Top Common Mistakes Made by Fibromyalgia Patients
I am not a doctor, and I don't play one on television, but I think I have the best credentials for this particular lens:
I have fibromyalgia syndrome (FMS) and I've made a lot of mistakes.
Like most others who have this disorder, I've suffered with it. I faced the humiliation of doctors telling me that the pain was "all in my head." I felt the anger and frustration that goes with the search for someone who will understand that the pain is real. I endured years of daily, sometimes, debilitating pain. I bore a depression that clouded over my life and many of my relationships. And, I've sometimes been a pain in the neck to the people I care about most.
After several years of surviving with the affliction, I found my own personal combination of habit, diet and lifestyle adjustments that have me no longer just surviving, but thriving. My "fibro-flare" days come only occasionally, and I've gotten my life back. Sadly, I don't have a global cure to offer here, but hopefully, I can help ease the way for other sufferers.
I made many mistakes in my search for support, answers, a cure, and pain relief. I've also participated in enough groups and forums and coached enough fellow sufferers to know that I'm not alone in my mistakes. What I've found is that we fibromyalgia sufferers are consistent -- we make many of the same mistakes in common.
I, personally, have made more than my share of them, so I hereby exempt others from making the same ones. Please do as I say, don't do as I've done.
Note: While this lens focuses on fibromyalgia sufferers, it can also be applied to those with chronic fatigue syndrome, myalgic encephalomyelitis and other chronic pain conditions.
Not asking for or accepting help graciously
In my experience, many FMS sufferers are, or consider themselves, independent and capable. As a result, they're often not accustomed to asking for help, nor do they know how to accept offers.
Contrary to what I used to believe (I was much more of a control freak pre-FMS), asking for and accepting help is not a weakness. Rather, it can be a source of strength. Helping others and accepting from others is key to building strong bonds. And, as we all know, there is strength in numbers.
So, when you feel so lousy you just can't bring yourself to prepare a meal, ask for help. If you need someone to pick up a prescription for you, ask for help. When people ask, "What can I do for you?" Don't take offense and say, "I can do it all myself." Think for a moment and give that person the chance to enter your life.
And be gracious about it. Ask and accept with kindness and courtesy -- in other words, don't abuse it either.
Take the advice of American singer and songwriter, Thad Cockrell, who sings "Pride Won't Get Us Where We're Going." Swallow that pride and get help.
When everything on your body hurts, except maybe the tip of your left ear, the last thing in the world you can imagine doing is moving. Crawling into bed and curling up into a fetal position is what "moving" means when you don't feel well, right? Well, counter-intuitive as it may sound, when you have fibromyalgia, it's wiser to get up and move around. Ideal is to have a regular (and I mean regular, as in daily) exercise routine. You need to condition your body. I know that can be said for everyone, but it's especially important for FMS sufferers. The way I personally view it is that I have to make my body strong because it has to endure more than your "average bear."
Yoga, Pilates and walking are three exercises that are wisely recommended by doctors. I think they're especially good because they can all be done at home, if need be. Join a yoga class and on "fibro-flare" days, if you can't get yourself to class, do your asanas at home on your own, with a DVD, or try the Wii yoga on the Fit Plus game. Join a neighborhood walking group, and on days you're not up to it, walk at home, march up and down the stairs, or use a treadmill.
Swimming is the other exercise that's commonly recommended by doctors. The doctor that suggested, "Try swimming on the days when you don't feel well," revealed to me just how little he knew about FMS. Swimming is, indeed, an excellent exercise. If I had a pool in the next room, on days when I "don't feel well," I might be able to crawl out of bed, immerse myself and paddle around. But, any FMS sufferer knows that getting out of bed, packing up a gym bag, going out the door, into the car, over to the gym, etc. is so not going to happen when I "don't feel well." Maybe with proper conditioning, but that will take a lot of time.
But, remember: FMS is no excuse not to move. Moving is key.
Moving too much on a "good day"
Now that I've gotten you moving, or at least thinking about it, let me stop you in your tracks by saying that lots of FMS sufferers make the mistake of moving too much on good days. I'm not talking about "moving" just physically, but moving life forward, getting as much done as possible, leaping tall buildings in a single bound physically, mentally, psychologically, or even spiritually. I know you want to make up for lost time, take advantage of everything and go, go, go. But, sad to say, this strategy will likely end you up back in bed faster than you can say, "I hurt all over."
