Fibromyalgia: An Inside Look

07 Apr 2010, Posted by Jennifer Iannolo in wellness

I tend to keep pretty quiet about the fact that I have fibromyalgia. It is likely due to my stubborn sense of bravado (nothing to see here!), that it’s just something to suck up and deal with, but lately I’ve found that sharing my experience has helped me to find new resources with which to manage what has become more than a nuisance.

The disease itself can be quite insidious. Things first appeared to go awry when I was in college, when I slept through most of my first winter break. I found it odd, but chalked it up to depression from losing my dad and mental fatigue from my first semester in a competitive business school. Upon returning to classes, my body seemed to readjust, and any fatigue was taken in stride as part of the life of a college student.

But god, did I hate getting up in the morning. Worse yet, I would “sleep-talk” and have full conversations with no recollection, so if I woke up and found my car missing, I’d later find out I gave my brother permission to borrow it (confirmed by my mother). Who knows how much money I lent out. I dreaded having a corporate life, because my body just did not seem to like that whole 9-to-5 thing, so I knew I needed to find a lifestyle with some flexibility. As it turned out, I was an entrepreneur at heart anyway, so yay for the universe aligning.

I did go the corporate route for a short time, however, which ultimately led to the disease appearing in full bloom. Circa spring 2001, my office was located right in the heart of midtown Manhattan, and it was the happiest time in my life. I was traveling to Paris for business, eating in the best restaurants, and having a grand old time with some of the biggest food superstars in the world. Then the world changed.

Obviously, post-9/11 New York was a tough climate in which to work — stress levels were unbelievably high, and those of us traveling in and out of Grand Central had the joy of an occasional evacuation to go with the evening commute. I found that my thinking was a little foggy, and I was feeling achy, so I went to the doctor to see if it was the flu. He told me I was too stressed out, and that it was all in my head. Undaunted, I made him test me for everything from lupus to thyroid disease. Nada.

Around Christmas time I noticed that I was feeling unwell most of the time, and one evening as I shopped for gifts, my legs suddenly gave out. I managed to get myself home, but spent the entirety of Christmas Eve on my mother’s couch, unable to move. Feeling terrified, I rested up and proceeded to ignore the problem, hoping it would just go away.

But when my brain began to fail me, alarm bells started going off. My brain was the one thing I had always counted on, and suddenly I couldn’t remember the simplest of tasks. Like a critical conference call with the international division heads of my company — of which I was one. Oops. Realizing I could no longer ignore said problem, and riddled with physical pain, I called an orthopedist.

On September 11, 2002, this orthopedist listened to my symptoms. She was particularly intrigued by the sleep-talking, and mentioned that I probably had a number of sleep disorders. Awesome. After touching some very tender points on my upper body, she looked me in the eye and said, “This is easy. You have fibromyalgia.”

Sorry, what?

I felt simultaneous elation and depression. At last, this damn thing had a name — but no cure. And I had…a disease. One with barely any history of medical research, placed in the seemingly “random” category of illnesses that can’t be fully defined. The doctor started me on a tricyclic anti-depressant (Elavil) to regulate my sleep cycle, and it was as if my life were transformed overnight. No pain, clear head — all good. I struggled with the idea of being medicated this way, however. I’m not a pill-popper, and the idea of being on an anti-depressant made my skin crawl.

I soon found that if I worked out regularly, I could wean myself off the pills and take the natural route, which was preferable, and it worked well for a few years — until I started what is now the Culinary Media Network. Working out was replaced by hundreds of hours at my desk, and the pain set in. Sometimes I would wake up unable to stand, and would crawl to the kitchen to pop a few Aleve and get back to my desk, body screaming for mercy. I knew this could not go on, and once again returned to the medicine — only now, it didn’t work so well. Eff.

For the past few years I’ve been doing a lot of international travel, and keeping the insane hours of the entrepreneur, and every once in a while I pay dearly for it. I try to keep the stress at bay, as it is the biggest trigger, but sometimes I lose that game of chess. The fluctuations in the economy over the past year have not helped, so I once again tried returning to the medication to get the symptoms under control. It set off six months of insomnia. Six. Months.

