January 11


I Do Have Fibromyalgia

By Sue Ingebretson

January 11, 2011

effects list, Facebook, Fibro effects, housebound, muscle pain, sleep, Twitter

Do you have fibromyalgia?

I’m still amazed at how often I’m asked that question — from email referrals, social media posts, and at speaking events — I hear it over and over. Keep in mind I’ve written a book about healing from fibromyalgia entitled, FibroWHYalgia (www.FibroWHYalgia.com). My bio listings on both Twitter and Facebook explain my “living well with fibromyalgia” philosophies. My blog (www.RebuildingWellness.com) posts articles about health and healing each week. My Facebook fan page (http://on.fb.me/guEXlz), has loads of articles, current news, and discussion topics all geared towards encouragements to heal from fibromyalgia and other related chronic conditions.

But yet – people wonder…

I s’pose that could be for a variety of reasons. My positive attitude might throw them off the fibro trail. My constant chatter about fitness activities or plans I’m making might not sound like someone who is housebound by fibromyalgia (they’d be correct in that assumption – I am not housebound). The fact that I don’t post comments about visiting doctors or pharmacies might not seem very “fibro-ish.”

These are just my speculations, but I assure you, I DO have fibromyalgia. I have heard of people who’ve been able to heal entirely where fibromyalgia never rears its ugly head again, however, that’s not me. I believe that I’ve healed about 90-95%. That other percentage is just waiting to pounce if I change my healthy habits (poor nutrition, lack of exercise, unresolved stress, etc.).

But, as I mentioned, on a daily basis, fibromyalgia affects me very little. To illustrate my point, I’ve come up with this list of how I’m reminded that fibromyalgia is still part of my life:

— I can’t wear anything that pulls or places pressure on my shoulders, neck, or upper mid-back such as; heavy-hooded jackets or sweaters, backpacks, heavy purses, or racer-backed tank tops or bras.

— I can’t lift anything heavy, and if I do, I often feel the results days or even weeks later.

— My joints, muscles, and sites of former injuries tell me when the weather is about to change. I don’t need to hear a weather reporter talking about the rise and fall of barometric pressure.

— I have certain joints that seem injury-prone. Therefore, some minor activities can affect me in major ways. For me, it’s my neck, hips, and knees. I used to have a terrible time with my hands and wrists, but they’ve improved 100%.

— I wake each morning with stiffness and/or pain that directly relates to factors such as the prior day’s exercise, my level of sleep, any current injury, or current stress levels. The key to this stiffness (as outlined in my book) is what I call “burnoff”—how quickly the stiffness begins to ebb. Mine doesn’t last very long and is usually gone by mid-morning.

— I function best working within my “Window of Well.” In my book, I explain that I have my highest energy levels from late morning until late afternoon. I function well when I work within what my body has shown is best for me. I begin to fade fast around 5:00 pm and prefer to follow my evening routine of working on my computer/writing until 8:30 or so, then follow up with a warm bath and pleasant reading. I’m typically snug as a bug by 10:00 pm. Obviously, I can’t always follow this routine, but when I do, I’m honoring the natural cycles of energy that work for me.

— I cannot wear heels. I work well with all of my “fibro effects,” but I’ll admit this one does bother me. Wearing heels of any consequence seems to throw off my entire body’s balance. I can suffer resulting hip/neck/back pain from just one morning of wearing heels to church. I also suffer from leg cramps at night if I try to wear heels to parties or other fun activities. It’s simply not worth it. The sad part is, it’s hard to look dressed-up, or at least, not frumpy for special occasions, but this is truly the least of my worries.

Do you have a list of your own? I’m guessing you do. Please share your thoughts and ideas with me here!

  1. Sue,

    Thank you so much for this post today…it’s just what I needed. I have been wondering for weeks now if I possibly have symptoms of Fibromyalgia. After reading this post today, I am certain that I need to look into this further.

    Your information is always outstanding, and I so appreciate you sharing your journey with the rest of us!

    Keep it up…LOVE IT!

  2. Hi Sue,

    How I love this post! I often get asked that myself (particularly in social media outlets). And like you, I am often zipping out comments about exercise, my outlook (I was even called annoyingly cheerful…LOL; still one of my favorite comments EVAH!)

    Most days I feel good, there are however some days when I have pushed too much or not taken care of myself when I feel like crud. That does not mean I’m still not grateful for my life, that my perspective is still sunny and I’m happy! Nor do I feel the need to apologize for it anymore…it’s who I am…take it or leave it.

    I am not defined by my fibro, just like I am not defined by being left handed, having red hair, or being a Pisces;-) They are simply parts of me that make up the whole.

