Highlights from the Fibromyalgia Network Newsletters

beginning with October 1992

Information from the October 1992 Fibromyalgia Network Newsletter

Tips

Adjust your attitude: You must accept that you have physical limitations that other people can't readily see. Learn to say NO without feeling guilty.

Scheduling and Prioritizing: Plan a day ahead of time, if possible. Don't plan something the day you wake up because you know how tired you feel when you first wake up.

Eliminate: Think before you file. Do you absolutely need to save that sheet of paper? No? Toss it! No need to cling to old habits.

Organize: Some sense of organization is better than none at all.

Systemize: Systems speed up processes and keep life simple. Organize a little at a time until it's to your satisfaction. Delegate chores if you can.

Handling the holidays: Order gifts by mail; start addressing your holiday cards in November; pay your neighborhood teenagers to clean your house during the holidays; dinner at your house? ...turn it into a pot luck dinner; have a "take down the decorations" party.


Trigger Point Injections

Based on David Zohn's FMS patient load of 30%, Dr. Zohn felt that trigger point injections and myotherapy -- when done properly -- could offer patients significant relief from their symptoms.

According to the 1990 criteria for FMS, a person is diagnosed with fibromyalgia based on the presence of tender points, not trigger points.

"Whether a person has myofacial pain superimposed on their FMS, I can't answer that," claimed Zohn. "But they do have what I believe to be trigger points, and when I inject them, they get relief."


Oh, The Hassle....

The exercise endurance of patients with FMS is very low.

Daily hassle scores are high for FMS patients, leading to increased anxiety and stress, and perhaps, further worsening their symptoms.


Growth Hormone?

Dr. Robert M. Bennett envisions that FMS patients have an inherited or acquired defect in their muscle membranes, rendering them susceptible to muscle micro- trauma or MMT (muscle tearing at the cellular level). Ironically, GH (growth hormone) is needed for mending the damages caused by MMT, yet it is primarily secreted during deep level sleep. While improving your sleep may reduce your pain, it is likely that GH supplement might also minimize your discomfort.


From the Fibromyalgia Network Newsletter, January 1993.

"What we hear from our patients is that 'when I'm fatigued, everything is too great an effort.' Ordinary tasks loom as overwhelming. Feelings of helplessness and hopelessness dominate at times like this. Patients also tell us 'I'm not able to take an interest in anything and I don't have the energy to do it.' 'I am not in control; I don't know when the fatigue is going to hit."


Self-Help Measures

It's okay to take a nap. If your batteries are running low, seize the opportunity to rest and don't feel guilty about it! If you discover that sleeping mid-day interferes with your ability to fall asleep at night, just sit back comfortably for half an hour (a good relaxation tape may come in handy).

Prioritize tasks and pace yourself. Activities tend to divert your attention away from feeling tired -- which is good in small doses -- but you don't want to end up utterly exhausted.

Search for short-cuts in the self-care and grooming departments.

Take a stress management class. Although stress does not cause FMS, reducing your stress level can conserve energy.

Involve your significant other and family members in your treatment. If you have children, you will need to explain the concept of fatigue to them...

Learn how to clearly ask for what you need...

Use back supports, arm rests and neck supports...

Stretch your muscles and give your body a cardiovascular workout...but avoid overexertion.

Keep your chin up! A positive attitude will make you feel better in spite of your fatigue...


FMS is equally as disabling as rheumatoid arthritis.


In The First Place....

Some comorbidities -- irritable bowel syndrome, recurrent headaches and cold intolerance -- often preceded the onset of FMS. On the other hand, memory loss and paresthesia (numbness and tingling, especially in the hands and feet) were more closely associated with concurrent FMS development.

A detailed breakdown of the symptoms occurring before and after the onset of FMS is given below. All numbers represent percentages and the symptom frequency occurring before the onset of body-wide FMS appears first.

