Living With the Temperature Sensitivity of Fibromyalgia & Chronic Fatigue Syndrome
Temperature sensitivities that come along with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) can make this time of year especially hard. I find myself spending more and more time planning how I dress - not to look my best, but to be able to deal with the heat and cold.
If you're cold sensitive, of course the trick is to stay bundled up. If you're heat sensitive, you don't dress as warmly as others. When you're both, though, it gets more complicated.
My temperature is all over the map, and heat and cold each make certain symptoms worse. This time of year, things like family gatherings and holiday shopping pose a special problem - it's FREEZING outside, so I need to dress warmly, but will the house/store be hot or drafty?
The best thing I've found is to dress in layers, and shop in stores where I can put those layers in the cart so I don't have to haul them around. My feet are often the key to my overall temperature, so I make sure to keep them warm and dry, but if they're getting too warm I slip into a bathroom or dressing room to take them off and cool down for a few moments.
At family gatherings, the house generally gets too hot, so I make sure to avoid anything heavy, and I step outside now and then to cool off, or go into the bathroom and run my wrists and hands under cold water. I also think a lot about the temperature of what I'm drinking.
What are your tricks for staying not-too-hot but not-too-cold? Share them here, or in About.com's Fibromyalgia & Chronic Fatigue Syndrome community forum (under Newsletter & Blog Topics.)
Suggested Reading:
- Symptoms of Fibromyalgia
- Symptoms of Chronic Fatigue Syndrome
- Living With Fibromyalgia & Chronic Fatigue Syndrome
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Abnormal Brain Structure Predicts Severity of Fibromyalgia Symptoms
NEWSBRIEF: Imaging scans called magnectic resonanace diffusion-tensor imaging (MR-DTI) and magnetic resonance imaging of voxel-based morphometry (MR-VBM) showed what researchers call a "striking pattern of changes in brain morphology" in people with fibromyalgia (FMS).
In this study, abnormal brain morphology (form and structure) was detected in multiple regions of the brain. Changes detected with MR-DTI correlated with pain intensity, fatigue, self-perceived physical impairment, and stress symptoms. MR-VBM measurements didn't correlate to symptom intensities.
Researchers concluded that MR-DTI may support a diagnosis of FMS and possibly of similar pain syndromes as well.
Related Content: Abnormal Blood Flow to the Brain in Fibromyalgia
Is Misplaced Enzyme to Blame for Post-Exercise Fatigue in Chronic Fatigue Syndrome?
NEWSBRIEF: Scientists from the Howard Hughes Medical Institute say they've made a discovery that could be significant for treating exercise-related fatigue (called post-exertional malaise) in people with chronic fatigue syndrome (CFS or ME/CFS), some forms of muscular dystrophy and multiple sclerosis.
Researchers say an enzyme called neuronal nitric oxide synthase (nNOS) isn't where it should be, which is in the membrane surrounding your muscle cells. The effect of this missing enzyme is that the blood vessels feeding active muscles don't relax like they should. In animal trials, this causes fatigue after very mild levels of exertion.
Also in those animal trials, a Viagra-like drug helped regulate nitric oxide activity and allowed for much more physical activity. Researchers say, however, that Viagra is too short lasting to be considered a treatment for people with lowered exercise tolerance. Longer-acting drugs in the same class (PDE inhibitors) currently are being used experimental and could be considered for clinical trials.
Related Content: Exercise & Chronic Fatigue Syndrome
Dealing With Food Sensitivities During the Holidays
One of the many aspects of fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) is food sensitivities. This time of year, with all the traditional holiday foods, poses a real challenge for those of us who pay consequences for eating the wrong things.
Food sensitivities can cause digestive or intestinal problems, inflammation, fatigue, immune system abnormalities, headaches, depression, muscle pain, coordination problems and cognitive issues. Hmmm ... where have I heard that constellation of symptoms before? Ah yes - FMS, ME/CFS and other conditions linked to central sensitization.
As with so many other things, food sensitivities can make our symptoms worse. For some, it's a little worse. When I eat a lot of sugar, for instance, I get some inflammation and water retention that make my muscles ache more. For others, food sensitivities can be debilitating (think irritable bowel syndrome and Celiac disease.)
The first step toward managing your food sensitivities is to identify them, through symptom journaling and/or an elimination diet. After that, it's all about avoidance, and that's especially difficult during the holidays. A few simple tricks can help you resist temptation:
- When you're going to a party or event, don't arrive hungry! If you're only nibbling on a few things, you're less likely to over-indulge in the things that don't suit you.