    I have certain joints…(back, hands, and hips) that are way more accurate than my local weatherman.

    Like you, my best energy times are late morning to late afternoon. I recognize it and work with it rather than against it.

    A few days of not eating properly and drinking enough water and I am sluggish, more tired and definitely more irritable.

    Did this all come overnight? It took me about a year to make some conscious choices about my health and what I expected from myself (that in and of itself was huge!)

    Thank you for an insightful and thought provoking post:)



    1. Thanks much for the great comments Danielle & Dana! Getting healthy isn’t a destination like a “You Are Here” sign. It’s a constant journey but one that’s SO well worth it! Isn’t it great to know we share in this journey together?

  3. The curse of invisible illness! When our public sees us out and about, we’re having a good day (or hour) and don’t actually look sick!

  4. I think the problem is that as fibromites we get tired of non fibromites telling us we would just be ok if we did ……..whatever it is they are selling.The fact that you can say yes you have it assures them that you are coming from a position of experience and not selling them a snake oil cure.
    I agree that the best way to live with fibro is to stay as balanced as possible whether it is the food we eat or the stress we endure or the physical acticity level.I too am frustrated that i cant wear heels,even good quality clarks with 1 1\2 inch heels are unbearable:(

    1. I hear you! I have to say that I bought a pair of Danskos for myself at Christmas. So far, I love them! I found an outlet site 😉

  5. What I love about you Sue is… how you are able to be supportive of where people are at in their fibromyalgia journey while also sharing how you have been able to manage it, all the while not creating a valley of misunderstanding between those who are still struggling and those who have found wellness! (was that the worst run-on sentence ever?)

    If that doesn’t make sense, let me just say, I love how you relate to others and how you help to clarify what the picture of fibromyalgia is…because it is not just one picture. That’s kind of the frustration of it, but also, it’s the reality and a good one because it gives us hope.

    I am blessed that I am able to function at the level I do, although no where close to what I want that to be, so it confuses people. Even close family members are confused by it when I have a really good day or period of time where I seem to function “normally”… then the fallout is unexpected and harder to comprehend for some reason. I find people are more inclined to think I do not have an illness as much as perhaps “psychological challenges” because of this apparent conflict between good days and bad.

    Thanks for reminding everyone that the picture of fibromyalgia varies. Also for reminding us that others, too, have a chance at finding the picture of health, even while living with fibro.

  6. Thank you!

    I seldom tell people I have fibro, because I don’t appear to have anything wrong. I work in a retail environment (because I need the $, not by choice) that involves long hours on my feet, heavy lifting etc, so I appear to be strong & fit. When I say I have fibro I am treated like I am just making excuses for laziness! They don’t realize that while I have more strength than many “healthy” people, it is still much less than I used to have.

    Like you, I cannot wear heavy coats, carry large purses, can’t stand a camera around my neck, and have to strip off my bra the minute I get home from work. I gave up trying to style my hair over a decade ago because I have no strength when I raise my arms above my head — luckily I have low maintenance curly hair. There are days when my body feels like there are heavy weights tying me down — my arms feel like they will fall off, and my legs feel like rubber.

    Even others with fibro have trouble accepting that I have it too, because I don’t appear to be suffering as much as them. I tried joining a “support” group, but it turned out to be a “my symptoms are worse than yours” competition.

    Drs haven’t been much help. One told me I would feel 100% better if I lost weight. Another said the same if I used my CPAP machine every night. Another said I needed more exercise. And so it goes.

    I choose to “live with” fibro rather than “suffer from” fibro — I think that makes a big difference.

    1. I love this post! As you’ve so beautifully illustrated, we’re each different and experience our conditions in different ways. Like you, I don’t use the word “suffer.” As an extension of that, I also don’t describe myself as a warrior or at war with my condition. That would be like fighting with myself. I’m not going to battle and neither am I a victim. I think that words are very powerful and we much make careful choices. Thanks so much for your carefully chosen words!

  7. I love your site and your book. It was the first download on my new Kindle. It has really opened my eyes.

    I am much like you and Jean in some of the things fibro affects. Like Jean was told I exercised (tried), lost weight (to date 92 pounds) and wear my CPAP every night. Guess what, I still have fibro! I have gained insight from your book and started a blog to address some of my interests and challenges to help me interested in life.

    Keep up the excellent work.

    1. Thanks Donna! Exercise is a toughie, I understand, but it something we must pursue. Daily. Even if we don’t feel like it. (I’m preaching to the choir, right?) I’m so glad you’ve begun blogging because you’ll find your voice and develop your spine along the way. Kudos to you! And, I’m so proud to have my words on your Kindle. Warms my heart! If you’d be inclined, I’d appreciate a review on Amazon. Just repeat what you’ve said here (that you’ve gained insight). I’ve learned to be up front and ask (even if it’s outside my comfort zone), because every review really does help. It’s all about getting the word out there. There is life after fibro!

