By Misty Roberts
FM/CFS/ME patient for over 30 years

There are many spouses, friends, and family members of FM and/or CFS/ME patients who think the pain and suffering we endure is an attempt for their attention. Often times they don't realize that we suffer from a disease that is invisible; a disease that there is no cure for, and one that many in medical community are still unaware of. The pain is relentless, stealing our joy and replacing it with tears of sorrow, pain and frustration. On the outside we look like everyone else, but on the inside are the scars no one sees.

Yes, It's Real

Researchers have found evidence of distinct neurological abnormalities within the brain of CFS/ME patients. Other researchers have found elevated levels of spinal fluid substance P, a pain amplifier; along with lower levels of serotonin (a chemical messenger that transmits nerve signals between nerve cells), and low production of cortisol in FM patients. The American Medical Association (AMA), the World Health Organization (WHO), and the National Institutes of Health (NIH) are among those who have accepted FM and CFS/ME as legitimate physical conditions and as major causes of disability. This should prove without a shadow of a doubt that FM and CFS/ME are real, physical medical conditions, not a figment of our imaginations.

Background

FM and CFS/ME effect the person physically, emotionally, psychologically, spiritually and socially. The once energetic person is now replaced by a person dragging themselves through the day in agony. The once fun-loving person is now living in the depths of despair and depression. The person who once felt valued now feels as if life has passed them by. Even the most devout begin to question why they must endure such pain, fatigue and misery. But the worst part of all is the misunderstanding, mistrust, and general ambivalence towards our pain and suffering. Our lives as we knew them are over. We are no longer able to have fruitful careers, manage our homes, or even take care of our children properly. Now the simplest activities are fraught with pain and agony.

Currently

Before we became ill we were organized perfectionists who were incredibly productive. Everything in our lives had its place; it kills us that it's not that way now. People with FM and CFS/ME live their days moment to moment, not able to plan for tomorrow let alone next week. We never know when a sudden flare will send us into a world of pain and agony. Many times we can't even think of the words we need to finish a sentence, making us seem demented or deranged in the eyes of others.

When was the last time you were in agony, yet unable to find a comfortable position? Or when was the last time the medicine you took made you so sick you couldn't leave the bathroom? People who live day to day with a chronic illness such as FM or CFS/ME need your help and support in order to cope with their condition. We need to know you care about us, and that you support us emotionally and physically. Deep inside every person with FM and CFS/ME is someone screaming to be loved, helped, supported and understood. Your loved one with FM and/or CFS/ME needs you now more than ever. Please don't let them down!

Veterans Day is an American federal and state holiday that is celebrated on November 11th honoring all military veterans. If Veterans Day occurs on a Sunday then the following Monday is designated for holiday leave, and if it occurs Saturday then either Saturday or Friday may be so designated.

Veterans Day is also celebrated as Armistice Day or Remembrance Day in other parts of the world, falling on November 11, the anniversary of the signing of the Armistice that ended World War I. (Major hostilities of World War I were formally ended at the 11th hour of the 11th day of the 11th month of 1918 with the German signing of the Armistice.)

U.S. President Woodrow Wilson was the first President to proclaim Armistice Day for November 11, 1919. The United States Congress passed a concurrent resolution seven years later on June 4, 1926, requesting the President issue another proclamation to observe November 11 with appropriate ceremonies. An Act approved May 13, 1938, made the 11th of November in each year a legal holiday.

"a day to be dedicated to the cause of world peace and to be thereafter celebrated and known as 'Armistice Day'."

In 1953, Al King, a Kansas shoe store owner actively involved with the American War Dads during World War II, had the idea to celebrate all veterans. So he began his campaign to turn Armistice Day into "All" Veterans Day. King had promoted his notion so much that the Emporia Kansas Chamber of Commerce decided to get involved. With the help of then U.S. Rep. Ed Rees, also from Emporia, a bill for the holiday was pushed through Congress. President Dwight Eisenhower signed it into law on May 26, 1954. Congress amended this act on November 8, 1954, by replacing "Armistice" with Veterans and it has been known as Veterans Day ever since.

During the last few years, clinical, epidemiological, and pathological evidence has suggested that inherited alpha-1 antitrypsin [AAT] deficiency might play a role in the development of Fibromyalgia [FM], probably because of the loss of AAT anti-inflammatory efficacy. The objective of this study was to estimate the prevalence and number of FM patients, and their AAT phenotypic distribution worldwide.