- Plan to take a day or two to recover from holiday parties. (This is a good idea even if you don't have food sensitivities!)
- Make sure friends and family know about your food issues and work with them on alternatives.
- Find alternative recipes for your favorite things so you can safely indulge.
What are your food sensitivities and how do you deal with them this time of year? Share your tips and experiences here or in About.com's Fibromyalgia & Chronic Fatigue Syndrome community forum (under Newsletter & Blog Topics.)
Suggested Reading:
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Survive Holiday Shopping With Fibromyalgia & Chronic Fatigue Syndrome
I certainly hope you're not planning to head out shppping on Black Friday! For those of us with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS), that's a nightmare scenario.
- Crowded, noisy places can send us into anxiety attacks.
- All the chaos is likely to make brain fog kick in to overdrive.
- Having to run through stores to get those doorbusters, then stand in long lines to pay, is probably more physical exertion than most of us can handle.
Holiday shopping, on any day is a little frightening and overwhelming to me. I only survive it by making lists, planning carefully, dragging my husband along most of the time, and using a cane or wheelchair when I need to (in spite of how strange it may feel).
As you think about those dreaded shopping trips this year, it can help to have ways to take the dread out of the deed! Read this:
What helps you get through holiday shopping, or the season itself, without crashing? Share your tips and experiences here, or in About.com's Fibromyalgia & Chronic Fatigue Syndrome community forum (under Newsletter & Blog topics.)
Suggested Reading:
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Even With Fibromyalgia, I Have Plenty to be Thankful For!
Chronic, debilitating conditions like fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) take away a lot of good things, and they can make it hard to see the good things that are left. I want to take a moment this Thanksgiving Day to think about everything I have to be thankful for.
First has to be my family. My husband is the most amazing, supportive, understanding, and all-around good person I've ever met. My kids ... where to begin? Because they have a sick mother, they've learned compassion and self-sufficiency at an early age. My 6-year-old son wants to be a scientist and find a cure for, as he says, fiber-my-ow-ja. My daughter, who just turned 4, is eager to help with all the things it's hard for me to do.
I'm thankful for my job here. My forum and the wonderful people I've met there are an important part of my life and my coping strategy. I give a lot of time there, but I get much more from it than I put into it. This job also keeps me on top of research and allows me a voice - something many of us with these conditions feel we are denied. I love research and writing, so really I couldn't have custom-designed a better job to do from my couch!
I'm thankful for a warm, cozy home in a nice neighborhood. I'm thankful that my kids can go to good schools. I'm thankful for good friends. I'm thankful that FMS and ME/CFS are becoming more accepted as physical illnesses and that researchers are understanding more about them. I'm thankful that my health has improved tremendously in the last year.
On bad days, it's hard to find anything to be thankful for. I hope this Thanksgiving that you're feeling well enough to find at least a few things. If you're feeling lonely today, or at any time, come by the Fibromyalgia & Chronic Fatigue Syndrome community forum. You'll find a group of people there who understand, and that's something any of us can be thankful for.
Suggested Reading:
- Coping Emotionally with Fibromyalgia & Chronic Fatigue Syndrome
- 10 Ways to Survive Holiday Shopping
- The Holiday Survival Guide
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Gift Ideas for Someone With Fibromyalgia or Chronic Fatigue Syndrome
Are you looking for a holiday gift for someone with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS)? Here are some ideas for a thoughtful present:
- Warming products: Most of us are cold a lot of the time and have trouble warming up. A lot of new products that heat up are on the market, including scarves, slippers and blankets.
- Time fillers: Because we can be stuck in bed or on the couch a lot, we need ways to spend our time. DVDs, video games, hand-held games, puzzle books, magazine subscriptions and the like can add variety to how we fill those hours. It's an added bonus that brain-training games may, according to research, help us keep or regain cognitive abilities. Also consider items related to any hobbies they may have. Whether books are a good idea depends on the degree of the person's cognitive dysfunction.
- Relaxation aids: Things like relaxing music, aromatherapy products, and gentle massage tools can help with stress, and less stress means fewer symptoms! Do be cautious about scented or personal-care products (i.e. lotion, body wash) - a lot of us have sensitivities to those kinds of things, so only buy them if you know there's no sensitivity issue.
- Illness-related books: If the person is newly diagnosed or really struggling with symptoms, a book about their illness could really help. Look for ones that offer real-life help and easy-to-understand information, and avoid those that promise cures.
