Overheating with Fibromyalgia & Chronic Fatigue Syndrome
Boy, did I get overheated today!
That's nothing new to me, or to many people with fibromyalgia and chronic fatigue syndrome, but this was my first biggie of the season.
It happened while I was out pulling weeds in my flower beds. It needed to be done weeks ago ... but hey, that's life with chronic illness, right? It was in the high 70s, and my yard gets full sun for most of the day -- which seriously limits the amount of time I can spend out there.
I worked for about 45 minutes, with a couple of short breaks and a lot of water, then called it a day. I was pretty warm when I came in, but my temperature continued to rise, especially on my face. I took a cool shower, and then turned the water to straight cold and let it hit my face for awhile.
It felt great, but once I was out, I felt myself getting hotter again. My face was beat red, and my forehead wouldn't stop sweating. My husband pointed a laser thermometer at me and said my arm was around 86 degrees, and my cheek was 94!
I've dealt with this enough to know what helps (at least, for me) - drinking lots of cold liquid, putting an ice pack around my shoulders, and giving it some time. (If I hadn't had to leave the house, I would have soaked in cold water.) It's a lot better to prevent overheating than to try countering it, but that's not always possible.
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Looking Forward to Something with Fibromyalgia & Chronic Fatigue Syndrome
What do you look forward to? Is there something that brightens your week, or your day?
If not, you may want to find something that gives you happy anticipation. I know, sometimes life looks really bleak and we feel like we'll never feel better, and things will never be okay again. But if you can find one thing to look forward to, it might help you get through the hardest times.
I've had a horrible time motivating myself for the past couple of months. My arthritis has been up and down, I'm still having digestive issues that the doctor hasn't been able to figure out, and I'm starting to get those little pin-prick pains that make me worry my fibromyalgia is coming out of remission. My sleep schedule has been a disaster. And I keep getting sick, thanks to the immune-suppressing arthritis meds.
As a result, I haven't been getting much done on most days. I've found myself longing for how I felt in November and December, when, somehow, I had enough energy to do my job, keep the house in almost decent shape, and found time to write a book.
I finished that book in January and then sent it off to several people to get their opinions. I've been waiting for them to get back to me until recently, and I've been concerned that I wouldn't have the energy or motivation to get a re-write done.
And you know what happened? I got their notes back. The prospect of having that project to work on, which is incredibly fun to me, has boosted my motivation once more. I find myself wanting to get my job done, wanting to get a little done around the house, all so I can work on my book without guilt or other distractions. What I've learned is that having something enjoyable to look forward to gives me the motivation to get more done.
After noticing this, I looked at my life in a new way. I realized that when I'm looking forward to getting together with friends, I'm more likely to get the house in shape. When I'm looking forward to a vacation, I'm able to get work done ahead of time so I can take the time off. It's not always easy, but it does consistently happen.
And then come the days, weeks, and months when I don't have that motivating factor. I feel more sluggish, it's harder to get myself moving, and I fall behind on everything.
I'm certain that part of this is my deadline-oriented personality. There's a reason I worked in TV news, with constant looming deadlines - I function really well that way, whereas I'll procrastinate forever if I can. But I have to wonder if some other people out there will have this in common with me.
I've decided that I always need a creative project in the works, something that I can look forward to as a treat for after I get a certain amount done. (Of course, I always have to keep pacing in mind and set realistic goals!) That "something" could be anything, though - a show on the DVR that you're excited to watch, a phone call you want to make, a friend you get to see in a few days, a book you want to read. As long as there's something.
Even if your health is bad enough that motivation is irrelevant and you can't do anything, looking forward to something can at least boost your mood. And when you're dealing with brain-chemistry problems, that can be a treatment in and of itself.
Does looking forward to something help you find motivation? Does it just drain your paltry energy stores? Does it boost your mood but nothing else? Leave your comments below!
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Pain & Dread in Fibromyalgia, Chronic Fatigue Syndrome
Have you noticed that negative emotions like fear and dread can increase your fibromyalgia and chronic fatigue syndrome symptoms? I have.
