By wendy, on January 21st, 2012
I’ve been seeing some questions online about what a “flare” is, and how you know when you’re having one. The simplest definition is “a time when your fibromyalgia symptoms get worse, then improve again.” (With the caveat that if they STAY worse permanently it’s not a flare, its a worsening of the illness.)
A “fibromyalgia flare” is actually more accurately described as a “symptom flare,” since it can involve ANY symptom or combination of symptoms related to the illness or to comorbid conditions. Most patients (and doctors) only look at pain and fatigue levels; but increased severity of IBS/other digestive issues, fibrofog, anxiety, depression, itching, skin sensitivity, or any other symptom related to your fibromyalgia is ALSO a flare.
Each patient tends to have their own specific definition, so if you ask 20 people, you’ll actually get 20 different definitions; but they’ll all have some things in common: Continue reading What is a Fibromyalgia “Flare”? »
By wendy, on January 20th, 2012
 Image by blmiers2 via Flickr When you have a chronic illness like fibromyalgia, every season has its challenges, but I think winter is the hardest to cope with. Not only is it cold, which tenses up muscles and increases pain levels; but there are so many other issues as well. Basically, winter with fibro sucks, and here are just a few of the reasons (if you have more, leave me a comment and I’ll add them):
- It’s cold, and frequently damp
- The weather changes all the time, which means barometric pressure changes and more aches and pains
- Shorter days and lower vitamin D levels that increase depression
- Being cooped up indoors without being able to open windows and doors increases exposure to indoor molds, toxins, and contagious illnesses; increasing allergic responses and physical stressors
- The weather makes exercising more difficult. Between higher pain levels and less ability to exercise outdoors or get to the gym we can slip into a vicious cycle of exercising less, which increases pain levels even more, and makes it even more difficult to exercise.
So how do we deal with all this “stuff” and keep our health from slipping? There are a ton of ways to minimize the winter “blahs,” but the most important one is: don’t give up! You may need to change some routines, but winter doesn’t have to be a miserable, depressing experience. I try to look at it as a challenge to my ingenuity, looking for new ways to get where I need to be and accomplish what I need (and want) to do.
Winter Survival Strategies:
Dealing with the cold (and damp): Layer, layer, layer! Several light layers of clothing, topped with a blanket; will keep you more comfortable than wearing one heavy item. Layering your clothes traps air between the layers and increases the amount of insulation they provide. If one pair of socks isn’t keeping your feet warm, add another light pair instead of taking off the ones you’re wearing and changing to a heavier pair.
If you’ve read much of this blog, you know how much I love hot packs . . . They’re even more wonderful in cold weather. Even if you don’t have a specific ache that needs heat (not likely, but it happens,) putting a hot pack in the chair or bed with you will help you stay warmer all over.
Flannel sheets are warmer than smooth cotton blends, and an electric blanket or mattress pad can make a huge difference in your ability to stay warm at night. They also provide gentle, all-over heat for the more general aches that tend to come with winter weather.
Shorter days and depression: Using full spectrum light bulbs will help, and so will adding a vitamin D supplement (low vitamin D increases depression, and with shorter, gloomier days our body doesn’t make enough.) Adding B vitamins can also help, either through supplements or more veggies.
Isolation is something else that can increase depression levels, and winter weather frequently keeps us at home. Finding online support through Twitter, Facebook, or forums can make a huge difference.
Being cooped up indoors: Adding a few potted plants will increase indoor air quality (if you have pets, make sure they’re safe if they get nibbled or keep them where your pets can’t munch them.) English ivy is an excellent plant for reducing indoor toxins, and it’s pretty easy to take care of too. There are many more options as well, and Treehugger has an excellent article on the subject, based on a NASA study on which plant is best for various pollutants.
To reduce the chances that I’ll catch something, I make sure I wash my hands regularly (with plain soap and water, antibacterials don’t help against viruses and increase the number of resistant bacteria,) get plenty of vitamin C and eat more onions and garlic. This last one is a bit controversial, because I also avoid vaccines like the plague. (The ONLY times in the last 15 years or so that my husband and I have actually had the flu were the two years we got a flu shot, and I’ve only gotten a cold once.)
