2009 -My Doc diagnosed Fibromyalgia and CFS.
Fibromyalgia is such a difficult thing to explain and so far I have only been able to tell my family about it by giving them books, print-outs or web links to read, I struggle with finding the right words to explain it to others and I’m still learning myself about this recent diagnosis of mine and what it all means. To say “chronic pain, fatigue and mental slowness” sounds quite underwhelming really considering the wide range of symptoms and it attracts doubt and skepticism from others. I recently read about the neurological basis of Fibromyalgia and CFS and a statement that:
One thing that research has shown, time and time again, is that when you have FMS/CFS your neurotransmitters are out of whack.
I like that, I’m going to borrow it i think, next time someone says “you have Fibromyalgia – what’s that?” I’ll say “oh, my neurotransmitters are out of whack” !
So, what does that mean?
Well, every emotion and function of the body is linked to specific neurotransmitters in the brain. When the levels of a particular neurotransmitter are too high or too low, things can start to malfunction. FMS has been associated with irregular levels of several neurotransmitters, including:
- Serotonin (the sleep cycle, pain processing, body temperature, appetite, sex drive, mood)
- Norepinephrine (“fight or flight” response, alertness, memory)
- Dopamine (mental focus, movement disorders, motivation)
So basically, this messes with the workings of your body causing a wide range of symptoms. When I was first diagnosed, I got home and looked at the reading material my Dr had given me and thought “No Way! – I can’t have this, look at all the symptoms!” But as I read on, I was absolutely Gobsmacked at how many symptoms I ticked, and how much of it made sense. A lot of symptoms that i took to mean my Thyroid medication needed review, or some that I had always thought were ‘just me’, were actually FM symptoms.
Fibromyalgia – Symptoms from About.com
ME / CFS – Symptoms from About.com
A more extensive symptom list can be found in the book “Living well with chronic fatigue syndrome and Fibromyalgia” by Mary Shomon.
Some of my symptoms: pain hurts me more than it should or bits of me hurt for no reason. I get really sore from very small amounts of activity and mentally exhausted by things that used to come easily. My joints seize up, my muscles cramp and I can become very weak, especially in the arms and legs.
I have trouble achieving deep sleep and wake easily, sometimes because of pain, because a noise startled me, or for no reason at all.I feel tired most of the time and become fatigued and extremely exhausted easily, and often. When I am fatigued, It feels like having the flu and my throat gets sore, my nose runs and I feel like I am ‘coming down with something’. With extreme fatigue I feel nausea, light headed, wobbly on my feet, like the whole world is spinning and it hurts everywhere. I sometimes feel extremely anxious, have small panic attacks and chest pains. I also become very emotional.
I experience numbness and tingling in different parts of my body which comes and goes and I have trouble maintaining body temperature. I get cold very easily, my finger and toenails turn purple and I shiver but moments later I might feel overheated or feverish. I am allergic and sensitive to many things and get frequent rashes and hives. I get itchy, irritated eyes and they are painfully sensitive to light, especially at night. My ears hurt and itch and feel blocked, they ring and buzz at night and during the day my hearing might come-and-go momentarily.
Some days I have trouble thinking, speaking and processing, this is extremely frustrating and depressing because I know I am a bright person and the knowledge is in there… somewhere. Socialising is very difficult when I am experiencing brain fog and pain, as is work and housework.
I crave sleep and need to rest to prevent my symptoms from worsening or ‘flaring up’. The symptoms are with me every day of my life but their severity depends on how well rested and healthy I am.
Little Weirdy :)
Nobody knows for sure what causes FM and being an ‘invisible’ disease, it causes great skepticism amongst others. It seems only fellow sufferers can understand the feelings, the pain and frustration that you live with. I struggle to explain my symptoms to others, what it feels like to me. ‘Tired’ and ‘Hurt’ have different meanings for me now that I have met up with Hashi’s, FM and CF. For me, the three go hand in hand, the symptoms overlap and some are shared while others are distinct to a specific disease. All I know is that together they are a powerful force and sometimes I feel outnumbered and beaten. Other times, I feel as though I have struck just the right balance and life feels brighter:)
Oh and by the way, you may wonder how one is able to accept a diagnosis that has no definitive test as proof – well so do I, regularly. I worry that FMS may be a misdiagnosis of something else, sure i have all these symptoms and the diagnostic ‘tender points’ but it is possible that they could be caused by something else. I figure all I can do for now is accept the diagnosis, trust my Doctor (scary i know) and make sure that I keep her well informed of any new symptoms or concerns.
