Very little research has been done on this aspect of ME/CFS, even though it's an important issue that can take a big toll on relationships, self-esteem, and quality of life.
Researchers looked at sexual dysfunction in relation to fatigue, specific symptoms, and overlapping conditions. These factors were linked to higher levels of dysfunction:
- More intense fatigue;
- More cognitive, neurological, and neurovegetative symptoms;
- Overlapping fibromyalgia, Sjogren's syndrome, or myofascial pain syndrome.
If you believe you have sexual dysfunction, your doctor may be able to help. If it's become a problem in your relationship, you may want to consider counseling. Also, the resources here may help:
Is sexual dysfunction a problem for you? What impact has it had on you and your relationship(s)? What has helped? Leave your comments below!
Photo © Medioimages/Photodisc/Getty Images
I've just finished up four really busy days in a row. I finished my Christmas shopping, went to the grocery store, did a little laundry, hit two holiday parties and a couple of kids' performances - on top of squeezing in some work hours. Yes, I'm about to fall over!
So what's next on my agenda? Very little. That's because I know if I don't take time off, I'll be in big trouble come Saturday, when I need to do some cooking and gift wrapping for a get-together.
Beyond that, I have a lot of wrapping to do, and since I've been sick almost continuously since Thanksgiving, my house is a disaster. Fortunately, my kids will be out of school and I can put them to work! I always make sure to have plenty of gift bags around to save time and energy, so I'll try not to over do it there. Then, I've got some minimal cooking and I'm done.
Then, for two days after Christmas, I'll allow myself recovery time. That usually helps me avoid spending New Year's Eve in a lot of pain.
How are you holding up this holiday season? Do you have down time built into your schedule? Have you decided some things just aren't going to happen? Leave your comments below!
Photo © Judith Haeusler/Getty Images
Research published in Annals of the Rheumatic Diseases suggests that what people with fibromyalgia perceive as muscle fatigue is actually our brains misinterpreting signals - just as it does with signals from pain and other sensory stimuli.
By comparing objective markers of muscle fatigue after exercising a muscle to perceived exhaustion, researchers were able to determine that participants with fibromyalgia didn't have true muscle fatigue compared to healthy controls. Instead, the perceived fatigue appeared to be part of our central nervous system dysfunction.
The study also supported earlier research with findings of:
- Shorter endurance times,
- Lower strength
- Perceptions of higher effort.
Researchers say their result is possibly due to difficulty differentiating pain from muscle fatigue, which also has been seen in earlier studies. They say their results may help explain our intolerance of physical activity. It could also explain why we generally see small improvements to muscle fitness when we're exercising to the point of perceived exhaustion.
- Exercising with Fibromyalgia
- Fibromyalgia & Pain Inhibition in the Brain
- Neurotransmitter Dysregulation
Photo © Michael Greenberg/Getty Images
You'd be hard pressed to find someone with a debilitating illness like fibromyalgia and chronic fatigue syndrome who hasn't been disappointed, time and again, by what they're able to do. Whether it's job performance, a vacation, elaborate Christmas plans, or workout goals, we've all found ourselves unable to fulfill some of our own expectations about ourselves.
This Thanksgiving, I had a horrible sore throat and a 103-degree fever. I couldn't do any cooking, and I couldn't attend the big family dinner. That was the third illness to put me in bed since school started in September. Last week, I was supposed to help decorate at my daughter's school and had to cancel at the last minute because I was, once again, sick. (Thank you, immune suppressants!)
I haven't been on immune suppressants for all that long, but before that something else would come along and knock me down every so often, and before that something else. I've had to accept that I can't always expect the best-case scenario.
It took me a while to accept that, but I've learned that before acceptance, all you get is a sore head from beating it against the wall. I've seen it with myself and with scores of other people over the years: you can have constant anger and frustration, or you can learn to manage your expectations.
Don't think I'm saying it's easy! It's an enormous thing, and harder for some than others. I know my husband still battles too-high expectations of how much of my slack he can pick up when I go down. All it does is cause stress, and you know stress is not your friend!