One key tip to living with fibromyalgia is to avoid extremes. I'm not saying you can't get back to the gym, go out with friends, travel, work, have fun! But, it's not a good idea to go and run the marathon (meant literally and figuratively), work 12 hour days, or go out a party til 4:00 a.m. just because you're having a good day. Sorry.
I know it's a cliché these days, but pacing yourself is essential to life with FMS.
Allowing fibromyalgia to become who you are
FMS, and the baggage it brings, can easily overwhelm. During the time when you're searching for a diagnosis, pain relief, answers, cures and new ways of living, it can become your life. Frankly, I think that's "natural" for a certain period of time. Fibromyalgia, like any chronic illness, requires changes in habits, attitudes, and lifestyles -- and often not just that of the direct sufferer, but also of those around.
But, FMS is not who you are. Your job is not who you are, nor are your parents, spouse, friends or children. They are all important parts of you, but no single thing defines you.
Granted, fibromyalgia is not exactly a welcome friend, but maybe you need to look at it as a step-brother or a sister-in-law that you don't particularly like, but have to accept as part of your life. A bummer, but reality.
Not talking about it with others
It gets tiresome explaining what FMS is to friends, family and colleagues, or describing what you're going through. Doesn't it sometimes feel like people think you're making excuses for yourself? Aren't you convinced that people are internally rolling their eyes when you talk about your pain? Or, sometimes isn't it just embarrassing?
But not talking about it and isolating yourself is counterproductive. People won't understand better, and may even resent your pulling away. Discuss your hesitancies with family and friends. Don't blame, it's likely no one's fault; see if you can find a balance. Maybe you can be very open and direct and decide that when you get together you have ten minutes to talk about FMS and the rest of the time is for other life events. Or, develop a "cue word", like "Brussel sprouts" (use another word if you happen to eat Brussel sprouts often), that you'll both use when it's time to talk about something else.
One of the best things you can do for yourself and others is to take action to educate. Look into local or national fibromyalgia organizations. Perhaps you can become a local advocate doing public speaking, leading workshops, or writing articles.
Staying in "poor me" mode
All you have to do is google "fibromyalgia" and "forum" and you'll come up with a font of online forums and chatrooms where you can share your experiences with other FMS sufferers. These can be an enormous help in the beginning toward getting a proper diagnosis, discovering what options there are (and what snake oil is on the market), and, most importantly in my book, finding others who can empathize with your situation.
Use these invaluable resources and grow from them by helping others as well. However, choose your forums carefully. I go back to forums periodically to check in and see if there's some personal experience that could help others. I've found that some of the same people are still there, agonizing over the same things they were complaining about five years ago. These forums should be about mutual support and growth. Some of them can be places where people lose their goal of finding solutions -- it's easy to do with all the frustrations that come with FMS. Make sure that you and others are growing. Use these forums to help you stay positive and motivated in your offline world.
"Poor me" modes are understandable, common and, sometimes, necessary. But don't get stuck there.
Not tracking your days
Doctors often suggest that we track our pain. This is, indeed, a good idea. However, fibromyalgia is not just about the pain. I feel very strongly that we need to track our lives. Keep a good journal of your life for several weeks.
I know this sounds like a horrible pain in the neck, but this will help you (and your doctor) know what might be triggering your pain. And this "pain in the neck" might help alleviate your "pain all over." It helped me to discover the foods, situations and attitudes that were triggering some of my pain.
Throughout the day, note down:
- When did you go to bed and when did you wake up? Did you fall asleep immediately last night, or toss and turn? How many hours of sleep did you get? How did you feel when you woke up?
- What did you eat? If you eat pre-packaged foods, what brands did you eat? If you eat out, note the name of the restaurants as well as what you ate?
- What exercise did you do? Or not?
- How many hours did you work? Did you sit in your office all day, did you stand outside at a work site, or did you rush around from place to place with a client?
- What did you drink? Sodas? Water? Wine? Cocktails? And what brands?
- Did you try any new products today? A new shampoo or cream rinse? A new foundation?
- Did you get your hair colored or highlighted?
- How did you psychologically feel all day? Depressed, elated, stressed out, content, mentally tired, angry, frustrated?
- How did you feel physically throughout the day, and how do you feel now? Do you, or did you have pain? Where? On a scale from 1 - 10 (no pain - excruciating pain) where does the pain fall?
