Apparently that’s what I have.

We arrived at the Rheumatologists office this morning – Christmas Eve – and he dismissed Lyme immediately. He explained to us that my primary doctor had requested a Western Blot which was negative for Lyme.

I hadn’t known this, and my mind was so wrapped around getting a diagnosis of Lyme that he sort of took the wind out of my sails.

We talked for a bit, he’d my history for a few days, and my medical records from my primary doc. He did a pressure point test, pressing against my neck and arms and legs, much more painful than I would have expected. I guess that’s what he was looking for…

Because then he told me that, given my history and the test results, he felt I have Fybromyalgia.

I have a friend in NJ who was diagnosed with this back in the late 90’s, so I’m aware not only of the pain and exhaustion, but of the mental stress from folks who don’t believe it’s really an illness.

So now I have a diagnosis. And I’m sadder than I thought I would be. For the past few years I’ve been eating well, exercising regularly, just being all around generally very healthy, but I’ve been so exhausted all the time, too.

The doctor wants to start me on Trazodone to help me sleep. Lack of sleep, because of the pain, has been a bit of a problem. I’m supposed to start with a very small dose, so we’ll see how it does.

I had thought this pain and exhaustion I was feeling was just a reaction to Gerry’s illness, Jan’s death, etc., but I think deep down I knew that there was something wrong with a knitting teacher who wore out after 4 hours of teaching. And I had to admit that knitting more than an hour or so wiped me out, which should NOT be the case.

Sometimes I would feel so useless – I’d be in the middle of cooking something, or cleaning the house, and I’d have to stop and go lay down because I was so tired. I think that’s why I like bike riding so much – I can pedal, then I can coast…

These past 8 weeks have proven to me that there really has been something – something not good – going on with my body. And now it has a name. Fibromyalgia.

The doctor ordered some further blood tests to narrow down some of my other symptoms, so we headed over to St. Jo’s for to get blood drawn and then headed home.

I slept all afternoon.

But it’s still Christmas Eve!
The presents are wrapped and under the tree (right next to the Menorah) But I’m the most excited about a gift we got for Hannah.

Hannah astounded us this summer by keeping a hula hoop going for quite a long time at a friend’s house, and we’ve been looking for some solitary, fun, slightly kooky thing for her to enjoy in the winter. I showed her a hooping site and I think she’s hooked.

But hoops are pricey, so I wondered if there was a cheaper alternative…

I found this site by Jason Strauss where it explains how to make a hoop – hooray!

So Hannah – who is handy – will be getting all the components (tube, joiners, electrical tape) along with the instructions tomorrow morning when she wakes up, all tied up in a big, red bow. I hope she’s as psyched by it as I think she will be!

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33 thoughts on “Fibromyalgia

  1. Leslie

    What a lovely idea to give Hannah a “kit” to make her own hoop. I think she’ll have lots of fun with it. Sorry to hear about the fibromyalgia, but at least now you know and can start treating it. My sister also has it and I know it’s tough. May you find the help you need to keep that beast at bay. Happy holidays. :o)

  2. Tracie

    I’ve had fibromyalgia for as long as I can remember (was diagnosed borderline at the age of 17 with a full diagnosis at 23). It’s not easy, and I would never wish this on anyone. However, after a while, you learn how to adjust your lifestyle to allow you to still do the things you love. If you need to talk to someone about how to manage it and designing, feel free to drop me an email (fibersbytracie at gmail dot com).

  3. Debra

    I have it too and did not know it for a long time. See I have RA and thought my symptoms were all caused by rheumatoid arthritis. When I was diagnosed with fibro, I was given a low dose of antidepressants to help with sleep. The difference was amazing! I had not had a good, deep sleep for 10 years. You might sleep late for several weeks until you finally catch up. But it’s so much better to know.

  4. Trillian42

    Crap. Annie, that just stinks. I’m so sorry. I was hoping that it was just going to be something temporary. 🙁

  5. Leslie

    Well, fibro is still a darn site better than many other things (MM anyone?). While it’s unfortunate and hard to live with we all know people who do.

    In some ways this may be the impetus you’ve needed to take advantage of the good days and produce those knitting downloads. And seeing how the on-line classes are filling up, maybe you will be able to teach using that technique the majority of the time.

    I don’t sound all that sympathetic but I am. There’s hardly anything worse than a disease you cannot control.

