Everyday life with an invisible disability: Fibromyalgia
I was diagnosed with Fibromyalgia (commonly shortened to FM or fibro) in the summer of 2008, though I think I had it much longer than that. My purpose in writing this webpage is to try to explain how the clinical list of symptoms actually affects me in my day-to-day life. Though every person with fibro will not suffer in exactly the same ways, I hope this gives a better understanding of what itís like for all who have FM.
Perhaps one of the most important things to understand if you know someone with fibro is that symptoms change from day to day, or even from hour to hour. We may do an activity fine one week, but be unable to do it the next week.
These websites were helpful to me as I developed this page, and provide a more clinical look at FM:
ProHealth's Fibro page--my favorite
Fibromyalgia is a relatively recently-known disease, so there is still much to be learned about it. More and more research is being done on it and there are now set diagnostic tests. It seems part of the disease is caused by the pain nerves misfiring and interpreting every sensation as pain. FM more commonly affects women than men, and often shows up during young adulthood. There are many symptoms that can occur with fibro. In the following list I'll explain a little of how they effect me, personally.
Widespread PAIN and stiffness: Fibro people experience many types of pain. Muscle and joint stiffness is also common, especially after sitting for a period of time. I always am feeling some level of pain, but the type and intensity and sometimes location varies: flu-like ache all over the body, burning pain as though my whole back is on fire, sharp pain as though someone stuck a dagger behind my shoulder blade, joint weakness and pain--almost like a light sprain, and others.
For me, driving, repeated bending (such as laundry or loading the dishwasher), and standing still are three of the biggest pain triggers. But even tiny things like wearing a heavy necklace or heavy jeans can cause more pain on bad days.
FATIGUE: This can be anything from a constant tiredness to a debilitating fatigue so bad I canít do much but sit and stare (or cry). It can mean I have trouble staying awake during lectures or sermons, or even a chat with a friend, no matter how much I want to hear it. If I'm having a worse fatigue flare, I will start having trouble walking straight, much less thinking straight, and often notice myself talking very slowly.
SLEEP DISTURBANCES: Fibro causes an alpha wave sleep disorder where the brain experiences bursts of alpha waves (normally only experienced during awake times) throughout the night. These bursts either fully wake me up, or at least bring me out of deep sleep. On a good night Iíll wake up fully two or three times and on a bad night I wake up as often as every twenty minutes, if I sleep at all. The frequent awakenings not only mean a loss of sleep, but also interrupt the important sleep cycles of the body. The time of deep sleep is vital for your body to repair itself and prepare for the next day. Fibromyalgics get very little deep sleep, and often another important sleep cycle, REM sleep, is minimized as well. Sleeping better or worse is not typically related to emotional stress.
COGNITIVE PROBLEMS: This includes memory and concentration problems, as well as language use problems, commonly called brain fog or FibroFog. Itís called that for a good reason. Itís as though youíre having to grope through a heavy fog to try to grasp thoughts, and as soon as you latch onto one, it slips away again. The short-term memory problems mean I don't always remember the answer to the question I just asked--or even what the question was! Or I'll be listening to someone and can't quite understand and connect all the words together into something that makes sense. Sometimes I have trouble talking clearly, or will use a random wrong word, or simply be unable to think of common words.
HEIGHTENED SENSITIVITY to bright light, touch, sound, and smell. Iíve already mentioned that even the touch of clothes can be painful. Any flashing, flickering, or bright lights or loud sounds can be very painful to the eyes and ears. On a bad day even quiet sounds like someone walking or ruffling through papers can be painful. Iím also highly allergic to any floral or chemical scents. I cannot tolerate the scent of perfume, scented lotions, most candles, or even real flowers. The smell of most cleaning products also cause problems.
DIZZINESS: I sometimes have a slight balance problem, especially if there are other people milling about close to me, or if it is not well lit. I havenít yet fallen! but sometimes I have to take a sudden step to catch myself, or touch a wall or friendís shoulder to balance myself. Itís not uncommon for me to try to walk though the doorframe or look a tad tipsy if Iím particularly tired.
Other symptoms of Fibromyalgia are Irritable Bowel Syndrome, muscle tremors, numbness or tingling in hands and feet, mood changes, chest pain, painful menstruation, and dry eyes, skin, and mouth. Many people also struggle with anxiety and depression.
