It's the rare person with fibromyalgia or chronic fatigue syndrome who hasn't had to give up some activity. Whether it's something little (like an occasional hobby), or something major (like a career), we've all made those sacrifices.

I've had to give up some things because I simply can't do them anymore, and other things because of the toll they take on my health and functionality (and some for a combination of both reasons.) I've given up my TV news career, my gym workouts (a weight circuit plus 45 minutes on the treadmill? Are you joking?), occasional hiking trips, major home improvement projects, etc. Fortunately, I've been able to gain back long walks (on good days), gardening, a social life, and enough of my brain to write a few blogs and articles every week.

Some things, though, I still don't have back. While I hope they'll someday be part of my life again, there's no guarantee. I have to say, I really miss long days of shopping. I used to spend hours wandering through shops, being inspired by things I saw and just enjoying the whole experience. I also have to admit I really miss being able to eat whatever I wanted. I was recently diagnosed as gluten-intolerant (not Celiac, though), and I'm especially missing "convenience" foods -- have you ever noticed how much of what Americans eat comes breaded, on some form of bread, or wrapped in a tortilla? Earlier today I broke down and ate a single chocolate chip cookie, and now I have pain in my esophagus and intestines.

On the emotional side, I miss the feeling of freedom. I used to feel free to pursue whatever hobby, vocation, interest, etc. I wanted to pursue. Now, I have limits. I miss the benefits of the higher income I could have if I were healthy. Some opportunities are no longer available to me. I resent the limitations within which I have to live.

I try to keep in mind that a lot of people have had to give up much more than I have because of these illnesses, but at some moments I just have to get angry or frustrated about it. We all have to vent now and then to keep from exploding, right?

What activity do you miss most? Is it something you think you'll be able to "reclaim" eventually? What feelings, attitudes or assumptions about life do you miss most? Vent your feelings about it here, by leaving a comment below!

Suggested Reading:

• Self-Efficacy & Optimism for Better Coping + Readers Respond
• Exercising With Fibromyalgia & Chronic Fatigue Syndrome + Readers Respond
• Learn to Pace Yourself

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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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