Sleep disturbance 26/50
Irritable bowel 34/30
Irritable bladder 12/24
Poor memory 6/56
Poor concentration 10/50
Impaired reasoning 2/22
PMS symptoms 32/18
Headaches 56/22
Severe fatigue 20/64
Negative work impact 10/46
Depressed moods 38/38
Dry eyes 14/26
Dry mouth 8/32
(24% had first-degree relatives with FMS)


From the Fibromyalgia Network Newsletter, April 1993

Interesting To Note

Unless something else has gone amiss, patients with FMS usually have a normal CBS (complete blood count).

While you might feel that some of your FMS pain is in or around your joints, you may not have any evidence of arthritis when the joints are x-rayed. Arthritis in your knee or wrist won't cause the body-wide pain of FMS, although if it is left untreated, it can aggravate fibromyalgia symptoms.

Researchers have uncovered over 75 tender points in the body -- some of them in the hands and feet -- but they are not used for diagnosis. But why not? The criteria for FMS was developed so that it could discriminate between an FMS patient, and say, someone who has arthritis. Because arthritis commonly occurs in the hands and feet, having tender points in these regions are of little diagnostic value -- even though they DO hurt.

For reasons unknown, rather odd feelings in the hands and feet may develop in FMS patients.

Five years ago, Norwegian researcher Henning Vaeroy, M.D., reported that FMS patients had three times the amount of substance P in their cerebral spinal fluid. No one knows why substance P is so elevated in FMS patients, but it is possible that its over-production could somehow involve the trigeminal nerve.

A Dr. Yunus was able to show that FMS does run in families from research he did.

An electronic grip force instrument, called the Grippit, was used to measure the grip strength in 14 FMS patients, 19 rheumatoid arthritis (RA) patients and 18 healthy controls. On an average, the hand strength of RA patients was 18% of the values obtained for healthy controls. FMS patients scored, on an average, only 34% of the values for the control group.

Cognitive behavioral modification therapy and relaxation training may help you cope better with your symptoms, but do they really make a significant impact on your pain, your poor sleep, and the many other symptoms that you struggle with each day? One study on low back pain patients revealed that these interventions have a favorable influence, but it is relatively small.


From the Fibromyalgia Network Newsletter, July 1993

Why should FMS be taken seriously?

According to Dr. Yunus (UIC of Medicine at Peoria, IL), the two most important reasons are: (1) it's very common (more than 3% of women in the general population) and, (2) FMS causes significant disability, comparable to that of rheumatoid arthritis. But FMS is not just a pain tenderness condition. This syndrome encompasses other symptoms, such as sleep disturbance, numbness and tingling sensations, chronic headaches, irritable bowel syndrome, urinary urgency, chronic fatigue, primary dysmenorrhea (painful menstruation), and the list goes on.

Medical Neurobiology of CFS and FMS: Now, what about those patients who met the FMS diagnosis? As a subgroup, their cerebral blood flow on the right side was more impaired than CFS patients who did not meet the tender point criteria. Although this finding was obtained on a small sample of people, it did reach statistical significance! But how and why the symptom of pain might be correlated with a further reduction in blood flow is not known.

Depression: So, to answer the question -- why isn't it all just depression? -- is simple. This is because a majority of patients didn't have depression in the years before they became ill.

Post-Exertional Malaise: There are also increased difficulties in concentration, the appearance of sore throats and swollen or tender lymph glands, which typically occur 24-48 hours after exercising.

Immunology: In addition, low natural killer cell activity seems to be a finding shared by both CFS and FMS syndromes as well.


From the Fibromyalgia Network Newsletter, October 1993

A Full-Spectrum Treatment Program:

1. You need to be the center of the treatment program and learn how to manage it.

2. The principal team member, at least in the early stages, needs to be a primary care physician who is skillful with medications, reasonably familiar with chronic health conditions, and has some appreciation for the pain and fatigue components of CFS and FMS.

3. Educate yourself! Attend support group meetings, read literature handouts, and talk to other patients.

4. Social isolation tends to be a major problem with CFS and FMS...Develop or renew a support system...get involved...pace your activities...take breaks...be patient.

5. A "talking" relationship with a professional is helpful. Consider a counselor, social worker, psychologist or psychiatrist (who do not have a narrow view of your health problem).

