Fibromyalgia Awareness Day

In honor of Fibromyalgia Awareness Day, I've decided to blog about my life with fibro.

Fibromyalgia often starts with some kind of traumatic event. For some, it's a fall or a car accident. Others, the death of a loved one or some other kind of emotional trauma. And for some, like me, it begins with the birth of a child, although my birth experience was a traumatic one, so who's to say whether it was the birth or the trauma. Through the inept actions of an inexperienced doctor, I nearly bled to death minutes after my baby was born. I remember feeling the blood gushing out of me and thinking that I was going to die without holding my baby. I remember the look of shock on the doctor's face (which wasn't exactly reassuring). But I can't say for sure whether it was the trauma of that experience or the stress and sleep deprivation that came with having a difficult, colicky infant that never slept. I remember feeling tired and achy all the time and wondering if everyone else had as much pain as I did. Every day was a challenge.

Then six years ago, I had a massage for the first time. The next day, I woke up feeling like I'd been hit by a truck. I hurt all over. I was so tired I could barely get out of bed. I fell asleep every time I sat down, even when I was the only one watching my children. I developed these horrible pains in my back that didn't go away when I would lay down, like my "normal" back pains. Finally, I went in to see my naturopath. She did some blood work and, because of my high platelet levels, she thought I had a rare blood disorder that only gives people a few years to live. I was really scared! I refused to believe I could have this disorder so I sat down at my computer to search the internet for another explanation. Now this is weird, but a voice in my head said "look up fibromyalgia." So, I did and the light bulb went on! I KNEW this is what I had. It explained so much, so many symptoms that I didn't even realize were related. I went back to my naturopath who did the tender point test and very grumpily admitted that I was right.

In the years since then, I've learned a lot. I have helped and treated myself better than any doctor ever has. With pacing my activities (and accepting my limitations), a healthier diet, high potency vitamin supplements and daily exercise, I am usually able to function pretty well. I research drugs and then ask my doctor for the ones I want to try, rather than just taking whatever they recommend. I learned that people with fibro often flare after a massage if they haven't had one in a long time. I learned that aspartame can aggravate symptoms and should be completely avoided.

For me, the pain is a constant. The pain in my back really never goes away. It might ease up at times, but cooking, cleaning, standing and sitting up in a straight-backed chair all aggravate the pain in my back, even when I'm not flaring. The stiffness in my neck is another thing that never really goes away. Doing workouts with hand weights has helped, but I still have to be very careful of my neck or I end up with trigger point headaches that leave me completely debilitated.

The fatigue comes and goes for me, although I always have to be careful to not overdo it. I can't schedule too many things into a day or a week. I need lots of down time to rest and recuperate. I have times where I feel pretty energetic and other times where I can barely move. Exercising in the morning really helps with this, but I know not everyone is able to exercise.

The cognitive impairment (fibrofog) is another thing that comes and goes. One day I'll feel like myself and the next I feel like my brain is swollen and stuffed with cotton or something. Fog is the perfect way to describe it. I feel like my mind is shrouded by fog. I'm unable to think, unable to speak properly. I forget things, sometimes even things like how to turn on the dishwasher. I'll stand there, messing with the sink, turning the faucets on and off wondering why the dishwasher won't turn on.

Then there are the flares. Right now, I'm in the middle of the one of the worst flares I've had in a long, long time. All my trigger points are tight, tender and radiating pain. It feels like someone took a baseball bat to me while I was sleeping. Some of my trigger points actually feel bruised. Just standing hurts terribly. Exercising isn't possible right now because all my muscles feel like they could pull or be injured easily. Which maybe they can; the other night I pulled a muscle in my side just trying to turn over in bed! How pathetic is that? I'm tired and all I really look forward to is laying down. Having to do anything is just too much right now. I'm a little foggy too, although not as bad as two weeks ago when I could barely communicate with anyone. I'm not sleeping as deeply as I usually do and I'm having the worst problem with dry eyes. Sometimes I wake up at night and can't even move my eyelid my eyes are so dried out. I'm burning through the Refresh Liquigel like you wouldn't believe.

And the really bad thing is, there isn't a cure for this. The FDA keeps approving drugs that are supposed to help but, in my opinion, the side effects sound worse than the fibro.

I've learned to adapt. I am learning to embrace laziness (it's not as fun as it sounds) and to let go of perfectionism (somewhat - I still have my type-A, driven moments). I've learned to accept that I can't do things that other people take for granted, like clean my house for company and then be civil to the company. I'm sure people wonder why we never invite them over but I just can't do it. By the time I get halfway done cleaning my house, I'm damn unpleasant to be around and I can't help it. So, I just accept that entertaining guests is something I can't do. Other things are harder to accept, like not volunteering in my kid's schools. I often feel guilty about that, but what can I do?

