Traveling with Fibromyalgia: Tips to Make Your Vacation a Pleasure Instead of a Pain

by Karen Lee Richards, ChronicPainConnection Expert

Read Karen Lee Richards’s SharePosts

Traveling is supposed to be a pleasurable activity.  We all dream of relaxing on warm sandy beaches, curling up by a cozy fire in a mountain-top chalet, or touring historic locations.  Unfortunately, the harsh reality of traveling with fibromyalgia (FM) is that often, just getting to our destination is so stressful and exhausting, we spend most of our vacation in bed, trying to recover enough strength to make the trip home.

Take heart!  It does not have to be that way.  With a little pre-planning,=2 0you can actually enjoy traveling again.  Planning ahead reduces the stress caused by last minute rushing, essential items left behind, inadequate facilities and long lines.  Because stress frequently triggers a flare of fibromyalgia symptoms, planning ahead can be the key to making your trip an enjoyable experience.

Itinerary       

Evaluate where you are going and what you will be doing.  Do not set unrealistic expectations for yourself.  Choose a destination that you will be physically comfortable with.  If you are highly sensitive to cold weather, do not plan a trip to Alaska in the middle of winter.  If you have difficulty climbing stairs, do not plan a walking tour of historic homes that feature high porches and multiple floors. 

Be realistic about how much activity you can handle each day.  It is natural to want to see and do all you can with the few vacation days you have available, but if you try to do too much, you will not enjoy any of it.  Schedule rest periods into your itinerary that allow you to take a nap.  If it is not possible to return to your hotel at regular intervals, at least allow yourself time to sit down in a quaint cafe and leisurely sip your favorite beverage while your body rests and revives.  Make your first day a short one.  Avoid scheduling any sightseeing the day you arrive.  Traveling is tiring at best, so just plan to settle in, rest and maybe go out for a nice dinner.

If possible, plan at least one day of rest after you return home before going back to work or resuming other activities.  Although vacations are enjoyable, they can also be tiring. 

Hotels  

While most large hotel/motel chains have 800 numbers, it is worth the extra few cents to call the hotel directly to make your reservation.  This gives you the opportunity to ask specific questions about the actual facility in which you’ll be staying.  Ask for a room that is on the main floor or near the elevator to minimize the distance you have to drag yourself and your luggage.  Be sure to specify the accommodations you need (for example, wheelchair accessible, shower grab bars, smoking/non-smoking). 

If you find hotel beds uncomfortable, after you20check in do not hesitate to ask for additional pillows.  Or go to a nearby discount store and buy a foam “egg crate” mattress pad.  The added comfort is worth the few dollars it costs, and because it is so inexpensive, you can leave it behind when you go home.

Airlines  

If you are traveling by air, call the airline and tell them you are disabled.  Request a bulkhead aisle seat (first seat in coach).  This is the easiest seat to get in and out of and has the most leg room.   Allow yourself extra layover time when changing planes so that, even if the flight is running a little late, you will be able to make your connecting flight without rushing.  Ask the airline what arrangements you need to make to minimize walking in the airports.  Even if you do not normally use a wheelchair, request that one be waiting for you at curbside and at the gate of each stop on your trip.  Save your energy for sightseeing and other fun activities.  Get your ticket and boarding pass ahead of time to minimize the number of times you have to wait in line.

Use luggage with wheels, check m ost of your bags and only carry on what you absolutely have to have during your flight.  Lugging heavy bags through airports will leave you exhausted before you ever arrive at your destination.  However, be sure to keep all of your medications in their original prescription bottles with you.  In the event your luggage is lost, you will still have the medicine you need.

Roadtrip   

If you are traveling by car, plan to stop for a few minutes every hour or two.  Get out of the car, stretch and walk around a little.  Staying in any one position too long will cause you to become stiff, increasing your pain.   Plan your seating strategy.  If there is room in the car, make a bed in the backseat so you can lie down when necessary.  Try out a variety of sitting positions and note how many pillows you will need to take to keep you as comfortable as possible.

• Leave a comment... (0)

from Dr. Mark J. Pellegrino’s highly praised book, Fibromyalgia: Up Close and Personal.