6. Try acupuncture.

7. Try a Physical Therapist familiar with "manual techniques" (myofascial release).

8. Develop strategies for assisting you in managing your sleep disorder. Some people are helped by Elavil, Flexeril, Xanax, Klonopin, or Sinequan.

9. Get help in learning stress reduction (relaxation techniques).

10. Make substantial changes in your work life.

11. Others may be able to help, i.e., massage therapist, chiropractor, nutritionist, or gynecologist.

Some Practical Pointers:

1. Make sure your primary health care provider can accept other providers of your choice in your care!

2. Avoid relationships with practitioners and physicians who cause you to doubt yourself.

3. Insist on copies of evaluations, reports, correspondences or notes, and share these with your other providers.

4. Be reasonable in your demands.

5. You are a consumer and purchaser of health care. Feel free to give "performance reviews" to any of your health care practitioners. If things don't work out, fire them and hire someone else more suited to your needs!

6. Clearly understand the training, qualifications, charges, philosophy of treatment of your health care practitioner...

7. Be cautious of costly "evaluations" or "procedures."

8. Find out what others think of a practitioner.

9. No one practitioner has "the answer" or "the cure" or "the right way."

10. Help your practitioner help you.


From Medical Neurobiology of CFS and FMS Conference Review, Part II:

Dr. Yunus said, "For the first time, we documented that patients have a swollen feeling in the muscles and joints, numbness and tingling sensations, irritable bowel, and headaches...we showed that fibromyalgia is actually a syndrome!" (And, when referring to this disorder, one should always remember to put the "S" following the "FM" as in FMS.)

"My hypothesis is that these symptoms, such as the swollen feeling and the numbness/tingling sensations, are somehow linked to the pain itself. There is a correlation between the sites of pain and the sites of these symptoms. I believe that they are all centrally modulated and not determined by psychological status."

A tender point diagram may prove helpful in locating 18 test sites on the body, but how much pressure should one apply? According to Dr. Yunus, if you press with your thumb until you notice a blanching of your fingernail, then you have applied roughly 4 kilograms of pressure -- the amount specified by the criteria. This is "Yunis' Rule of Thumb" and he claims that it works fairly well in a majority of cases!

Neurotransmitter Abnormalities: Pain and other symptoms of FMS are transmitted through the central nervous system by the use of many chemicals, called neurotransmitters. Substance P is known to play a role in pain transmission (among other things), while serotonin, norepinephrine, dopamine, and other chemical transmitters work in an inhibitory fashion to reduce or modulate the effects of pain signals coming from the central nervous system. If the scales are tilted so that there is too much substance P and not enough of the inhibitory neurotransmitters present in FMS, a pain amplification state might exist. But how does this theory match up with the findings?

FMS patients have a three fold increase in substance P in their spinal fluid....

The availability of tryptophan in the brain is significantly reduced in FMS.

The primary system that Dr. Goldstein suspects to be dysfunctional in patients is the limbic system. "It seems to me that the "computer" or limbic system isn't working right in CFS and FMS patients."

Exercise Stress Test

The limbic system plays an important role in regulating the body's stress response, and under normal circumstances, one would expect to cause the following (from doing an exercise bicycle stress test):

None of the above predictions occurred in the CFS/FMS patient population! In fact, both temperature and cerebral blood flow decreased with exercise -- the opposite of what one would expect. ... Although these findings are preliminary, they seem to indicate that the limbic system might not be working properly.

Paxil

First came Prozac (fluoxetine), followed by Zoloft (sertaline), and more recently, Paxil (paroxetine) was made available for use for FMS.

Paxil is the most potent SSRI (Selective Serotonin Reuptake Inhibitor), and it may also produce a stronger analgesic or pain fighting effect.

The low-down on Paxil sounds good, but all studies have been conducted on depressed individuals, not FMS/CFS patients. People with these two diagnoses are typically drug hypersensitive and may respond differently.


The pain of FMS is hard to describe. Simply telling someone that you hurt all over may not help them relate to how you are feeling. Fortunately, a team from Finland has reported that the pain intensity experienced by individuals with FMS is twice that of rheumatoid arthritis!