I used to think it was just stress - as we all learn early on, any time our stress hormones kick in, we're going to feel worse, and possibly much worse. However, I recently watched a show on what fear does to the brain, and it clarified this link for me.
Fear and dread activate one of the same regions of the brain as pain. In the brain-chemistry sense, they're related experiences. That region is called the amygdala.
So what happens when we're in a situation that makes us dread pain? Double the activation? It seems only logical that your amygdala would be going crazy. When we fear something, our brains go into overdrive to detect it. It's called hypervigilance.
In fibromyalgia, and to a lesser degree in chronic fatigue syndrome, the brain over-reacts to pain signals and makes them worse. We're believed to be in a constant state of hypervigilance, which means we notice every tiny bit of pain. By stirring up the amygdala even more, it's easy to see how the cycle of pain and hypervigilance would only get worse.
Don't get me wrong - I'm not saying that we imagine pain, I'm saying that we perceive pain that we wouldn't notice if we were healthy. That's why a healthy person can wear tight jeans: it's uncomfortable for a little while, then their brain stops paying attention to it. In us, our brains read that discomfort as pain, and instead of getting used to it and ignoring it, the brain keeps sounding the alarm that something is horribly wrong.The result is that those jeans feel like they're burning our flesh!
The lesson for us is that we need to learn how not to dread pain. I know, easier said than done. If you work at meditation, relaxation, and stress management, though, it just might help. Anti-anxiety supplements and medications may also be good in this case. Whatever lessens your dread of a symptom flare just might help prevent the flare itself.
Do fear and dread tend to trigger your pain? Have you found things that help lower your fear? Leave your comments below!
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Genetics of Fibromyalgia: Studying Families
Research Brief
In a new study, scientists found evidence suggesting a strong genetic component of fibromyalgia by genotyping members of multiple families in which several members have the condition.
Researchers identified 116 such families and analyzed their genetic makeup using 341 different markers. They found that the estimated risk rate of fibromyalgia in siblings was 13.6%, compared to a 2% prevalence in the overall population.
They also identified particular genetic markers on a chromosome region labeled 17p11.2-q11.2. This is the first study to identify this particular region as involved in fibromyalgia.
Researchers concluded that these findings suggest genetics play a major role in who develops fibromyalgia. They say further studies involving these families should go forward in order to discover more about the risk and causal factors for the illness.
Do several people in your family have fibromyalgia? How many, and how closely are you related? Leave your comments below!
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Explaining Fibromyalgia & Chronic Fatigue Syndrome
Seriously, what is harder than trying to get people to understand fibromyalgia or chronic fatigue syndrome? It's taken decades of research to just start seeing the big picture of these illesses!
And yet, with our foggy brains, we're stuck trying to understand what's going on in our bodies, and to help the people around us understand them, as well.
Some people really want to understand but struggle with it. Others think they understand but are sorely mistaken. Sadly, another group doesn't care enough to learn anything.
For those who are willing, it's important to find ways to make them "get it," as much as someone can when they've never been through anything similar. To help you put together an explanation that works for you, see:
If you've got responses prepared in your head, it'll be easier to pull them out through the fog.
How do you explain your illnesses to the people in your life? How is it different when your friends and family understand? Have you given up trying to educate others? Leave your comments below!
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Fear of Activity with Fibromyalgia & Chronic Fatigue Syndrome
Fibromyalgia and chronic fatigue syndrome symptoms can get a whole lot worse after physical activity. Because of that, it's pretty natural for us to be afraid of the consequences, and therefore avoid activity.
I've seen a lot of research that mentions these tendencies, and it usually comes off sounding like this is psychologically abnormal behavior and needs to be fixed. That seriously rubs me the wrong way. Avoiding the milieu of pain, fatigue, brain fog, and other nasty symptoms that exertion can trigger seems like about the most sane thing a person can do!
