Tuesday December 22, 2009
You may have noticed I talk a lot about planning this time of year. That's because it really works for me, as I attempt to enjoy the holiday season with fibromyalgia. I start planning early, and revise as needed, to get to Christmas without wiping myself out -- but it doesn't end there. I have to think ahead about Christmas day as well.
I have young kids -- my son is 7 and my daughter's 5. That means Christmas day starts early. After we're done unwrapping gifts at home, we generally get together with my husband's immediate family to have brunch and exchange gifts. Then, we go to his grandma's house for present opening with aunts, uncles and cousins; some activities; dinner; and then usually some kind of game that can last until all the little kids (and some of the adults) are falling asleep on their feet.
It's a fun day, and I don't want to miss any of it. Sometimes, I've had to. A couple of years ago, I stayed home and took a 3-hour nap while my family went off to have fun. Last year, I planned better and fared better as well. Here's what I'm planning for this year:
- Lots of scheduled down time in the days before Christmas (which is possible because of my earlier planning.)
- Strict dietary control (for my gluten intolerance) in the days before, and on Christmas day until after dinner, so the symptoms don't hit during the festivities. I can't expect myself to abstain all day!
- Giving myself permission to slip away to a quiet corner and rest if I need it.
- Lists, lists, lists! I'll have prepared lists for everything we need to take when we leave home, and I'll also make a list of everything my kids take with them.
- Organization. As we all rip open presents that will need to be taken home, in a small room with 20 or so other folks, I'll try to keep everything in one area so we're not searching high and low for things at the end of the evening.
- Keeping key meds & supplements on hand. I'll take a supply of Vicodin, Flexeril, DHEA & theanine with me, so I can get on top of problems fast.
What do you do to help you get through the big day? What mistakes have you made? Share your holiday stories below!
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Monday December 21, 2009
Pain in the neck, hips, knees, hands and feet. Getting cold a lot. Being tired all day. Brain fog. Problems swallowing. These symptoms are just par for the course when you have fibromyalgia. But what does it mean when those symptoms get worse and worse while other fibromyalgia symptoms are well controlled?
My rheumatologist wanted an answer to that question a few weeks ago, because it just didn't make sense. She ordered blood tests for several forms of arthritis and also Hashimoto's thyroiditis. I tested positive for anti-thyroid antibodies, so Hashimoto's was the lucky winner. Thyroid disease tends to be more common in fibromites, so this isn't a big surprise.
In Hashimoto's, the immune system has malfunctioned and decided a particular protein in the thyroid gland is a foreign invader. It then forms antibodies that begin to attack the gland and destroy it. Typically, people don't know this is going on until their thyroid is so damaged that it impacts thyroid-hormone levels, and typical treatment means taking thyroid hormone to normalize levels.
I have fibromyalgia, though, which means I'm never "typical." I've been treated for under-active thyroid for about 8 years now (with Hashimoto's ruled out a couple of times) and my levels have stayed in the normal range. The symptoms that have been bothering me aren't related to underactive thyroid, they're related to the autoimmune activity. My doctor, being a specialist in autoimmune diseases that cause pain, is taking a non-typical approach to my treatment -- she has me on a drug called Plaquenil (hydroxychloroquine), which is normally used to treat lupus and rheumatoid arthritis. She told me she's used Plaquenil in other patients with Hashimoto's with good results.
Plaquenil changes the way the immune system works but doesn't suppress it, like many autoimmune treatments do. I started on it about a week ago and so far I'm tolerating it well (surprise, surprise!) I think I'm feeling a little better, but the drug doesn't take full effect for up to 2 months, so it'll be awhile before I know for sure.
If you're diagnosed with fibromyalgia or chronic fatigue syndrome and you've never had your thyroid hormone tested, you should. The symptoms are so similar that when my fibro symptoms first started up, I had my doctor check my thyroid and was stunned when it was fine.
Another lesson here is to pay attention to your symptoms. The pain I've had for the past few months has been different from my fibro pain. I usually get burning, stabbing pains that move around. The Hashimoto's pain is deep in the joints and really achy. I've also been extra tired during the day, and brain fog symptoms that I haven't had in months were creeping back -- however, without that packed-in-cotton feeling in my head.
All of us should be familiar with the symptoms of thyroid disease. Don't get paranoid about them -- remember that most of these symptoms are normal in us -- but have them tucked away in your mind in case you start having new symptoms or a cluster of symptoms that's getting worse while your others are stable. Here's a great article by Mary Shomon, the About.com Guide to Thyroid Disease, that gives you the basics of several thyroid problems:
Do you have a thyroid problem? What symptoms does it cause? Is it well controlled? What medications have you taken for it? Leave your comments below!
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Saturday December 19, 2009
The U.S. Department of Health and Human Services (HHS) has formed a work group to study several aspects of XMRV, the retrovirus that preliminary research has recently linked to both chronic fatigue syndrome and prostate cancer.
The group will conduct research in 3 phases:
- Standardize & validate lab tests for XMRV
- Determine the prevalence of XMRV in the general population, the blood supply, and in people with chronic fatigue syndrome
- Understanding XMRV transmission methods and possible links to human disease
It's encouraging to see work going on at this level -- now, we just have to hope for quality studies with conclusive results. We haven't always gotten that from our government agencies, but the potential threat to the national blood supply ought to garner more serious scientific attention that chronic fatigue syndrome has had up until now.
Does this work give you hope? Are you afraid that the studies on chronic fatigue syndrome will be somehow tainted by the CDC's take on the condition? Leave your comments below!
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Thursday December 17, 2009
Holiday Blog Classic: To Drink or Not To Drink?
How have you changed your alcohol consumption since you started living with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS)?
Notice I didn't ask whether you'd changed it, just how. That's because most of us discover that we just can't handle alcohol like we used to. During the holidays, it's harder not to enjoy a drink now and then - a glass of wine with Thanksgiving dinner, a champagne toast, or a beer to unwind after shopping. As with so many other things, the key is knowing your body and your limits. Some of us can handle a drink or two OK, while some can't handle any at all.
So far, this aspect of our conditions hasn't gotten a lot of attention from researchers, so we don't know why we tend to develop alcohol intolerance. What we do know about alcohol, in general, is:
- It's a toxin, and we don't deal with toxins well.
- It has an inflammatory effect on your body, and inflammation can increase pain as well as reduce blood flow to tissues.
- It disrupts sleep patterns.
- It's a depressant.
These are all good reasons to stay within your limits. If you do choose to drink, do what you can to mitigate the negative effects:
- Think moderation!
- Stay well hydrated.
- Take an anti-inflammatory.
- Give yourself extra time to sleep and recover.
- Be aware of how it may interact with your meds, and don't combine it with pain killers.
How has your illness impacted your alcohol tolerance? Was this a lesson you learned the hard way? Is it tough for you to say no during holiday celebrations? Leave your comments below!
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