Fibromyalgia But You Don’t Look Sick

Many of my readers are of the same age bracket and that is 40/50 year old women that are not only dealing with the fact that our bodies just don’t work like they did in our 20s and 30’s.  In fact some may be coming to the realization that our 20’s and 30’s bodies weren’t working that well either.  So we pushed and pushed and like a popular ad said, “Never Let Them See You Sweat.”

Well, that’s what most of us have had to do, never let them see you sweat if you were going to apply for that promotion of equal employment opportunity and that others apply for.  We never really had many problems getting that job promotion or new job per say.  What made it difficult to keep was the pain and stiffness and feeling like we have the flu, never rested, and hiding the fact that we really didn’t know what was wrong with us.  All we knew is we didn’t feel well.  And since there is no consistency to this illness, being inconsistent is what seems to get you in trouble faster than greased lightning!

Now comes the chicken or the egg philosophy.  Was it a sudden illness or car accident or motorcycle accident or just some form of fall that woke up this ugly sneaky beast that says, “But you don’t look sick”?  Or did it show up on its own through another illness and decided to jump on for the ride?

Does any of this even matter anymore?  We just know everything we feel is amplified and there is no one in our non-fibromyalgia circle of friends and family that is ever going to understand.  That’s where the grieving of your old life begins.  We have to begin making adjustments so we can have some quality of life today.

The best thing I have done for myself is educate myself.  In 1987, the American Medical Association (AMA) recognized fibromyalgia (FMS) a true illness and cause of disability.  It still has a long way to go when it comes to treatment.  The only way I felt I was to be believed of my pain was document, document, document my daily activities to find what works what doesn’t.  I suspect it will never be finished and I have come to an understanding about this.

This is a very high maintenance illness.  I know many times FMS has gotten in the way of even Flylady.  Now I see it was more me that was getting in the way!  Flylady is probably one of the easier tools we can use in our management of FMS because it is babysteps, jumping in where you are, and you are never behind.  How refreshing if only we would use these simple steps.

So, since you can get used of the idea of having a control journal for Flylady, why not get yourself a control journal for Fibromyalgia.  The book I consider the bible to this illness is “Fibromyalgia & Chronic Myofascial Pain” A Survival Manual by Devin Starlanyl and Mary Ellen Copeland.  It is in it 2nd edition now and they call their control journal WRAP which stands for Wellness Recovery Action Planning  It is developing a wellness toolbox and after all isn’t that what Flylady is doing? She has made available many tools she has already tested out and work well.  Start being good to yourself.  Fibromyalgia is like that inner brat tugging at you too and she will not stop until she is heard.  Believe me I know.  That is why I believe in The Flylady Way. I have been able to use these principles in many areas of my life and continue to look for more ways The Flylady Way can be applied.

I have given you some information about FMS, some tools that work, and help you and I find ways to increase our quality of life.  One of the best tools and habits for me has been March Habit Getting Dressed To Shoes.  I still have pain but these past 38 days I have not let it get the best of me.  Keep Flying! Marilyn

6 Replies to “Fibromyalgia But You Don’t Look Sick”

  1. So glad for you for being able to fly with your fms. I couldnt imagine what would be a simple task for me might take serious planning for you. I hope one day they do find a reliable true treatment for it. In the meantime prayers and lots of *hugs* to you and the others with it. –flybaby jessy

  2. Let’s not forget those of us 20-somethings who are already suffering from FMS (I was diagnosed at 18 but am sure I had it a few years prior to that)! In a way I feel I have a bit of an advantage as I never learned to do things full-force and am so used to pacing and finding easier ways to do the same satisfactory jobs. In any case it sucks but I totally agree that without FlyLady I was lost as to how to keep a decent home and take care of my family when all I could focus on was how bad I felt.

  3. Hi, Marilyn! I just found your blog and was reading along. I have FMS, too. On top of sarcoidosis. I know exactly what you mean. Every day I have to plan, plan, plan. And I have to keep the PEACE in my home because stress is a MAJOR factor, at least for me. And I’m very easily overwhelmed if the house is out of order.

  4. Good Evening Marilyn,

    Flybaby Linda here, I just joined Flylady a few days ago so I am still reading up on the process. I am also a plegee to FMS. I was diagnosed in my late 20s and have suffered from it for almost 20 years. In conjunction with FMS I also suffer from Arthritis in all my joints, bursitis and tendonitis in my shoulders and hips. I have allergies and asthma, and an entire laundry list of ailments. However, even before I found out about Flylady I knew that I had to take life and all that I had to deal with one bite at a time. It does at times get very overwhelming but no one can take care of me any better than me. And I intend to do that to the best of my ability. My lastest struggle is knowing what exercises I can do that will not have me incapacitated for the rest of the week after doing them. This has been a tremendous struggle and even more discouraging is when I have done it consistently for over 3 months and have not lost weight but gained. Yet, I continue because it is what I must do for me. My eating habits leave a lot to be desired but am working on that too. I am also cleaning out the closet and getting rid of pretty much anything that I cannot currently wear. I just have too many and not enough places to put them. I will continue to read and start applying the principles to live by in order to have more order in my life. Thank you for education others about FMS because I get the same looks and comments from people who do not understand what we go through.

  5. Sorry I didn’t get back to reading this sooner! You are strong. If you want to join the closed The Flylady Way group I can add you. We are a fun bunch that believes humor prevails.

  6. I know I’ve found this late in the game, but THANK YOU. I am in my 50s (ok, so closer to 60 than 50, but who is counting?) … and I’ve had FMS since the 1980s. It took years to get a diagnosis, and in the beginning it was such a struggle.

    I’ve just joined the FlyLady site in the past month and am working on building my routines. It’s difficult when there are those “bad days” scattered in the “not so bad days”. You know, the days when getting out of bed takes an hour. The heck with putting on shoes, I’m lucky if I can stand up.
    I no longer work full time, so I’ve lost my “rhythm” in life … and life got out of hand.
    I’m hoping that the FlyLady can help me put some rhythm back in my world.

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