The Fibromyalgia Chronicles 3/17/14

Happy St. Patrick’s Day everyone!!

After a week of pretend vacation (I say pretend because I still taught classes 4 days last week) you’d think I’d be back feeling rested and ready to hit the work week right?  Wrong.  Blech.

I’m sure I’ve said this before, and here I am saying it again, but even though I don’t hide the fact that I have fibromyalgia, I also don’t spend much time talking about it, and if I do it’s usually in a casual manner.  That’s not because it’s a casual thing in my life, the opposite is very much true. The reason I downplay it is because I don’t want people to think I’m talking about it or how it makes me feel because I want sympathy or attention.  Which I know is silly, so I’m trying to get over it.  I know I read blogs written by people with other health issues and I don’t think they are writing about their experiences to get attention or sympathy, they are simply telling their story, so why do I automatically assume everyone would think differently of me?  Possibly because there is so much stigma around fibromyalgia since there is always debate out there regarding the actual existence of the condition and the last thing I want people to think is that I’m making all of this up.

But now that I’ve said that (again), I’m going to try to move past that, because I know that sharing my struggles (and successes) can help others.  And with that in mind, the fibromyalgia chronicles shall be born.

I don’t know if this will be a weekly, bi-weekly or monthly thing, but at the very least it’ll be a “thing” that happens on the blog from time to time.

So let’s start shall we?

In short, fibromyalgia sucks.

In case you are new around here, I was diagnosed about 12 years ago, it is suspected that I have had it for a good 10+ years prior to that.  I started off on prescription meds which didn’t really help, ended up seeing a naturopath, got off all my meds (And have remained prescription free for 10 years) managing my condition with supplements, changes to my diet, and exercise.  A huge turning point for me was when I left my 9-5 Mon-Fri office job which made me feel like a walking zombie and became a fitness instructor.  Yes I know, being a fitness instructor is physically more exhausting than a desk job, however, it’s a lot easier for me to convince myself I have to go teach a couple fitness classes, taking only a few hours out of my day, versus having to get up and be gone for 8 straight hours. And yes, exercising can be pretty rough when you have fibromyalgia, but in the end, it’s a lot rougher not to exercise, so I deal with the short term pain during and immediately following exercise in order to have reduced pain overall.

Now that we have that out of the way 😉

I’m a hurtin’ unit.  I’ve been dealing with higher than usual pain levels for the past 2 months, and have been having problems sleeping since prior to Christmas.  Back in January I started taking a supplement I use to take way back when to help with sleep but almost immediately I got a cold and had to stop (you can’t take it when taking cold medication) and only started taking it again a few days ago.  It takes 4 weeks before it becomes effective so I’ve got a few weeks to wait to see if it starts helping me again.

And of course the time changed a week ago which always sends me into a tailspin.  I had hoped with not having morning classes last week that I would be sorted out by then week, not luck there.  On top of the time change our weather has been warm-cold-warm-cold changing every day has be giving me so much muscle and joint pain it’s insane.  I had to drug myself 4 or 5 nights last week in order to even attempt to sleep, because my arms and legs hurt so badly.

And thanks to my friend the FitBit at least I have some degree of proof that I’m not sleeping.  Last night I went to bed at 12.  It wasn’t until after 2am that I was comfortable enough to even attempt to go to sleep.  In the end I managed just over 3 hours sleep in a 10 hour span

No wonder I’m tired!

In fact, I’ve felt so rotten this past month or so I’ve seriously thought about going to the doctor and getting him to put me on a medication for fibromyalgia or a sleeping pill.  But I really don’t want to do that (especially the sleeping pill).  I feel like as soon as you go down the road of using prescription drugs to go to sleep that’s a road that it’s hard to turn back from.  And I still don’t feel like fibromyalgia medications are all that great either.  Especially when you see the ads for them on TV and two of the side effects they sweep in there with nausea and constipation are cancer and death. Call me crazy, but I’ll take my chances with the joint and muscle pain thanks.  It’s important for me to say that if it were a medical necessity for me to be on a drug that had those side effects that would be one thing, but I don’t feel that it is.  My life isn’t in danger by me not taking them, and if you ask many people (including me, with my previous experience) those drugs don’t really seem to be all that helpful anyway.

I found this graph which plots different treatments of fibromyalgia (both traditional and alternative) by their popularity and effectiveness and can’t help but notice that most (but not all) of the prescription meds fall in the popular but less effective section, while more alternative (And some prescription) options fall in the less popular but highly effective area.  Really though, let’s forget about popularity and look at effectiveness

(you can click on the chart above to go to the originating source where you can see what all the unlabelled “dots” represent)

• rest
• hot bathes
• heat packs
• compression clothing (an unlabelled dot)
• sleep
• yoga
• meditation
• massage
• deep breathing
• hydrotherapy
• qi gong

You can go even farther and look at the statistics in another way which shows how those surveyed reported each treatment, which were found to be the most effective, and you can even check side effects.

You’ll notice I added one of the unlabelled dots to my list (compression clothing).  I think without compression socks I’d never be able to run distances over 10K, and find the support they give really helpful during and after a long run.

I also find they work best when pared with a tutu 😉

Anyway, I am really excited that I am on a campaign through Fitfluential with Tommie Copper to review some of their compression clothing.  I am really interested to see if the long sleeved top they sent helps my shoulder/arm pain!

That aside I’ve decided to do something I really hate to do.  I re-opened my myfitnesspal account, I’ve linked it to my fitbit, and I’m using the two to track all of my movement, sleep, food, drinks, supplements, waking temperature, water intake, everything.  If there is some other pattern (besides weather and stress) that I’m missing I’m determined to find it.

If I can only get this sleep thing under control I know I’ll be so much better.  I’m caught in a catch 22 right now.  I can’t sleep because of pain.  When I don’t get enough sleep I get more pain, which makes it harder to sleep. And as much as I hate the idea of prescription sleeping pills, I’m not a big fan of OAC sleeping pills either but sometimes a couple Tylenol PM is needed to take the edge of the pain and help me to stay asleep once I’m there (I don’t find they help me get to sleep).

I’m been writing for what feels like forever and my neck is killing me, so I’m going to end it here.  Hopefully my new record keeping won’t drive me insane and come my next post I’ll have made some headway in the sleeping department!