What's Going On? A Simple Explanation of Fibromyalgia.
Making Sense of a Complex Disorder, For Those Who Don't Have It. ~About.com
Getting a diagnosis of Fibromyalgia (FMS) is as devastating as getting a diagnosis of diabetes. Diabetes is named "the silent killer." I call FMS the "silent destructor." As with diabetes, you can't see the malfunction and in most cases don't even know a person has either disease.
Most people with a chronic illness are always sick. The effects on the body of cancer, a virus, or a degenerative disease are fairly constant. It's understandably confusing to see someone with fibromyalgia be unable to do something on Monday, yet perfectly capable of it on Wednesday.
Look at it this way: Everyone's hormones fluctuate, and even things like weight and blood pressure can rise and fall during the course of a day, week or month. All of the systems and substances in the body work that way, rising and falling in response to different situations.
Research shows conclusively that fibromyalgia involves abnormal levels of multiple hormones and other substances. Because those things all go up and down, sometimes one or more are in the normal zone and other times they're not. The more things that are out of the zone, the worse they'll feel.
For the people in your life who don't understand your Fibromyalgia pain...
Invite them to take Clothespin Challenge:
Here is how it works:
- Place a clothespin on your finger
- Set a timer for 30 minutes
- See how long you can bear the pain. Did you leave the clothespin on for 15 minutes? 10? 5?
- NOW. Imagine this pain forever... This should help you understand what it is like to live with constant pain - but people with FM can't just "remove" the pain the way you can remove that clothespin!
- Learn to listen to your body, and do not push yourself to meet unrealistic goals.
- This is especially hard to do if you have been used to leading a very active, busy life.
- You must slow down and give your immune system a chance to heal.
On bad days, people living with Fibromyalgia describe their pain as tender, shooting, numbing, tingling, burning, throbbing and unbearable. Coping with Fibromyalgia on a bad pain day or 'flare up' can be stressful. The following tips can help those in a flare deal with their chronic pain and hopefully, lessen the stress of a bad pain day.
Know Your Triggers
If you have fibromyalgia, chances are you know what makes it worse. The first tip to dealing with your chronic pain is to avoid the triggers that make your pain worse. This isn't always possible, but when dealing with the chronic pain of fibromyalgia, avoiding the bad days at all costs is the key to coping.
Try the following tips to help avoid the bad days.
- Avoid Stress: This is a hard one. But stress and excitement can cause flare ups for those with fibromyalgia. The best way to avoid stress is to try and cut it off at the path. Learn to say no once in awhile to invitations so you don't overbook yourself. Take some time for you each day. Avoid jobs that involve stressful deadlines.
- Practice Pacing. When you have a chronic pain condition, you have to take things slow. Sometimes this is frustrating. But flares often come up in fibromyalgia when, on a good day, a person decides to run several errands, clean the entire house, or exercise heavily. Instead, try to keep your routine even. Clean one room in your house at a time. Stop and rest every few minutes between activities. And have a set exercise routine that you follow on good days and bad pain days.
- Learning to say NO is vital to this process of healing: A simple 'NO' - to family, friends and colleagues- it is ok to say NO when you are having your Fibro day.
"No, I don't feel like shopping today. No, I will not cook tonight. No, I
don't want to go out. No, I don't want to join them for a walk."
Coping with Pain
On a bad pain day the only thing you want to do is crawl under your sheets. Unfortunately, kids, errands, work and even pets can keep this from happening. Still there are some things you can do to deal with a chronic pain flareup.
- Take Inventory. On bad pain days it is easy to get overwhelmed by your pain. Take a good half an hour to evaluate where you hurt and how much. Use pain scales to evaluate how much pain you are in and what type of pain you are in. In the article, "The Purposes of Pain Scales" by Rhonda B. Graham of InteliHealth, "Pain scales are tools that can help your doctor diagnose or measure your pain's intensity." Evaluating your own pain levels can help you understand how best to cope with your fibromyalgia symptoms.
- Evaluate Options. Think about the resources you have on hand to deal with your pain. If your pain is lower on the pain scale, what alternative or non-drug therapies might help? Do you need to book an appointment for a message? Take a warm bath? Lay down for an hour or two? Talk an easy walk around the block? If your pain is higher on the scale, which non-drug or drug therapies work for you? Do you need to call your doctor for refills? What might you need to make you feel better? Gather your favorite symptom relief remedies and put them in one place for easy access. Make sure it is light in case you want to move it around the house with you.
- Prioritize. With chronic pain it is easy to throw away an entire day. Instead, focus on the items on your to-do list that you can accomplish. This will keep your stress from piling up, can keep pain from the forefront of your thoughts and you may even feel better having accomplished something for the day. For instance, if you had an important work meeting, can you arrange your day to make the meeting, but to skip everything else? For chores, maybe you can't clean the whole house, but can you load the dishwasher, taking small breaks in between to rest? If you are at a high pain level and staying camped out on the couch or in bed is your only option--can you work on a project from your computer or do light exercises from your couch?
- Call for Help. Sometimes, pain is too intense to think away. When this happens it is best to have a list of numbers on hand to call in extra resources. Make sure you have a variety of numbers on hand so you aren't calling the same person all the time. Numbers that should be on your list include family, close friends, your doctor(s), babysitter, dog walker, and friends from a fibromyalgia support group. If you pain level gets very intense or you suddenly worsen, make sure you have the number to your local emergency room and any other emergency services on hand.
Fibromyalgia and the importance of family support.
Every family member needs to understand the cycles of pain and fatigue associated with fibromyalgia. They need to learn how to cope with these cycles because life goes on, and family members need each other.
If the chronic pain, depression, and anxiety are not enough then there is the loneliness that comes when everyone thinks you are crazy and turns their back on you. On the other hand, you just get tired of trying to explain what fibromyalgia is repeatedly.
Regardless of whether you understand what someone is going through or not, remember it could happen to you!
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