I was diagnosed with Fibromyalgia in 1997 at 29 years old. It took 18 months for the doctors to find out what was wrong with me. All blood tests came back negative and all other tests pointed nowhere. Eventually I was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome (although the two conditions are said to be related).
It's very hard to explain Fibromyalgia to someone else, particularly my husband - he just doesn't get it. I try to live my life as normally as my body will allow, but some days/weeks are worse than others.
So here's an explanation of Fibromyalgia (fibro or FM as it's referred to). (the comments in red are my comments)
Fibromyalgia produces widespread pain, disturbed sleep, and exhaustion from head to toe. Fibromyalgia means pain in the muscles, ligaments, and tendons—the soft fibrous tissues of the body. Although the muscles hurt everywhere, they are not the only cause of the pain. Instead, the diffuse, body-wide symptoms are greatly magnified by malfunctions in the way the nervous system processes pain.
Regional muscle pain not related to arthritis or the nervous system also occurs in the majority of people with fibromyalgia. Patients describe this as firm knots in the belly of muscles, often causing restricted movement and radiating pain. These muscle nodules are myofascial trigger points and some researchers suspect that these painful areas overlap with the tender points used to diagnose fibromyalgia.
The symptoms of fibromyalgia are unpredictable and most patients are frustrated by their physical limitations and inability to make plans. You may feel as though you have to "push yourself" to get things done.
Most patients with fibromyalgia say that their muscles feel like they have been pulled or overworked, and sometimes they twitch or cramp. Even the skin may feel badly sunburned. To help your family and friends relate to your fibromyalgia symptoms, have them think back to the last time they had a bad flu. Every muscle in their body shouted out in pain. In addition, they felt devoid of energy as though someone had unplugged their power supply.
Given that the symptoms may be similar to a viral flu, experts in the field of fibromyalgia and chronic fatigue syndrome believe that these two illnesses may be one and the same.
Common symptoms:
Pain - Fibromyalgia pain has no boundaries. People describe the pain as deep muscular aching, throbbing, shooting, stabbing, or intense burning. Quite often, the pain and stiffness are worse in the morning, and muscle groups that are used repetitively may hurt more. In addition, the severity of regional pains (particularly those in the head, neck, shoulders and lower back) are a strong predictor of a person's overall pain rating. The muscles in these painful areas can feel tight, knotted and rope-like. Pressing on the firm, knotted region hurts and often causes the pain to shoot to other muscles when a myofascial trigger point is present.
Fatigue - This symptom can be one of the most incapacitating for people with fibromyalgia. Patients may feel as though their arms and legs are weighted down by concrete blocks and their bodies may be so drained of energy that every task is an effort. (This is sometimes worse than others. Sometimes things aren't so bad, then I'll get a 'flare' and it takes everything I've got to walk around)
Memory and Concentration - Difficulty concentrating and retaining new information may seriously interfere with everyday mental tasks. This symptom is referred to as "fibro fog" and may hinder job opportunities. In particular, fibromyalgia patients have serious difficulty retaining new information if they are distracted. (I forget a lot! My short term memory can be really bad sometimes).
Sleep Disorders - Patients report trouble falling asleep and more importantly staying asleep, but the unrefreshing quality is what makes the disorder much worse than insomnia. Repeat arousals prevent patients from reaching deep, restorative sleep. As a result, the night is spent in "quasi-sleep" and patients wake up feeling as though they have been run over by a Mack truck. An overnight sleep study will likely show repeat arousals with bursts of awake-like brain activity occurring throughout the night, but a specific sleep disorder may not be identified. (I can't remember the last time I had a full night's sleep)
Exercise Difficulties - Moderate intensity exercise activates a powerful pain-relieving system in healthy people, but it makes the pain of fibromyalgia worse. This is why initiating an exercise program may make you achy and tired. However, if you do not exercise on a regular basis, the performance of normal daily living activities will start to cause more pain. Rather than give in to the increased pain sensitivity related to exercise, patients are advised to do mild exercise in short intervals (such as five minutes at a time) to keep the muscles fit while not over-taxing them. A study in Sweden revealed that half of the fibromyalgia patients found it impossible or difficult to climb stairs and a majority of patients could not run. Just standing for five minutes was extremely taxing to one-fourth of the patients. (Oh yes! I'm very aware of that one. Getting up and downstairs sometimes is a nightmare)
Irritable Bowel Syndrome - Constipation, diarrhea, frequent abdominal pain and bloating, abdominal gas, and nausea represent symptoms commonly found in roughly 40 to 70 percent of fibromyalgia patients. (Thankfully, I don't really suffer with this).
Chronic Headaches - Recurrent migraine or tension headaches are experienced by 50 to 70 percent of fibromyalgia patients. Most headaches are rated as severe, occur at least two times per week, and often have a migraine component. Referred pain from myofascial trigger points in the shoulder, neck, and head muscles are suspected to be responsible for most tension-type headache and also play a role in migraines.
Jaw Pain - Temporomandibular joint dysfunction causes tremendous jaw-related face and head pain and affects one-quarter of fibromyalgia patients. Typically, the problems are related to the muscles and ligaments surrounding the jaw joint and not necessarily the joint itself. (Thankfully, I don't really suffer with this).
Other Common Symptoms - Non-cardiac chest pain, acid reflux, irregular heart beat or palpitations, shortness of breath, numbness and tingling sensations, the feeling of swollen extremities , chemical sensitivities, nasal congestion, premenstrual syndrome and painful periods (no, just long ones), irritable bladder, interstitial cystitis, difficulty focusing eyes, dry or burning eyes and mouth, dizziness or feeling faint, profuse sweating (no), muscle weakness and balance issues can occur. Fibromyalgia patients are often sensitive to odors, loud noises, bright lights, some foods, and often the medications that they are prescribed. (my hubby really can't understand why chemicals make me feel really ill, particularly when he's using strong chemicals (in the house) to clean or pain motorbike parts)
Aggravating Factors - Changes in weather, cold or drafty environments, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety, and over-exertion can all contribute to fibromyalgia symptom flare-ups
Reading all this is a bit frightening. What you need to know is that it's not all these things all at the same time, apart from the muscle pain, but even that can vary from mild to severe. I constantly have some muscle pain and very often feel a bit spaced out like my brain isn't functioning properly, but I live with it. The worst thing is when a flare occurs and then I can be suffering from most things on the list all at the same time. Getting up in the morning is a nuisance. It takes about an hour for my body to actually wake up and start moving properly. If we're going somewhere, I have to get up an hour earlier than everyone else so that I can function. Also, at the end of the day, very often (particularly in a flare) my body just stops working, like it's all ceased up and even laying on the sofa to read is painful. But that is when it's at it's worst, or in a flare. It doesn't go away, but on the outside, if you were to sit having a coffee with me, you wouldn't be able to see or know anything was wrong. I think this is one of the things that make it difficult for others to understand what's going on.