Not watching your diet
In similar vein, watch what you're putting into your system. In my particular case, a change in diet (removing certain foods and types of food) has made a huge difference in how I feel. The process of discovering what I needed to remove from my diet was long and sometimes exhausting, but, in the end, it was well worth it.
So, pay attention to what you're eating and note it down in your journal. You may see a pattern, i.e., perhaps when you eat bread instead of rice or potatoes as a starch, you'll notice you feel lousy the next day, or maybe you'll realize that more than a glass or two of red wine in an evening will guarantee waking the next day in horrible pain. Again, each of us has our own individual "triggers"; by tracking your diet, you may help find your own.
Additionally, listing what you eat every day, will make it glaringly clear how healthfully (or not) you're eating. It will also help show under what circumstances you're not eating healthfully, e.g., whenever you have a deadline, or at the weekends, etc. Having things in writing somehow makes it harder to ignore, and makes effecting changes a little bit easier.
Not moving toward acceptance
I appreciate people who have an "I'm gonna beat this" kind of attitude toward life. But, there's yet no cure for FMS and denying that, I've found, will only exacerbate the problem. FMS is not something that you "beat." It's a little like a giant dragon. You can try to fight against it, but the more you fight, the more it pushes back and rears its ugly head. FMS is better managed with caresses, attempts to understand and efforts to envelop into your life.
I don't suggest that you should ever, ever give up the hope that that dragon will leave your life. But, the way I see it: I have the FMS dragon, and until researchers find a way to get rid of it, I will continue to have it. I refuse to let it take over my life, so I'm doing everything I can to make it less invasive, and keep it "content."
It's not going to get beaten into submission. I've learned if I try (and leap those buildings I mentioned earlier), it will fight back. So, I accept it's a part of my life (for now) and I work at keeping it sleeping in its cave as often as possible.
Keeping the same lifestyle
Finding a right balance with fibromyalgia means different things to different people. It may involve pain medications, administering anti-depressants, coaching or therapy, pain management courses, and/or changes in diet, exercise regimes, and home and work life. No matter what, it means lifestyle changes.
Living well with FMS means you cannot live the same life you led before. Take it from someone who fought tooth and nail, "resistance is futile." The fact that you need to make lifestyle changes doesn't have to send you into a blue mood. It doesn't mean you have to sit in a dark room or high atop a mountain alone, eat porridge every day, or wear saffron-colored robes. But it does mean you'll likely need to put your life under a microscope and sort through what you need in your life and what you don't.
Frankly, that's not necessarily a bad thing. Isn't that what many people strive for? Identifying what works and doesn't work? Discovering what priorities there are? Rising to the challenge of finding a right path?
I'm not going to make it all rosy. Having FMS sometimes just stinks and there are moments when I want to rail against the world. But, I'm evidence that you can make it work for you. You can have an accomplished, active, love-filled, and fun and (in my case) mischievous life.
And, by the way, try to avoid the same mistakes I made.
Recommended online resources
Thankfully, there is a lot of information that can be found online on fibromyalgia. Here are a few non-profit, non-commercial resources that provide factual information on FMS, chronic fatigue syndrome, chronic pain and related conditions.
- American Pain Foundation
This is one of my main resources for information on pain and research on pain. They have a special section on fibromyalgia with top notch information. Their FREE "Fibromyalgia Toolkit" contains some of the best information I've found online. The APF
- National Pain Foundation
The NPF site also has as good section on fibromyalgia and tips on working with your provider.
- National Fibromyalgia Association
This U.S.-based non-profit association is a good resource for information specifically on fibromyalgia. They do educational, support and advocacy work. With a network of support groups across the U.S., they are a good source for finding people who ca
- Fibromyalgia Association UK
FMA UK is a UK-based non-profit organization. Its focus is on providing information and support to FMA sufferers and their families. I do not personally know about this organization, but it has been recommended by a FMS patient I know.
Exercise or tension bands are great for stretching in bed (when you don't have much energy) or in an airplane (where you don't have much space).
I've had these workout DVDs for years. Though I don't use them consistently, I do pull them out periodically and am always surprised how helpful they are.
A helpful and sympathetic guide for the newly diagnosed.
I love Moleskines and appreciate any excuse to buy a new one. :-). Find a notebook or pad that YOU love to tote around. It'll make keeping up your journal that much easier.