Exercise: This is the toughest one for me because most of my exercise comes from walking to work, and in the winter that’s harder to do. If it’s too cold, or it’s raining, my husband and roommates make sure I have a ride, so I have to get a bit more creative. I’ll frequently do a couple of laps of the store I work at, or, on bad days, just get up and walk across the room a couple of times every hour or so. There are also videos on YouTube for fibromyalgia exercises that can be done while sitting down, which is especially helpful during flares because they’re very gentle and put less stress on your body.
By wendy, on December 31st, 2011
 Image via Wikipedia By Wendy Burnett
Okay, you don’t know what “painsomnia” is, or if you have it, but you definitely have trouble sleeping on a regular basis, right? After all, that’s a common issue for anyone with chronic illnesses. Painsomnia is a term I came across on Twitter; I don’t know who came up with it, but it is absolutely perfect for what it’s intended to describe. (If you invented it, or know who did, please leave me a note in the comments so I can give credit where credit is due.)
painsomnia – combined word made up of the words pain and insomnia, used to describe an inability to sleep because of high pain levels.
There are tons of posts and articles out there with tips for going to sleep more easily and getting better quality sleep. There are also a lot of articles about ways to reduce your pain levels. There are, however, only a few posts or articles available that suggest ways to do both at the same time. (Most of them are found on blogs that focus on living with chronic illness in general, or a specific illness.)
Doctors aren’t much help with this one, since they usually want to throw another pill at the problem. More pills can be problematic for anyone with a chronic pain disorder like fibromyalgia, since sleeping pills and pain medications may not work well together. Even if you have medications for both pain and sleep, sometimes even the maximum safe dose isn’t enough and you need extra help.
There are lots of safe options you can try that won’t interact with the medication you take, Continue reading To Sleep, Perchance to Dream – But What if You Have Painsomnia? »
By wendy, on December 1st, 2011
 Image via Wikipedia By Wendy Burnett
What do you want for the holidays? Do you want things to make your life easier, a cure for your particular illnesses, jewelry, books, electronics? No matter how much we share, our own particular wants and needs are very individual; and whatever you want is okay. Never let anyone tell you that what you want is wrong, or that you’re being selfish because you want something for yourself for a change.
I want so many things that it’s hard to know where to start, but here are a few of them, in no particular order:
- A job for hubby, and everyone else who is willing and able to work, that actually pays enough to live on. (Preferably one he actually likes, but one he can tolerate would work.)
- Family and friends that are actually supportive and understanding for all the chronic illness peeps that don’t have anyone in their life that “gets it.”
- Access to adequate pain relief for everyone who needs it.
- A doctor who will actually listen and believe what you say for everyone who fights with an invisible illness. (And who actually knows how to HELP, too.)
- Homes for the homeless; food for the hungry; hope for the hopeless; solace for the grief-stricken; and joy for everyone living a joyless, bleak existence.
- More love and less violence; more generosity and less greed; and most especially, more ethical behavior from those in power instead of the current grasping, self-serving dishonesty that is rampant in our government and corporations
Of course, there are a few things I’d like for myself, too . . .
- A subscription to a good-quality auto-responder so I could set up a newsletter for the site.
- The ability to get all the herbs, supplements and essential oils I’d like to experiment with to see if they’re actually helpful.
- Certification classes in herbalism and aromatherapy.
- Time. Uninterrupted time to write, to study and research, and to do the things I need to do to take care of myself so that I’m ABLE to do all the things I’d like to do.
- Strength. The strength to keep going, even when things are bad, when it feels like nothing will ever go right again or that the pain will never end.
Posts like this always remind me of how much I do have, of all the wonderful people in my life. They remind me that no matter how bad it feels sometimes, I have so much more than I ever did when I didn’t have to worry about being able to buy groceries or pay the bills; when all I had was money and things . . .
This post was written for the December 12, 2011 edition of the ChronicBabe Blog carnival.
By wendy, on November 30th, 2011
By Wendy Burnett
Do you do everything you can to ease your fibro symptoms, and wonder why you don’t feel better? If you’re being exposed to the following substances, you may be undoing all the good you’re doing with your diet, medications and alternative treatments.
