What does fibromyalgia feel like?

Fibromyalgia is the strangest condition. Sometimes you feel achy, like you’re fighting a viral infection. Sometimes the pain is a burning sensation, similar to what you might feel in your muscles during strenuous exercise. Sometimes the pain is widespread, and other times it is much more localized to discrete areas of the body.

The pain is usually accompanied by a deep, all-encompassing fatigue, often accompanied by headache. I’ve read many articles that suggest fibromyalgia patients avoid caffeine. That’s probably a healthy suggestion, but often I need the caffeine just to stay awake at the wheel. It also seems to help with the headaches. Caffeine aggravates interstitial cystitis, however, so I do try to balance the need to stay awake during the day with the desire to avoid bladder irritation and the constant urgency and frequency that comes with it. I’ve pulled way too many all-nighters due to irritable bladder.

Fibromyalgia symptoms are different for everyone. If you’re suffering today, I hope you get the rest and pain relief that your body needs. If your loved one suffers, I hope this gives you a bit more insight into the condition.

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Wiser bargain shopping

I like clothes. And I am really good at finding great deals—$2 pants, $5 dresses—you name it. It’s fun to find bargains, and every time I wear my clothes, I get to relive the thrill of the hunt!

My chronic illnesses limit what I can wear. For instance, my interstitial cystitis means that anything with a stiff waistband, metal fasteners, or anything that puts pressure on the bladder causes a great deal of pain. When my IC flares up, dresses are the most comfortable thing to wear. With fibromyalgia, comfortable clothes are also a necessity. Balancing chronic health conditions with an office dress code can be a challenge.

I’ve learned that “try before you buy” is a necessity.

Since I often buy “final sale” items, returns aren’t always an option. Trying things on means I can make sure they don’t hurt, and that they actually fit! Different styles of clothing, even when made by the same company and claiming to be the same size, can fit very differently. Trying clothes on is tiring, and I really hate it. But in the end, it saves me money and regrets.

How do you find clothes that fit your health needs and your lifestyle? Feel free to leave a comment below! I would love to hear your ideas.

Fibromyalgia Weight Gain? You’re Not Alone.

When I was first diagnosed with fibromyalgia, I was in the best shape of my life. I had lost over twenty pounds, and had managed to keep it off for several years. I had healthy eating habits, low blood pressure, and even my chronically high cholesterol numbers had dropped into the good range.

Then fibromyalgia came along, with its pain and fatigue. Suddenly it hurt too much to exercise as much as I was accustomed to. The constant fatigue made sugar and caffeine more of a temptation since I needed the energy just to function. The increase in joint pain and stiffness while seated inspired me to try a standing desk at work. After only two weeks of using a standing desk, I developed plantar fasciitis. Talk about frustration!

With plantar fasciitis came even more restrictions on my activity. Load-bearing activities aggravated the inflamed fascia. I began doing non-load-bearing exercises, including stretches, to help restore my left foot to functional. Even with all of the extra care, my foot took a full year to return to “normal.”

Not surprisingly, the change in exercise behavior and diet resulted in quite a bit of weight gain. The medications I am currently taking list weight gain as a side effect, but it’s hard to tell how much they contributed to the issue.

Gaining weight after working so hard to lose it and keep it off was both disheartening and expensive! Suddenly nothing fit except for my shoes, and most of my shoes hurt my feet due to the plantar fasciitis. Fortunately, I love bargain hunting, and my affinity for discount stores and their clearance racks allowed me to slowly replace my clothing with things that actually fit.

Last week I did something that was simultaneously freeing and sad. I boxed up my too small clothes and put them in the basement, so that I wouldn’t constantly be trying things on and having to take them off in disgust. Now my closet is a lot cleaner, and the probability of grabbing something that fits is much higher. I didn’t purge all the smaller sizes, because now that my foot is healed, I may lose some of that weight again. But the fibro pain and fatigue aren’t going anywhere, so in boxing the clothes, I was giving myself permission to stay my current size. I am not “giving up on myself”; however, I need to acknowledge that being as healthy as I can might look different post-fibromyalgia. Especially since the pain and fatigue keep getting worse.

