“Just like dealing with fibromyalgia – crewing an extreme event like this is all about your attitude and working through adversity. We needed to be flexible and adapt to all of the challenges we faced – we worked so well as a team with our single goal of facilitating the safe finish in Durango. We certainly did our job!” (Deb Feather, AW4F crew member and fibromyalgia sufferer)

Congratulations to the All Wheels 4 Fibromyalgia team which set the record for the 2-person mixed under 50 in Race Across the West. RAW kicked off June 15 in Oceanside, California and finished on June 17 in Durango, Colorado. Their official time was 2 days, 2 hours and 4 minutes.

Our AW4F team and brother and sister riders Denise Stone and Karl Wianecki are absolutely amazing! They rode 900 miles with 50,000 feet of climbing in 2 days and 2 hours at an 18 mph pace. This means each cyclist had to ride 250 miles per day with essentially no sleep and only 10-15 min breaks throughout the whole race.

NFA president and founder, Lynne Matallana joined the team at the starting line in Oceanside. “Denise and Karl’s determination through all the difficulty and challenges they faced is shared by all the fibromyalgia patients,” said Matallana. “This is our team!”

“It was great having Lynne at the starting line. More than ever, her being there helped us to focus on our goal of raising awareness for fibromyalgia. We proudly mentioned this in all of our interviews!” added Feather.

“I am so thrilled to have reached this accomplishment with my brother Karl, and our fantastic crew including Ray, Brenda, Deb, Connie and mechanics Julian and Andrew! The crew was flawless – as in all of our past RAAM journeys ensuring optimal rider fuel, perfect navigation, executing fast efficient transitions between riders for all 900 miles, and no bike mechanical issues”. (Denise)

“The 2-person race was much more challenging compared to our 4-person Race Across America. So much more exhausting, and it was a struggle just to eat and stay hydrated. You just have to give everything you have and just keep pedaling.” (Karl)

“The conditions were absolutely treacherous this year – we dealt with extreme heat including 110 degrees through the desert, 40 mph cross-winds, and steep cliffs in Arizona and intensive climbing into Colorado that seemed to never end. All of this with literally no sleep for the full 50 hours.” (Denise)

“The scenery was amazing and really kept us going – my favorite was the sunrise over Monument Valley in Utah and the awesome red cliffs of Sedona. We especially want to thank the AW4F and NFA Facebook fans for sending us encouraging words and thoughts throughout the race! We felt their strength behind us – pushing us along!” (Karl)

By Dana Herrera

While the warmer times of year are often a welcome change to bone-chilling winters, extreme heat can take its toll. And sunny activities and beach retreats require some extra health considerations. Keep in mind these important tips to enjoy sunny days—and warm nights—even longer.

 

Sunny Sensitivities

Fibromyalgia symptoms are infamous for changing with the weather. Humidity, rainy days, and extreme weather changes can trigger aches and pains. Though a bit of sunshine every day is a great energy booster, too much of a good thing can leave patients feeling drained and more exhausted than ever. Additionally, people with FM can be more sensitive to medications that interact with the sun.

Marla Brumbaugh, a long-time fibromyalgia and chronic fatigue syndrome sufferer from Ohio, says spring and fall—when the weather does not go from one extreme to another—are her best seasons for symptom relief. During the summer, however, extreme heat just makes Brumbaugh plain miserable.

Though most people are uncomfortable in extreme heat, Brumbaugh’s reactions are intense. “I get frequent headaches when it’s hot and humid,” she says, “and I have a higher sensitivity to bright light, noise, and even smells, which makes it difficult for me to concentrate or remember anything.”

Her multiple chemical sensitivities make Brumbaugh anxious, which can lead to her feeling depressed. “I am a full-time fine artist, spending as much time as possible working and teaching in my downtown studio. Anxiety and creativity do not mix,” she says. “Some days when it’s really hot, it’s hard to get it together to make it up to the studio.”

