The Frustrations of Fibromyalgia

September 26, 2010 at 5:59 am (Fibromyalgia, My ramblings)

I am exhausted, again, still. Yesterday I woke up at 3:30 am, today at 2 am.  My doctor told me my adrenal glands are little out of whack and it’s messing with my circadian rhythm (biological clock). My crp (inflammation in my body) is 68.19, it should be between .00-3.0. Every tendon, joint and muscle in my body hurts. I am frustrated. I am tired of being in pain. I’m tired of feeling good one day and the next, I walk hunched over like a little old lady. I am tired of hearing, “but you are getting better.” You don’t get better, you just learn to manage it better. It doesn’t go away. I can barely type this because the tendons in my hands feel like they are about an inch shorter than they should be. I am exhausted because 34 out of the last 37 days, I have had a migraine. My back and neck muscles are in constant spasm and I feel like someone has beat me with a baseball bat. And that’s just an average day with Fibromyalgia.

No one understands what it’s like to have this invisible illness. Unless you have it, you can’t comprehend it. I know that I have just begun my journey to wellness and it is going to take some time to undo a life of bad habits, abuse and whole lot of other things. I have changed my diet. I started Tai Chi. I am trying to rest everyday. I am trying to decrease my stress levels. I know this season will pass but I gotta tell you that when you are in the middle of it, it stinks.

Am I losing my faith? No. Am I mad at the Lord that I have FM? No. Have I cursed God? Absolutely not. I love the Lord with all my heart, soul, mind and strength and am grateful that He counts me worthy to suffer. I am not having a faith crisis. I am just tired. Bone tired and weary. Tired of living in chronic pain.  Tired of hearing that I don’t look sick, I look so good. If I let the outside of me match the inside of me, no one would ever say that again. Why is it that if we look good then we must feel good? I wake up everyday with something hurting and with the help of the Lord, I do what I have to do. It takes every ounce of strength to smile sometimes and walk in the joy of the Lord and just because  I look happy doesn’t mean I’m not sick.

I know people mean well but the best thing you can do is listen with empathy, not give us advice about how your so and so got cured by this or that or try this latest thing or go see this guy or that or ask us why we are stressed out. Believe me, if curing FM was easy, I wouldn’t be writing about it right now. If there was a one product that cured it, there wouldn’t be 10 million people suffering from it. If it wasn’t real, there wouldn’t be 3 FDA approved drugs for it.

The best thing that you can do for someone with Fibromyalgia is pray for them. Pray and just listen. Thanks for letting me share 🙂

Below are the top 10 things that should NOT be said to someone with fibromyalgia, but which we hear all too often, along with information you can use to respond to and hopefully educate the person making the comment. They are presented in reverse order, ala David Letterman style.

10. We all get more aches and pains as we get older.

The pain of fibromyalgia is much more severe than the normal aches and pains associated with aging. Little things that shouldn’t hurt at all can be excruciatingly painful. Plus, most people develop FM long before they should be experiencing age-related aches and pains.

9. I think I have that, too – I’m always tired.

This statement shows a basic misunderstanding of the severity of the fatigue associated with FM. The fatigue of fibromyalgia is so much more than just being tired. It is an all-encompassing exhaustion. You are drained of energy – like someone pulled your plug, cutting of your source of power. It’s kind of like taking the batteries out of the Energizer bunny.

8. My friend has fibromyalgia and still manages to work. Maybe you just need a job (hobby, etc.) to take your mind off the pain.

Translation – you must be lazy. The fact is, the severity of FM symptoms varies. Some people have fairly mild symptoms and are able to continue working. Some continue working longer than they probably should because they have no other choice, but they suffer tremendously. Others are so disabled they are confined to a wheelchair much of the time. While getting involved in a project can help to distract your mind from the pain for short periods of time, if you have a more severe case, it doesn’t work well enough to allow you to consistently work a 40-hour week. And it doesn’t help dispel the extreme fatigue that usually accompanies FM.

7. My doctor says fibromyalgia isn’t a real disease; it’s just a wastebasket diagnosis.

First of all, this doctor obviously hasn’t kept up with the latest research, which clearly demonstrates that FM is a very real, physical disease. Also, to date the FDA has approved three medications to treat fibromyalgia and they generally don’t approve medications for imaginary illnesses. There are a few doctors who will tell patients they have fibromyalgia if they can’t figure out what is causing their symptoms and just want to get the patients off their back, but I have to question the ethics of a doctor who would do that.