Fibromyalgia Is a Distinct Medical
Entity, and Appropriately So

We have long recognized, however, that many conditions overlap it, and various conditions exist that can lead to secondary Fibromyalgia. Dr. Muhammad Yunus, MD, [a professor and FM specialist at the University of Illinois College of Medicine] has developed the concept of Dysregulation Spectrum Syndrome (DSS) to describe how conditions overlap.

Dr. Yunus describes DSS as representing various associated conditions that share similar clinical characteristics and pathologic mechanisms with Fibromyalgia. Ten conditions are in the DSS umbrella: Fibromyalgia, Chronic Fatigue Syndrome, Irritable Bowel Syndrome, tension headaches, migraine headaches, primary dysmenorrhea, periodic limb movement disorder, restless leg syndrome, temporomandibular pain syndrome, and myofascial pain syndrome. He predicts other entities will be added to this list in the future.

According to Dr. Yunus, Conditions in DSS
Share a Number of Characteristics:

1. Patients with different conditions sharing similar profiles.

2. Common shared symptoms, such as pain, poor sleep, fatigue, and female predominance.

3. Hypersensitivity to pain.

4. No “diagnostic” pathology that can be measured.

5. Shared psychological complaints such as depression and anxiety.

6. Shared common genetic factor likely.

7. Common neurohormonal dysfunctions.

8. Treatments directed at the central nervous system leading to improvement.

9. TMJ [temporomandibular joint] dysfunction.

I have discussed the Fibromyalgia spectrum with my patients to help them understand the various subsets possible. I do not see Fibromyalgia as a member of a bigger family, but as the main condition. It is the “founding father” and keeps its name. If Fibromyalgia is the founding father, then the various overlapping conditions and subsets become the children. The name Fibromyalgia remains, but different subsets have unique characteristics and together they become the Fibromyalgia spectrum.

This diagram shows the concept of the Fibromyalgia spectrum. The Fibromyalgia entity partially overlaps with the normal entity on one side and the disease entity on the other side. Within the Fibromyalgia entity are 8 subsets. The first subset is in the most “normal” portion of Fibromyalgia, and the 8th subset is in the most “diseased” portion of Fibromyalgia. Each number represents a distinct subset with distinct characteristics.

www.Amazon.com

• Leave a comment... (2)

“Sit and Be Fit: Fibromyalgia Workout”
Mary Ann Wilson, R.N.; $18.95 (2005)

–Reviewed by Monica Towers

Fun and effective, this specially-designed workout from the popular Sit and Be Fit™ series on PBS offers a sound physical fitness option for FM patients requiring a low-impact approach to exercise.

The 27-minute routine includes exercises for both upper and lower body, with an emphasis on improving range of motion and employing proper posture and breathing technique. While the routine is not intended as a cardiovascular workout, the succession of exercises is entirely capable of stimulating blood flow and heart rate.

Host Mary Ann Wilson, RN, uses a lightweight, 10-inch ball during the routine, but such a ball is not necessary to perform the exercises, as is demonstrated by the physical therapist who joins Wilson during the program to demonstrate modifications of each activity for viewers with different levels of function. Wilson adds another element of variety, and possible progression, to the workout by showing how to execute several of the exercises from a standing position.

Wilson is a knowledgeable host and her positive demeanor is inspiring; overall, the upbeat tone of the entire production makes this workout seem more like a treat than an “exercise routine.”

—————————

This article was originally published in FMOnline. This free online newsletter is only available to registered members.  http://www.fmaware.org

• Leave a comment... (0)