    I’ll bet Hannah will love the hoop!

  6. Kathy

    My friend was told “it’s all in your head,” and felt guilty for years because she couldn’t meet her own high standards all the time. The fibro diagnosis was a relief. She could say, “See, I told you I was sick.” At least now there are some targeted medicines that did not exist a few years ago.

    Blessings to you and yours this Christmas and for the new year.

  7. rho

    first off – what a cool site and how fun to make a hoop and decorate it just so … coool

    second I kept reading and thinking – sure sounds like fibro to me – but then I figure maybe I think everything sounds like fibro – – urmmm welcome to the club – wish you didn’t belong to it but …

    btw my personal feelings – the lyme had something to do with it I had 2 different tick borne illnesses before my fibro and I truly feel that stress either kicks it into high gear — neither is scientific just my personal feelings but you will hear lots of folks who have some illness or stress prior to getting fibro (then having it take years to diagnose)

    soft hugs ….

  8. Paula

    Oh you poor dear. You are entitled to “I’m sadder than
    I thought I would be”. However, you are starting a plan of attack and hopefully you will make progress to better health.

    I wish you continued strength and courage.

    Enjoy the holidays as best you can.

  9. Anonymous

    When you were talking about how you were feeling, I was afraid that was where you were headed. I’ve had it for who knows how long but diagnosed about 12 years ago. I hated the diagnosis cuz I knew people didn’t believe it was real. Thank God that’s getting better. All you have to do is have a flare like you’ve recently had and you KNOW it’s real. You’ll learn to pace yourself or what is worth pushing yourself to do and what isn’t. When you shared your history of abuse, which is also something I dealt with and then my son from the age of 4 to 12 was VERY sick and I’m a Mom so I had to make it ok. You were a wife with a husband who NEEDED you and you wanted to be there for him….so we push ourselves to be what we want to be for others and what we think they deserve and need. The stress is what I believe pushes this fibro to full mode. The first lesson is to be as kind to yourself as you would be to another. Enjoy your holidays, your family, and your talent! You got lots of sisters out here 🙂

    Hugs from snowy southern Minnesota!

  10. Penny

    Annie — {{HUGS}} changing my diet really helped me, but i get flare ups and just want to curl up for weeks… this is a pdf of “spoon theory” that i’ve used time and again to explain to others how I feel. and listening to your road to diagnosis reminded me that while my gluten-free diet has helped me feel better… and that while i have tons to do with a house and businesses and all… i should remember to listen to my body. {{HUGS}} you aren’t alone.

    ps i hope hannah loved her hoop. i have lots of friends who love hooping and it’s fun!

  11. Lisa

    Take heart, Annie. It’s not fun, but you can certainly live with the fibro – I have for 17 years! The sleep thing is huge, so take your Trazadone – it will make a world of difference. I’ve been on Amitriptyline for sleep for many years now. I still have occasional bouts of insomnia however, but can function well 98% of the time. I find that severe weather changes cause me to spiral down. Massage can help greatly (though it can also aggravate your pain). Find a good massage therapist who is aware of fibro and it’s pressure points. It’s worth every penny!
    And, don’t overdo the physical activities. Some is good, too much, not so good! You’ll find your balance.

    Hugs to you!

  12. Milly

    I had no idea hoola hoops had become pricey. I remember we had them as a child and they could not have been pricey then, or we would not have had them.

    But how cool to make one’s own!

    I’m sorry to hear about the Fibermyalgia, I hope the medicine and treatment can offer you some relief. My prayers are with you as you face this new challenge.

  13. Tina

    Warm healing restful thoughts being sent your way.

    I too was wondering if this was an autoimmune thing… either Lupus or Fibromyalgia

    I’m sorry for the diagnosis but relieved for you to at least know what’s happening.

    Again… warm healing thoughts headed your way

  14. Marie

    I also have fibro, fortunately they diagnosed it quite quickly. Now on top of that I have C.O.P.D. and am having a harder time dealing with that than the fibro.

  15. Patricia

    Well, if it’s a fake disease, someone should tell all the physicians and specialists who include it as part of a patient’s past medical history when they dictate admission histories at the hospital for which I work. :/
    Some of the medications used for fibromyalgia include low doses of tricyclic antidepressants such as clomipramine and amitriptyline. (This may be where people get the idea that “it’s all in their head”). At such low doses, these things are not being prescribed for depression, but they have wondrous effects on chronic pain in fibromyalgia. Sometimes they are even prescribed for people with cancer pain. Talk to your doctor about this. And rest. And stop feeling guilty!!!