And though much work has been accomplished thanks to said insomnia, I cannot begin to describe what it feels like to have my entire spine in a vice grip, where even a bra strap is a source of agony, and where it perpetually feels like I’m coming down with the flu. Where hugs hurt. And I really, really like hugs. Poor Chef Mark has had to experience it in real-time, where I can forget things from one minute to the next, and become a raving bitch at the drop of a hat.

So now I’m committed to finding a natural solution, because I could go on playing through the pain, but to me that is not an optimal existence — for me or those around me. The symptoms tend to appear in cycles, and sometimes I can go for months with no problems, but there has got to be a better way. I’ve resumed yoga, am heading back to the gym this week, and have made significant changes to my diet, but I don’t want to leave any stone unturned. I will make myself better…or die trying. No matter what the result, I will continue to live my life at full-throttle, but it would be great if I could do that with a bit more physical comfort and mental acuity. And no way in hell am I giving up the hugs.

If you are a fibromyalgia sufferer (or play one on TV), what natural methods have worked for you?

  • Jason

    I don’t know of anything beyond retirement to a life without other people. At least one close to me suffers similarly. So I believe you. I do not feel this pain directly, but I do know similar symptoms. Thank you for reminding me to stress my body more so my mind will stress less.

  • Not to sound commercial but with a background in chiro and clinical nutrition, I’d love to talk with you and give my perspective

  • I’m all ears. :) Just sent you a note. Thank you.

  • Jennifer – As I mentioned on Twitter, my wife also has fibromyalgia. For her, exercise, massage, and Mucinex (oddly) have worked well. She certainly has bad days, especially when she doesn’t get adequate sleep. This is harder since we have a one-year old daughter, along with three other kiddos. She first figured out that she had it when she was pregnant just over four years ago. I would love for you to connect with her.

  • Not to belabor an obvious point, but to paraphrase Top Gun – you’re writing checks that your body can’t cash. Yes, absolutely it’s important to keep the ball moving forward, to keep driving, to keep building, but you’re basically running deficits now in the hopes that profits will grow later to make up for them. History – both your personal one and the grander picture – says that tends not to work out too well.

    You’re getting the right things done – diet, exercise, etc. Sleep is a big one, and so is meditation. I’d look at a stress/energy release exercise form too, like boxing (just working out on the heavy bag, so you have something to physically punch) or martial arts, something along those lines that lets you vent emotional stress along with physical exertion. That’s what has kept me sane.

    Meditation’s tricky – find the form that works for you. Anything and everything works as long as it gets you breathing and zoned into the correct place. Sitting Zen, long walks in the woods, Tendai style hanging off a cliff by your ankles, etc. Find something that works for you.

  • I manage my Fibromyalgia naturally with the old cliches – diet and exercise. Since discovering yoga last year, and eliminating gluten from my diet, my symptoms are markedly improved. And when I let work consume me and I get away from the things that nourish me, I spiral quickly back into a constant state of flare – or the flu-like symptoms you describe. It is so hard to find and keep a balance. Somedays I am convinced Fibromyalgia is the Universe’s way of reminding me to SLOW DOWN.

  • Wise words as always, Mr. Penn. Trying to find the perfect storm of treatment. I just refuse to be fibromyalgia’s bitch, and let it define me.

    Dannette, slowing down is not my strong suit. :/

  • Amy

    I’ve battled Fibro since I was 14. Four the past 15 years I have been through every test imaginable, taken bottles of “cure-it” medications, and altered my diet 10 different ways. Nothing helped long-term. It bothered me putting these chemicals in my body when I practice holistic health with my three children. To work so hard to keep my home and children chemical-free yet be ingesting the stuff was not an option anymore. Our whole family sees a Chiropractor 3 times a week. I have noticed a pretty significant difference since going. My flare-ups do not last as long. I tend to have set-backs when I eat or drink something that is not excellent nourishment for my body. Even sneaking a small organic chocolate will set me back. Because I am so busy with three young children, I barely have time to eat a proper meal and this causes me severe pain. My Chiropractor says it’s due to my body being in constant “survival mode” so my body is feeding off everything which includes the bad and causing inflammation. He says his Fibro patients have showed good improvement drinking Ginger tea daily and of course a proper diet. I’m still working on that. I eat well when I do, just not enough.

    That’s my journey so far. Blessings to all of my Fibro-friends.