Fibro-Friendly Cooking

Have you considered that the foods you eat may be adding to your pain, exhaustion, and other symptoms associated with fibromyalgia (FM)? One of the most popular questions asked by FM patients involves nutrition and the search for fibro-friendly foods. The July issue of the Fibromyalgia Network Journal features four articles on this subject that include expert advice from a clinical nutritionist and first-hand accounts from Network Members who are experiencing less pain and symptoms by eliminating specific foods from their daily diet. It would be marvelous if we could offer you a list of foods to eat and foods to avoid right now, but it is not that simple. Since your reactions to medications, physical activity, and weather changes, among other things, vary greatly from one FM patient to another, the same holds true to your reactions involving what you eat. While no research has fully identified a nutritional therapy for FM, case studies of patients with chronic fatigue syndrome who made changes to their diet noted marked improvements.1 In addition, dramatic improvements were reported by FM patients who eliminated monosodium glutamate (MSG) and aspartame (found in Equal or NutraSweet) from their diet.2 Research also has revealed that vegetarian diets can help reduce FM symptoms.3,4 However, the most thorough way to find out what foods your body poorly tolerates is by participating in a food elimination and challenge diet. This diet is explained in detail in the July Journal. As a supplement to receiving the July issue, we want to offer you a couple of simple and delicious recipes from The Fibromyalgia Cookbook by Shelly Ann Smith. This cookbook offers food strategies along with 120 recipes for patients with FM. Smith, who is the mother of four children, was a pharmacy technician before coming down with FM. “I was well aware of the many drugs available, the pain suppressants, and the myriad of pharmaceuticals,” Smith says in her book. “However, my curiosity led me to delve into the natural side of things. “I discovered the old saying, ‛You are what you eat’ is poignantly relevant to people suffering with fibromyalgia. Their very fabric and fiber are so sensitive and under continual test that any food substances put into their bodies can have intense effects.” Smith encourages pure foods, no additives, the least amount of toxins, and the most nutrition. The book includes not only soups, salads, and veggie recipes, but also chicken, fibro-fish, rice, pasta, breads, and fruit dishes. Smith’s tips include diets low in salt, low in fat, and without sugar. “But don’t worry, sugar lovers, because there are natural sweet foods we can enjoy.” The following recipes are reprinted here with permission from the publisher: (And the meal is yummy and I highly recommend trying it! Jonnie) Chicken and Sweet Pepper Saute 2 teaspoons extra virgin olive oil 4 boneless, skinless chicken breasts 1 red bell pepper, seeded and cut into 1-inch pieces 1 yellow bell pepper, seeded and cut into 1-inch pieces 1 medium zucchini, sliced fresh ground pepper 1/4 cup low sodium chicken broth 4 teaspoons balsamic vinegar In a large skillet heat 1½ teaspoons olive oil over medium heat. Add the chicken and cook until tender and browned on both sides. Remove to a platter. To the skillet, add the remaining ½ teaspoon olive oil, peppers, zucchini, and ground pepper, and saute until tender, stirring frequently. Add the chicken broth and balsamic vinegar, and bring to a boil. Pour the sauce over the chicken. (Makes 4 servings) Fibromyalgia Network Founder Kristin Thorson suggests fresh garlic or onion instead of vinegar. Include thyme or your favorite spices, and alter for taste or known allergies. Broiled Tarragon Flounder 1/4 cup extra virgin olive oil 1 tablespoon lemon juice 1 teaspoon chopped fresh tarragon fresh ground pepper 4 flounder fillets In a small bowl mix the oil, lemon juice, tarragon, and ground pepper. Place the fish fillets in a broiling pan and broil, basting generously with oil mixture, for 8 minutes or until the fish flakes with fork. (Makes 4 servings) For a completely different taste, substitute basil for the tarragon. The Fibromyalgia Cookbook is available on Amazon.com for $14.95 from Cumberland House Publishing. An introduction by Alison Bested, M.D., of Ontario, Canada explains the nature of fibromyalgia and the role of diet.

• Leave a comment... (0)

Summer Weather Adding to Your FM Pain?