Sharym Ocasio-Soto of Miami finds that some of her fibromyalgia and blood pressure medications interact with the sun. “The sun causes rashes and the heat causes fatigue,” she says. “Even … while driving, my arm will get sun and I develop a rash.”

Ocasio-Soto also feels achy when the weather turns humid. Luckily, her high-blood pressure forces her to stay hydrated, a key ingredient for fighting sun fatigue.

If you plan on spending time in the sun, be sure to check your medications for a sun interaction called photosensitivity. A wide variety of medicines can cause photosensitivity, which can make us more susceptible to sunburns, rashes, and hives. Included in this list are NSAIDS (ibuprofen, naproxen), antibiotics (tetracyclines), statins, and certain sunscreen ingredients like salicylates.

Prescription medications often come with a special photosensitivity warning. However, the safe bet is to ask your pharmacist to review all your medications—even over-the-counter meds and topicals—for possible photosensitivity reactions. If you suspect a photosensitive reaction after using a certain product or medication, see your doctor immediately. Your physician may recommend an alternative medication or treatment plan.

 

Beat the Heat

“Of course, the hotter it is, the cooler you want to stay, so I want to be in the air conditioning all the time or take showers often,” says Ocasio-Soto. “The coldness of both things makes the fibro wake up and flare by nighttime.” The transition from your air conditioned house or office to suffocating heat, or vice-versa, may trigger a fibro-flare.

Planning ahead may help to avoid these situations. For example, carry a light sweater to put on before entering air-conditioned buildings or lower your air-conditioning before you transition to the outdoors. “Stay hydrated and take things little by little,” Ocasio-Soto suggests. “If you are going to swim, [for instance,] try doing it in the afternoon. This way, the water is not cold and won’t trigger your fibro.”

Mathew Roberts, a chronic pain suffer of 25 years, recently moved from Portland to Arizona to help reduce his symptoms. “I’ve got to say, I much prefer the desert,” he says. “Something about the constant drizzle and the ever-fluctuating barometric pressure [of the northwest] really got me down.”

An avid cyclist, Roberts tends to stay indoors in the summer months. “I try to stay out of the extreme heat,” he says. “I tend to get outside time only during the wee hours of the morning.” His friends tease him about how cool he keeps his house, but Roberts doesn’t mind. “If I have to be outside in the heat, I like to put an ice cold wet bandana around my neck,” he adds. “I find that there are sensitive points in the neck that, when cooled, have the effect of cooling my entire body.”

 

The Pros and Cons of Sunshine

Several recent medical studies suggest that a bit of all-natural Vitamin D (as little as 15 minutes of sun per day) can reduce chronic pain and fatigue, while improving overall mood. And the quickest way to get that boost is to head out into the sun.

Unfortunately, this can be quite a task. The use of sunscreen, living in northern climates, an increased amount of time spent indoors, and even a lack of Vitamin D-rich foods may all contribute to not meeting the government recommended 200-600 IU per day. Fortunately, more and more physicians are testing for this deficiency and educating patients on supplements and lifestyle changes that help boost our Vitamin D levels.

Today, debates are raging over the effectiveness and even the safety of some sunscreens. Though there are currently no federal guidelines for sunscreen, organizations such as the Environmental Working Group (EWG), a research-based environmental consumer watchdog, have their own recommendations.

The EWG cautions consumers against sunscreens that advertise high levels of SPF protection. Currently, the effectiveness of over 50 SPF has not been proven and there is a concern that we are staying in the sun longer with the belief that higher levels of SPF equals longer and higher levels of skin protection. And a high SPF does not necessarily mean a sunscreen protects against both UVA and UVB rays. Additionally, the EWG reports that sunscreens that use retinol or retinyl paliminate (Vitamin A), may increase the rate of skin cancer cell production. And ingredients in many sunscreen products, including oxybenzone, are suspected of causing hormone disruptions.

Generally, the EWG recommends a broad-spectrum, water-resistant, mineral sunscreen and frequent reapplication. Additionally, they advocate following basic guidelines for sun exposure similar to those given by the CDC. Their full report and sunscreen guide can be found online at http://www.ewg.org.