6. If you got more sleep, you’d feel better.

Well, duh! One of the major problems with fibromyalgia is that something prevents the body from going into the deepest stage of sleep, when the body naturally restores and replenishes itself. Even if you manage to stay asleep for several hours, you’re most likely not going to awaken feeling refreshed. And most sleep medications do little to help you achieve that deep sleep. They may help you get more hours of sleep, but probably will still not give you the deep sleep you need.

5. I read about this new product that cures fibromyalgia.

This can be one of the toughest comments to deal with because it is usually said by well-meaning friends or relatives who genuinely want you to feel better. The products are frequently some kind of “natural” supplement being sold through a multi-level marketing plan and are very expensive. If those making the suggestions are casual acquaintances, I generally just tell them I appreciate their concern and will look into the product. However, if it’s someone closer to me who is likely to keep asking if I’ve tried the product, I go on to explain that there are dozens of products out there claiming to cure or at least improve FM and I just can’t afford to try them all. Read Let the Buyer Beware for tips on how to evaluate product claims.

4. At least it’s not fatal.

My first thought in response to this comment is always, “Yeah, but sometimes I wish it was. At least then I’d know there was an end to the pain.” I rarely say that, though. Of course I’m glad it’s not fatal. But that doesn’t help reduce the level of my pain or the depth of my fatigue. Nor does it help to raise research funding or bring attention to the needs of FM patients. Understandably, people tend to be more interested in preventing death than in improving the quality of life. Maybe I should start actually saying what I’m thinking when someone makes this comment. At least it might get their attention.

3. You just need to exercise more.

Often this is another way of insinuating that you’re lazy. This comment in particular has always bugged me. Perhaps it’s because I used to be a dancer and aerobics instructor. If more exercise were the answer, I’d be all over it. Yes, exercise is an important component of any fibromyalgia treatment plan, but it’s only one part and it has to be approached slowly and carefully to avoid triggering a flare. Read Fibromyalgia and Exercise for more information on how to incorporate exercise into your FM treatment plan.

2. But you don’t look sick.

This comment puts the FM patient between the proverbial rock and hard place. If we let ourselves go and show how we actually feel, people are uncomfortable and don’t want to be around us. On the other hand, if we manage to fix ourselves up and put on a brave face, no one realizes we’re sick. If you think about it, most chronic illnesses are invisible. My dad had heart disease but looked great until the moment he died from a massive heart attack. My mom had pancreatic cancer but looked fine. She didn’t even know anything was wrong until it was too far gone to treat. She didn’t “look sick” until the last couple of weeks of her life when she was confined to bed. Just because someone doesn’t have visible sores or a crippling deformity doesn’t mean there’s not a serious illness just under the surface.

Ta Daaa…… Here it is – the number one thing you should NOT say to a fibromyalgia patient:

1. It’s all in your head.

This is the all-time worst and most insulting thing you can say to someone with fibromyalgia. I used to launch into an explanation of how FM is a very real physical illness, complete with symptoms, etc. Now I simply say, “You’re right, it is in my head. Researchers have found that there is a problem with how my brain processes pain signals.” Enough said.

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3 Comments

  1. Sonia said,

    It were as if you were talking to me. Everything said applied to me too. I was diagnosed with FM since 2000 and I have been in so much discomforts everyday. I just turned 50 and I already had to retire from my job because of this condition. It has been affecting every aspect of my life but I am still holding on. Like Job in the bible “I will wait until mu change comes. Only those with this condition really understand what we are feeling. I am staying home now but i wish I could go back to work. If I don’t feel better, I can’t think about going back to work. I am however, hoping that I will find some ways of making money from my home.

  2. Barbara said,

    It is so good to hear from another Christian women with FM. My FM has caused me to get closer to the Lord. So much of what I was “doing” has stopped and now I’m more focused on “being”. This is difficult at times. I don’t have the very awful pain everyday – I have pain but not the kind where you can’t think – that type is only occasionally – thank God. I have very bad fatigue and am very sensitive to temperature changes. Just blow drying my hair can make me feel very sick. I struggle almost daily with the fact that I am not working. When I feel not too bad I think I’m just being lazy and I should go get a job. Then moments latter I might feel awful, unable to concentrate and too fatigued to do anything. I drive myself crazy. I need to keep my focus on what God has done for me and that He is enough. I need to stop thinking about what others may think about me and that I’m unemployed. I wish I could find a group of people with FM to talk with. Anyway thanks for listening 🙂

  3. evelyne said,

    Wow, reading this was like seeing my thoughts written by someone else. I was diagnosed in 08. I myself as a Christian find it difficult sometimes, the healing process, believing I am healed, but knowing I must be patient with Gods timing. Thank you! Most forums I go to or things I have read are just people complaining and talking about medications, even reading that at times can be discouraging when its meant for support.

    Blessings,
    Evelyne

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