Fibromyalgia is a chronic illness that goes in cycles of severe flares and milder symptoms. It typically never goes away completely and can be debilitating. Thankfully, it is not believed to be degenerative and does not actually damage muscles, joints, or organs. Most people with fibro learn to have successful lives, though they typically will be able to do less activity than a healthy person, and less than they were previously able to do.
The most effective help for fibro is pacing--that is, doing a small bit of activity and then resting. Those with FM need to learn how to listen to their body and know when to stop and when to say no to things. This can be difficult because what may be fine one day may be too much another day, and often the effects of overdoing it arenít fully felt until the next day.
Self help pain management such as ice and heat, special back supports, hot showers or baths, and naps can be used to calm the pain. Walking or other light exercise is also helpful, as is stretching.
There are a number of medications that can also help control some of the symptoms of fibro, especially the pain. Iíve recently started Gabapentin and it seems to be helping. If depression is an issue (thankfully it is not for me) then there are a number of meds that can help both physically and emotionally.
Alternative treatments such as chiropractic, naturopathy, acupuncture, light massage, and avoiding certain foods or household chemicals (cleaners, body and hair care products, etc.) can be helpful.
There are many ways to reach out to help, and of course the needs will change for each person. Big things like helping clean the house or cooking meals can help, but often itís the little things that are the best, like opening the door for them, or remembering not to wear perfume. Hereís a list of a few things that can help (with thanks to many other websites IĎve read similar lists on over the years):
~ Donít be afraid to hug her gently, but please no bear hugs.
~ Understand that just because she looks fine or is laughing and talking, doesn't mean she is not experiencing symptoms. And even if she feels halfway okay while she's with you, she may pay the consequences of the outing later.
~ Invite her to join you on outings, but if she says no donít be offended, and donít be afraid to keep asking in the future in case sheís having a good day. Let her know what to expect--if there will be a lot of sitting or standing, a long walk, bright or flashing lights, etc.
~ Be willing to make plans for activities and to be the first to phone or email. It may be hard for her to put energy into contacting you and making plans, even though sheíd probably like to get together.
~ Realize that just because she comes to an event doesn't necessarily mean she's feeling great.
~ Offer to drive.
~ Offer to drop her off at the front door before you go to park.
~ Hold the door for her--I canít tell you how many times Iíve hurt my wrist just opening a door!
~ Ask if you can carry anything for her.
~ When youíre hanging out with her, avoid perfumes and spritzes, scented lotions, and air fresheners. Instead of flowers, bring her chocolate or a card.
~ Warn her before you turn on the light or something that makes noise.
~ Don't yell or scream in her ear.
~ Realize that a normal poke or elbow dig might cause pain. You can touch her gently on the arm or back, but be soft and donít surprise her. Try not to jiggle her chair.
~ Let her set the pace when you are walking.
~ Don't be annoyed if you have to repeat yourself several times, or think of a different way to say something.
~ Donít be afraid to laugh with her about the quirks of fibro.
~ Ask if you can come over and help with housework, or if you can bring over some frozen meals (if she has food allergies, check what she can safely eat).
~ Ask her how sheís doing, and listen to the answer.
~ If sheís having a bad day, donít just tell her youíll pray for her, but ask if you can pray with her--right then.
~ Donít tell her if she had more faith she could be healed, or that she must not be learning very fast whatever lesson God is trying to teach her. Those are unbiblical and unhelpful thoughts. Instead, ask how God is using the illness for good.
~ Donít be afraid to complain about the little things in your life. Sure, a stubbed toe may not seem that bad compared to a lifetime of chronic pain, but that sure doesnít make it not hurt when it happens!
Living with Fibromyalgia can be very frustrating. I canít do anywhere near all the things I want to do, all the things I dream of doing or get asked to do. Sometimes I canít even vacuum my own floor, think of the simplest of words, remember what question was asked of me, or make it through a shopping trip without getting stuck in the middle of the store crying from the pain. Sometimes I think Iím crazy for trying to become a sign language interpreter because of my learning disability and my health problems.
But other times I feel almost privileged, because God trusted me to have the faith to get through life successfully, despite my body. I know everything I accomplish is only because of Godís strength, and therefore HE will get the glory. Iíve seen again and again how God uses my illness to create an empathy with others who also suffer, and they let me reach out to them only because they know I truly understand.
And so most of the time I am at peace, knowing God will see me through. He will give me His strength to do the things I need to do, and His peace to let go of the things I cannot do. Shortly after being diagnosed with Fibro, I wrote an allegorical story that illustrates what God has been teaching me. I hope it will touch any who struggle with a challenging life path.
Read the story, My Journey, here.