CFS and Fibro - Huh?

I've had a puzzling, interesting, disappointing, and then hopeful few weeks.  I was diagnosed with fibromyalgia a week ago.

I suspected it, but didn't want to hear it.  For seven months, I've been dealing with joint pain, muscle aches, serious fatigue and no energy.  I kept pushing through it, which, I learned later, made things worse.  Since the diagnosis, I've been reading this book and learning things that give me hope.

1.  Fibro is an extension of Chronic Fatigue Syndrome (CFS.)  Being deprived of good, restorative sleep (REM sleep) for a long period of time sets the groundwork for fibromyalgia.  (I've not slept well since I had children, thirty years ago!)

2.  One aggravating factor in fibro is inflammation.  Sugar is an inflammatory agent.  AUGH!!  I have to start viewing sugar as a toxin to me.  No more cupcakes.

3.  Other factors in fibro are hormonal imbalances.  Thyroid and adrenal glands, in particular.  The standard blood tests for thyroid are not effective in determining thyroid malfunction.

4.  Stress is a factor.  (Stress is a factor in everything nowadays.)  Not sure I can do much about this one.

5.  Exercise is important, even if painful.  UGH.  I have slacked off on the gym these past few months because, who wants to use muscles that hurt?  It also wears me out, which feeds into the fatigue piece.

6.  The root problem is the hypothalamus, which Dr. Teitelbaum writes, "has blown a fuse."  It's exhausted and depleted and is no longer managing the body's systems correctly.  By the time the aches and pains manifest, the system has been offline for awhile. 

7.  The good news is that restorative REM sleep can help restore the hypothalamus and get it back to running properly.

I'm only a week into this, but I'm optimistic that there is recovery for fibromyalgia, even though sufferers are always susceptible to flare-ups.  I'm working on finding natural sleep aids; I'm cutting my sugar intake; I'm trying natural supplements for pain.  At a July doctor's appointment, I'm going to request more extensive thyroid testing.

I've not felt well for the past seven months, and there is some relief in finally getting an answer.  But, it's discouraging too, knowing I have to make many changes in my lifestyle.  I'm too old to start over!

I know God is bigger than fibromyalgia, and I know He's beside me with this challenge, but I have to say, I look forward to the day when this body no longer dictates how I must live.  I'm glad this "EARTH SUIT" is temporary.

Do you know anyone with fibro?  This book would be a great gift to them.


Cathy said...

So sorry about your diagnosis, but so glad you at least know, so you can start doing something about it. Praying all will go well.

abby@truebeloved said...

My Mom has Fibro and I don't think she's ever read this book. Thanks for telling us about it. I'm sorry you've been diagnosed with it! I know how awful Fibro can be, but don't lose hope because you're right, God is bigger than it. May He remove that pain from you altogether! Blessings,


Susan Flett Swiderski said...

Yes, I know several people who've been diagnosed with fibro, and I don't think any of them have read this book. I'll be sure to tell them about it.

So sorry about your diagnosis, but now that you know what the problem is for sure, you can do something about alleviating it. (NOT knowing is lots worse.)

Take care.

I'm mostly known as 'MA' said...

I am familiar with it as I do know someone that has had it quite a while. I'll be praying for healing for you. I believe our Lord is the Great Physician.

Barbara In Caneyhead said...

Praying God bless you and keep you through this. Pete has suspected he might have fibro. Maybe come June when his medicare kicks in he can start to find real answers.
Life & Faith in Caneyhead

Multi-tasking Mama said...

So sorry to read that you have fibro. My BFF has had it for many, many years since her early 40's. Unfortunately it wasn't diagnosed straight away (they thought it was repetitive strain injury at first) and it wasn't until she was in an extremely bad way that she diagnosed. I am so glad to hear you are being so positive about kicking it. Best of luck to you. xx

Rita said...

Good Luck! I have had fibro since around 2000 or maybe earlier. I thought I could mind over matter it and kept pushing myself (was in college, for goodness sake, what else could I do) which only made it gradually get worse and worse. Eventually had to quit college and ended up housebound and on disability. I sleep a lot more soundly since I moved here in 2005 and have a lot less stress, but even though better sleep has improved the chronic fatigue quite a bit it has not improved the pain level. But I guess mine is a pretty extreme case and I have other health issues besides.

I am glad you were diagnosed early and I pray you find something that works for you. This is a newer book. I've read dozens--and articles--and online info. There are many theories. Some even suggest it could be caused by a virus and/or related to chronic inflammation and/or is an autoimmune disease and/or triggered by lack of sleep over a long period of time and/or a physical trauma to the body. There are a lot of theories out there.

My very, very best to you! Love and hugs!!

Andrea said...

A friend was telling us yesterday about some of the benefits she has noticed so far from transcendental meditation. Looking at what you have learned, I wonder if such a thing would help provide any relief....

Deb said...

Thanks for this post. I should probably look further into this since I have had a LOT of stress over the past year (mostly compliments of my oldest son ;-/ )
and the pain in my knee has gotten so much worse and the muscle pain has spread. I also teach A hour at school so get up super early usually get in bed too late. I will do some further reading and talk to my doc. I have been feeling for sometime that I need to give up sugar but have been really weak, but I, like you, probably need to view that as toxic to me. Thanks again!

Jo-Anne Meadows said...

No I don't know anyone with fibro but at least you now know what the problem is and hopefully you can do something about it and take steps to help you feel better it sounds like a terrible condition to have

Lisa @ Two Bears Farm said...

At least you have a course of action - I hope it offers some comfort. The client I work with for my job has fibromyalgia. She does many of the things you have mentioned (no sugar, the gym when she's up to it). It does seem to help.

Creations By Cindy said...

Oh I will pray for you. A dear soul sister of mine has suffered for years with this (12 years) matter of fact. She finally got on the right medication to help her plus a lifestyle change which wasn't easy for her. Now she will tell you that she knows when she will have a spell with it (as she calls it) and most of the time it is because she has went back to burning the midnight oil, lack of rest, not eating right and etc. I will be praying for you and yes, OUR GOD IS BIGGER THAN ANY PROBLEM WE HAVE! Hugs and blessings, Cindy

Karen Lange said...

Glad to hear you are so upbeat about the diagnosis. Thankful too, that there are avenues to build strength and find relief. Will pray for you on this journey.

Chatty Crone said...

Well I do hope you get it under control. I hope you feel better.


Love, sandie

Emmy said...

So sorry. Glad you do have an answer now though as at least you do have concrete things you can do to help it. I would have a hard time with the sugar.