I'm really goal oriented, and something that helps me is setting a multi-tiered goal: I identify the ideal, the pretty good, and the minimally acceptable, and then, as my health waxes and wanes, I regularly reevaluate as to which of those levels is realistic. I've learned to say no when I have to, when to call for help, and when to throw in the towel.
You may think that accepting your limitations is giving up and letting your illness win. I get that feeling, believe me. Here's an example of finding acceptance vs. giving up:
When I got too tired to fight against my illness any longer, it meant having to give up a lot - including my career. However, my mind set was, "Okay, I can't do that, but what can I do?" I never quit learning about my conditions and looking for things that would help. That's allowed me to steadily improve and regain a lot of functionality.
Compare that to someone close to me, who got knocked down by a similar illness and said, "I just have to accept that I'm going to be like this forever." She went to bed and quit trying, refused to educate herself, and refused to try new treatments because the first ones failed. She gave up, and it's done her no favors.
Acceptance is the place between bashing your head against the wall and giving up on your life. It's the first step toward facing your illness realistically, which is crucial for getting better. You can learn more about that here: Acceptance for Managing Your Illness.
Do you struggle with expecting too much of yourself? Have you worked toward acceptance? What helped? Leave your comments below!
Researchers found that people with this condition who had better stress-management skills has lower emotional distress and fewer fatigue-related problems. That was true across the board, regardless of overall symptom severity.
They conclude that the ability to manage stress lightens the burden of illness, and they urge further study to identify what types of stress management are most effective in chronic fatigue syndrome.
Does stress have a big impact on how you feel? Have you found effective ways to manage your stress? What effect did it have on your symptoms? Leave your comments below!
Photo © Jessica Miller/Getty Images
Fibromyalgia and IBS are extremely common comorbidities. Out of 104 participants with both conditions, researchers found that seven of them, or 6.7%, tested positive for celiac disease even though they hadn't been previously diagnosed.
That percentage may not seem terribly high. However, a recent study to gauge the prevalence of celiac in the U.S. population found it to occur in 0.71%. That number is similar to findings in other countries. That means those of us with fibromyalgia and IBS are nine times more likely to have celiac.
Researchers didn't find the same prevalence in those with just IBS. Previous research on the overlap between fibromyalgia and celiac has been inconclusive, so this association may be unique to those with fibromayglia/IBS.
About Celiac Disease
Celiac disease is often referred to as a "gluten allergy," but it's actually not an allergy in biological terms. Instead, it's an autoimmune reaction, meaning that the immune system has mistakenly identified it as a threat, similar to a virus or bacteria. It then sends immune cells to destroy the intestinal lining that has absorbed gluten during digestion.
Gluten is a protein found in wheat and many other grains. It's also used as a food additive in a wide variety of products, making it difficult to avoid. At this point, the only treatment for Celiac disease is a gluten-free diet.
Celiac disease causes an array of intestinal symptoms including pain that can linger for a few months after gluten is discontinued, because of the time it takes the damage to heal. Long term, poorly managed Celiac can lead to lymphoma due to the constant damage of the intestinal lining.
- About Celiac Disease, by Jane Anderson, About.com Expert on Celiac Disease & Gluten Sensitivity
- The Gluten-Free Diet, also by Jane Anderson
- My Series: Gluten Free with Fibromyalgia
- Should You Be Gluten Free?
If you have fibromyalgia and IBS, you may want to ask your doctor about being tested for Celiac disease, especially if your intestinal symptoms are hard to control or if you've noticed that gluten-containing foods are problematic. However, it's important to note that some cases of Celiac disease have no symptoms at all.
Do you have all three of these illnesses? Do you suspect you have Celiac disease? If you've gone gluten free, how has it impacted you? Leave your comments below!
Photo © Jodie Coston/Getty Images
Have you ever turned to alcohol trying to relieve your fibromyalgia symptoms? It's a possibly dangerous and probably controversial topic, but some researchers are putting it out there.
