By wendy, on January 21st, 2012%
By Wendy Burnett
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 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 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 October 30th, 2011%
 Credit: Free images from acobox.com
By Wendy Burnett
When I was in therapy, my therapist used to tell me I was comparing my “insides” to everyone else’s “outsides.” (Thanks Ginny, it took me a while, but I finally get it.) Intellectually, I understood what she was saying, but I never really “felt” it until recently.
What gave me the push I needed was one day when I was still working fast food. One of the people I was working with said she envied me and wished she had a life like mine . . . My immediate thought was, “darlin, if you knew what my life is really like, you wouldn’t want it.” That’s when it really connected for me.
She only saw what I let her see, the cheerful, funny me with the great friends and strong marriage. Continue reading Are You Comparing Your Insides to Everyone Else’s Outsides? »
By wendy, on August 27th, 2011%
 by Tooley
By Wendy Burnett
I read this awesome post about The Loneliness of Pain and it really made me think about how isolated I feel sometimes. Even though I have people in my life that I CAN talk to about how bad I feel, I frequently choose not to for various reasons.
Have you done that? I’m betting that most of us have, either because we’re afraid that eventually these folks are going to get tired of “listening to us bitch,” or because we don’t want them to feel bad. There are more reasons, but most of them seem to boil down to one or the other of these two. Continue reading (Chronic Illness) = Loneliness + Isolation »
By wendy, on June 23rd, 2011%
 Image via Wikipedia
By Wendy Burnett
If you take more pain medication than your doctor has prescribed for you, on a regular basis, you have a much bigger problem than you think. Whether the doctor is under-prescribing or not, if you’re constantly calling and asking for more meds, you are labeling yourself as an addict.
Even if you legitimately need a higher dose, taking matters into your own hands will only make it harder to get. The more desperate you seem when you ask for more, the less likely your doctor is to even renew your existing prescription, let alone increase it. Continue reading Do You Take More Pain Meds Than You’re Supposed To? »
By wendy, on May 6th, 2011%
 Image via Wikipedia
Are you living in the future? In the time when there will be a cure, or a treatment that will make everything better? Or do you live in the past, rehashing old trauma; remembering all the bad things that have happened to you? Or maybe you live in the past, dreaming of the days when you felt GOOD; when you could work all day and still cook dinner when you got home.
I’ve been in all those places, over and over; and you want to know what they taught me? That I’ve spent a big portion of my life missing out on my “now.”
My past is over. The good and the bad are gone, they live on only in my head and in how they’ve shaped me. The only power the painful times have is the power I give them to affect my present. If I obsess over the wrongs that have been done to me in the past, or the things I’ve lost; it prevents me from being able to enjoy what I do have.
The future? There’s no guarantee that there IS a future. If I’m walking home from work worrying about what I have to do when I get here, I don’t see the roses blooming, I don’t smell the sweet honeysuckle that grows beside the sidewalk or hear the beautiful bird song.
I can walk home focused on what I’m going to do when I get here, or focused on how tired I am, or how much my back (neck, hip, knee) hurts; and the more I focus on the pain, the more I hurt; the more I focus on all the things I have to get done, the more stressed I get.
My other option is to acknowledge the pain and what needs to get done, then focus on how good the sun feels on my skin or how sweet the honeysuckle smells. I can choose to focus on the beauty of the roses, or the pain of the thorns. It seems such a small thing, that choice; but it’s actually huge. It’s the difference between having a good day, or a painful one; the difference between being stressed out or relaxed. The pain is going to be there anyway, it’s always there; but if I choose to focus on the beauty I will be happier than I will if I focus on the pain, and in the end, isn’t that what life is all about?
The biggest thing I’ve learned in this journey is that positive thinking won’t cure my illness, but it sure as hell makes it easier to live with.
By wendy, on April 3rd, 2011%
Have you tried herbs or supplements for your chronic illness? I’ve had to find “other options” for treating my fibromyalgia and bipolar disorder because of my financial situation, so I’ve been doing a lot of research and collecting some tools for working with the herbs I like to experiment with.
 Capsule Machine and Completed Herbal Capsules In other words, I’ve been learning to make my own herbal treatments for my various symptoms. I ordered an “encapsulator” for making my own herbal capsules, and have been playing with that a LOT. Instead of buying bottles of herbal supplements, I’ve been making my own. Continue reading Making My Own “Medicine” for My Chronic Illness »
By wendy, on March 29th, 2011%
 Image via Wikipedia
I’ve been a very, very bad blogger lately, and haven’t posted in forever. The short explanation is that work and the fibromyalgia have been playing hell with my body, and most of my non-work time has been spent doing the things that are absolutely necessary and sleeping. (Lots and LOTS of sleeping.) One of my blogging friends, Phylor, has posted a letter to the chronically ill part of herself, and it inspired me to start writing again (thanks, girl, I needed that!)
Dear body;
I owe you an apology . . . a big one. I know that many of the things I do make you worse, and I’m really sorry about that, Continue reading Dear body: A Letter to Myself About Chronic Illness »
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---Hubert Humphrey
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