Alpha-1 antitrypsin deficiency is an inherited genetic condition in which lack of the protein alpha-1 antitrypsin (AAT) may cause lung and liver damage. A deficiency of alpha-1 antitrypsin allows substances that break down proteins (called proteolytic enzymes or proteases) to damage tissues in the body. Many individuals with the condition, however, never develop any disease associated with it. Alpha-1 antitrypsin deficiency affects both males and females of all ethnic backgrounds.

Studies on AAT gene frequencies and FM prevalence were retrieved for ten countries worldwide:

• Canada
• United States of America [USA]
• Denmark
• Finland
• Germany

• Italy
• Netherlands
• Spain
• Sweden
• Pakistan

The severe deficiency Z allele was found in all these countries:

• Very high frequencies in Denmark and Sweden [23 and 27 per 1,000, respectively]
• High frequencies in Italy and Spain [16 and 17]
• Intermediate frequencies in Germany, the Netherlands, Canada, and the USA [10 to 14]
• Low frequency in Pakistan [nine per 1,000]

The calculated prevalence of AAT deficiency and the number of FM patients with AAT deficiency were:

• Canada: 1/10 and 25,408
• US: 1/11 and 478,681
• Denmark: 1/9 and 3,124
• Finland: 1/ 36 and 726
• Germany: 1/16 and 48,523

• Italy: 1/13 and 84,876
• Netherlands: 1/15 and 9,639
• Spain: 1/4 and 114,359
• Sweden: 1/11 and 9,065
• Pakistan: 1/25 and 85,965

These calculations predict that AAT deficiency would remain undetected in around nine percent of FM patients, with about eight percent of them carrying moderate deficiency phenotypes [MS, SS, and MZ], and less than one percent with severe deficiency phenotypes [SZ and ZZ].

Therefore, AAT phenotype characterization should be recommended in FM patients and the possible efficacy of AAT replacement therapy in severe deficiency FM patients should warrant further studies.

Is the cure worse than the disease? Johns Hopkins psychiatrist Dr. Karen L. Swartz discusses the risks and benefits of SSRI's.

Call it the pill paradox

Some 20 years ago, selective serotonin reuptake inhibitors (SSRI's) burst onto the scene, lauded for their ability to treat depression. Today, however, some studies have linked SSRI's to an increased incidence of suicidal thoughts and behavior, and the U.S. Food and Drug Administration (FDA) is in the midst of an extensive review of drug safety data. This has led to what's being called a "crisis of confidence" in antidepressants, with many people wondering whether antidepressants, especially SSRI's, are safe to take.

The controversy began with concern over the use of SSRI's in children and adolescents, with studies indicating an increased risk of suicide. For adults, the issue heated up recently, when researchers reported an increased risk of suicidal behavior during the first month of treatment with SSRI's The study presented data on nearly 160,000 people treated in Britain with one of four antidepressants, two of which were the SSRI's fluoxetine (Prozac®) and paroxetine (Paxil®). The other was the tricyclic antidepressant amitriptyline (Elavil®).

While the risk of suicidal behavior did not differ from drug to drug, the researchers found, it was elevated during the first month of antidepressant treatment and highest during the first nine days of treatment. It is important to note, however, that other studies have not found such a link. For instance, in another study in 2006 ¹, researchers analyzed drug safety data from that country's regulatory agency. They found no evidence that SSRI's increase the risk of suicide. And a Swedish study found no link between SSRI's and an increased risk of suicide in either children or adults over a nine-year period. Moreover in the United States the suicide rate has actually declined since a peak in the late 1980s - a drop that coincides with the introduction of SSRI's

FDA Warnings on SSRI's

Because of the importance of this issue, the FDA is moving ahead with a safety review of antidepressant medications in adults, with the results expected later this year. In the interim, the FDA issued a public health advisory in July 2006 directed at adults. According to the advisory, adults who are being treated with antidepressants should be watched closely for worsening of depression and for increased suicidal thoughts or behavior. The FDA added that this increased surveillance might be especially necessary when a person goes on antidepressant medications for the first time or when doses are changed.

Where does all this leave us? It is essential to remember that serious depression poses a significant risk to a person's life. The vast majority of people who commit suicide have major depressive disorder or bipolar disorder that is not being treated at all. Overall, SSRI's have a good safety profile, with fewer side effects than other antidepressants, which is why they are widely used. And beyond that, it is essential to remember that the real threat lies with the disease itself. If you are struggling with depression, get treatment. Untreated bipolar disorder and major depression kill people every year; their threat to your health is significant and should never be ignored or glossed over.

