I have had Fibromyalgia for twenty years, officially, and it is by no means an easy diagnosis to live with. I was diagnosed when I was twenty and presented with symptoms as a teenager. It is more common with women, but men can have fibro as well. It is often diagnosed later in life, but you can be diagnosed as a child. I developed comorbid conditions such as IBS, migraine, and depression all of which complicate management and treatment. I would say my fibromyalgia is moderate in intensity but the thing with FM is that it can be mild and it can be disabling. The comorbid conditions are what knocked me into a less functional capacity with fibromyalgia in my case.
What is it?
Fibromyalgia is a chronic syndrome defined by widespread muscle pain, fatigue, sleep dysfunction and cognitive dysfunction. Fibromyalgia is abnormal pain processing that involves an increased sensitivity to pain known as hyperalgesia as well as allodynia and paresthesia pain. That is it, laid out right there in basic terms.
One of the most pervasive stigmas with FM is that it is a garbage diagnosis. Something you say when you have no other diagnosis to give. Yet there is more than enough evidence of central nervous system involvement with fibromyalgia to establish its validity as a syndrome. The cause remains unknown but certainly research has been honing in on some of the effects of the syndrome on the brain and CNS.
Hyperalgesia is a pretty major feature of Fibromyalgia. We feel more pain than normal, we feel it faster, and we feel it for longer with normal stimuli. Allodynia is a painful condition causing mild to intense burning skin pain. Clothes to a light breeze can be very painful with allodynia. It can occur anywhere on the body and can occur in bouts or be very enduring. I now have it on my upper back lasting for several months, abating, and then returning.
It is a constant fire that just drives me to distraction. But I have had it on the arms, thighs, and scalp before. Paresthesia is a puzzling sensation because it can be caused by so many other things. It is abnormal sensations such as tingling, prickling, burning, and even numbness. It can get very intense as well. I had it so severely and in such a location that my doctor did some back MRIs because of the way it presented but it was the fibromyalgia not another condition.
Due to its affects on the nervous system fibromyalgia has a myriad of symptoms one can experience. A lot of symptoms can manifest. The ones primary used for diagnosis and tend to be severest are the widespread pain, fatigue, sleep disturbances, and cognitive dysfunction.
People with FM often have delayed onset insomnia, frequent waking from sleep, difficulty falling back to sleep after waking, issues with attaining Delta stage 4 sleep, and therefore our sleep is often unrefreshing even when we feel we got a lot of it. We can have issues with sleep apnea, restless leg syndrome, and night-time muscle contractions (nocturnal jerks).
Insomnia has been the plague of my existence with delayed onset insomnia, frequent waking and very unrefreshing sleep. It is something that can really begin to drag someone down all on its own but certainly compound other symptoms like fatigue and brain fog.
It is widespread all over pain that can vary in intensity from mild to severe. It is a myth that people with FM have mild pain. People can be disabled by FM or have more moderate pain. And pain varies day to day like any other chronic pain condition. Pain can also flare up due to certain factors like weather, stress, over-exertion, illness, temperature fluctuations, and lack of sleep. Flares are much more intense and can involve other symptoms as well. They can knock us out for days or weeks.
Fatigue can be a heavy burden with FM and can range from mild to severe in various people. This as well can vary in the individual. Some people may feel more fatigue than pain, for example. It feels like you are dragging yourself through the day with a heavy burden on you. Standing alone seems like immense effort sometimes when the fatigue is severe.
The cognitive dysfunction with fibromyalgia affects working memory, free recall, recognition memory, verbal fluency and vocabulary with the exception of information processing. People will notice the changes in concentration, focus, and short term memory issues. People with FM can have problems remembering words to using the wrong words in conversation and writing. I am not going to lie, this can be one of the most frustrating things about FM; this inability to think sometimes. Like your brain is full of molasses. Trying to think through a thick sludge.
There has been some research to suggest some people can experience short periods of remission with fibromyalgia. A long term study of 28 people showed overall functionality of people with FM doesn’t tend to change over time.( ). The study did indicate that functionality might be preserved with exercise as a factor though. I have never experienced remission, but the thought that I could is interesting. I always wished I could schedule a pain break and it would be aprecious thing indeed if that spontaneously happened. Why some people do and others do not is also something that interests me.
What causes it?
There is no known cause or cure for fibromyalgia. There is some sense that it is triggered by a shock to the nervous system from accident, trauma or illness. But that isn’t the case with everyone. For me it was either idiopathic or it was trigger by my existing joint hypermobility syndrome that also caused me pain and insomnia as a child.
You learn a lot of things coping with fibromyagia but the main things are: staying within your limits, moderation, and pacing. I was told by a pain psychologist that you have to remember on good days pacing is equally as important. It prevents the boom and busts of pain. If you overexert yourself on good days this can lead to flares of pain, so you must pace on the good days to prevent less booms of pain. Of course there is the ‘I have no idea what I did’ Flares so sometimes flares happen we have no control over at all.
You have to know where your limits are and maybe nudge them from time to time but not exceed them. This means not fear of doing things but being practical about your limitations when doing them. Sometimes you exceed your limits anyway because the limit isn’t a firm line that doesn’t change. It can be different on different days and we have to constantly monitor where we are at to know what we are capable of. When we do have a flare the best we can do is take care of ourselves and do our self-care to manage the pain and symptoms.