My husband loves to camp. He grew up doing it. I did not, so it was a new thing for me 10 years ago. I was getting OK at it, and then 3 years ago fibromyalgia became a major factor in our lives. Because I didn't want to stop living, and I really didn't want my husband and children to stop living, we figured out some solutions. Chief among them was an inexpensive tent trailer we fixed up (all new canvas and cushions, because of my allergies.) After a few trips, I've figured out what I need in order to get through a couple of days in the wilderness without paying too steep a price.

Here's what it takes:

• Multiple changes of clothing that can be layered. That way I can adjust my temperature based on both the weather and my internal thermostat (which is broken) and avoid temperature-related symptom flares.
• Good bedding. A scratchy or cold-feeling sleeping bag, or one that wrinkles up underneath me, would keep me up all night. I'm fortunate that the soft, cozy one I use also has an "escape hatch" for my feet, so they don't get overheated. And forget those little camping pillows -- I take the good one that I use every night.
• Non-typical mosquito repellent. Spraying chemicals all over my body does bad things, but so does my mosquito allergy! On our last excursion, I used one of those new clip ons and was very happy with it. I also had success with a friend's homemade, all-natural spray. (If you'd like the recipe, let me know -- I'm sure she'd share!)
• Allergy medications & topical creams. I take 24-hour Zyrtec (cetirazine), but I make sure to have Benadryl on hand in case I find a new allergy. The cream is for mosquito bites and scratches from plants that make me itch -- which I think is most of them. (The Benadryl is also good for insomnia.) Also, I make sure to have TWO asthma inhalers in case one runs out.
• Non-smelly muscle creams. Sadly, I have to leave my Capzasin and Tiger Balm at home because they can attract bears and other unwanted close encounters. Aspercreme, for me, works almost as well without the strong food-related odor.
• Ice packs. Because some of my pains only respond to ice, we put several ice packs in our coolers. They help keep the food cold, and I can use them as needed.
• Plenty of hot drink options. I always take tea for the mornings, but I make sure to have some decaf options to warm me up at night.
• The entire medicine cabinet. The one thing I leave at home will be the one thing I need, so everything comes with me.

Someday I hope to have a power supply so I can take my CPAP with me, too -- and considering how loudly I snore without it, I imagine my husband will find one before long. And of course, the 3 major keys to success are:

1. Pacing
2. Pacing
3. Pacing

Have you continued to camp in spite of your illness? What helps you get through it? What hard lessons have you learned? Share your experiences by leaving a comment below!

Suggested Reading:

• Learn How to Pace Yourself
• Develop Better Coping Skills
• Living With Fibromyalgia & Chronic Fatigue Syndrome

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When doctors and researchers routinely scratch their heads over aspects of fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS), what hope do we have of improving our lives?

That's not a rhetorical question. What's the answer? Our best hope lies in EACH OTHER -- the more we share our experiences, the more we learn about our illnesses and how to live better with them.

You have 3 new opportunities to help other people and to learn from them as well, through the Readers Respond opportunities now attached to these articles:

• Coping With FMS & ME/CFS
• Developing Better Coping Skills
• Exercising With FMS & ME/CFS
• Work Accommodations That Help

Read the articles, then click on the link at the bottom to share your experiences and read comments left by other people.

Here are more Readers Respond articles that include some great tips:

• Fibromyalgia & Clothing Pain
• Little Things That Can Help
• Types of Fibromyalgia Pain

I've learned a lot from these responses, and I hope you will as well!

One of several viruses believed responsible for at least some cases of chronic fatigue syndrome (CFS or ME/CFS) is the Epstein-Barr virus, which can cause infectious mononucleosis (mono, or the "kissing disease") during adolescence or early adulthood. A new study shows shores up evidence that it's somehow involved, especially in juvenile cases.

Researchers looked at 301 kids between 12 and 18 who hadn't recovered from mono after 6 months. They examined them, then checked back with them at 12 and 24 months post-infection.

Some of the kids fit ME/CFS diagnostic criteria, but in shrinking numbers up to the 24-month mark. At that point, 13 of them still fit criteria. All of them were girls, and they'd reported more fatigue at the 12-month check-in.

Now that this link is established, researchers say more research needs to look at other post-mono risk factors.

I had mono quite severely in high school, and when I heard about chronic fatigue syndrome a couple of years later, my first thought was, "I've got that." I'm actually not diagnosed with ME/CFS, but I do fit the criteria and I've often wondered if I have a mild case. Studies like this make me think it's likely. I know my immune system changed after that 10-month illness, which ended when I had my tonsils out -- the doctor told me that without tonsils I'd be more immune to throat-related illnesses, like strep. I'd actually never had strep at that point, but afterward got it regularly for years. I've had constant throat problems for the past decade or so, as well.