I consider myself one of the lucky ones. I can walk. I can exercise and stay in shape (usually). But I know people who feel like I do when I'm having a flare ALL OF THE TIME and my heart goes out to them. Living with fibro is not easy, especially in our world with its endless demands. It breaks my heart to read wall posts where people talk about how their family or friends still don't get it and accuse them of being lazy or whiny. I hope that National Fibromyalgia Awareness will help people become more aware and compassionate.

Mothers with Fibromyalgia

What does it mean to be a Mom with Fibro? Well, it means that life will be a little different for that family than the typical household. Because of pain, fatigue and various other complications from this illness, you can't always live as everyone else does.
I am a mother of one daughter, age 5 yrs old. She's wonderful and the joy of my life, but life is not easy......for either of us. She often gets disgruntled that I can't always do the things she wants to do. I can't run and play. It's difficult to sit in the floor and play. I can't be in the sun for long periods of time, nor in the cool weather for very long. I'm sure if she had a sibling, she would be a little more content because then she would have someone else to play with besides myself. But as it is, her father and I are all the play companions she has on a daily basis. She does attend
Pre-K, but that will be out for the summer after 1 more week and also it's only 1/2 days. So I have to be ingenuous about ways to play with her and occupy her time.
Right now I'm in the middle of a bad fibro flair and a migraine that has lasted a little over a week. So I've been in bed a LOT over the last week. That's no fun for a 5 year old. But I try to think of ways we can play, while still lying in bed under the blanket (heat helps the pain of fibro for me). Things such as pretend camping, coloring, drawing.....anything that I can do with her without exerting too much energy, which I'm short on, or having to suffer worsening pain is good for both of us. She needs me to play with her and be with her to show her how much I love her, and I need to know that she feels loved. She also has a playset outside that she can play on. At my worst, I could probably just sit on the deck and watch her playing outside. On a descent day, I can play with her on the playset, albeit carefully! She seems perfectly satisfied with this plan. I know that on my worst days she wishes I could play with her better, but she seems to understand that Mama is sick and can't always do the things she wants. What is important to her is that I'm with her, regardless of what we're doing. Just being there makes her happy.
I've often felt guilt and then anger at what kind of Mom fibro has made me. But I'm coming to realize that we're very close because of how the illness has made us interact.
I have had fibro, arthritis and migraines since before she was born. I was diagnosed about 3 years before she came along. So she has never known the "me" in pre-fibro form. I think it would have been harder for her to adjust had it been the other way around, but I still think she would have adjusted. She a remarkable little girl and I'm quite proud of her. In spite of all the problems I have and the hard times I face, I wouldn't trade being a Mommy for anything in the world. I love it! Hopefully, my condition will improve over the years, rather than deteriorate. But even if it does not I will always be glad for the opportunity to be a Mom. My daughter is my anchor many times. She is the reason I get up in the mornings. Although fibro moms may be different outwardly, we are all the same on the inside..........Our children have stolen our hearts!
May you have a wonderful Mother's Day!!

Fibro and Anger

I've read many posts on many fibro sites about how common it is to feel anger about having fibromyalgia. It's easy to go there when you think "Why me? Why do I have to live with this?" I've had many days I've felt that way. That "Why me" question never leads anywhere good. But the last few years, I'm finding myself feeling more angry at the world for demanding so much of me. Instead of wondering why I have fibromyalgia, I find myself wondering why there are so many demands on me.

For me, the middle of April to the middle of June is the very worst time, even worse than Christmas. The school has all their end of the year stuff; fund raisers, music concerts, teacher appreciation week, etc.,etc. There seems to be no end to the demands the schools make on our time and bank accounts this time of year. Then there is baseball with multiple games and practices each week. And on top of all that, there are friend's birthdays, family birthdays, Mother's Day, and Father's Day. By the time Father's Day is over, I feel like I've run a gauntlet of holidays. It completely wears me out. I'm just not cut out for all the shopping and dropping by to visit that holidays require. By the end of it all, I feel like roadkill with a flock of hungry vultures tearing away pieces of me. (I know, it sounds dramatic but it's really how I feel!) And the bad thing is, it's all stuff I can't say no to. I promised myself I wouldn't put anything extra on the calendar. And what happens? Reminder cards for dentist appointments come in the mail, friends invite me to their parties, notices come home about whatever is going on at the school. So then I have to say no to some things and it always ends up being the things I want to do because I have no energy left from all the things I HAVE to do. And I find myself getting angry. Why are there so many demands on my time and energy? I don't feel angry at individual people, just at the world in general for being so dang busy all the time. Does anyone else feel this way? And what do you do about it? I really don't want to spend the next two months being angry at the world but it's already starting!