Alarcón GS, Bradley LA, Hadley MN, Sotolongo A, Alberts KR, Martin MY, Aaron LA, Weigent DA, Gammal T El, Mountz JM, Blaylock JE

Examine relation between Fibromyalgia (FM) and Chiari malformation. Compare clinical symptoms and cerebrospinal fluid (CSF) levels of substance P (SP) in persons with either FM only, Chiari only, or FM and Chiari.

METHOD:

We studied 64 subjects:

• 30 (29 Women, 1 Man) rheumatology clinic patients who met American College of Rheumatology (ACR) criteria for FM


• 12 (12 Women, 0 Men) community residents who met ACR criteria for FM but had not sought treatment (non patients)


• 16 (16 Women, 0 Men) healthy community controls


• 6 (5 Women, 1 Man) patients with Chiari only and significant bulbar/spinal cord compression requiring spinal surgery

An experienced neurosurgeon and neuroradiologist read all subjects' blinded and coded brain MRI(s) obtained for an ongoing pain study using standard criteria for presence of Chiari. Patients and non patients completed McGill RIA. Statistical analyses performed with chi-square and ANOVA.

RESULTS:

Readers reliably (kappa+.64) identified Chiari in:

• 6 (20%) FM patients
• 0 FM non patients
• 1 (8%) control
• all (100%) Chiari only patients

FM patients strongly tended to show Chiari malformation more frequently than FM non patients and controls (p=.07).

Chiari only patients showed significantly (p< .0001) higher mean (+ SE) CSF SP (58 + 22.0 female/male) than both FM patients (22.3 + 1.9) without Chiari and non patients (18.7 + 1.9) who, in turn, showed significantly higher mean CSF SP (p< .05) than healthy controls (13.3 + 1.4) without Chiari.

FM patients with and without Chiari did not differ in CSF SP (p+.91) or ratings of pain (p=.41) and fatigue (p=0.98).

One FM patient with Chiari who required surgery for worsening symptoms of compression did not differ from FM patients without Chiari in pain or fatigue ratings but showed CSF SP level (41 female/male) similar to those of Chiari only patients. The control subjects with Chiari showed normal CSF SP (3 female/male).

1. Chiari tends to be associated with FM among rheumatology clinic patients although it generally does not elevate levels of CSF SP, pain or fatigue;

2. All FM patients should be examined for signs of bulbar/spinal cord compression and those with evidence of compression should be referred for MRI;

3. A small number of the FM patients with Chiari may require and benefit from surgery.

A few years ago the Food and Drug Administration (FDA) pushed for the use of a standardized over the counter (OTC) medication label in order to help consumers better understand the drugs they were using (or at least purchasing over the counter).

However, the only way consumers can be helped is to READ the labels. Many of us buy a product without ever thinking,

"is this going to react with other medications I'm taking?"

Last month we published the article, Seven Very Dangerous Over-The-Counter Drugs, regarding the safety of some over OTC drugs. Two days after the newsletter was sent out I received a letter from my dear friend Barb who suffers with FM. This is what she wrote:

A Real-Life Example

"There is one OTC medication out there that I've used recently, like just five days ago, and felt like I almost was dying. The truth! It is called Zostrix HP. It's a lotion, like Ben-Gay, and comes in a tube. Only this is WICKED stuff! I bought a tube, for $20! I had some really bad right arm and shoulder pain one day, so picked this up, in fact, my pharmacist recommended it to me!"

"Now, here's the bad part. I used it without reading the directions. I used it as I would BenGay. I got home, took off my blouse and bra, and slathered it all up and down my arm, neck, shoulder, and surrounding areas. Ten to fifteen minutes later I received these lovely symptoms: Burning, (felt exactly like a bad sunburn!), a little swelling, red rash, INTENSE itching, very hot to the touch, and almost a feeling of numbness! All that in about 15 minutes."

"Well, that was just the beginning. I got dizzy, nauseated, SLEEPY as all hell, and felt as though my heart was beating slow. My breathing was even slow. I was SO tired! I didn't understand WHY I was getting all these weird symptoms just from a damned lotion! I mean, okay, my first thought was, 'I'm allergic to this stuff.' But, when the other symptoms, (tiredness, nausea, dizziness, and balance problems) appeared, I knew there was a slight problem. Then it DAWNED on me that I was getting a large amount of FENTANYL (pain patch...75 mcg.) dispersed in my system at a fast rate. Why? Heat."