It can also help to know what not to give! Here are gifts that may not be appropriate:
- Exercise-related gifts: People with FMS and ME/CFS get tired of well-meaning suggestions that they exercise more, so unless you know an exercise-related item is something the person wants, don't go there!
- Plants: While plants can help create a healthy and pleasant environment, anything that needs care is a bad idea for someone dealing with these illnesses.
- Gift cards: If the person you're buying for has trouble driving or walking, gift cards are likely to go unused. If the person is comfortable shopping on the Internet, however, consider a gift card that can be used online.
- Event tickets: Planning ahead is hard when you have an unpredictable illness. Tickets to a date-specific event may be hard for the person to use. Same goes for gift certificates with an expiration date.
- Personal care products or anything scented: Because so many of us have sensitivities, unless you know the person well and know what they can tolerate, these are best avoided.
One of the greatest gifts you can give to someone with a chronic illness is your time. Perhaps you can offer to take your friend holiday shopping, help put up decorations, or do something else to help them prepare for the holidays!
Any other suggestions for gifts that are either thoughtful or inappropriate? Share them here or in About.com's Fibromyalgia & Chronic Fatigue Syndrome community forum (under Newsletter & Blog Topics).
Suggested Reading:
- The Holiday Survival Guide
- 10 Ways to Surivive Holiday Shopping
- A Simple Explanation of Fibromyalgia
- A Simple Explanation of ME/CFS
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Fibromyalgia & Chronic Fatigue Syndrome's Impact on Your Loved Ones
Fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) impact more than just those of us who have them. They also force changes and extra burdens onto the people in our lives.
Everyone touched by FMS and ME/CFS has to make adjustments. If we sickies are fortunate, we have people who will help and support us through those adjustments. We're dealing with so much, though, that it's easy to forget that the people who are supporting us may need some help as well.
My husband was always great about doing half of the housework, but since FMS became part of our lives he's had to pick up even more, in spite of the fact that I left my full-time job and now work from home. At times he has to take care of the house, the kids, and me, by himself. On top of the demands on time and energy, anyone in this situation can face added stress, anxiety, fear, confusion and more.
The sad reality is that I can't always be as supportive of my husband as he is of me, and sometimes my FMS-related moodiness makes me ... well, not the easiest person in the world to live with. Based on conversations we've had in the Fibromyalgia & Chronic Fatigue Syndrome community forum, I know I'm not the only one who has trouble showing how much I appreciate everything someone else does for me.
Just as we need to learn how to live with this, so do the people close to us. You can help, by showing them this article:
Also, you can explore the articles here:
There, you'll find simplified explanations of FMS and ME/CFS, FAQs, fact sheets and more to help them understand and adapt to your illness.
What has helped the people in your life adapt to your illness? How has it made life better? Share your experiences here or in the forum (under Newsletter & Blog Topics).
Suggested Reading:
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Positive Prelimiary Results for Potential Fibromyalgia Treatment
NEWSBRIEF: Jazz Pharmaceuticals and UCB announce positive preliminary results in the first of two Phase III clinical trials of JZP-6 (sodium oxybate) for treating fibromyalgia. Sodium oxybate is the active ingredient in the narcolopsy drug Xyrem.
The double-blind, placebo-controlled study suggested that the drug significantly decreased pain and fatigue, and improved daily function in people with fibromyalgia. The most common side effects were:
- Headache
- Nausea
- Dizziness
- Vomiting
- Diarrhea
- Anxiety
- Sinusitis
The company says the majority of side effects were mild to moderate and that the drug is generally well tolerated.
Jazz Pharmaceuticals anticipates submitting a New Drug Application for sodium oxybate to the U.S. FDA by the end of 2009, meaning the drug could be on the market before 2011. In Europe, UCB anticipates filing shortly after Jazz files its NDA.
Related Content: Drugs as Fibromyalgia Treatments
First Step Toward Exercise-Based Diagnosis of Chronic Fatigue Syndrome
NEWSBRIEF: Research just published in the journal Molecular Medicine represents a first step toward an objective diagnostic test of chronic fatigue syndrome (CFS or ME/CFS) that's based on an abnormal response to exercise, called post-exertional malaise.
Basically, researchers discovered a difference in gene expression resulting in a cortisol-related anti-inflammatory response in healthy people, but an inflammatory response in people with ME/CFS. They say more studies need to replicate these findings.
Related Content: Definition of Post-Exertional Malaise; Exercising With Chronic Fatigue Syndrome