The Importance of a Support System

I've been diagnosed with fibromyalgia/CFS for 8 long years now, but I've suffered for much longer. I can remember being a pre-teen and hurting so much it would make me cry. Especially in the winter and on rainy days. I would literally sit beside the gas heater in the winter until my clothes would scorch because heat was the only thing that would help the pain. I remember taking 4 aspirin, 325 mg a piece , at a time, several times a day when the pain would hit me.
All that time I never knew what was wrong with me. We brushed it aside as minor arthritis. We were too poor to go to the doctor back then. Dr's were for emergencies only.
At that time in my life, I didn't know I would need a support system in my life, or even what a support system was. I have come to depend on them heavily in the last 8 years though. In fact, I couldn't survive without it.
MY support system comes in many different forms and many different people. I hate to say it, but not much of mine is in the form of family. My family does not understand my illness. They are not critical of it, they simply can't understand how I can be so sick, but look so healthy. I always catch flack from them if I miss a family gathering or if I have to leave early from one. No, my support systems is mainly built from friends and believe it or not doctors. My immediate family, husband and daughter, are very supportive however my daughter is only 5 so there's not much she can do to help. She occasionally brings me stuffed animals of hers, to make me "feel better soon". That is priceless and it does make my spirits feel better.
I rely on several doctors, who have become good friends, to help me though my struggling times. Sometimes with medications, but a lot of time just with encouragement. The assurance that it's NOT all in my head. One such doctor is my psychologist. I suffer from extreme depression as a result of my fibromyalgia and how it's changed my life. This doctor is a Christian and also suffers from fibromyalgia, so she really does understand what I'm going through at times. Other doctors are my internist, psychiatrist and pain mgmt specialist.
But my main source of support is from friends. Both near and far away. Some have fibromyalgia themselves and understand what I go through. Others are just sweet caring people who see me in need and try to help. Without these friends I probably wouldn't be here today. I would have given up my fight long ago. Special friends like Trisha and Vickie, who co-author this blog, have immeasurable value to me. They pick me up when I'm down. Have sympathy and empathy when I am going through a tough spot. But most of all, they can relate. That's very important! You need someone who understands what you're going through. This can come from friends, from organized support groups or even, as in my case, from places like FaceBook. That is where I found Trisha and Vickie. And I thank God every day for them.
Without a support system, it often feels like it's you against the whole world. You need to know that there are others suffering just like you. You learn so much from them. I'd had some crazy symptoms for years but after speaking with some of my support system, found out that they were related to the fibromyalgia as well. For years I suffered with depression all alone....I was ashamed to admit I had it. But my support systems taught me that depression is a natural human emotional state when dealing with something as life altering as fibromyalgia. I have often heard it said that fibromyalgia will not kill you.........it will just make you wish you were dead!!! I don't exactly know how true that is for people who don't deal with depression along with their fibro, but for me the statement is true. And if it were not for my support systems cheering me on, I probably wouldn't be here today.
Please, don't suffer alone with this illness, or any illness. Build you a support group/system and let them help you through this. Sometimes it may be that you just need someone to talk and listen to you. Other times, you may need help with housework or errands., trips to the doctor, etc... Don't be ashamed to ask for help from those who have offered it. They wouldn't have offered if they hadn't meant it. Take advantage of those offers to "get out of the house" or go to lunch. It is imperative that we have human contact on a regular basis. Too often we sit in our little rooms and suffer all alone, when there's caring people out there just begging to help you. I realize that you have to pick your friends carefully as some may be like Job's friends in the Bible.........just critical of you. But I feel strongly that God has a support systems out there for you if you'll just look and let people in. I am 40 years old and just this year have I really started building my support systems. Before I just shut everyone else out. Don't go through this alone. You don't have to. You don't need to. Open the rusty lock on your heart and life and let people in. It's the only way to really survive. May God bless you my friend.

How do I survive the Holidays?

