What is fibromyalgia?
Fibromyalgia is a syndrome or a disorder characterized by widespread, chronic pain, increased sensitivity to pressure and fatigue (even with little to no exertion). The term literally means “muscle and fibrous connective tissue pain”. It is usually accompanied by one or more of the following: sleep troubles (insomnia or not getting a restful sleep no matter no long you sleep), cognitive issues, digestion issues, sensitivity to light, noise and temperature and/or depression.
What causes fibromyalgia?
Nobody knows. There is no known, scientifically established single cause or factors that lead to fibromyalgia. It appears to be a combination of genetic and environmental factors, none of which have been categorically identified with certainty so far. Psychological stress, trauma or even certain types of infections can trigger fibromyalgia but these are not the only reasons. The widespread pain aspect of fibromyalgia appears to result from The pain appears to result from pain processing abnormalities in the central nervous system processes (for instance, fifty percent less stimulus is enough to evoke pain in fibro sufferers compared to healthy individuals).
Who suffers from fibromyalgia?
In theory, anyone can. In reality, women are affected by fibromyalgia twice as much as men. It is not clear whether it affects children because diagnosis of fibromyalgia takes a long time in general.
What are the symptoms of fibromyalgia?
- Widespread, chronic pain in both sides of the body, as well as above and below the waist
- Increased sensitivity to pressure
- Fatigue (even with little to no exertion)
- Sleep troubles (insomnia and/or not getting a restful sleep no matter no long you sleep)
- Cognitive issues (including confusion, feeling disoriented (called “fibro fog”))
- Irritable bowel syndrome or digestion issues
- Sensitivity to light, noise and temperature
- Depression
Different fibro sufferers experience different symptoms, in different forms and levels. The most common complaints are constant fatigue even with no exertion, unrefreshed waking and fibro fog. Several fibro sufferers have an additional disorder or illness causing or adding to their symptoms.
How is fibromyalgia diagnosed? Are there any specific tests for fibromyalgia?
Unfortunately, there are no specific tests (like blood tests or MRI scan) to diagnose fibromyalgia. Fibromyalgia is essentially a diagnosis by elimination. This means that it can be diagnosed only when most major known causes of symptoms displayed by a person are eliminated.
In general, widespread pain (mostly of an inflammatory nature) for 3 to 6 months in both sides of the body as well as above and below, that cannot be explained by any regular testing or any other diagnostic disorder, and/or having tender points in the body (18 designated ones) is used by physicians to diagnose a person with fibromyalgia. Sometimes fibro sufferers are labelled so due to a mistaken differential diagnosis.
Can fibromyalgia be cured?
Like most syndromes, there is no real known cure for fibromyalgia. A syndrome is a set of signs and symptoms with no clear underlying cause. When no cause can be discerned, it can be hard to cure.
How is fibromyalgia treated?
Fibromyalgia can, however, be managed through various treatments which are symptom-based. A multi-dimensional treatment plan includes regular physical therapy, psychological therapy, supplements, anti-depressants or pain medication as needed and determined by a physician, diet management, regular exercise (yoga, walking, swimming) and the all-star MVP: a hot water bottle. Please see my post on Fibro treatments and Exercise for more information.
How does it feel to have fibromyalgia?
Every person who has fibromyalgia feels differently and every day is different.
Imagine having the flu, as well as the muscular pain associated with your period, a day after giving birth. That is how it feels for me on most days.
How does one live with fibromyalgia?
This is best explained by the Spoon Theory. It’s the brainchild of Christine Miserandino (https://butyoudontlooksick.com/), a blogger who advocates for people with lupus and other conditions, who in 2003 found herself trying to explain to a friend what it was like to live with chronic illness. It was late, and the two were in a diner. Miserandino gathered together all the spoons from their and other tables, explaining that each spoon represented a unit of energy, needed to complete an ordinary task.
“Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. When you are healthy you expect to have a never-ending supply of ‘spoons. But people suffering from chronic illness or pain don’t have an unlimited number. They might know they only have ten “spoons” and that it will take three to shower, eat, and dress in the morning. This necessitates a fundamentally different approach to planning time which is hard for the non-sick to grasp.”
I have constant pain and there is no explanation. Do I have fibromyalgia?
May be. May be not. The best thing you can do is to keep track of your symptoms in writing (date/day, time, symptom, how it got better or worse), discuss them with your doctor. If you have a supportive doctor you will be able to get some basic blood work done to rule out most known diseases. It will, however, take time during which you have to discuss with your doctor the best ways to manage your symptoms. If your doctor is dismissive of your complaints, advocate for yourself or try to find a doctor with a sympathetic ear who will pay attention to you. It may be the case that you have something else (or nothing at all). It is best to educate yourself but also find a doctor whom you can trust.