"I remembered my pain doctor telling me, when using the pain patch be careful of HEAT. Stay out of the sun as much as possible, especially if the sun is beating down on you. Try to avoid warm rooms. Do NOT use heating pads for a long length of time, in fact avoid using them at all. Watch out for FEVER. If you're taking a hot shower, make it fast, do not take a hot bath, warm but not hot."

"I was feeling more and more nauseated and sleepy. I jumped up from bed, and was actually staggering as if I were drunk! I ran the shower, a very, very COOL one! I washed that damned stuff off my arms with soap ASAP! I sat down in the tub and let the COOL water shower all over me for a good long time. I then towel-dried myself. Still tired, I managed to suck down 2 cups of strong, COOL, instant coffee. I put two ice cubes in each cup. I got two ice packs out put them in a towel and laid it on my still rashly, red, burning inflamed arm! I ate some crackers with COLD water. (for nausea) "

"I opened the screen bedroom windows. Luckily it was a COLD day. I was feeling so damned warm. Then I ate some Hershey chocolate bars, the large block size. Not the whole block but at least half!! (lol) And WHY I ate chocolate is beyond me, perhaps I thought if I'm dying, I'll die happy!"

Lessons Learned

Thankfully Barb is in the medical field and knew how to counteract the Zostrix. I'm sure there are many of us who wouldn't have known what to do, and we could have possibly ended up in a coma or worse. So in Barb's words:

"Perhaps you may want to 'use' my story some how to WARN anyone with FM, CMP, CFS/ME, etc., who are using FENTANYL pain patches about the dangers of using Zostrix!!! Now, because I didn't have the brains to READ the Zostrix label, I have suffered greatly! Who knows, maybe I COULD have gone comatose? Died? I don't know, but very sick? YES!!!!"

Conclusion

Please remember to ALWAYS read the labels! Our Drug Database consists of many of the medications used in the treatment of FM and CFS/ME. All medications come with warnings and drug interactions. If you're unsure about the medications you're taking be sure to look them up. Be aware and be safe!

In the United States, Thanksgiving or "Turkey Day" is an annual one-day legal holiday to express thanks for what one has. It is celebrated on the fourth Thursday in November. The period from Thanksgiving Day to New Year's Day is often collectively referred to as the "holiday season".

In 1621, after a hard and devastating first year in the New World the Pilgrims had beaten the odds. They had built homes in the wilderness, they had raised enough crops to keep them alive during the long coming winter, and they were at peace with their Indian neighbors. Their Governor, William Bradford, proclaimed a day of thanksgiving that was to be shared by all the colonists and the neighboring Native American Indians. The Thanksgiving feast consisted of corn, fruits, vegetables, along with fish which was packed in salt, and meat that was smoke cured over fires.

The custom of an annually celebrated thanksgiving, held after the harvest, continued through the years. During the American Revolution (late 1770's) a day of national thanksgiving was suggested by the Continental Congress. In 1817 New York State adopted Thanksgiving Day as an annual custom. By the middle of the 19th century many other states also celebrated a Thanksgiving Day. In 1863 President Abraham Lincoln appointed a national day of thanksgiving. Since then each president has issued a Thanksgiving Day proclamation, usually designating the fourth Thursday of each November as the holiday.

Weight loss, if necessary, and exercise. Stretching, flexibility, and muscle-strengthening exercises are particularly helpful in treating chronic back pain. A recent study provides insights on the most effective exercise regimens to relieve chronic back pain.

Doctors commonly prescribe exercise for lower back pain. Now a new study reported in the journal Pain¹ sheds light on which type provides the greatest pain relief, at least for the short term. The researchers randomly assigned 240 adults with low back pain for at least three months to one of three groups:

• general exercise
• motor control exercise
• spinal manipulative therapy

The general exercise group performed strengthening and stretching exercises as well as exercises to improve cardiovascular fitness.

The motor control-exercise group performed exercises aimed at improving the function of specific trunk muscles thought to be involved in movement of the spine. These included the diaphragm, the transversus abdominis, and the pelvic floor muscles.

People in the spinal manipulative therapy group were treated with joint mobilization or manipulation techniques applied to the spine or pelvis.

At eight weeks, people in the motor-control group and the spinal manipulative therapy group improved slightly more than those in the general-exercise group, with a better ability to function and a greater perception of benefit from treatment. However, at six and 12 months, there were no differences between any of the groups.

Conclusion: A variety of exercises can provide relief for chronic low back pain. Whichever you choose, you'll likely need to continue it for long-term pain relief.

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