From the Fibromyalgia Network Newsletter, January 1994

Pain Management:

Not everyone who takes a pain medication becomes a drug addict. According to Neil Ellison, M.D., an oncologist in Danville, PA: "Addiction occurs only in one out of 10,000 patients, and this concerns is not a good enough reason to NOT treat the other 9,999 patients!"

Most states require physicians to write what is called a triplicate prescription for narcotic/opioid pain medications with the express purpose of limiting a patient's access to these drugs. Fear of losing one's license to practice medicine is a valid concern among doctors who routinely prescribe pain killers.


The Consequences of Pain:

Arthur Lipman, Pharm. D., professor of clinical pharmacology at the University of Utah, started his speech with a quote from J.C. iebesking: "Freedom of pain should be a basic human right." ... "Pain causes dramatic autonomic changes, especially because of its impact on the sympathetic nervous system." Neurohormonal problems as well as impaired immune response may result from the persistence of a person's pain.

Persistent pain can cause patients to feel out of control, hopeless, withdrawn from decision making processes, isolated, depressed, hostile and angry. By implementing good pain control measures, Dr. Lipman claimed that the quality of a person's life is much improved and they are more likely to participate in activities of daily living.

Dr. Lipman ended his presentation with a thought-provoking quote: "Pain is soul destroying. No patient should have to endure intense pain unnecessarily. The quality of mercy is essential to the practice of medicine: here, of all places, it should not be strained."

(Note: he was talking about chronic malignant pain disorders.)

Pain interferes with your life, with your family and with anything you want to do.

Perhaps the real crux of the problem here is that only 15% of medical students are now getting an education on pain management...a statistic that used to be next to nil in years past!

"There is no maximum dose of opioids. You must use the dose that works."

Dr. Levy recommended that patients push to get more pain management drug trials conducted on the fibromyalgia syndrome.

FMS researcher and UCLA professor Stuart L. Silverman, M.D., commented at the American College of Rheumatology meeting that the pain of FMS is probably much more severe than many physicians realize. Physicians often underestimate how severe the pain can be, said Dr. Silverman. "However," he said, "the pain of MS is not the kind of pain that usually responds to a narcotic. My patients who take narcotics are still in pain."

Asked whether he would prescribe a narcotic (such as Tylenol #3 or Vicodin) to an FMS patient, he said he might consider doing so under the following situations:

FMS patients may develop a very painful disk or another regional problem. ... While Dr. Silverman doesn't endorse using narcotics on a day-to-day basis for the generalized pain of FMS, he does acknowledge that these drugs are sometimes necessary for severe regional pain. ... "We should not treat FMS patients as second class citizens!"


Diet:

CFS and FMS are chronic illnesses that, over time, could potentially cause a slow decline in your body's nutritional status. Research studies are needed to investigate possible nutritive deficiencies in CFS/FMS patients, but recent evidence implies that magnesium stores might be low. Taking a daily multi-vitamin and supplementing your diet with magnesium could be helpful. Other nutrients that Dr. Lapp suggested were zinc, potassium, vitamin B6 and vitamin B12. (Be careful, though, if you've become hypersensitive.)


This and That

Dr. Lapp commonly prescribes medications to help with sleep, fatigue and headaches:


A virus may or may not be responsible for CFS/FMS, but most patients will claim that the flu-bug throws them into a bad flare-up. ... kutapressin might help some patients. Magnesium and anti-oxidants such as vitamin C may help charge up your body's natural anti-viral defense mechanisms and are relatively easy to try.


Cerebral blood flow abnormalities, determined by SPECT scan imaging, have been commonly described in research pertaining to CFS-diagnosed patients. Due to the close similarity between CFS and FMS, patients have been left to wonder: Do the same or similar abnormalities hold true for FMS-diagnosed patients? Well, based on three separate projects, the answer appears to be "YES."

A marked reduction in blood flow was found in the right hemisphere, especially in patients who exhibited the widespread pain of FMS.

