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Not to Be a Whiner…

February 26, 2015

I’ve been doing a lot of reading over the past few days, struggling to make sense of a diagnosis I received several months ago that is only now beginning to become real. My first thought upon being told I had fibromyalgia was yeah, whatever. I know one or two people that have fibromyalgia, and sorry, but that’s not me.

I mean, look at me. How could someone that chases a three year-old around all day, and plays volleyball four times a week, and tries to get in 10,000 steps a day, and is almost through with a pretty stout master’s program…how could that person have this illness that sends these other people I knew to bed most of the time? Or did I just have a really poor conception of the illness?

It became rapidly clear to me, though, as the diagnosis started to sink in, that if I were having trouble rationalizing it and making it mesh with the Lori I knew myself to be, that certainly those around me would also be having trouble doing so. Especially since the question on everyone’s lips seemed to be “what exactly is that, anyway? You don’t look sick?”

I didn’t have a good answer for anyone, including myself. My rheumatologist hadn’t really given me any information about what to expect or how to proceed with my diagnosis, beyond trying to get a good night’s sleep in order to better heal my nervous system. In the early days and weeks I was constantly on the internet trying to get a handle on exactly what fibromyalgia was, even. I felt so ignorant. All I really knew is that it had something to do with the weird pain I had been experiencing, and the chronic fatigue that didn’t really seem to have a source. But I couldn’t figure out what caused it, or how it was successfully treated. The internet was full of alternately vague and/or repetitive information that was only moderately helpful.

Claudia Craig Marek’s book Fibromyalgia: A Patient Expert Walks You Through Everything You Need to Learn and Do the First Year, though, turned out to be a goldmine of information as well as a confirmation of a myriad of symptoms I had not even realized were part and parcel of the syndrome. Fibromyalgia affects a number of different systems of the body, hence the “syndrome” designation. It is comprised of a host of musculoskeletal symptoms that you may or may not experience, such as widespread, aching pain, stiffness in muscles, tendons, and ligaments, TMJ, headaches and migraines, restless leg syndrome, and joint pain. There are central nervous system symptoms, such as insomnia and non-restorative sleep, irritability, anxiety, depression, apathy, and impaired memory. Fibromyalgics can suffer from IBS, genitourinary syndrome, skin conditions, hair and fingernail issues, eye issues, allergy issues…the list seems endless.

Reading all of this, on the one hand I felt vindicated. YES. I was not crazy. I was not a hypochondriac. This was stuff I had dealt with since I was a child–particularly stuff like IBS, dry skin, brittle nails, allergies…things I hadn’t even attached names to. On the other hand, though–what did this really prove? Scientists still had no clue what caused fibromyalgia, or how to cure it.

Craig provides a letter to help explain this very difficult to explain illness to family and friends, in words that are much better than any I can come up with.

“Fibromyalgia isn’t all in my head, and it isn’t contagious. It doesn’t turn into anything serious and nobody ever died from fibromyalgia, though they might have wished they could on really awful days. I can’t control how often I feel good or how often I feel terrible. …

Fibromyalgia is a high maintenance condition with lots and lots of different kinds of symptoms. There’s no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That’s about the best I can hope for. Sometimes I can take a lot of medication and still not feel any better. That’s just the way it goes.

There’s no cure for FM; it won’t go away. If I am functioning normally, I am having a good day. This doesn’t mean I am getting better, because I struggle with chronic pain and fatigue for which there is no cure. I can have good days, weeks, or even months. But a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone has pulled a plug and all my energy has just run out of my body. I may get more irritable before these flares, and suddenly get more sensitive to noise, or just collapse from deadening fatigue. Other times there may be no warning; I may just suddenly feel awful. I can’t warn you when this is likely to happen, because there isn’t any way for me to know. Sometimes this is a real spoiler, and I’m sorry.