Do you believe your ME/CFS was triggered by mono, or the Epstein-Barr virus? Have any anti-viral/immune system treatments helped you? Share your story so we can all learn from it -- leave a comment below!

Suggested Reading:

• What Causes Chronic Fatigue Syndrome?
• Who Gets Chronic Fatigue Syndrome?
• Acceptance -- How It Can Help

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It's pretty well accepted that some people with chronic spinal pain eventually develop fibromyalgia, possibly because spinal pain can lead to central sensitization and changes to the brain over time. Now, some researchers are looking into which back-pain patients go on to develop chronic widespread pain (CWP).

At a pain clinic, researchers followed up with people who were diagnosed with chronic neck or low-back pain (but didn't have CWP) 5 years before. In that 5-year period, 23% of them had developed CWP. Those people were asked to come in for a tender-point exam. Only about a quarter of them did, but of those people, 76% fit fibromyalgia diagnostic criteria.

Researchers say certain criteria appeared to predict those whose spinal pain would progress to CWP or fibromyalgia:

• Initial pain intensity
• Gender (female)
• History of abuse
• Number of pain management strategies used
• Widespread pain in family members
• Other central sensitization disorders, including:
  • Irritable bowel syndrome
  • Irritable bladder (interstitial cystitis)
  • Migraine
  • Restless legs syndrome

This isn't a surprise to me. I've had chronic back and neck pain since an accident when I was 10, and the only risk factor they found that doesn't apply to me is a history of abuse.

The most important part of this, to me, isn't that it explains why I have fibromyalgia -- it predicts what could cause my children to end up with it. They've got one huge risk factor just from having me as a mom. If I start to see other risk factors crop up in their lives (such as spinal pain), I can make sure it's treated aggressively. There's no guarantee, but hopefully that can keep their pain from becoming chronic, which can keep pain signals from making changes to their central nervous systems.

I already suspect that my son inherited my myofascial pain syndrome, since a "minor" neck injury has left behind a painful trigger point. He's reluctant to try acupuncture (he's only 7), so we're using cupping therapy, massage, topical pain creams, anti-inflammatories, and a special pillow that supports his neck well. Of course I worry about it, but I try to keep a positive outlook, reminding myself that he's getting the treatments nobody knew I needed. I just have to have faith that it'll help.

Does this set of risk factors fit your situation? Have you seen similar issues in your children? Are you taking steps to mitigate their risk? Is it discouraging to you to see abuse brought up in yet another study? Leave your comments below!

Suggested Reading:

• What Causes Fibromyalgia?
• Who Gets Fibromyalgia?
• Learning Acceptance: How it Can Help with Treatment

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Mitochondrial dysfunction is getting more and more attention as an underlying mechanism of chronic fatigue syndrome. Dr. Sarah Myhill, a UK doctor who was an early proponent of this theory and has a treatment protocol based on it, has just published a paper on mitochondrial dysfunction that even points to a possible diagnostic test.

What are Mitochondria?

Mitochondria are specialized parts of cells that, among other things, convert nutrients into energy. That energy enables your cells to carry out their many jobs in your body -- or, if you have mitochondrial dysfunction, that energy isn't produced, thereby preventing your cells from doing their jobs properly.

Proposed Diagnostic Test

The test discussed in this paper is the "ATP profile." It's a blood test that looks at several levels, including ATP (adenosine triphosphate), which is the body's primary form of energy, and ADP (adenosine diphosphate), which mitochondria use to make ATP. Myhill's paper says the results were clear -- the more severe the dysfunction, the more severe the symptoms. It also says the test can differentiate between people who are fatigued because of stress/psychological factors and those who have cellular dysfunction.

That all sounds pretty exciting, but this isn't a test you can rush out and take right now (not that you probably do much rushing!) This research is in the early stages and needs to be confirmed, re-confirmed, and re-re-confirmed before it'll be accepted by the medical community. Best-case scenario, it'll be years before this test is widely available. However, that doesn't mean we can't use the information to our benefit right now.

Treating Mitochondrial Dysfunction

Dr. Myhill's recommendations for treating mitochondrial dysfunction is a set of supplements, many of which are familiar to most of us:

• CoQ10
• L-Carnitine
• D-Ribose
• Magnesium
• Niacinamide (Vitamin B3)

Some of the dosages she recommends are outside of the normal range, so please talk to your doctor and pharmacist and know any risks associated with high dosages before you start this (or any other) treatment regimen.

Other doctors recommend vitamin B2 (riboflavin) for correcting mitochondrial problems, and physical therapy for improving range of motion and dexterity.

