Living with Fibromyalgia

I keep wondering when full-body transplants will be available. My body is confusing itself with an 80 year-old woman. But before you stare at me with that glazed-over look, let me start at the beginning.

My headaches started when I was 15. I was healthy and in good shape, playing both basketball and softball for my small school’s (terrible) teams. I don’t remember the first time I realized that my sometimes-headaches were happening more often, and then they were coming every day. They weren’t migraines and they weren’t even that bad in terms of headaches. Eventually, though, it became bad enough that I brought my issue to my parents, and the adventure began.

15 years later, I now know what is “wrong” with me. But over those 15 years, I’ve seen four neurologists, one orthopedic doctor, one rheumatologist, and several physical therapists. I’ve had two CAT scans and four MRIs. I learned I have a benign Rathke’s Cleft cyst on my pituitary gland, but it allegedly is asymptomatic. I’ve tried countless prescription medications, most of which made me feel worse. I cut out dairy, caffeine, peanut butter. Some things helped, but nothing was enough.

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It wasn’t until a conversation with a friend that I started to get a clue. She said, “You know, you sound a lot like my friend who has fibromyalgia. You should talk to your doctor.” I immediately ran to Google, and when I read the list of symptoms and the stories from other patients, it was like reading my life story. I found a rheumatologist who diagnosed me and started treating me, and that was 5 years ago.

According to the Mayo Clinic’s website, Fibromyalgia (FMS) is described as “a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.” There is no definitive cause, and some speculate that it can manifest after an injury, stress, infections or no reason at all. There is no blood test or screening that can determine if one has it, and a very large portion of the medical community doesn’t even think it’s real. Only a physical exam of 18 tender “pain points” on the body can get you a diagnosis.

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I originally had pain in almost all of those points. 5 years later, after medication, exercise, healthier eating, etc, I’ve narrowed it down to 11. You need to have 11 of the 18 to be diagnosed, so I would be considered a “mild” case. I know others with this illness that can’t get out of bed, can’t work, can’t function. I am thankful every day that I have never been that bad.

But that being said, there are good days and bad days. No two people with FMS will feel the same way. One thing that is consistent is I have pain every single day. There are mornings when, if I wake before the alarm clock starts shrieking, I am aware of the pain before I open my eyes.

My head, neck and shoulders are the worst. My doctor told me that since most of my pain points are in the upper half of my body, it’s no wonder I suffer with so many headaches. There isn’t a minute of the day that I’m not aware of my right shoulder. If someone hugs me too hard, it hurts. If someone playfully punches me, it hurts. It may not hurt enough to be worth mentioning, and it’s certainly not going to ruin my day, but the hurt is always there.

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Sometimes the pain is good, like in the wonderful times I’ve been blessed to have a massage. I always tell the therapist that I have FMS so I don’t end up feeling worse when I leave. Sometimes I’ve asked them to “go rough” on a certain spot until I can’t tolerate it anymore, because when that point has been released, there are a few precious moments of no pain. Even as I type this, my head is resting back against my chair and I’m struggling to keep my eyes open. And I went to bed at 8:45 last night. *Sigh*

The hardest thing has always been to stay positive. I’m not an optimistic person by nature, and the moment I finally accepted that, I began to learn to not be so negative. But imagine how you feel when you have the flu; the ache, the stiffness, the pain when you stand, the pain when you lay down, the pain. Take away the crappy-cold-symptoms-part of the flu, and you have FMS. And I have it every day. (So when I actually get the flu, just stay away). 🙂

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Some of you may have heard of FMS and some of you may not, but the real point of this blog is to make people aware. There are so many illnesses/diseases that don’t “look” like anything serious. Chronic fatigue syndrome, myofascial pain syndrome, celiac disease, endometriosis, lupus, hypothyroidism and more. There are millions of people suffering with illnesses that have no cure, and constantly get comments like “Well, you don’t look sick.”

As someone with FMS, the part that feels the worst is knowing I’m living my life with something that will never go away, because it’s not even really a disease. It’s hard to find a doctor that can talk about it without rolling his eyes. I am thankful to God every day that what I deal with is not life-threatening, and that makes me try a little harder to be a happy person.

But there’s good days, and there’s bad days. My hope rests on the fact that the bad days make the good ones that much better. I can thank my Lord every day that I am able to get out of bed, I work a full-time job, I can still walk my dogs even when it brings me to tears, and I will live a happy life. There are so many that can’t say that.

Still, I better be pretty high on that full-body transplant list.

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6 thoughts on “Living with Fibromyalgia

  1. talleygilly says:

    First, I love your new blog design (or I may be behind on this). And I so appreciate your openness about this and it really helps me understand more what you and others with FMS are experiencing. It makes me hurt thinking of the pain you experience every single day. I am glad though to hear that your efforts with your health seem to really pay off, good work on that!!!

    You could/should submit this to a medical publication to help educate people about FMS – think about it. You’ve already done the hard part – writing it.

    • Jen Hurowitz says:

      Thank you! I love the new design too. After I took down the summer-theme (*sob*) I didn’t like the old style anymore. Of course, changing a theme messes with all your settings, so I hope I ironed out all the kinks. 🙂

      There are actually a LOT of blogs about FMS and even more “technical” medical publications. I thought of linking some here, but didn’t want to overwhelm with too much information at once. I found a blog writer who also suffers from FMS but she can’t even work, so I’m thankful her inspirational writing continues even though she must feel hopeless sometimes.

  2. Anne Katherine says:

    I never knew you had this. And so I so applaud your positive attitude. I know how just having a normal headache or cold can put me in a terrible mood…so I can only begin to image what chronic pain would do to me. So wow. Hugs. And I wish I could poof it away for you!

    And I never knew so much about fibromyalgia – I agree with Alexandra – I could see this being really useful those who are newly diagnosed.

    • Jen Hurowitz says:

      Oh Anne, you are sweet to tell me I have a positive attitude. LOL! I certainly don’t feel that way. I have thought of writing about this more, and I’m glad you have all responded this way. I’ll have to do some more research! I already read so much about it, but I want to spread the word.

  3. rumpydog says:

    I’m very glad I ran into your post today. I’ve kinda wondered if maybe this might be an answer to the physical problems I have.

    • Jen Hurowitz says:

      You should get yourself checked out! Find a rheumatologist and have those pain points tested. Just a warning, the first time you go, you may leave feeling pretty yucky. I always feel terrible after I leave my doctor’s office because he tests those pain points EVERY time. But it’s worth it, to find the answer to all the questions of “Why do I feel so horrible?” Good luck, and keep me posted!

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