An open letter to anyone who has a fibromyalgia patient in his or her life.
If you are reading this, someone close to you lives with and suffers from fibromyalgia (FM). Since FM is invisible, many find it hard to believe that it is a real illness or that anyone could really hurt that much all the time. Unfortunately, this is one of the main reasons that fibromyalgia is so often misunderstood, misdiagnosed and not properly treated.
Fibromyalgia is a central nervous system disorder that has three primary components: pain, fatigue and sleep problems. (1) Pain - The pain may vary in intensity and location, but it is present most, if not all, of the time. (2) Fatigue - The fatigue is not like the tiredness you might feel after working too hard or overdoing it on a sports field. It’s a pervasive, all-encompassing exhaustion - like someone pulled the plug on your energy source. (3) Sleep - The person with FM usually has difficulty sleeping. And even when they do finally sleep, they never reach that deep REM stage of sleep where the body refreshes and restores itself.
The root cause of fibromyalgia remains a mystery, however, it is usually triggered by some kind of trauma to the body, such as an injury or illness. In some cases, it can also be triggered by a severe emotional trauma. Regardless the source, FM devastates the life it touches. Unrelenting pain and fatigue reduces a person’s ability to concentrate, perform daily tasks, work, socialize, exercise and sleep. The more severe the symptoms, the more incapacitating it can be. Fibromyalgia often leads to depression, isolation and loss of self-esteem. Sadly, people whose FM is poorly controlled may also be at increased risk for suicide.
There are four main things someone with fibromyalgia needs you to understand:
1. What they are feeling and experiencing.
If you have a difficult time imagining what it must be like to live with the pain of fibromyalgia, I’d like to challenge you to try an experiment. Take a wooden clothespin - the kind with the spring that works by pinching one end together and clamping the other end to the clothesline - only instead of attaching it to a clothesline, clamp it to the end of one of your fingers. Now go about your business and see how long you can leave it on. While you still have the clothespin attached to your finger, try to imagine how it would feel if you knew you couldn’t take it off when the pain got to be too much. What would it be like to have that non-stop pain all over your body? Now think about what it would feel like to have the flu at the same time - the kind of flu where every muscle in your body aches and it takes every ounce of energy you can muster just to drag yourself out of bed. Finally, imagine that the pain and fatigue doesn’t just continue for a day, or a week, or even a month, but goes on for year after year with little hope that it will end. If you can imagine that, then you have a small inkling of what your loved one lives with each and every day.
2. What they are not.
Fibromyalgia is not a psychological disorder - it is an all too real physical illness. Those who have it are not hypochondriacs; nor are they lazy, overly sensitive or just trying to get attention. And they are not simply depressed. Although depression may or may not accompany FM, it is not the cause of it. The percentage of people with FM who also have depression is no greater than for any other chronic illness.
3. Every fibromyaglia patient is different.
The differences in FM patients exist on a couple of levels. One is the severity of their symptoms. While one patient may be able to continue working, another may be severely disabled and in some cases, even confined to a wheelchair. Just because you may know someone else with FM who is functioning fairly well doesn’t mean your loved one is faking or not trying hard enough. It simply means they have a more severe case.
Another big difference is how various treatments options work. What helps one person with FM doesn’t necessarily help another. Also, people with FM tend to have a lot of sensitivities to medications, so it often takes much trial and error to find something that will help. We find that what works best for most FM patients is some combination of medication, gentle exercise, lifestyle changes, and often some kind of complementary treatment like massage therapy, acupuncture, supplements, etc. Unfortunately, it can take a long time to find that ideal combination.
4. What you can do.
The main thing your friend or family member needs from you is your understanding, support and encouragement. They know you can’t take their pain away. They just want you to listen without judging them and let them know you care. Often people with fibromyalgia have told me that the emotional pain of having loved ones question the validity of their illness or accuse them of just being lazy is, in many ways, worse than the physical pain they have to deal with. They already struggle with feelings of guilt because sometimes they can’t “be there” for family and friends as much as they’d like to be. Try to reassure them that you care about them for who they are, not just what they can physically do for you.
If you’d like to know some other ways you can help, there’s a very nice and inexpensive little book that is chock-full of suggestions. Read my review of Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend for a sampling of its contents.
Karen Lee Richards
© Karen Lee Richards
Karen is the co-founder of the National Fibromyalgia Association. She wrote for HealthCentral as a patient expert for Pain Management.