A new paper from Tufts University asks the question of whether alcohol could be an alternative treatment for us. The researchers behind it base their inquiry on two things:
- A study released earlier this year, and
- Alcohol's impact on pain pathways and the neurotransmitter GABA.
I wrote about the earlier study back in March. Basically, when looking at self-reported alcohol consumption in people with fibromyalgia, researchers linked moderate alcohol use with lower pain levels and better quality of life. (More alcohol did not mean more relief!)
The physiological effects are essentially that alcohol lowers pain levels and increases GABA, which has a calming effect on the brain. Specifically, GABA counteracts another neurotransmitter, glutamate, which gets the brain riled up. Some studies have linked high glutamate levels with fibromyalgia. (Learn more: GABA/Glutamate Dysregulation)
Taken together, the researchers believe it's warranted to study alcohol as a potential treatment for us.
Of course, this raises serious issues. First, it's hard to say just what the earlier study means. For instance:
- Does moderate alcohol consumption improve symptoms and allow people to have less pain and a better quality of life,
- OR are people with less fibromyalgia pain and a better quality of life more likely to consume moderate amounts of alcohol?
Second, many of us are sensitive to alcohol and can't tolerate it even in small amounts. Then again, some of us also can't tolerate pain medications or antidepressants, so maybe it's not that different from current treatments in that regard.
You could also argue that the risk of addiction and other health problems of alcohol are similar to those of narcotic pain killers. Still, liver damage, functional impairment, alcoholism, and alcohol poisoning are all major issues that will have to be assessed if this line of research moves forward.
Alcohol isn't regulated by prescription. That makes it easily accessible - which can be good and bad. Limits on, say, Vicodin pills are aimed (at least in part) at protecting us from taking too much. Meanwhile, you can buy as much alcohol as you want and your doctor has no way (other than your word) to gauge whether you're over using it.
Then there's the possibility of interaction with other drugs. Most of the meds prescribed for fibromyalgia can interact really badly with alcohol. Please, please, please - never mix alcohol with narcotic pain relievers! Too many people end up dead that way. It doesn't go well with antidepressants, either.
I'm not naive - I know some people already use alcohol to treat their pain. However, if you do, I hope you're using it safely and in moderation and not further damaging your health with it. (For the record, I feel the same about other forms of pain relief, as well.) It takes discipline to stop when you should, especially when you're still in pain.
If research does show that alcohol is effective, it'll be interesting to see how the medical community reacts to it. I know some doctors recommend a daily drink of wine for the health benefits - would they start suggesting that to us? Would it be a last-ditch treatment after all else failed? Would uninsured patients be more likely to get the recommendation? And the biggie - how well would doctors council patients about how much was considered medicinal?
Okay, obviously I have a lot of questions and concerns. What about you? Leave a comment below to tell me what you think about alcohol as a treatment!
Photo © Jupiterimages/Getty Images
When you have a debilitating chronic illness like fibromyalgia and chronic fatigue syndrome, sometimes you find yourself stuck in bed or on the couch for long stretches of time - like days or weeks. At the same time, most of us have to keep a household running as much as possible. It's a daunting task, especially when taking a shower leads to a four-hour nap, or when you're in so much pain that you can barely speak.
I had a few years where I'd be up for a couple weeks, then down for a couple weeks. My kids were really little then. It wasn't easy, but we found ways to make it work ... at least, at a basic level. I've had some reminders of this lately, since I keep getting really sick and going down for a few days (thank you, suppressed immune system!) It's also shown me what it's like with somewhat older kids, who are capable of more, but also harder to keep my eye on.
First, a word of encouragement for those who are in this situation: Being limited by your illness DOES NOT make you a bad parent. A whole lot of us have raised happy, well-adjusted kids while facing those limitations, and they often grow up to be especially caring, understanding, and self-reliant because of our challenges. Make sure they know they're loved, and they'll be okay in spite of fewer trips to the park and getting their own snack out of the fridge.