- Aluminum Hydroxide – An adjuvant added to vaccines to increase antibody production, aluminum hydroxide is a neurotoxin that has been connected to Gulf War Syndrome; as well as cognitive dysfunctions and motor neuron disease, which is virtually indistinguishable from classical amyotrophic lateral sclerosis (ALS) except for the age of onset. It has also been linked to the destruction of, and damage to, motor neurons; which are responsible for telling your muscles to contract or relax, thus controlling movement; as well as for receiving sensations from the body.
- Aspartame – Aspartame (Nutra-Sweet) has been linked to headaches, including migraine; higher pain levels, cancer, brain tumors, tinnitus (ringing or buzzing sound in the ears,) noise sensitivity; decreased vision and/or other eye problems such as: blurring, bright flashes, squiggly lines, tunnel vision; decreased night vision; pain in one or both eyes; dry eyes; dizziness and unsteadiness; confusion and memory loss; severe drowsiness and sleepiness; Continue reading 8 Things You Didn’t Know Would Make Fibromyalgia Worse »
By wendy, on November 26th, 2011
 Image by librarygrrrl via Flickr By Wendy Burnett
Day 26 – The prompt for today’s Health Activist Writer’s Month Challenge Prompts (#HAWMC) is: “I still remember… Free write a post that starts with the line “I still remember…””
I decided that since this one is so general, I’d narrow things down a bit to keep it relevant to chronic illness. Since I mostly focus on my fibromyalgia, or chronic illness and chronic pain in general, I thought I’d put the focus on one of my other issues this time, so this post is going to focus on my migraines.
I still remember . . . the worst migraine I ever had. It’s something I’ll probably never forget. (My hubby probably won’t either, it scared the shit out of him.) I woke up at my usual time and called in to work to remind my boss that I had a doctor’s appointment that day. My head was aching a bit and I felt kind of sick, but I went through my usual routine of showering and washing my hair anyway, feeling worse and worse as I did.
By the time I got done, I felt bad enough to lay down until time to dress, so I curled up with my sleep mask, until suddenly I was violently nauseous. I barely made it to the bathroom before I lost it (thank goodness there was a throw rug I could just roll up to toss into the washer later,) and I was in there so long, making such awful noises, that hubby actually came to check on me.
It got worse from there, because I’m a stubborn bitch, and was determined I wasn’t going to miss an appointment with the rheumatologist that was always booked solid for 6 months ahead.
Hubby had to help me dress, with several interruptions to run worship the porcelain goddess, and eventually we emptied a small trashcan that I could just carry around with me. By this time, my head felt like it was going to explode, even with all the shades drawn and the lights off I could barely stand to open my eyes, and every time hubby whispered a question I nearly screamed from the pain.
Needless to say, the 45 minute drive to the doctor’s office, hugging my trashcan all the way, was a nightmare for both of us. Every bump in the road felt like someone was jabbing a railroad spike through my head, every time I had to open my eyes the light felt like razor blades slicing through my eyeballs, and every sound was like sharp knives inserted into my brain. Poor hubby wasn’t that much better off, either. He has a weak stomach, so every time I heaved, he gagged and choked.
I must admit though, it’s the fastest I’ve ever been taken to the back . . . the second time they had to rush to unlock the door so I could get to the bathroom before I shared my technicolor yawns with everyone in the waiting room, they stuck me in an exam room. I guess they wanted to get me seen and out of there before they had to clean up after me, because the nurse went ahead and started the intake stuff, mostly while I was hanging over their trashcan.
By that point, I couldn’t stop heaving, and within 5 minutes the nurse had rushed out the door and was back with a needle full of something. She kept waiting for the heaves to stop long enough for her to give me the shot, but it just wasn’t happening, so finally she had to poke me while I had my head stuck in the trashcan. (I have NEVER been so glad to be jabbed with a needle in all my life. LOL)
I don’t know what was in that syringe, but it was some damn good stuff. It was only about a minute before the vomiting stopped, and by the time I rinsed my mouth out I was so groggy that hubby had to pick me up and put me on the exam table (I don’t actually remember that part, the next thing I remember is waking up about 2 hours later.) Hubby said later that the nurse had been in there checking on me about every 15 minutes; and as soon as they found out I was awake the doctor came in, we finished the appointment, and I was GONE. (With scripts for Phenergan, Maxalt, and some narcotic pain-reliever in addition to my usual double handful of stuff.)