That's why it was refreshing to see a new study that acknowledged, right off the bat, that it's not so strange:
"These exacerbations make it understandable for people with CFS and FM to develop fear of performing body movement or physical activity and consequently avoidance behaviour toward physical activity."
Researchers went on to say that their goals were to look at ways to measure fear of movement and avoidance behavior, how common they are, and, yes, what treatment options are available for it.
So they are saying it's something that needs to be treated, but I have to admit that - to a degree - they're right. (But only as long as it's approached correctly!)
As someone who's been fortunate enough to make big improvements in functionality, I've wrestled with fear and avoidance of exertion. At times, I've held back more than necessary, and at times, I've opted out of things I would have enjoyed because of fear. The health consequences have been that my stamina remains horrible some three years into remission; I haven't managed to lose weight or improve my strength (which isn't much better than my stamina;) and my arthritis pain is worse because I'm too sedentary.
Even though we know that exertion is bad for us, in terms of symptoms, we also can't deny that the human body requires it. Being sedentary is bad for our muscles and joints, and our hearts and lungs. So how are we to protect (what's left of) our health?
You'll find a lot of different answers to that question, and there's certainly not a one-size-fits-all solution. To me, the only thing we can do is remain as active as possible without triggering a symptom flare. And we can't do that if we're too scared to try.
Which condition you have plays a role in determining how to approach activity. In fibromyalgia, too much activity makes us crash, but the right amount can be therapeutic. It improves brain chemistry and blood flow, and for many of us, gradually increasing the amount and intensity of movement can help alleviate our symptoms and improve our quality of life.
With chronic fatigue syndrome, some people will have good luck with the above approach. Others will just keep crashing. For those in the second group, you may need to find effective treatments and get healthier before you can attempt to increase your activity level.
The question we need to ask ourselves is:
- Am I avoiding exertion because I need to, or because I'm afraid?
If you decide it's because you're afraid, and you can't get over that on your own (believe me, it's not easy,) you might want to ask your doctor about cognitive behavioral therapy (CBT.) That's a type of treatment that can help you identify bad habits and incorrect thought patterns, and then change them.
CBT is controversial because some doctors tout it as a primary treatment, especially for chronic fatigue syndrome, in spite of weak outcomes in research and a wealth of real-life horror stories from people who've been pushed too far and have wound up sicker for years afterward. It's no wonder, when you understand that this condition is based on problem physiology, and not bad thoughts and behaviors! When it's used properly, though, it can be effective.
Learn more about this treatment:
Learn more about exercising:
Do you fear exertion more than you need to? Have you overcome fear and avoidance? How much activity can you handle before crashing? Leave your comments below!
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Headaches/Migraines in Fibromyalgia & Chronic Fatigue Syndrome
Did you start getting headaches, and especially migraines, along with fibromyalgia and chronic fatigue syndrome? It's a common problem.
Not all of us get them. Some of us see changes in the type(s) of headaches we get. For some odd reason, the migraines I'd had since junior high went away when fibromyalgia kicked in. I still get sinus and tension headaches, especially when my TMJ or the myofascial trigger points in my neck act up, but at least the migraines are gone.
For more on headaches, why we get them, and what you can do about them, see:
How did your illness change your headaches? What helps with them? Leave your comments below!
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May 12: Awareness Day for Fibromyalgia & Chronic Fatigue Syndrome
Blog Classic: May 9, 2012
Awareness is a powerful thing. It's done wonders for some illnesses, such as muscular dystrophy, breast cancer and Parkinson's disease. Awareness means public acceptance and money for research - both of which are desperately needed by those of us with fibromyalgia and chronic fatigue syndrome.
May 12 is our Awareness Day and events are planned for around the country. It's tough for those of us with these illnesses to get out there and take part in these activities, even if they are happening where we live. Some of us are lucky if we have enough energy to take a shower, get dressed and eat on any given day!
Still, that doesn't mean we can't all do a little to help raise awareness. Social media is a great way to help get the word out. You'll find a list of good articles to help people understand our conditions here: Raising Awareness Through Social Media.
