The following "text-book" symptoms of fibromyalgia are taken from NHS.uk. (Many other websites are available for informaton, all saying much the same.)
Each quotation is followed by some of my thoughts on the symptoms mentioned, and then a brief summary of my experiences.
If you have fibromyalgia, one of the main symptoms is likely to be widespread pain. This may be felt throughout your body, but could be worse in particular areas, such as your back or neck. The pain is likely to be continuous, although it may be better or more severe at different times. The pain could feel like: an ache, a burning sensation, a sharp, stabbing pain.
Yes. Widespread pain. Different types. Different areas. Throughout the body. Coming and going, varying in intensity and sensation. Name a body part, name a pain - all combinations possible.
I was in continuous pain. The symptoms shifted around and around my body, thoughout the day and over the years. The chronic bad back, sore knees, abdominal pains, neck cricks, headaches, painful hands and arms, chondritis, hip pains and clicks, shin splints, tight calves, foot pains and spasms just to start the list. There was always something.
And then there was all the weird sensations - the shocks, bites, itches, burning and stabbing pains - from head to fingers to toes.
I had body-wide 'myalgia of imbalance' (muscle pain) because I was not using the right muscles. I lacked the central support provided by the 5 main muscles of movement, and my body tried to compensate by using other areas of muscle, but that lead to all my muscles becoming stressed, prone to spasms and easily fatigued.
Extreme sensitivity. Fibromyalgia can make you extremely sensitive to pain all over your body, and you may find that even the slightest touch is painful. If you hurt yourself, such as stubbing your toe, the pain may continue for much longer than it normally would. You may hear the condition described in the following medical terms: Hyperalgesia – when you're extremely sensitive to pain. Allodynia – when you feel pain from something that shouldn't be painful at all, such as a very light touch. You may also be sensitive to things such as smoke, certain foods and bright lights. Being exposed to something you're sensitive to can cause your other fibromyalgia symptoms to flare up.
You are in pain, not just overly sensitive to pain. Any extra pressure on an area amplifies the pain that is already present. Between stressed, sore muscles and physical tensions due to restricted connective tissues, what's your background pain level running at? No wonder when any extra source of pain is added, your pain increases.
This "sensitivity to pain" thing really annoys me. I'd bet a fibro-warrior could bear a lot more pain than someone who's not used to living with it constantly.
I was aware that I was sore to the touch, but I thought it was 'normal' to feel that way because I had no pain-free time to compare to.
I considered many of my symptoms a curiosity, rather than an abnormality. e.g. The way my face muscles would spasm with contact from an animal (dog licks or a cat rubbing against me). A cut onion would make my eyes water (as expected) but also screw up tight and I would struggle to open my eyes again.
Stiffness. Fibromyalgia can make you feel stiff. The stiffness may be most severe when you've been in the same position for a long period of time – for example, when you first wake up in the morning. It can also cause your muscles to spasm, which is when they contract (squeeze) tightly and painfully.
You are stiff. Your full range of natural movement is reduced by the formation of physical restrictions in your body-wide web of connective tissues (in response to inflammation, caused by injury, infection, surgery, postural stresses etc.). These restrictions literally stiffen the body over time.
We each have our own 'individual trauma imprint', the 'stored trauma' of what the body has experienced and the damage it has sustained, which is why the symptoms of fibromyagia differ between sufferers.
Tensions from restricted tissues are responsible for many of the weird sensations associated with fibromyalgia, transmitted through our connective tissues and causing the seemingly random sensations from head to fingers to toes.
'Seized up' was the norm for me, but I didn't appreciate how much movement I was missing until I regained it.
Old injuries never really healed and I carried the damage around, the rest of my body adjusting to avoid the pain and tension but getting ever more imbalanced as a result. Over the years more and more restrictions formed, like a scaffold trying to support my body, restricting my movement and adding to the pain. Stiff getting out of bed, sore legs after sitting. My upper body was rigid, my shoulders rounded and my neck solid - I couldn't turn my head to the side without the whole of my body moving.
I've always experienced muscle fasciculations and intense spasms - feet, calves, hamstrings, back, neck... all over. I got 'stitches' in my sides when I ran or swam but didn't know these were abnormal, they were just something that happened regularly from my early childhood. All part of the 'myalgia of imbalance'.
Fatigue. Fibromyalgia can cause fatigue (extreme tiredness). This can range from a mild, tired feeling to the exhaustion often experienced during a flu-like illness. Severe fatigue may come on suddenly and can drain you of all your energy. If this happens, you may feel too tired to do anything at all.
Fatigue results from chronic physical stress. The body can only take so much and feeling like you've run out of energy is when you can't do any more, however much you want to. The body needs to rest when it becomes overwhelming.