The holidays are always a difficult time for me. I live out of state from all of our family, and even though it's only a 2 hour drive, it's hard to "make our rounds" and see all of the family when we go up. Having fibromyalgia makes this even more difficult for me because I simply do not have the energy and stamina to go to and keep up with everything going on. Many times I just opt out of going to family gatherings because it's too tedious. Over the years I've lived with this illness I've learned a few "rules " to follow for myself. Not everyone, especially family, would agree with these rules, but for me it's necessary and keeps me going. With Easter coming up, I would like to share a few of these "rules" with you. I would love to hear comments on what you think of them, as well as hear some of your tips on surviving the holidays!

1. If it's not important to ME, don't do it. Just because a gathering, party, social is scheduled, it does not automatically mean I have to attend. Pick what is important to you personally and focus on those things. Don't try to attend everything......it's impossible, even for those who are perfectly healthy!

2. Plan Ahead! This is the biggest help to me since I've become sick. I can't get things done on a regular schedule anymore, so I try to get things done far ahead of time so as to avoid a deadline. Deadlines just lead to more stress. If presents are required, purchase ahead of time. If food is required, try fixing something that can be prepared ahead of time and frozen then just popped into the microwave at the last minute, or even better purchase that ham or turkey from a service center.

3. Don't volunteer unless you really feel "lead" to do so. Don't feel pressured to volunteer your time or services just because everyone else is doing something. You have to take care of yourself first so that you can then take care of your family.

4. Learn to say NO! This was probably the hardest thing I've ever had to do, but for me it has become a necessity. People are always asking me to do them favors, help them with things, etc... and I've had to learn to say no. I always explain that it's not that I don't want to do whatever the task may be, but that I simply am too sick to take on that particular task.

5. Don't overbook or double book yourself. With fibromyalgia, you are allotted just so much energy for each day and when it's gone, you crash. If you overdo it, you crash for several days!! So learn to only book what you KNOW you have the energy to take care of, with some left over. Because you're always going to exert more energy than you initially thought.

6. Try to keep your plans SIMPLE! Everyone wants to have the best holiday EVER!, but that's usually not possible for anyone, let alone someone with fibromyalgia. Try to keep your plans simple so that it doesn't take so much work to accomplish what you want to get done.

7. Ask for help! This is probably the hardest one of all for me. I've always been a one woman superwoman. That is until I got sick. Now I can't do simple tasks by myself on some days. So during the holidays, when things are really about being with family anyway, feel free to ask for help from others. Most people would love to help out, especially women.

8. Don't be ashamed to tell people you have fibromyalgia and you are sick. Most people assume we are perfectly healthy because we look healthy outwardly. It usually never crosses their minds that we may be struggling. If you simply explain that you're sick with fibromyalgia and what it causes, most people are very compassionate and would love to help out. I know it's a hard thing to do. Sometimes embarrassing, but it's not fair for us to complain that people don't understand us or expect too much out of us, if we haven't even told them about our conditions.

I hope this helps someone out there have a better and more joyful Easter holiday. May God richly bless you all as we celebrate this most wondrous of holidays.

Will I Ever Learn?

I was diagnosed with fibromyalgia six years ago. Six long years of pain, fatigue, brain fog, flare-ups, good days and bad days. Six long years to learn that I don't have that much energy anymore. You'd think in that six years I would have learned the all-important lesson to not overdo it, to listen to my body when it says it's tired. But have I? Apparently not.

I think my fibromyalgia is on the mild side now. I've come a long way since I was exhausted and stressed with a new baby/difficult toddler. So I have some days where I feel pretty good. Sunday was one of those days and I decided to give my yard some much-needed attention. Kneeling down pulling weeds and pruning bushes didn't seem like that much work at the time. Still, by the time I finished the backyard, I was feeling tired. But I hadn't touched the front yard yet, so I kept going. I pushed myself to the point of being utterly exhausted. And two days later, I'm still exhausted. I have no energy. My arms and legs feel like they're made out of lead. I just want to curl up in the cozy cocoon of my bed and sleep for the week.

But when does life ever work like that? Not often, in my experience! Nope, I have a busy week. Baseball games, lunch dates, massage appointments and a cleaning job to do. And on top of that, I scheduled a doctor's appointment, even though I knew I should wait until next week when I wasn't so busy and/or exhausted. For me, the one extra thing per day rule only works if I schedule one extra thing for three days or less for the week. Schedule four extra things in a week, and by Thursday I'm so tired I just want to cry. Sometimes, I do cry, just out of sheer exhaustion.

I hate being this way. I feel so weak. So pathetic. At thirty-eight years old, I'm fairly young. I'm healthy (aside from fibro). I feel like I should be able to do more. Maybe that's where the refusing to accept my limits comes in. But for six years, I've experienced the backlash from pushing past my limits. I'm experiencing the backlash of fatigue now and I'm wondering; will I ever learn?