I’ve had other bad migraines, including ones that lasted for days of wishing someone would chop my head off for me, and others where I threw up several times. I’ve had lots of migraines where I wished I could just die and get it over with, but that’s the only one that ever made me wonder if it was actually possible to die of a migraine.
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
By wendy, on November 26th, 2011
By Wendy Burnett
Day 24: Today’s Health Activist Writer’s Month Challenge Prompt (#HAWMC) is: “My Mascot! Give your condition, community, or self a mascot. Who is it? What do they represent? What is their battle cry?”
 FibroFighter's secret weapons When I first saw this prompt, it freaked me out a little . . . Me, create a mascot? Oh no, I couldn’t do that. After all, I’m not that creative, am I? Well, maybe I am, because the idea kept sort of sloshing about in the mush that is my brain; bumping into all these other ideas about fibro, and coping, and pain. Some of the ideas stuck together, a picture started forming in my head, and suddenly there she was. FibroFighter, the fibromyalgia mascot, waving a hot pad and shouting “I can do it!”
FibroFighter is just as much a superhero as a mascot though. She has to be to do even part of the things that a “normal” (read “not sick”) person does every day while coping with constant pain, exhaustion so deep it feels like it pins her to the bed, and fibrofog that turns her brain to mush.
FibroFighter’s “secret weapons:” Continue reading Introducing . . . FibroFighter! the Fibromyalgia Mascot/Superhero »
By wendy, on November 26th, 2011
By Wendy Burnett
Day 25 – The Health Activist Writer’s Month Challenge Prompt (#HAWMC) for today is: “Never Have I Ever. You stick to your guns – now tell us about what. What is something you’ve never done but want to. What’s something you’ve never done and won’t budge on?”
Part one is easy . . . I’ve never been to Hawaii, and I WANT to go (permanently.) Actually, I guess any tropical island would do, I just happen to know that Hawaii has the internet connectivity I need.
 Randy Son of Robert via Flickr I’ve always loved the ocean and beaches, and being on an island would totally surround me with both. Water in all its forms nourishes my soul, relieves my stress, and relaxes my body. I’ve also always been fascinated by the juxtaposition of beauty and danger in volcanoes, and can never resist watching programs about them. In Hawaii, I would have both, along with warmer temperatures (winter is always the worst time of the year for me, with the cold increasing my baseline pain levels.)
I grew up in south Florida, on the coast, and I miss the feel of the salt air, the roar of the surf, and the ocean breezes. Continue reading Never Have I Ever . . . Now How CAN I? »
By wendy, on November 24th, 2011
 Ed Schipul via Flickr By Wendy Burnett
Day 13 – The Health Activist Writer’s Month Challenge Prompts (#HAWMC) for today is “Open a book. Point to a page. Free write for 10-15 minutes on that word or passage. Post without editing if you can!” When I opened my book, the word I got was “acceptance,” so here goes.
The first step toward acceptance of a chronic illness is admitting that I’m powerless to make that illness go away, or to force my life back to the way it used to be. If I deny that I’m ill, or refuse to admit and adjust to my new limitations, I eliminate possibilities from my life.
This doesn’t mean that I’m powerless to make my life with illness better, or that I have to give up on being happy. Once I’ve admitted I can’t make it go away, and that my life is different; I can look for ways to reduce symptoms and find new ways to do the things I don’t want to give up.
Denial is a “stopper” though. Continue reading Accepting Chronic Illness – It’s NOT “Giving Up” »
By wendy, on November 24th, 2011
 martha_chapa95 via Flickr By Wendy Burnett
It’s Thanksgiving, what are you thankful for?
Living with chronic illnesses can make it very difficult to find your gratitude sometimes, and we all struggle with that on a regular basis. One of the things you learn eventually is that there is always something to be grateful for . . .
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---Hubert Humphrey
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