    Patricia – knitter 39 @
    Toronto, Canada

  16. Anni

    So sorry ot hear about your diagnosis. I know people who suffer from fybro so know how debilitating it can be. I suffer from severe chronic neck and back pain myself and take a bucket full of painkillers every day. I also teach knitting and design for British mags and after teaching for a day I’m usually in bed by 7pm and take 2-3 days to recover. With your husband’s illness your diagnosis must be a real blow. I just want to send you all my best wishes and I really, really hope the docs can provide some sort of medication that helps, although I know how difficult this is, and that you can find a way of managing your pain so you can continue you fantastic knitting work.All the best to you and your family.

  17. Auntly H

    I’m sorry the diagnosis didn’t offer relief, but I’m pulling for you getting the care you need (from your doctor, your family and from YOU!). If there’s any way I can help, please let me know.

    I hope to see Hannah’s hoop and a demonstration soon! I’m sure she’ll love it.


  18. Linda

    Hi, Annie-
    So sorry to hear about the fibromyalgia. I’m a therapist, and some of my patients have it,with the attending sleep problems. I’ve also had terrible sleep issues because of menopause and disc problems. I highly recommend the relaxation CDs from this web site:
    Inner Mirror Bilateral CD #2 and Beyond the Inner Mirro Bilateral CD #5 are awesome. To get the most benefit, use a CD player with headphones or download onto an Ipod. You should find them to be super relaxing.
    Another awesome CD is Liquid Mind VIII: Sleep. I first heard it played in yoga class, and drifted right off.
    Linda Hershman
    Licensed Marriage and Family Therapist
    (and obsessive knitter!)

  19. Lili-grommet (not really)-freak

    Check out Dr. Fuhrman’s website and
    “Eat to Live”. It’s a strict plan but I have seen amazing results with my patients.
    Not eating wheat can decrease symptoms immediately. No western doctor would ever advise this unfortunately..

    Sending good wishes for 2010!!
    Susan, Rick, Lil and Ruby

  20. Paula

    It is a relief to know there is a reason for the horrible symptoms that have beset you for weeks. I know that stress and worry and trauma are all factors – not psychological at all but those things cause physical changes in our bodies and our bodies react to those changes with fibro … indeed sleep will be a huge healing factor, as will drawing close to your family and [IMHO] traveling much less. Hugs – good wishes – encouragement of all sorts being sent your way.

  21. Sharon

    I wish you peace and rest and joy. And feel like it is just words, but hope you know how strong you are, even when you are tired and angry at the world. Here’s to a new year, 2010. May your joy be twice as strong as your trials…what a year it will be!

  22. lookinout

    When you described being referred to a rheumatologist, I wondered if it was FM. I have it too, but I think it is only slight. I rarely think about it, except if I have an extra ache somewhere. I try to exercise quite a lot, weights and cardio, as I definitely feel better if I keep moving. Exercise doesn’t make me hurt more; it almost seems unrelated to the FM.

  23. Sophie

    i just found your site recently, and read through google reader. i too read some of your earlier posts and immediately thought “fibro”.

    i wish you all the best as you learn to navigate your new world — the hardest thing for me has been the constant readjustment of my expectations and boundaries. listen to your body — sleep when you can/need to, rest and steward your energy. my own fibro prevents me from exercising, as it hurts and i prefer to use the energy i have in other ways. but yoga has been recommended, as has physiotherapy. i’m taking amitryptiline for sleep issues, and gabapentin for nerve pain, which is fairly helpful for the day-to-day pain but doesn’t do much when i am having a severe flare-up.

  24. Erin

    Annie, I’m very sorry to hear about the fibromyalgia diagnosis. At least now you know what’s been causing you to feel so badly and can hopefully start down the road to managing it. Best wishes.

  25. Kathy

    Annie – I’m so glad the dr was able to figure out a diagnosis for you. At least you know what you are dealing with and can take steps to improve how you are feeling. Sending good thoughts your way.