I have been recently diagnosed with fibromyalgia. What should I do? Where do I start?
First of all, I am very sorry. It is not fair. Not fair at all. I am really sorry. Second, you are not alone. I know your pain. A lot of us do. Talk to us if you want but ignore the morons who say “but you don’t look sick” or “everything is going to be alright” and definitely mute people who say “I know an auntry who had fibromyalgia and cured herself.”
Take a deep breath. If you have a trusted person in your life, talk to them about it and get a hug (or an air hug, as my son would call it, if a real hug is painful).
Get yourself a hot water bottle if your doctor says that is alright and start using it whenever you feel pain.
Allow yourself some time to be angry, confused, frustrated and upset. The illness is invisible. Your feelings about it don’t have to be.
Talk to your doctor and come up with a multi-dimensional plan to treat your symptoms. Get yourself tested for vitamin and mineral deficiencies and work with your doctor to identify the right combination of supplements. Speak with your doctor whether any medication might be necessary in the short term.
After that, your national fibromyalgia association should be a good place for you to start. Check out their website.
Find a good physical therapist specializing in treating fibromyalgia patients. It took me nearly 6 years to find one. Find a good psychologist who can assist you.
Start exercising – very slowly and for short times in the beginning. Try very gentle yoga stretches and deep breathing exercise.
Keep a food diary to track triggers and slowly eliminate them from your diet. Work with a qualified nutritionist, if you can.
Use a symptom tracker (either through an app or with just pen and paper) to discuss with your doctor or to identify patterns which trigger pain and fatigue.
If you are employed, you may not have to inform your employer – not necessarily – but check whether your workplace regulations require you to do so. Get help from your worker’s union if there is one or educate yourself about your workplace rights for long term illnesses. If working from home is an option, please take that for at least one or two days a week. If you have a shift job, try to track when your symptoms are the worst and see if you can avoid working during that time of the day.
Talk to your immediate family. Explain to them how you are feeling, what help you think you will need to adapt your life. If you never explain your pain, they will only see your final outburst (which probably happens after weeks of pain) and will not understand why it happened (over probably something insignificant in the general sense).
Remember this: Assess, Accept and Adapt.
Assess how this is going to change your life. This will need some tracking. Accept that some parts of your life will change. This will take a long time. It has taken me the better part of a decade and I’m still in denial on some counts. Adapt to what needs to be changed and how.
My friend/family member has fibromyalgia. What should I do or say?
I am really sorry. More than what you should do or say, a number of things that you shouldn’t do or say come to mind.
Don’t tell them everything is going to be alright. Don’t tell them that they don’t look sick or ask them if it is even a real illness. It is, and you don’t have it, so stop right there. Don’t expect them to carry on with their lives as always and even more important, don’t let them, but be gentle about it.
Tell them you are sorry that they have to be in pain always. Tell them you cannot even imagine how it must feel because, let’s face it, you can’t – right?
Ask them how they are feeling and if they want to talk about it. If they want to, listen to them patiently and respond. If they don’t want to, give them time and in the meanwhile educate yourself about the illness. I assume you want to, because you are on this page, which shows you are a good friend/family member.
Talk with them and find out what assistance they might need from you and if you can do it, please do – please! I will never forget the day a friend told me “chronic pain sucks! If you want to talk, just ring and we’ll talk”.
If you live with or near this person, help them exercise. Remind them about their supplements (not to the point of nagging, of course) but very gently. If they want to be accompanied to hospital or doctor visits and you can do that – please do. Please talk with them about what foods are good for them and either cook for or with them whenever possible. Do your research and find interesting things that they can see, eat and do without pain or too much difficulty and suggest these to them periodically.
If you do not live with or near this person, see if you can talk to them regularly or as much as they want to and you can. Send flowers occasionally to show that you are thinking of them. See if there is anything you can do to reduce their pain or stress. For instance, you may be good with tax returns and you can offer to help with theirs if they need it. Simple things like that.
What a person with fibromyalgia needs is not simple. We don’t want to feel lonely in our pain but we also don’t want to be treated like we are made of glass (although sometimes it feels like that). What we want the world to know is that our illness is invisible, we are not, nor are our feelings and dreams.
Sources
This Fibro 101 is written based on my personal experience, input from doctors and medical professionals who have assisted me, as well as the following sources:
https://en.wikipedia.org/wiki/Fibromyalgia
https://www.nhs.uk/conditions/fibromyalgia/
https://www.cdc.gov/arthritis/basics/fibromyalgia.htm
https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Fibromyalgia
My favourite fibro and chronic pain bloggers
https://butyoudontlooksick.com/
https://www.melissavsfibromyalgia.com/
https://www.fibromyalgiacause.com/
I am a burned out international lawyer & mother with Fibromyalgia and anxiety, trying to re-discover my identity.