Have you taken these supplements? Did they help? Have you undergone specific treatment for mitochondrial dysfunction? Share your experience by leaving a comment below!

Suggested Reading:

• What You Need to Know About Supplements
• A Simple Explanation of Chronic Fatigue Syndrome
• Chronic Fatigue vs. Chronic Fatigue Syndrome

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I used to love fireworks. Growing up, the popping, sizzling sounds were a herald of summer and a reminder of picnics, pools and fun in the sun.

Now, I hate the darned things. In spite of a county-wide ban on them, they're all over my neighborhood starting around this time every year. They're not only noisy, they startle me and get my adrenaline pumping. For a "normal" person that might not be a problem. For those of us with fibromyalgia and chronic fatigue syndrome, it's a harbinger of pain, fatigue, malaise, bad moods, etc. Then you've got crowds of people, crazy traffic, heat . . . I'm worn ragged just thinking about it.

My Plan

I want to go back to enjoying the 4th of July instead of dreading it, and this year I've got a few tricks up my sleeve. I'm planning to up my daily dose of rhodiola rosea for a few days and to add DHEA -- both supplements help with stress (check with your doctor and pharmacist before taking them, though!) If I start feeling nervous on top of that, I'll sip some iced tea to get the theanine. If the neighbors are getting crazy with fire crackers (like usual), I'll put in ear plugs and listen to some soothing music.

As for dealing with crowds and heavy traffic, I'm fortunate to have access to a parking lot and nice, grassy lawn just a few blocks from the big downtown display. The view is great, I don't have to walk very far, and my husband will be there to do the driving. If not for that spot, I'd find a hill overlooking the area and watch from up there instead. If it's all too much for you to deal with but you still want to see the fireworks show, check with your local TV stations -- they may air it live or stream it on their website.

Have you found things that help you get through the 4th without being frazzled? Is a single fire cracker enough to send you into a crash? Leave a comment below so we can all learn from each other!

Suggested Reading:

• Anxiety & Depression: Barriers to Treatment
• Develop Better Coping Skills
• Little Things That Can Help

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In a recent poll, I asked what pain meds work for you. The results are interesting, to say the least!

I asked the question in response to a survey that said many of us with fibromyalgia are taking drugs that whose effectiveness is "not supported by evidence."

According to research and online resources for doctors, tricyclic antidepressants are best supported by evidence, followed by SSRIs and SNRIs, with muscle relaxers, NSAIDs (anti-inflammatories) and narcotics (Vicodin, Percocet) shown to be less effective or ineffective.

My poll, however, seems to flip that right on its head! While it's not scientific, the results were pretty much the opposite of what research has shown. As of now, the results are:

• Narcotics - 32%
• Muscle relaxers - 20%
• NSAIDs - 14%
• SSRI/SNRIs - 11%
• Tricyclics - 8%

This reinforces my belief that studies about what works for us are skewed, both by the lack of properly identified subgroups and because those of us with other conditions are excluded. Why would that matter?

The biggest reason, I believe, is the source of pain. Fibromyalgia pain doesn't come from a single source -- it includes amplification of pain that's there from other sources, along with special types of pain that appear to be caused by the condition itself.

Many of us have secondary fibromyalgia -- fibromyalgia that developed because of other pain conditions, which (according to research) have sensitized our nervous systems and caused structural and chemical changes in our brain. We're the ones who started out with rheumatoid arthritis, lupus, or (like me) chronic myofascial pain. Because we have another pain condition, we don't qualify for studies.

For me, and I suspect for many other secondaries, narcotics, NSAIDs and muscle relaxers take away the pain from the primary condition, giving fibromyalgia less to amplify. That results in a major pain reduction that people with primary fibromyalgia may not experience.

I also think researchers need to be identifying subgroups, as many chronic fatigue syndrome researchers are doing. We've got primary, secondary, juvenile, post-traumatic, and post-viral fibromyalgia that all could respond differently to the same treatments. Our symptoms and severities are all over the map, so once you get into genomics, there's no telling how many subgroups we could have.

The moral of this story is: don't let anyone, doctor or not, tell you what pain medications will or won't work for you -- the only true indicator of effectiveness is your own experience.

This is always a contentious topic, so keep those comments coming and let me know what you think!

Suggested Reading:

• 7 Types of Fibromyalgia Pain
• Fibromyalgia Drug Treatments
• Supplements for Managing Symptoms

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I wanted to call your attention to something new I'm working on: drug profiles. I published several supplement profiles awhile back and you responded so strongly to them that I started publishing drug-related information in the same format. I'm just getting started, so expect to see a lot more down the road (for both drugs and supplements).