The constant struggle with pain whilst awake, coupled with poor sleep (see below), add to fatigue. It's exhausting being in pain.
I felt lazy. My brain was constantly active but I ended up feeling worse and worse about myself because I couldn't get around to doing the things I planned to. I was physically wrecked, the whole of my body was over-stressed and unable to take the strain of daily life.
Poor sleep quality. Fibromyalgia can affect your sleep. You may often wake up tired, even when you've had plenty of sleep. This is because the condition can sometimes prevent you from sleeping deeply enough to refresh you properly. You may hear this described as "non-restorative sleep".
All this pain, no wonder you can't sleep properly.
I never used to sleep well. Always fidgeting, trying to find a comfortable position. Yelping in pain as I moved (using my arms on the headboard to roll myself over).Waking up multiple times during the night, I never felt well rested.
I used to have vivid dreams and recurring nightmares.
'Sleep' was preferable to being awake and depressed though.
Cognitive problems ('fibro-fog') Cognitive problems are issues related to mental processes, such as thinking and learning. If you have fibromyalgia, you may have: Trouble remembering and learning new things. Problems with attention and concentration. Slowed or confused speech.
Constant pain signals to your brain are distracting. It's hard to focus. It's hard to get the words out.
I would mumble when I felt too overwhelmed to speak clearly, then get so stressed I could only shout. It was impossible to control sometimes. Trying to form my thoughts into words was so hard at times. Being asked a question but unable to form a sentence to reply as I tried to catch the thoughts in my head but there was too much painful feedback from my body to allow me to focus.
Headaches If fibromyalgia has caused you to experience pain and stiffness in your neck and shoulders, you may also have frequent headaches. These can vary from being mild headaches to severe migraines, and could also involve other symptoms, such as nausea (feeling sick).
Tension everywhere, causing headaches. Aching jaw and facial muscles adding to the pain.
Sometimes like my head was in a vice if I moved it, even the slightest. Then there were the stabbing pains, the pulling sensations on my teeth, the twitching eye muscles, intense pain in my ears.
Irritable bowel syndrome (IBS) Some people with fibromyalgia also develop irritable bowel syndrome (IBS). IBS is a common digestive condition that causes pain and bloating in your stomach. It can also lead to constipation or diarrhoea.
Tensions in your connective tissue system can cause symptoms everywhere. IBS = 'blanket diagnosis' with a wide range of signs and poorly understood causes.
My upper right abdominal pain was the worst.&enp;Every evening for years, curled up in pain but there were many other 'digestive' symptoms too, from the intense early morning lower abdominal pain (almost like clockwork) to sharp stabs that seemed to come out of nowhere.
Other symptoms that people with fibromyalgia sometimes experience include: Dizziness and clumsiness. Feeling too hot or too cold – this is because you're not able to regulate your body temperature properly. Restless legs syndrome (an overwhelming urge to move your legs) Tingling, numbness, prickling or burning sensations in your hands and feet (pins and needles, also known as paraesthesia). In women, unusually painful periods.
Dizziness and clumsiness comes with imbalance.
I was always the clumsy one! Uncoordinated and accident prone, lacking the spacial awareness that comes with a strong sense of conscoius proprioception.
Feeling too hot or too cold. Is there any proof it is a thermo-regulatory problem? Or is your brain overwhelmed by pain signals and can't tell what's going on?
I've had allsorts of sensations.
Restless legs syndrome. Pains and spasms as the body tries to kick off some of the tension.
'Restless' is a very mild way of describing all the pains and sleep disturbance, waves of tension and spasms flowing through my legs at night.
Pains, spasms, aches, weird sensations all over.
Depression. In some cases, having the condition can lead to depression. This is because fibromyalgia can be difficult to deal with, and low levels of certain hormones associated with the condition can make you prone to developing depression. Depression can cause many symptoms, including: Constantly feeling low, feeling hopeless and helpless, losing interest in the things you usually enjoy. If you think you may be depressed, it's important to get help from your GP or your fibromyalgia healthcare professional, if you've been seeing one.
The pain is real and very hard to cope with over the years. Your body is so over-burdened trying to function without the support of your main muscles of movement. Nothing ever seems to get better, no wonder it affects your mental health.
My depression evaporated one day as I stood up from a roll-down, like a blanket being lifted from over me. It was that dramatic, a layer of tension and stress released that I suddenly knew that all my pain and depression was because of a physical problem. I still had a lot of emotional issues and physical pains to work through, but that day was life-changing and I finally felt like there was hope that I could get better.
Based on my recovery, I believe fibromyalgia is a label for all the pain of a body that is tense, restricted and over-stressed, a body that is imbalanced and misaligned.