  8. Great post, there is one thing that really bothers me about when a person questions if someone has a chronic illness because they are living a seeming normal life. By questioning their illness a person devalues all the hard work the person who has a chronic illness has put into being healthier and living a fuller life. It isn’t easy and the person with chronic illness should be applauded for their hard work, not scolded, to any degree!

    Jean mentioned a “my symptoms are worse than yours” competition. Sadly, I too have felt like others have devalued my efforts and my illness because of this. Yes, different people have different extremes of symptoms. That does not make anybody’s illness more real if their symptoms are worse, just as it does not mean that someone who has worked hard and has less symptoms is any better or less chronically ill than someone who has worked hard and not had much symptom improvement. With fibromyalgia, we are all “fruits,” but we are not all “apples.,” We are “apples” and” oranges.” We should all just encourage each other to be healthy and support each other, not try to say who is more or less chronically ill.

    P.S. If you’ve found some cute flats/kitten heels, please pass them along! I’m always on the look out for them, as my body hates high heels as well.

  9. Hi Sue. I was just thinking that I used to get really annoyed when people would comment on how I was “looking well”, because I didn’t feel the way I looked. Now I am feeling quite a bit better than previously, when someone says I look well I can just smile and say “thankyou”. I know that looking and feeling well on any given day is great. It’s true, it may be temporary, but I don’t feel the need to explain that to everyone any more. Now that I don’t wear my fibromyalgia label around my neck, I’ve stopped feeling like I need to justify myself – well or not – to others. Does that make sense?

  10. PS. I gave up on heels a long time ago, but that’s ok because I’ve never understood some women’s shoe obsession anyway 🙂 There are plenty of cute flats out there nowdays. Comfort (and avoidance of extreme agony and an inability to walk) wins out every time for me.

  11. Anita,

    Your comments make complete sense. It’s great to get to a place where you know yourself well enough to not feel the “sting” of comments from others. That’s the goal — for sure!

    And, about the shoes? I LOVE shoes! I think they have individual personalities. I can see darling shoes in the store and dream, “Oh, if only….” I wore heels for my working life every single day for about 20 years. It was a BIG deal for me to relinquish that part of my life. I no longer wear dresses (I’m short and think that dresses with flats make me look like I’m standing in a hole). I feel OK most of the time in jeans and tennies, but I miss being able to get dressed up and look more feminine. I do recommend the Dankso shoes, however. So far, I have one pair and love them. They come in styles a bit more “fun” than simply clogs.

  12. I am a 42 yr. old female with a history of several knee scope surgeries on both knees & 1 repaired torn meniscus on my r knee. My current problem as i am typing this is upper thigh pain that has me almost crawling ouT of my skin.I also have had diarrhea or soft stools for about 3 months. Extreme fatigue as well. I thought maybe dehydration from the loose stools, but am an avid fluid intaker. I am sitting here w/ a heating pad on my legs,which seems 2 take the edge off a little or more like a calmer thing i think. My anxiety is extremely high also. Just recently divorced in july so i have no health insurance which has stopped me from seeing a DR. I can no longer take the pains in my thighs which also remind me of a toothache ,but in my legs.I would greatly appreciate some feedback asap. Thank you all. GOD BLESS.

    1. Beth – there are so many symptoms that can be related to fibromyalgia. It’s wide variety. I certainly can’t diagnose anyone with this or any other condition, but your symptoms sound very familiar and common for those with fibromyalgia. Keep in mind that stress plays a very large role in the development of this syndrome. It sounds like you’ve had a lot of stress in your life. Anxiety is something that feeds the problems and creates a vicious cycle. You worry more, so you feel worse which makes you worry more. I understand that scenario. Please feel free to review the posts on stress, nutrition, and fitness that you can find here on this site, a well as the articles I post on my News and Views page her: http://www.Facebook.com/FibroWHYalgia. Let me know how you’re doing.

  13. p.s. i also forgot 2 mention,that my nail beds/cuticles r forming a weird shape.the nail beds have formed hard lines.dont know if this is related or not?

    1. And, by the way — ridges, cracks, lines etc. in the nails can be indicative of nutritional deficiencies and/or stress. Please take care to eat well and do what you can to relieve your stress load.

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"True Healing requires a combination of healthy nutrition, healthy body movements, and emotional wellness. This is what I call the Restoration Trio" ~ Sue Ingebretson