Studies on another pain-prone syndrome, sympathetic reflex dystrophy, have produced similar findings. Interestingly enough, FMS patients with higher pain scores had more significant abnormalities on the SPECT scan (a greater reduction in cerebral blood flow).


The neuromuscular symptoms of FMS, such as pain, weakness, spasm, and numbness sensations, could possibly be due to low levels of Mg in the muscle tissues (magnesium).


The Fibromyalgia Network Newsletter, April 1994

The Highs and Lows of FMS

Most everything appears to be low in FMS, except substance P, a neurotransmitter involved in pain regulation, which is extraordinarily high. Too much substance P, along with inadequate levels of serotonin, is thought to contribute to FMS pain.


Alcohol consumption, even in modest amounts, contributes to symptom flare-ups among FMS patients.


When FMS patients develop osteoarthritis (a phenomenon that commonly occurs with aging), would this lead to a magnification of symptoms? This may help explain anecdotal reports that FMS symptoms tend to get worse with age, particularly after age 45.


Studies documented the high prevalence of gastrointestinal problems in FMS patients. Dr. Clauw commented that this low threshold to pain was similar to that found in the tender/trigger point areas in the same patients, which supports the hypothesis of a generalized, body-wide pain modulation disorder.


But just how bad is the fatigue in FMS? Stuart Silverman, M.D., of Los Angeles, presented a poster in which he summed this symptom most aptly: "The fatigue of a 45 year old woman with FMS is approximately twice the fatigue of a 67 year old patient with rheumatoid arthritis. The significantly increased fatigue in patients with FMS could lead to a diagnosis of chronic fatigue syndrome if the patient is not examined for tender points."


While the type of season may not play a role in how you feel, rapid fluctuations in weather may still make you feel lousy.


FMS does exist in children. However, younger people may be more likely to cycle in and out of remissions, while as people age, their symptoms may slowly get worse.


Applying for Social Security Disability/Handling Insurance Claims

The complexities of disability proof based on FMS, requires, in my estimation, an attorney who has experience, interest and knowledge of FMS. Attorneys who do not know what FMS is, or how to present FMS claims may prove to be less effective than attorneys who are familiar with the disease and who possess a "road map" of how to present the claim before the Office of Hearing and Appeals. (Joshua Potter, Esq. Attorney at Law)

Statistics show that your odds of getting SSD jump from 25% to 50% if you retain an attorney and you are filing a claim because you have FMS.

... I would urge anyone with FMS who is approaching the disability process to obtain an attorney well before the hearing. I would suggest that they contact and retain an attorney when initially denied by the Social Security Administration (in other words, right after your application has been turned down by the SSA and now you have 60 days to submit an appeal). This will allow an attorney ample time to assist with a request for reconsideration and provide valuable advice on medical development.

Handling Insurance Claims:

(a) Ask for copies of your medical records, including lab test results and physical therapy notes/findings. You may need them later if your insurance claim is denied.

(b) Make sure that your diagnosis and reason for your office visit are documented in the comments section of your health care provider's form.


Ambien

New Sleep Medication: Ambien (Zolpidem Tartate) is a recently approved sleeping pill that is not in the benzodiazepine category of drugs -- meaning that it may be less habit forming.

Dr. Pascualy limited his recommendation on the use of this sleeping pill to 2-3 doses per week for FMS/CFS patients.

Perhaps Ambien may be useful for getting you through those terrible flare-up periods when your mind keeps going all night long and your standard sleep therapies just aren't working.


From the Fibromyalgia Network Newsletter, July 1994

When to see your doctor

People with FMS/CFS have no automatic immunity or magic shield to protect them from developing other conditions that require special medical attention. Examples of these other disorders might include: degenerative disc disease, bursitis, arthritis, and nerve entrapment (especially at the Carpal tunnel in the wrist where the space is narrow). All of these conditions can hurt you...you don't want to ignore them--and their proper treatments--just because you think it is the FMS flaring up.


Saying NO without regrets

You may feel like a puppet on a string, being tugged and pulled from all directions. FMS/CFS patients have the hardest time with setting limits and saying NO to others. Don't allow anyone to cause feelings of regret or guilt for your change of heart if you decide to say NO to a previous commitment. You need to take care of yourself, and only you know what's best for you.