  • I was first diagnosed with costochondritis which developed into fibromyalgia. The only thing that has worked for me in getting rid of the pain was to drastically change my diet. I am now eating a vegan diet (a lot of raw food and raw fresh juice) and I feel a lot better.

    I’m not pain free, but it’s much better than it was before.

  • Kip

    I started having problems 16 years ago and have had many ups and downs. I know I’m in a better position than a lot of people, but I still have those phases of being in and out of functionality. Luckily I work for myself, from home, and can thus limit my interaction with people, but I’m sure you know that’s not always the dream everyone chalks it up to be… especially if you’re struggling with reading the same 3-word sentence 15 times and still not able to cognitively take it in.

    I’m convinced the symptoms are 90% down to sleep issues (and studies have been conducted to induce ME/Fibro symptoms in people who otherwise don’t suffer by messing with their sleep cycles), so what I’m always looking for is the thing to make me sleep the soundest. The problem is all the answers seem to be down to a fairly regimented lifestyle- eat right, exercise, follow a routine… but who has time for that?! Modern life and all.

    I’ve found swimming to be the most effective exercise in terms of making me sleep at night and not causing added pain. Others have suggested cycling, but that just makes my legs turn to jelly and hurt for a week or two. I’ve also found that too much sugar really sets me off- pain levels and fogginess rocket. A nutritionist once told me she’s seen a lot of correlation between candida and fibromylagia symptoms in people, so in that respect the sugar thing makes sense?

    I’ve found a lot of solace talking to people with similar issues, because at least you can laugh about it that way… and I do believe sometimes that truly is the best medicine.

    At any rate, I hope you find a solution that fits in with your lifestyle. I shall stop rambling now!

  • Ladies, thank you so much for sharing your stories. I’m taking a look at my lifestyle holistically to see what steps I can implement to manage this better, and get as close to pain-free as I can. It would prolly help if I weren’t so Type-A/feisty, but that’s kind of what makes me, me. Working on it!

  • I’d like to add something that does work for me quite a bit (just not when it’s *really* bad): A warm bath of lavender oil and epsom salts. It’s my magic elixir. Soothing, comforting to the muscles — bath nirvana.

    I’m going to start posting more about what I find that works, and welcome you to share. I find that indulging in little pleasures like botanicals lifts my spirits. I’m particularly sensitive to smells, so I find that most perfume/fake scents set off migraines. Yay for essential oils!

  • Nicolette Salerno

    Jennifer – I too am managing my fibro though mostly natural methods and it is making a big difference. One comment Dannette posted made stopme short – Fibro is life’s way of telling us to slow down. When I was diagnosed, also in 2001 I was a working mom with two babies who had just finished a Ph.D. Needless to say my days were busy. In October 2001 I stopped being able to get through the day. I was in pain, tired and irritable all the time. Now the world had tilted on its axis and living in the NY area, the stress was incredibly high but I didn’t think that was causing it. I went to a ton of doctors and finally was diagnosed by an internist who wouldn’t accept negative test results as an indication that it was in my head. I am forever thankful for her. I have moved on to other doctors since and now am happily with a doc that uses medication when necessary but stresses natural supplements, change in diet, moderate exercise and yes, the nightly hot bath with lavender, epsom salts and baking soda. What a difference this makes!!!

    I am beginning a support group in the Northern NJ area soon because like you, I keep my fibro pretty much to myself but sometimes need to talk about it. I am a counselor so it is a way of using my professional training to help myself and others. Would love to hear from others that might be interested.

  • Bravo to you, Nicolette. I gave up on this last round of meds because aside from the insomnia, my body swelled up so badly I couldn’t get my clothes on. I mean, the pain is bad enough, but pain plus Stay-Puf Marshmallow Girl put me over the edge. I realized I needed to start from scratch and start treating the body as a whole instead of the symptoms.

  • Nicolette, I started a support group here in North San Diego over a year ago, and would be happy to share some of my knowledge and experience with you. Send me an email if you are interested: fibrohaven at gmail dot com. You will be amazed at the strength that comes when you build a community of support and friendship.

    And Jennifer, Epsom salt baths are my nirvana as well. Next time I will add the lavender oil!