My week with Fibro

I wanted to get on here and write something wonderful & witty and helpful, but it just ain't happening!! To tell the truth, this has been a horrible week for me. Well let me tell you about it......
Living with fibromyalgia, well, it's just not easy. It changes your life and some days it just gets the best of you. I live in Georgia and in my area, it has rained almost every day this week. Now don't get me wrong.....I know we need the rain, but my body just doesn't agree! Any major changes in the weather cause me great pain with the fibromyalgia and usually with a migraine to boot. But the rainy weather is sometimes the worst. I used to love rainy days. They always seemed so peaceful. I could snuggle up with a cozy blanket, a cup of tea and a good book. Well these days I'm snuggled beneath my electric blanket , because it's still chilly here with the rain, and my mind is too foggy to concentrate enough to read anything more than a label on a can of soup! The rain and cold just seem to seep deep into your bones. (Did I mention that I have osteoarthritis also?) It feels like the worst toothache you could ever imagine except it's all over your body. My arms and legs are the worst. But then the muscles and connective tissue also flair, and it kind of feels like everything is inflammed and cramping all at the same time. My joints hurt from the osteoarthritis so it makes it hard to even move the slightest bit. Don't even think about going outside in the rain. That would be insane! But sometimes you just have to. For example, my nephew is getting married this Saturday night. The wedding is being conducted 2 hours away from where I live. So I had to do a lot of foot work this week. Such as finding a dress that would still fit me and take it to the cleaners. Finding shoes that matched. And don't forget the all important WEDDING GIFT. With the amount of pain that I'm in and the combined fatigue, I knew I would only be able to accomplish one task per day. So I've been "busy" every day this week preparing for my nephews' wedding on Saturday. I know it sounds crazy that this could take an entire week to get ready for, but with the fibromyalgia, it's as if you're only alloted so much energy for each day. It takes, usually, the entire amount of energy just to get through the day without crashing. But when you add additional tasks to the day, something else has to go. So I haven't cooked supper the last few nights. We've gotten take out. And while it was a great help to me in order to get through the week, it's just not healthy. As Trisha stated in a previous post, people with fibromyalgia have to watch what they eat because it can be toxic to us. Things that other people take for granted. But I digress.......
When you've expended all your energy, there is no more! Sometimes you can psych yourself up and generate enough energy to do special things, but other times no matter what you do, you just aren't going to be able to avoid the crash.
To this already complicated scenario, let's throw in a dash of stress. Stress that my husband hasn't worked in almost a year. Stress that my child has been sick with a cold all week. Stress that my youngest brother has just been given the news that he either has leukemia or a brain tumor..........but the plan of action isn't prepared yet because they haven't finished running all their tests yet. Stress is like a poison. It can do things to your body that doctors haven't even realized yet. For a fibro patient it can zap your energy, tighten your muscles causing pain, give you migraine headaches, activate your irritible bowel syndrome. Not to mention other health concerns like high blood pressure, heart attack, stroke..........Oh, and what it does to you emotionally is 10 times worse than your body. Stress is probably the #1 cause of depression. And it's all a vicious cycle. The more stress you feel, the more pain you feel, the sicker you are, the more depressed you are, which generates more stress, and over and over again.
Tomorrow was supposed to be my "free" day, but now I have to cut my husband's hair for the wedding. Plus I've been given the news that we are leaving at 7 am Saturday because we have to go by and do my mother in law's monthly grocery shopping, cleaning, etc... The wedding isn't until 7 pm, with reception to follow so we will likely be spending the night there. At least I hope so, because a 4 hour car trip just isn't possible for my body after this week. But that means that tomorrow, I have to pack for the trip.
In all honesty, if it were someone else, I probably would just mail a gift and not even go to the wedding. But I love this kid, his family has been good to me and he is the son of the brother who's just been diagnosed with leukemia/brain tumor. I want to see my brother. I need to see my brother. This has been very hard news for me to hear. I love him so much. I know how much I suffer with my illnesses, but I know that his diagnosis is much worse. Fibromyalgia may make you feel like you're going to die or that you wish you could die, but it's not lethal. Cancer is!
I know my writing here is just a jumbled mess, but some days that's all that you can be. All I can do is give it my best and that's what I have done. Maybe you'll identify with what I've said, or maybe you know someone who has fibro who says NO a lot, or cancels a lot and now you know why. I hope it helped you. It did me.