Fibromyalgics have a different kind of pain that is hard to treat. It is not caused by inflammation like an injury. It is not a constant ache in one place like a broken bone. It moves around your body daily and hourly and changes in severity and type. Sometimes it is dull and sometimes it is cramping or prickly. Sometimes it’s jabbing and excruciating. If Eskimos have a hundred words for snow, fibromyalgics should have them for pan. Sometimes I just hurt all over.”

Besides pain we have muscle stiffness, which is worse in the morning. Sometimes when I get up out of a chair I feel like I’m ninety years-old. My fingers are stiff and my coordination is off. I walk slowly up and down steps because I’m stiff and honestly afraid I’m going to fall.

Because I feel like crap most of the time, I’m usually pushing myself to get stuff done in the times I feel somewhat normal, which means I’m usually pushing myself too hard. When I do this, I pay the price. Usually I end up compensating by getting sick or needing to rest for days afterward because I have expended too much energy.

Another symptom I have is problems with memory and concentration, dubbed fibrofog. Short-term memory is the worst. I am constantly looking for things I’ve misplaced, walking into rooms and not remembering why I’m there, leaving my to-do lists sitting on the counter, forgetting appointments, and forgetting what someone told me ten minutes earlier or just the day before. This is apparently pretty normal for fibromyalgics. I was worried I was getting Alzheimer’s.

Then there are the sensitivities–to heat and cold, to noise, to bright lights. To certain smells, like fish, chemicals, or perfume. They make me physically ill. …

So there’s that. Will any of us ever really understand what we’re going through? Doubtful. But knowing some of what we’re facing can give us all a little more patience, acceptance, and love to make dealing with it–on all sides!–a little easier.

4 Comments leave one →
  1. February 26, 2015 5:01 pm

    My dear Lori. For lack of better words to say……….. sucks, doesn’t it?

    I am so sorry that you are going through what you are going through. There is so much in this journey. Learning to live/accept with health issues. You have just described me to a ‘t’ in your post. I can tell you that I know exactly what you are feeling. I’ve been dealing with this for years and I still don’t accept it. I keep thinking any day now I am going to bounce out of bed and go, “Phew! Glad that part of my life/learning adventure is over. Man, did it ever suck! Glad I don’t have to deal with that. Ever. Again”!

    I keep telling myself over and over. I am not my body. I am not my body. There is a constant war going on between body and spirit. My spirit has energy and isn’t handicapped by illness. My body, like yours, is. It’s a process.

    With God, all things are possible. My biggest goal through all of this is to try to keep a sense of humor and to keep looking up. Trying to find the good and positive even on the worst days. Sometimes, it is hard. Really really hard and I mourn what I used to be but then we pull up our boot straps and turn our faces up.

    You are a wonderful strong person! For some reason, this is part of our life experience/lesson. Growing pains.

    As for the short memory thing……. if your husband gets fed up having the same conversation with you over and over and over again only you feel like it is the first time you’ve heard/said something………. tell your husband to call mine. He’ll totally get it. Our two husbands can make fun of us and commiserate together.

    Oh, by the way. The spoon effect. You described the spoon effect. You push and push and push and then it’s all gone……. think of spoons and what you are willing to spend your energy on each day. Is the spoon worth it?

  2. February 27, 2015 9:29 am

    Rats! That is just hard, hard, hard news. I’m sorry that you’re facing this–or have been facing this and have to keep doing so. Two of the women I’ve loved most in the world have suffered from fibromyalgia, and it is no picnic. I will be praying, truly, for good meds, good doctors, and good methods for you to manage this.

  3. February 27, 2015 5:01 pm

    Rachel, thank you so much for the blessing this response is to me. For the reminder that I am Not My Body. AMEN to that! I LOVE the spoon theory. That is, quite simply, the perfect way to describe that ongoing battle between what you want to do and what you know you’re going to be able to do.

  4. February 27, 2015 5:17 pm

    Anaise, thank you for your prayers! I appreciate them so much. I will try not to allow this to become the fibro blog, but it means a lot to know you guys are thinking of me and praying me through this.

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