The weather is warm and the skies are mostly sunny, so why are you feeling so lousy? It may be the storms or constant changes in summer weather patterns that are causing your increased symptoms. Daniel Wallace, M.D., who treats FM patients in the Los Angeles area, noted from his clinical experience that changes in the barometric pressure are more important than whether it is hot, cold, wet, or dry. A study done in Cordoba, Argentina followed patients with various rheumatic diseases that may co-exist with FM (rheumatoid arthritis, RA, and osteoarthritis, OA) as well as a healthy control group. All patients were asked to record their pain on a daily basis over a 12-month period. Researchers followed the temperature, humidity, and atmospheric pressure during this time. Patients with FM reported more pain when experiencing cold temperatures and high atmospheric/barometric pressure. High barometric pressure occurs when the skies are clear and low pressure occurs when storms move in. It is hypothesized that increases in barometric pressure could lead to increased production of pro-inflammatory cytokines, which correlate with the pain intensity experienced by FM patients. Another study done in Norway, noted that patients who have lived with FM less than 10 years were more weather sensitive than patients who had the illness more than 20 years. But while patients seem to report more flares in January, watch out for the summer storms because they cause dramatic fluctuations in barometric pressure. The summer and fall seasons are usually full of weather changes that may zap your energy and intensify your pain. If you live in the hot Southwestern United States, try to stay out of cold, air conditioning drafts. Dress in lightweight but layered clothing so that you do not swelter in the outdoor heat or shiver in the grocery store and other chilly environments. If you live near a coastline, get extra rest and take care of yourself during the summer storms. Your ability to tolerate the heat might also depend on your gender. In general, women prefer warmer climates more so than men because of differences in the way their sympathetic nervous system operates. When subjected to hot environments, this system constricts the peripheral blood flow more in women than in men. The result is a cooler skin temperature for women. Although the sympathetic nervous system is a major player in the body’s stress responses, this difference between men and women cannot be explained by psychological stress. Charles Vierck, Ph.D., and colleagues at the University of Florida, tested the temperature preferences of male and female rats to bypass any psychological factors that may influence temperature sensitivities.* In fact, more than one strain or type of rat was tested, but the results were still the same. Female rats were much more cold-sensitive and preferred warmer temperatures, while male rats showed the opposite preference. These results mimic what has been shown in people and could imply that men might prefer cool wraps to soothe their achy muscles. Fibromyalgia Network … Helping Patients Since 1988 PO Box 31750 | Tucson, AZ 85751-1750 | (800) 853-2929 | www.fmnetnews.com

• Leave a comment... (1)

Fibromyalgia Chat

Welcome to the Fibromyalgia Chat & Message Boards. You can use this site for: Posting messages to other visitors who may have Fibromyalgia. Ask questions to be answered by Fibromyalgia chat peers. Inform others of your experiences with Fibromyalgia. Tell others what treatments have worked for you. Read the latest Fibromyalgia treatment information and news.

Fibromyalgia
Chat Rooms

http://www.fibromyalgiachat.com/

Fibromyalgia
Message Boards

Fibromyalgia
Alternative Treatments

http://www.fibromyalgiachat.com/index.cfm

• Leave a comment... (2)

Fibromyalgia Tenderpoints Index

How Can You Tell if You Have Fibromyalgia?
Your doctor will ask about your pain symptoms and then press on a series of anatomically-defined soft tissue body sites called “tender points.” There are 18 tender points on the body that will usually be highly sensitive to pressure in people with fibromyalgia as specified by the American College of Rheumatology criteria. People who do not have fibromyalgia are much less tender to pressure applied at these tender points.

What is Fibromyalgia?
Fibromyalgia is a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas of the neck, spine, shoulders, and hips called “tender points.” According to William Hennen, Ph.D., author of Fibromyalgia: A Nutritional Approach, fibromyalgia has been classified as a syndrome, not a disease. He explains that a disease is a condition with a clearly identifiable cause, while a syndrome is a set of symptoms that define the condition without a single causative agent upon which to place the blame.

What are the Symptoms of Fibromyalgia?
While the symptoms associated with Fibromyalgia fluctuate from person to person, there is one common symptom that all agree on - they ache all over. The pain can feel like a deep bone ache, pains and needles, or a stabbing or burning pain. Muscles may feel like they have been pulled or overworked. There are times this pain is mild, others when it is so severe that it becomes unbearable.

Along with pain, many Fibromyalgia sufferers report headaches, poor sleep, fatigue, depression, and irregular bowel habits. Many others simply describe their symptoms as “flu-like.”

• Leave a comment... (0)

You won’t want to miss the new articles on Fibromyalgia posted in the left side column under “Fibro Findings.”

*PORTABLE NON-DRUG DEVICE FOR PAIN

* IMPROVING BLOOD FLOW TO PAIN PROCESSING BRAIN CENTERS

*MILD MENTAL CHALLENGES LEAD TO WORSE FIBROMYALGIA SYMPTOMS 

*BEWARE OF INTERNET SCAMS

*DIAGNOSING FMS SAVES MONEY

All articles are the property of Fibromyalgia Network www.fmnetnews.com 

• Leave a comment... (0)

From: Fibromyalgia Network

http://www.fmnetnews.com

Posted: February 26, 2008

Kim Jones, Ph.D., F.N.P., and the team at Oregon Health & Sciences University in Portland, have shown that growth hormone secretion from the brain’s hypothalamus-pituitary system is substantially low in one-third of fibromyalgia patients. Growth hormone is needed in the body for repairing muscle tissues, and inadequate amounts of this hormone could lead to tiny tears in the muscles that eventually generate pain. In fact, a trial to use growth hormone to treat fibromyalgia showed benefit, but this injectable medicine is rarely prescribed because it is costly and not covered by insurance.

