. . . Living with FIBROMYALGIA
I was diagnosed with Fibromyalgia, 12 years ago. I now believe that I could have possibly been suffering from it from birth (apparently possible), and hit a major flare up after a personal trauma, which led me back and forth to the GP surgery for blood tests, X-rays, and so on . . .
I had never heard of it before, but I went home and cried . . . with relief, when I was eventually diagnosed by a Rheumatologist. He ruled out a number of other illnesses including Lupus, which has very similar symptoms. He sent me packing with information book.
I then set out on a quest to learn everything and anything I could about my illness. This can eventually become boring. After years of pain relief and sleeping tablets, I have learnt to manage it myself
It is an auto-immune disease, the effects are chronic, but not life threatening. It consists of widespread pain, and bouts of extreme fatigue; imagine the combination of ME & arthritis (which I also now suffer from)
There are no outward obvious signs . . . so us Fibromites usually ‘look fine’ to the outside world. If a little chubby – or rotund,
It is an ‘umbrella’ illness. I also suffer from migraines, IBS, irritable bladder and a variety of allergies. These are the result of my immune system battling against itself. I am allergic to aspartame (found in most diet products); garlic, latex, and most seeded fruit, e.g. apples, pears, strawberries, even my own hormones sometimes!
I have cognitive problems, usually due to the fatigue. SORRY, WHAT WAS I TALKING ABOUT?? :'( On a bad day I have trouble concentrating, or with my memory, or is that a good day?? . . . Gawd, I am confused now!
Amongst the Fibro world, this is commonly called Fibrofog!
A lot of f-ing impact
Weight gain: I have gained about 4 stone. I went from a size 12 to a size 18 in about 4 months when my GP put me on a medication called Amitryptline. I have struggled with my weight yo-yoing ever since.
I have lost friends because of it:
- it has not always been easy to be sociable with extreme fatigue. Most people do not understand this, and I can come across as anti-social or just not willing to make the effort.
Not tonight Josephine!
- most people just do not want to hear about it, or even believe in it. Believe me, I know that it is not as serious as many illnesses others suffer from . . . But it has and does impact on my life, and on those closest to me.
- Some people just see me as fat and lazy! . . . and maybe you would if you met me? I tell you what, though . . . I wouldn’t wish Fibromyalgia on my biggest enemy.
- It has had a big impact on my working life. I could not sustain my last career due to the effects of it. Sitting at a desk at a computer day in, day out gave me extreme flare ups of pain, and migraines. I also had extreme trouble concentrating on projects and meeting required deadlines due to my impaired cognitive functioning. Somedays I used to find myself pushing the mouse around and around the screen, panicking as to how I was going to deliver. A bit like now, creating this blog really.
- I now work part-time and volunteer extra hours to build up my experience and confidence and skills for my CV
- I work in an environment where I move around a lot, and don’t spend any time sitting in one position, this helps to manage flare ups. I also walk as much as possible. My knees are keeping going. I do not want to be taking my kids to school on a mobility scooter JUST YET!
Symptoms & Management
- Widespread pain and very painful tender spots all over body:
– even if I just bang into something by accident it can be very painful. My son kicked me in the back of my calf yesterday, by accident (I hope?), and it bloody well hurt, much more than you could ever expect, or he did for that matter. OUCH
– a memory foam mattress has certainly helped manage pain at night
– I was on pain killers for many years, but they can become addictive, the effects wear off, and some of them made me too drowsy to live a decent lifestyle, they added to the fatigue and fibro-fog. I felt like I was swimming in the fog, treading water, getting nowhere
- Chronic Fatigue, which can come on suddenly, or be accumulative
- Over the years I have learnt to pace myself, and can usually tell when a flare up is heading
- This is where the ‘lazy’ label comes into play. I have to do what I need to, to manage my energy and time, especially now that I have 2 young children to care for.
- I have to prioritise. Sometimes the housework takes a back burner. I hardly ever iron – Life is too short. Sometimes I don’t wash my hair, I scrape it up in a pony, or add some dry shampoo, or both.
- I have to accept outside help. I am lucky I have a good support network.
- When I have energy, I usually have no time. When I have time I usually have no energy
- I take each day at a time, and try to enjoy it to the best of my ability
- I had CBT (cognitive behaviour therapy), which helped me immensely. My counsellor gave me a copy of RECLAIM YOUR LIFE by Dr Chris Williams, which has helped me keep a good level of PMA. It is my Bible, my go-to for a pep talk to self.
- I try to keep smiling. Laughter is the best medicine :O)
Thanks for listening. Have a nice day now ;o)