  • Monica

    As you know, Jennifer, I am celiac and do not have fibromyalgia, but I’m intrigued because I suffer many of the same symptoms. I have battled various sleep disorders forever….used to sleep walk as a child, still sleep talk often now, and several times a year I’ll have night terrors/sleep paralysis. I always thought this was “normal”. I go through phases of flare ups that can last anywhere from three days to the last one was a month…I had about a week of good between this one now and the last one. The pain, of course, most often centered around my stomach — extreme distention and bloating, burning pain, etc. — but also travels throughout my body, exhausting my muscles and joints, my mind and my being. I also get into an ADD-like state, where I can’t focus or function properly. I wonder how much fibro/celiac are related…would be interesting to do research.

    However, through this suffering, I’ve definitely found holistic approaches to be much more beneficial than any medication (I also almost always refuse to take medications unless absolutely necessary). I’ve tried a chiropractor/accupuncture with great results, although too expensive to maintain; various herbal rememdies and almost every vitamin under the sun; massages and peppermint oils; homemade herbal teas; epsom baths work wonders for tired muscles; yoga and exercise make such a difference, though I often feel so crummy I can’t bear to make it to the gym. I never want this to consume or define me, but it’s so hard to push when I feel so crappy. And no matter how I feel, I always start each day with a positive affirmation or quote and a cheery song to lift the spirits and motivate me to fully live to my potential.

    This is such a wonderful community budding, and I’m very interested in discovering what magic works for everyone and how you motivate yourselves to keep pushing.

  • My sweet Moni, I’ve hated watching you suffer these past few years. I had no idea your symptoms were so similar to mine, though (I experience the ADD-like brain fog, too). Worse yet, you’re on your feet all day, so ouch.

    I’m inspired to take all of this sharing to the next level, as I’ve gotten so much feedback both here and from people who are suffering in silence, we need a place with solid information. I’m on it. :)

  • Here is a data point that probably should go into the one-chance-in-a-thousand file. I am mentioning this because there is a resemblance of symptoms, partly, though I was never diagnosed as having fibromyalgia.

    Here are the medical problems I faced, including arthritis, tendonitis, and bursitis:

    Here is the diet solution I developed, one that has ended about 99% of the problem:

  • Monique Peltz

    Jen, thank you for sharing this very personal side of your life with us. I know this has not been easy for you, and I commend you for your courage to speak out! I am amazed and filled with joy to see that so many people have commented here with such great advice and support. :)

    If/when you start visiting CA on a regular basis (fingers crossed!) … I have an idea of how we can fight this – beach, sun, beach yoga, massages (I know a wonderful & cost-effective place), movies and girl time!! Oh and LOTS of HUGS!!


  • Bravo, Jennifer. I’m glad you took the step to talk about it openly like this. It’s clear so many other are dealing with it and I’m seeing a lot of good conversation here on it. I’ve another friend dealing with it as well so this I think is real helpful particularly in “drawing back the curtain.”

  • Michelle

    Thank you for sharing your story and I love your positive attitude. I have had good luck with D-ribose. It does not take the pain away but takes the edge off. It also helps with energy. Calm Forte has helped me with sleep but can make me a little groggy in the morning. Having a bedtime routine helps but it seems to be hard to keep up with. I would also suggest you get your hormones checked. A lot of doctors will check to see if you are in menopause but they should check to see what your estrogen, progesterone and testorone levles are. Mine were all out of wack and it reaked havoc on me. They are almost balanced and the intensity of my Fibro symptoms have easied off. Good luck.

  • Firstly, I need to say that you are all an inspiration. Some of you I know personally, and others I’m now “meeting” for the first time, and you’ve all brought an amazing contribution to this discussion. I cannot thank you enough, because this past week was a rough one.

    And for those of you who are in the trench with me, who grit your teeth and refuse to let the symptoms own you, I commend your courage to keep pushing on until we each find the best way to manage our bodies. This disease and its siblings are crafty, so there’s no one magic solution. That is likely the greatest part of the frustration, because we all need to go through a formulaic approach to discover what works. Mine so far has been to wish it away. You can see how well that’s working. :)

    Michelle, thank you so much for bringing up hormones. Mine are a complete disaster, so I’m hoping that by getting all of me into balance, the symptoms as a whole will subside.

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