When my kids were little, they spent a lot of time hanging out in my bedroom while I was in bed. We snuggled (as much as I could without it hurting) and watched movies. I read to them, grateful that their books were simple when my fibro fog was bad. They colored and played games on the floor. I'd drag myself to the kitchen to make meals when I could, and we made sure to keep a lot of healthy foods on low shelves for when I couldn't. On the worst days, they brought me food.
Usually about an hour before my husband got home, I'd start encouraging them to clean up the floor and bed. Some days, they did a good job. Other days, they didn't. We learned to live with it. (We also had to institute a "no crayons near the heat vent" rule, but it's nothing a strategically placed hamper can't conceal.)
As I mentioned, the challenges have changed as they've gotten older. They can now make sandwiches and cook in the microwave. They're much more capable of doing things around the house, like cleaning the kitchen and hanging some laundry. My son can ride his bike to the grocery store if we're desperate for something. They can entertain themselves in a different part of the house, meaning I don't have to watch cartoons all day and their toys aren't all over my room. I can take a nap without worrying that they'll severely damage themselves. Those things are wonderful, but....
It's harder to make sure they've done the jobs I assigned them around the house. My husband walks in on more messes that I'm unaware of. They can grab and eat whatever they want and the only way we know is because they're bad about throwing wrappers away. Also, they have all kinds of activities and occasionally have to miss something - which means a lot more chances for disappointment and resentment.
We have a home phone with multiple receivers, and some weeks I use it less for calls than for paging my children to check on what they're doing, see if they've finished their homework or cleaned the litter box, or break up an argument I can hear. I also feel isolated from them like I didn't when they were playing on the floor. We have less overall interaction, which means a higher percentage of it is spent telling them what to do. Not fun. But then, I suppose that's a reality all parents face as kids get older.
Over the years, I've heard from a lot of people who've had to parent from bed. While it's hard to be sick when you have babies and toddlers, it's often easier for the kids to accept it as "normal." During their teen years, when they're so self-focused, a sudden change in what mom or dad is able to do may be harder on them.
Of course, a lot of elements can make the situation much harder: a child with special needs, unwelcome lifestyle changes due to lost income, a non-understanding spouse or one who travels for work, or being a single parent may mean that you can't just adapt and keep things reasonably happy and functional.
If you're struggling to parent while sick and don't have family or friends who can help, you may want to check with your insurance (assuming you have it) or social services - you may be able to get some assistance. Some families can benefit from group counseling, as well. Your doctor may be able to discuss options with you.
Sometimes, you just need to vent about how hard it is. Feel free to do that here, in my forum, or on my Facebook page. (Remember to always be careful what you say online - if it's something that could come back to haunt you, choose a user name that won't show up when someone Googles you.)
What struggles are you facing? What helps you get through the day? For those who've been through it, any advice is welcome! Please leave your comments below.
Photo © Stockbyte/Getty Images
When you've had an unexplained illness for months or years, then at long last get a diagnosis of fibromyalgia or chronic fatigue syndrome, one of the first questions you're bound to ask is, "What's the best treatment for that?"
The short answer is pretty much the same for most questions regarding these illnesses: "No one knows for sure." That's a really NOT satisfying answer, so it doesn't do us any good to stop there. To help you learn why there's no single "best" treatment, and what your options are, I've put together:
What has turned out to be your best treatment(s)? Have you put faith in some "miracle" treatment only to find out it didn't help? Leave your comments below!
Holiday Blog Classic
The holiday season is especially difficult for those of us with chronic illnesses like fibromyalgia and chronic fatigue syndrome, and it's really ramping up right now. To help you get through the next few weeks, here's an index of holiday resources. I hope you'll keep these links handy and refer back to them as you need to.
- Holiday Depression
- Survive Holiday Shopping
- Stop Before You Want to Stop
- Food Sensitivities
- Alcohol Intolerance
- Christmas-Day Gameplan
Learn more or join the conversation!
Photo © Judith Haeusler/Getty Images