  26. Claudia

    Dear Annie:

    I’m so sorry for the diagnosis…
    At least you know the truth now,
    and can figure out ways to deal with it, like sleeping. Sleep is truly important for everyone’s health… Even healthier people who lose too much real sleep get swollen feet, weight gain, and depression. Sleep is crucial to everyone’s health…

    I hope that everything works out for you…

    If you don’t want to be dependent on prescription meds… Once you’ve slept soundly for a month or two, try drinking Celestial Seasonings’ Tension Tamer/SleepyTime,or supplements like PassionFlower or valerian root capsules… Or, if you just need to relax, try drinking Red Tea (like Tazo’s African Red Bush, or Celestial Seasonings Madagascar Vanilla Red Tea).

    All the best!


  27. Claudia

    p.s. a neat way to improve circulation, reduce swelling in your feet, and help you sleep is to place your feet at a level higher
    than your heart by: lying down with pillows underneath your knees and calves… OR … laying flat on your back with your legs going straight up the wall (in an L shape).

  28. Anonymous

    Hi, I read all the comments and agree that changing your diet may help a lot. I have rheumatoid arthritis and eating lots of vegetables, fruits, whole grains, beans, fish, etc. can make a huge difference. Avoid tomatoes, potatoes, peppers and eggplant, which are the nightshade vegetables and can contribute to your achiness. Also find a doctor who will advice you on using fish oil and other supplements that will greatly benefit you.
    I am a knitter and nothing will stop me. I also work. I feel so much better than I did 5 years ago. My rheumatologist did not believe in anything but in these new meds, that make you feel better, but can give you cancer in the process. Not an OK trade for me.
    Blessings to you and may you find what works for you. And never stop knitting.

  29. katkoe

    hugs, it does get better.

    be sure to have your vitamin D & b12 level checked too and most importantly be kind to yourself.

  30. twinsetjan

    Annie, so sorry to hear of the diagnosis…it is pretty darned crappy. I was diagnosed in 1992 and can attest to that. But I can also attest to the facts that it can be managed and it doesn’t have to control your life. Sound sleep is one of the best contributors to quality of life, so your doc’s approach of tackling that with medication is a good one — providing he’s also working with you on non-medical means as well. Trust me when I say you don’t want to be beholden to medications. And no matter how good they are, they can dampen your alertness and ability to think clearly. I recommend using them to get things in check and then try to work out your own pattern of life that allows you to function well. When I do the things that I know help, I do pretty darned well. Those would be:

    Gentle exercise (you can build up to more intense exercise VERY gradually, but you do need to start very slowly)

    Myofascial release massage (hurts like hell while it’s being done, but TREMENDOUS relief)

    Supplements (malic acid, magnesium, trace minerals, multi-vitamin)

    Healthy diet (lower carb seems to help me, but I’m not certain it’s not just better all round eating when I’m eating lower carb!)

    Getting out and moving — walking the dogs is my preference, I know you like biking.

    Hot baths — they just feel good.

    Chiropracty — movement of the musculo-skeletal system allows more freedom of movement in general…and movement of the muscles actually helps override some pain signals.

    Discipline — To say no to too many events. It really is okay to say no.

    A note on Lyrica — it worked GREAT for my pain levels…I was physically feeling wonderful and I’d be taking it today if it were not for the fact that I was one of the minority for whom Lyrica also acts as a depressant. You might want to talk to your doctor about giving it a trial run.

    Good luck and stay positive — you can be it’s victim or it’s master. I’m pretty darned confident that you’re going to fall into the latter camp!!

  31. Bluebird49

    The Traszadone has helped my sleep for about 4 months now–I have had Fibro/CFS for 12 year (diagnosed, more years than that, I know!).

    I’ve found that putting pillows underneath both elbows when I knit helps the pain in my neck and shoulders. I don’t want to give up my knitting–I KNOW you don’t!!

    Try to be kind to yourself, any amount of stress makes it worse! (Good advice–now if I could only take my own advice!)

  32. SanghaChick

    Wow. Sorry to hear about your diagnosis! But you can do this. You’re gonna be ok, and you’re gonna kick it’s butt.

  33. Gail

    I know this is a late comment, but I take 50mg of Trazadone a night (100 on super stressful nights), and it works WONDERS. No side effects that I can tell, and it conks me right out. Plus, its cheap and non-addictive. It really helps with my anxiety levels if I get enough sleep.

    My stepson takes 150mg because he has ADHD, and he’s done great on it.

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