The debate about sunscreen is ongoing. However, the EWG sunscreen ratings may point us to some fibro-friendly products. Many of their highly rated sunscreens are free of common sunscreen chemicals we may be more sensitive to. However, before using a new sunscreen product, test it first. Apply a bit to your inner wrist to see if your skin reacts.

Warmer weather offers many beneficial impacts for pain and mood. Even if you have an extreme sensitivity to heat, there are ways to make your time outdoors comfortable—and even enjoyable. So don that hat, grab that water bottle, apply that sunscreen, and enjoy the sunny side of the season.

 

Sunny Safety

Follow these simple guidelines from the Centers for Disease Control and Prevention (CDC) to stay healthy in the heat.

  • Drink lots of water. When the body heats up, you sweat to keep cool. If you don’t replace lost fluid, you can experience symptoms of dehydration, from extreme fatigue to headaches. Tip: Reusable water bottles that clip to your purse or bag are a great way to stay hydrated on the go.
  • Stay cool running errands. The hottest part of the day tends to be between 10 a.m. and 4 p.m. Try to avoid unprotected sun exposure during these hours. Instead, plan your outdoor errands early or later in the day.
  • Cover up—not just with sunblock, but with protective clothing and hats.Tip: Pick lightweight fabrics such as linens, cotton, or even hemp. Three-quarter sleeves and pants can provide a cooler alternative to full-length.
  • At the beach, clothing designed for surfers offers some UV protection and is often water friendly. Don’t forget the beach umbrella, swimsuit cover-ups, floppy beach hats, and water shoes. And a broad-spectrum water-resistant sunscreen is essential. Just be sure to reapply often.
  • Remember to protect your eyes! Sunglasses are a must. Break out those Jackie-O shades or ask your eye doctor about transition lenses.

Sunny Checklist

A bit of planning can make all the difference in managing your symptoms. Use this checklist to consider how to prepare for your warm-weather fun—and help prevent it from triggering a fibro-flare.

  • How long will I be outdoors?
  • Do I have sun protection?
  • Can I access shade, water, and additional sun protection if I stay longer than expected?
  • Have I taken any medications that make me more sensitive to the sun?
  • Will I be outdoors during changing temperatures and/or going from one temperature to another throughout the day?
  • If I will be indoors often, can my doctor recommend ways to increase my Vitamin D?

 

 

 

References

 

Drug-Inducted Photosensitivity. Alexandra Y Zhang, MD, Assistant Professor, Department of Dermatology, University of Pittsburgh. Coauthor(s): Craig A Elmets, MD, Director of Dermatology, Departments of Dermatology, Pathology, and Environmental Health Sciences; Professor, The Kirklin Clinic, University of Alabama at Birmingham. http://emedicine.medscape.com/article/1049648-overview. Accessed June 15, 2010. Updated January, 15, 2010.

 

Environmental Working Group Full Report: Sunscreen Guide 2010. http://www.ewg.org/2010sunscreen/full-report/. Accessed June 12, 2010.

 

Grant, W. (2009). In defense of the sun: An estimate of changes in mortality rates in the United States if mean serum 25-hydroxyvitamin D levels were raised to 45 ng/mL by solar ultraviolet-B irradiance. Dermato-Endocrinology. (1)4: 207-214.

 

Onoue S, Seto Y, Gandy G, Yamada S. Drug-induced phototoxicity; an early in vitro identification of phototoxic potential of new drug entities in drug discovery and development. Curr Drug Saf. May 2009;4(2):123-36.

 

This article, “Beat the Heat” by Dana Herrera, appears in Fibromyalgia AWARE magazine, Spring 2011, Vol. 22.  Reprinted with permission from the National Fibromyalgia Association:www.fmaware.org© FM Aware All rights reserved. No material may be reproduced or used without written approval of and proper credit given to Fibromyalgia AWARE

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