To see if there's an event near you plus get ideas for things you can do, see: Awareness Day Main Page 2013.
How have you raised awareness? What do you plan to do this year? Leave your comments below!
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Being a Caretaker with Fibromyalgia or Chronic Fatigue Syndrome
When you have fibromyalgia or chronic fatigue syndrome, it's better to have someone taking care of you than relying on you. Of course, that's not always the position we're in.
As a mom, I do plenty of care taking. However, my husband is pretty good at taking care of me when I need it. A few weeks ago, we had a bit of a role reversal. It hasn't been easy.
He had to have surgery on a tendon in the wrist and thumb of his right hand. And yes, he's right handed. He couldn't drive. He couldn't cook. He couldn't hang laundry or load the dishwasher. He needed help showering and getting dressed. I needed to not only take care of him, but I needed to do some of the things he normally does around the house.
I tried. I really did. I succeeded a lot of the time, but I also had times when my body failed us both.
A couple of times, I was exhausted and couldn't stay awake any longer, and of course it was at inconvenient times. My left hip, where the arthritis is worst, also took me out of commission from time to time. He was left to take care of things he probably shouldn't have, like getting a meal together for him and the kids. He drove us to the doctor's appointment at which he was released to go back to work because he was in far better shape than I was that morning. Lucky for us both that he's a quick healer and is fairly competent with his left hand!
Now he's back and work and his hand's recovering well, but I'm sitting at home lethargic and achy. I have a hard time staying awake, and as much as I want to be productive, I just don't have the energy. Mentally, I'm sludge. To be honest, I'm really hoping that this all makes sense once I finish pulling it out of my brain by sheer force of will.
This all leaves me reminded of three things:
- Even though I'm a lot better than I used to be, I still have a long way to go;
- I'm incredibly lucky to have a husband who does so much to help me;
- I don't know how people with these illnesses manage to take care of new babies, special-needs children, or chronically ill loved ones, who need help indefinitely.
Have you had to become a care taker? Short-term or long-term? What has it done to you, and how have you managed to cope? Leave your comments below!
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Unique Pain Triggers in Fibromyalgia
Research Brief
A new study shows that fibromyalgia (FMS) has unique pain triggers, when compared to rheumatoid arthritis (RA.)
Researchers evaluated pain at rest in people with both conditions, then looked at what triggered increased pain, using a startling noise, forehead cooling, and psychological stress.
In the at-rest state, depression was associated with higher pain scores in RA, while stress was associated with higher pain scores in FMS. Pain tolerance (the amount of pain a person can take without breaking down physically or emotionally) was not associated with psychological distress in either group.
Participants with FMS had increased pain:
- After being startled by a noise,
- After painful forehead cooling,
- And while performing mental arithmetic that caused stress.
Those with RA had increased pain during the second two items, but not the startle.
Researchers concluded that RA pain increases due to psychological stress, but increases in FMS pain are due to a stress-related process, such as how the stress-response system handles pain, or abnormal interactions between certain types of pain-sensing nerves.
Depression vs. Stress
It's especially interesting to see that RA - a condition that no one doubts is "real" and extremely painful - is more closely tied to depression, when some doctors still want to tell us we're "just depressed."
This research also shores up the link between FMS and stress, which most of us learn about quickly through our daily lives. Further, it underscores a connection with the physiological component of stress rather than the psychological.
Personally, all three of the tests sound highly unpleasant to me! In my house, we have a "don't startle mom" rule, because it causes my fight-or-flight response to go into overdrive, which makes all my muscles tense up, and sends pain through my entire body.
I have to ice frequently because of my arthritis and some other problems, and while I fairly used to it, certain parts of my body ache when they're chilled. This is a common FMS symptom called thermal allodynia.
And math in my head? Forget it. The numbers won't stay straight, and I can't retain them in my short-term memory for very long. Anything beyond simple addition is going to throw me. Gotta love fibro fog! (Get more information: Problems with Time & Math.)
What would these tests do to you? Do you agree with the researchers that stress is more significant than depression in us? Leave your comments below!
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