Drug profiles I've published so far are:

• Ampligen for Chronic Fatigue Syndrome
• Low-Dose Naltrexone (LDN) for Fibromyalgia & Chronic Fatigue Syndrome
• Lyrica for Fibromyalgia
• Savella for Fibromyalgia
• Sodium Oxybate (Xyrem) for Fibromyalgia

In these, you'll find information on how these drugs work, what research shows about them, typical dosages, side effects and more.

Let me know what drugs or supplements you'd like to see profiled and I'll move them to the top of the list!

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BREAKING NEWS: A federal advisory panel has recommended that the FDA ban Vicodin and Percocet -- two painkillers used widely by people with fibromyalgia and a multitude of other chronic pain conditions -- as well as several other similar drugs. The FDA doesn't have to follow the panel's advice, but it usually does.

This time, it's not the narcotic (opiate) aspects of the drugs they're worried about -- it's the acetaminophen, the same drug that's in Tylenol.

As I wrote about recently, acetaminophen overdose is extremely common and is a major cause of liver toxicity, mainly because people think it's a safe medication to take. In the case of Vicodin and Percocet, people who take them for chronic pain very often build up a tolerance and need higher and higher doses for the same effect.

In addition to the ban on combination drugs, the panel recommended that the FDA reduce the highest-allowed OTC acetaminophen dosage from 500 mg down to 325 mg. It also recommends lowering the maximum daily dosage to less than 4,000 mg.

An alternative to a ban would be a "black box warning" on all acetaminophen-containing prescription products. Let's hope the FDA opts for this instead.

The FDA is also considering limits and or/bans of certain narcotic painkillers because of problems related to overdose, including:

• Fentanyl
• Hydromorphone
• Methadone
• Morphine
• Oxycodone
• Oxymorphone

I hope the people making these decisions realize that if they take the most effective painkillers away from those of us with chronic pain, they'll actually be encouraging us to take a whole lot of acetaminophen.

I have to say, I'm scared. I don't like taking Vicodin, but when I'm in severe pain it's the only thing that helps me function. One time, before my diagnosis, I'd been feeling pretty good and didn't bother to refill my prescription. A massive flare hit over the weekend, and by Monday I was out. I called my doctor only to find he was out of town for a week and no one else could approve a refill. The fear, panic and desperation I felt when I realized I had no way to combat the pain that wracked my entire body was overwhelming. The FDA could force millions of us to face that every day of our lives.

I hate to deliver news that causes fear or anxiety -- I know how bad that is for us -- so I'm sorry to have to bring this to you. All I can say is, cross your fingers and fill your prescriptions.

High-profile celebrity deaths, such as Michael Jackson's and Heath Ledger's, put prescription drug overdose in the spotlight. But when you're trying to manage a chronic illness like fibromyalgia and chronic fatigue syndrome, you need to be aware of all the possible consequences of the medications you take.

1. It's possible to overdose on any drug. Did you know that acetaminophen, the drug in Tylenol, is one of the most common drugs involved in overdoses? It can cause liver toxicity, as can over-the-counter (OTC) anti-inflamatories like Advil (ibuprofen) and Aleve (naproxen). UPDATE: FDA panel recommends lowering maximum dosage of acetaminophen.
2. Be aware of all the active ingredients in your meds. For example, many prescription opiates contain acetaminophen in addition to hydrocodone or oxycodone. That means it can be dangerous to take Vicodin or Percocet and Tylenol together.
3. High doses of serotonin-affecting drugs (antidepressants) can lead to a fatal complication. It's called serotonin syndrome, and anyone on SSRI/SNRIs or tricyclic antidepressants needs to be familiar with the symptoms.
4. Prolonged use of a drug can cause tolerance. If you find yourself needing higher doses for a drug to be effective, talk to your doctor about alternatives rather than putting yourself at risk for an overdose.
5. Beware of drug classes. It's dangerous to combine drugs that are in the same class, and you should read labels and do your homework on every drug you take. For example, did you know that some OTC sleep meds are antihistamines? Combining them with your allergy medications could lead to overdose.
6. Be familiar with possible interactions. Some drugs can be dangerous when they're taken together. Make sure you check for negative interactions between the things you're taking.

The above information applies to nutritional supplements as well -- when it comes to safety measures, you should consider everything you take a drug.

So where do you find all that information?

• Your doctor
• Your pharmacist (who probably knows a lot more about your drugs than your doctor)
• Drug packaging information & inserts (don't throw them out, and keep them someplace handy)
• Websites such as About.com's Drugs A-Z, drugs.com, and rxlist.com

Have you ever overdosed or had negative drug interactions? Have you found a good way to safely manage your medications? Let us all know about it by leaving a comment below!

Suggested Reading:

• 5 OTC Medications to Keep On Hand
• Yoga for Managing Symptoms
• How Your Diet Can Help

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