Conditions That Co-exist With FMS/CFS:

Osteoporosis in patients with FMS:

Patients with FMS/CFS may be at an increased risk of developing or having osteoporosis--a common rheumatic condition in which bones become porous and lose their strength.

The susceptible sites classically include the spinal vertebrae in the thoracic (upper mid-back) and the lumbosacral (waist/low back) regions, andpain in these areas can be confused with pain seen in FMS tender points. Fractures of the vertebral bodies typically occur in the middle of the spine and may be related to even minor activities including bending, lifting, or rising from a sitting or lying position.

Diagnosis: The measurement of low skeletal bone mass and density has now become easier because of dual x-ray absorptiometry (DEXA). DEXA allows the physician to detect decreased bone density even prior to bone fracture. This permits preventive treatment in patients with FMS and osteoporosis. DEXA testing is preferred over CT scanning because of lower radiation exposure and the ability to measure hip as well as spine bone density.

Prevention and Treatment: Estrogen can improve circulation and protect against cardiovascular disease. Optimal vitamin D status is equally important because it aids calcium absorption in the bones. It is also easy to achieve by spending time outdoors. Post-menopausal women should consult their physician about implementing an estrogen replacement program and increasing their calcium intake to 1500 mg/day.


Auto-Immune diseases:

Rheumatoid arthritis (RA), lupus and Sjogren's syndrome (SS) are auto-immune disorders that can cause pain and fatigue -- in addition to many other symptoms. Auto-immunity in simple terms means that the body's defense mechanisms have gone astray and the immune system has begun attacking its own cells and tissues. These auto-immune disorders may co-exist in 20-30% of FMS patients but lab tests and x-rays can usually detect their presence.


Hormonal Disorders:

Hypothyroidism can produce severe fatigue, weight gain, itchy skin, constipation, muscle pain, and cold sensitivity. Many patients diagnosed with FMS/CFS may be thinking, "That sounds just like me!" However, a thyroid function test can be ordered by your doctor to determine if you have an under- active thyroid in addition to FMS/CFS. Hypoglycemia can produce bouts of profound fatigue and corresponding headaches, especially after eating meals high in carbohydrates (sugars and starches).


Topical creams for pain

AURUM (non-prescription/behind-the-counter lotion which contains Methyl Salicylate [a nonsteroidal anti-inflammatory] to fight pain and Camphor to provide soothing warmth to the area).

Salonpas pads has similar ingredients and may also be tried. But beware of skin sensitivities to the adhesive.

ELMA cream contains a mixture of lidocaine and prilocaine, and it is sold without a prescription. (This cream has been effective as a topical local anesthetic used to eliminate pain of injections.)

PAIN-FREE is an aloe vera gel with capsaicin, a known substance P depleter. Capsaicin is derived from red peppers, and when PAIN-FREE is rubbed into the skin it produces a hot, burning sensation. (They said it was best to apply this product 3-4 times a day and be patient because it might take 2-4 weeks for a response.)

(PAIN-FREE can be ordered from: To Your Health in Fountain Hills, Arizona, by calling them at 1-800-801-1406. The price is $12.95 for a 4-ounce tube (larger quantity discounts are available).

Zosterix (made by GenDerm) makes a over-the-counter cream also containing capsaicin and has been effective for easing arthritis pain.


"Filing for Social Security Disability."

If the government can allege that the individual has the residual functional capacity to meet the demands of employment, then you will be turned down. Residual functional capacity is the ability to sit, stand, lift, carry and walk. It also includes the non-exertional capacity of reasoning, comprehending instructions, and acting appropriately with co-workers and supervisors. An individual with full blown FMS will have significant limitations in both exertional and non-exertional categories. However, whether or not there is a medically determinable impairment depends on who asks and who replies.

Tips on Filing for SSD:

Common Stumbling Blocks:

Advice from Patients:

Web page design by Bill Jackson, 1996.

Any comments? Send them to Bill Jackson at cfsdays@yahoo.com

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