The Oregon team tried two relatively inexpensive methods to boost growth hormone production in 165 patients with fibromyalgia during a six-month period.* One method was for patients to take pyridostigmine (PYD), a drug that is used to increase acetylcholine but it also enhances growth hormone secretion. The patients in the PYD group took 60 mg of this medication three times a day (after a dosing up period). The other method was for patients to join a group-exercise program designed for fibromyalgia, because in healthy people exercise is touted as beneficially increasing growth hormone secretion. People in the exercise group met for one hour three times a week.

As it turned out, neither PYD or exercise increased growth hormone secretion in the fibromyalgia patients during the six-month trial. However, PYD was found to significantly improve the patient’s rating of sleep and anxiety.

The authors said they were intrigued by the improvements in sleep and speculate that the PYD may be working to improve the activity in the parasympathetic branch of the autonomic nervous system. The parasympathetic branch is the body’s “rest and digest” control system. It transmits signals mostly through the use of acetylcholine, which is increased by PYD. Many studies have linked reduced parasympathetic activity to sleep disturbances, so taking PYD could be a novel way to improve your sleep.

Only two of the 106 patients assigned to take PYD dropped out of the study because of drug side effects, so in general, PYD is fairly well tolerated. The side effects of PYD include abdominal pain, diarrhea (helpful if you are constipated), and muscle cramping or twitching. PYD is a prescription medication that has been around a long time, is inexpensive, and available as a generic

• Leave a comment... (0)

New Educational DVD on Fibromyalgia - Watch It Online, Pass the Word

by Marly Silverman
ImmuneSupport.com

02-04-2008The Following Announcement was Issued February 2 to “Friends and Family” by Marly Silverman, founder of Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy (P.A.N.D.O.R.A.) The Information Network Television (INT), a state of the art educational film production company with offices in Boca Raton, Florida, has released their Healthy Body, Healthy Mind video segment on Fibromyalgia (FM).n The video depicts the personal stories of several FM patients throughout the country, including P.A.N.D.O.R.A.’s founder Marly Silverman and South Florida rheumatologist Dr. Steven Croft.n Also interviewed were Dr. Don Goldenberg and Dr. Daniel Claw, and patients Andy Wold, Judy Stern, Lynne Matallana (President of the National Fibromyalgia Association) and Judith Becerra.

The educational segment was produced by Phyllis Kramer, and she captured quite well the challenges that individuals with Fibromyalgia experience daily. The video is of excellent quality and it uses special graphics and colors to explain how Fibromyalgia affects the body.

We congratulate its producer Phyllis Kramer and her crew as well as INT’s Healthy Body, Healthy Mind producers for the quality invested in the series. The descriptions of the patients’ lives are quite empowering and uplifting while providing a very serious and compelling description of what is to suffer with Fibromyalgia.

We also take this opportunity to thank the major sponsors of the video: Pfizer and King Pharmaceuticals, with additional funding by Abbott, Inspire Pharmaceuticals, and Genzyme.

P.A.N.D.O.R.A. recommends the purchase of this video by any FM patient who would like to share it with family members, friends and family and your family physicians.

Cut and paste these address into browser. Be sure to use the complete  2-lined address:

http://www.itvisus.com/programs/hbhm/

episode_903_UnderstandingFibromyalgia.asp

For the list of public television stations that will broadcast the “Understanding Fibromyalgia” segment in your state or geographical area, use this link [then click on TV Schedule and individual show listings]:

 http://www.itvisus.com/programs/hbhm/schedule_

show.asp?e=Understanding+Fibromyalgia

I also encourage you to provide a viewer’s response and or write to them thanking them for this educational film. Please go to:

http://www.itvisus.com/programs/hbhm/viewer_comments.asp

• Leave a comment... (0)