successful in my career.
‘I had a car crash and thought I was lucky to get away with whiplash’
Then, I had a car crash and thought I was lucky to get away with whiplash and a bad concussion. But I started getting ill all the time. I was picking up everyone else’s infections and literally having to drag myself (and what felt like a 10 stone concrete block) out of bed in the morning.
The Stressors of Undiagnosed Fibromyalgia and CFS
My family were worried, but I couldn’t tell them what was wrong because 1) I didn’t know myself and 2) I was embarrassed by this weakness and pain that was taking over my mind and body.
‘What I should have done is press the ‘HELP’ button right there and then’
I’ve always been strong, always been a doer, an adventurer. How could I tell them that I was now bone weary tired but couldn’t sleep, that I was always in pain, or that all I wanted to do when I got up in the morning was go straight back to bed? How could I tell them when I couldn’t even admit it to myself? What I should have done is press the ‘HELP’ button right there and then.
Instead, I started getting desperate and thinking that something was very wrong.
When Desperation Takes Over
Months went by like this. I’d been to the doctor a couple of times and had blood tests, but nothing showed up and his advice was that I was probably run down. My Doctor eventually told me to take a few weeks off work, but that’s easier said than done when you’re self-employed. I compromised and took a couple of weeks off.
‘Every last ounce of energy I had had been used up’
During the second week of my time away from work, my sister popped around unexpectedly. She let herself in as she always does and found me in a daze at the bottom of the stairs. Every last ounce of energy I had had been used up and I couldn’t move my arms or legs. It was total, like when the battery runs out on your mobile.
I could see my sister was horrified and I was trying to tell her it’s OK, nothing serious, this happens, it passes. But I was slurring and stuttering so badly she couldn’t understand me. Inevitably she called for an ambulance and I was admitted to hospital with a suspected stroke.
Finally A Diagnosis?
When the results came back, I had not had a stroke, but I did have a chronic Vitamin D deficiency, (which apparently GPs do not always check) and probably had had very low levels for a while. I have written a post about the symptoms of low Vitamin D levels and what it does to your body. This did not explain the pain though, or the problems I was having getting and staying asleep. Or virtually jumping out of my skin at any unexpected noise. That night in the hospital, my legs were really restless and painful and I was having chest pains (which turned out to be costochondritis, feels like a heart attack but it’s not)
The next day the results of all the tests I had came back clear. Not MS, no issues with the brain, no broken bones in the neck or spine, so I was due to be discharged later that day. But the chest pain was lingering and when the nurse did a final run through of my vitals, my blood pressure was quite low and I had nasty migraine forming
Fibromyalgia Tender Points Hurt!
Next day, a Rheumatologist came to see me. After asking some questions about my life and health the past couple of years, he started pressing various parts of my body. It felt like torture! I didn’t know it then, but there are specific fibromyalgia tender points across your body. These tender points are painful when even gently touched if you have fibromyalgia, but not painful at all to others.
The consultant told me that they would run some more tests but was pretty sure I had fibromyalgia and CFS/ME. Fibromyalgia was causing the pain, and many other symptoms, and CFS causing chronic fatigue. He believed that the illnesses had been caused by the vitamin D issue and the car crash. So there it was, I had been diagnosed with Fibromyalgia and CFS. At last, I had some information and could research ways to cure this thing!
‘There are specific fibromyalgia tender points across your body’
I just desperately wanted to get back on track again, healthy. This has proven to be a long and sometimes lonely road. Anyone who has an invisible illness like fibromyalgia and CFS will understand that there is no quick fix. You have so many bad days that sometimes you forget about the good. It has taken me a while to assimilate that, and change, not just my lifestyle, but the way I think about my life.
Nevertheless, bad days or good, I want a better life, more energy, less pain.
So here I am, on this path to find ways to forge a better life for myself. I have written some posts about things I’ve already tried, starting with the medications prescribed I was prescribed after being diagnosed with Fibromyalgia and CFS, like amitriptyline and duloxetine (Cymbalta). And I’ll be researching like a demon to find any cures, medical trials and new information, which I’ll share through this blog as and when I can, i.e. days with no fibrofog 🙂
Peace and Love