I suppose I also need to acknowledge that my undying affection for chocolate-covered almonds may be partly to blame for the extra pounds…

Furry Friends and Chronic Pain

Last August, our family got a kitten, a big, orange striped boy named Brewster.  In a few weeks he will be one year old.  He lives up to all the cat stereotypes; chases reflections, climbs everything, and loves to play.  Every morning, as soon as he hears sound coming from our bedroom, he meows outside the door and scratches until we open it.  Then he rubs all over my legs until I feed him.

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My youngest daughter had always wanted a pet, and both my girls love Brewster.  I am really glad we got him, not just because cats make excellent heating pads, but because no matter how bad I feel, he wants me to get up in the morning, and won’t rest until I do.  When I get up in the middle of the night to use the bathroom (thanks, IC) or get a drink, Brewster runs over, purrs, and rubs all over my legs.  He’s always glad to see you!

When you feel pretty awful all the time, it’s nice to have a friend who is there for you, even at 3 a.m.  So I am very thankful for my furry friend.  If you’ve been thinking about adopting a cat, I highly recommend it!

 

Don’t borrow the future’s fears.

I am 45 years old, and according to the medical community, I have lived a healthy lifestyle, free of drugs, tobacco, alcohol, and promiscuity.  My weight is supposedly in the “normal” range; I even eat paleo!  I exercise at least 5 days a week, but instead of training for a 5K,  I am in bed, wrapped up in blankets, riddled with fibromyalgia pain and struggling with bladder issues related to interstitial cystitis.  My right cheek is numb up to my ear, and I have burning pain in various muscles.  No one knows what is causing this, and certainly no one knows how to fix it.  So much for “preventative medicine”.  Plenty of people with all kinds of unhealthy habits can run circles around me, even if they are significantly older than I am.

Having multiple medical issues at a relatively young age is scary.  How do I know that what doctors currently believe is “harmless” pain is not really the beginnings of something serious?  Would my body really waste so much energy processing warning signals if nothing was really wrong?  I doubt it.  There must be an explanation for these symptoms, but since I don’t know what it is, there’s really no point worrying.  Will I be able to teach tomorrow?  Will I be able to grocery shop this afternoon?  When will the pain in my hands force me to stop playing piano, the way it has almost stopped me from playing guitar?  I don’t know the answer to any of these questions, but letting them trigger anxiety is certainly counterproductive.

A wise man once said, “Don’t worry about tomorrow, for tomorrow will worry about itself.  Each day has enough trouble of its own.”  This man was Jesus.  Since He authored life, I should take His wise advice.  Worrying never fixes anything.  We can only do what we can do, in the present moment.

I’m sure tomorrow holds plenty of trouble.  But I’m letting tomorrow keep it.

Paleo Diet May be Worth a Shot

Here’s a new fibro “tip of the day” for folks to try.  For the past couple of months, I have followed the “paleo diet”, which means cutting out dairy, legumes, and grains, along with some other foods.  It meant a significant change in what I ate, but I did see an improvement in my fibromyalgia symptoms, and I was even able to eat fruit that would normally trigger my interstitial cystitis.

I have not found a good biochemical explanation for why this diet would affect fibromyalgia or interstitial cystitis, and I am certainly not “cured”, but at least the pain is more manageable.  The more changeable weather we’ve had recently seems to be reversing the trend of “low pain” days, however.  Definitely not looking forward to winter!

Buy the Wintergreen LifeSavers

Fibro tip of the day:

There may come a time when you are in so much pain that you will try any topical ointment.  And when you try one that has methyl salicylate in it, you may not feel any better but you will smell like wintergreen LifeSavers.  And then you will wonder if there are any wintergreen LifeSavers left in the candy drawer, and go digging, only to be disappointed.

Put wintergreen LifeSavers on the grocery list.  Then when a bad pain day strikes, and you really want a LifeSaver to complement the lovely aroma of ointment, you’ll be ready!  Plus, if you look in the mirror in a dark room, and you bite the LifeSaver, you can see blue sparks!