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Multiple symptoms..and life.. Multiple symptoms..and life..

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Unread 04-17-2003, 12:49 AM
Multiple symptoms..and life..

Hello Sisters!!

it's been a LONG time since I have perused the site, i should do this more often.

I had a TVH in Jan 2002 for endo and cysts, leaving just my ovaries for my hormones.. not sure if that was entirely good or no, but they are there.

Anyways, since my surgery, which btw I have healed wonderfully well from, I have discovered other disorders that I had ignored, one, not been fully aware of secondly and finally been misdiagnosed as well.

I have recently been diagnosed with CFS/FM and Panic Disorder, as well suspected possible pre MS conditions ( if there is a pre condition ) . My GP and the Nuerologist are being overly cautious in 'officially' diagnosing MS since I have no lesions or masses on my brain. I have had one MRI so far.

Before I changed physicians my other GP had been telling me I was suffering from Mono for over 5 years, relapsing by doing too much and causing my system to 'short out'. I was testing positive for Mono, which the last time I went to him, feeling totally crappy, I tesed negative and he basically told me he couldn't help me anymore.

Anyways, I'm having a rough time in life. I had hoped my surgery for Endo would be the end of many painful periods and uncomfort, only to find they were masking several other issues all at once!

If anyone else is out there with the same issues just post a note .. you're not alone!!!
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Unread 04-17-2003, 07:20 AM
Multiple symptoms..and life..

Hi Nyxie

I know EXACTLY how you feel!! I do not have the problems you are having, in fact I only know what MS stands for and not the others (sorry), what exactly is CFS and FM? I had my TVH/BSO 2 years ago in June and did great until a few months ago.

I too thought it was all going to be over after my hyst, especially since he took EVERYTHING and now I have been slammed HARD with a whole new list (even some recurring old problems, endo) and I can not take any more diagnoses.

I developed everything after the 2003 under my signature in the past few months and the list keeps growing. For me the endo part is what frusterates me the most because I think it could have been prevented. But what do I know, really?

I am so sorry you are having all of these problems and just know we are all here for you!! This is a rough road, but we will get down it eventually.. I also have an anxiety/panic disorder and am on xanax for it. I get one at least once a day if not more. Especially on a bad day.

I left this site a while back as well, trying to get on with my life and not think about the past and I am never leaving again. Just to know these women are here for anything that you need to talk about is a very big peace of mind!! It is also nice to be able to try to help others through their problems as well.

Are you having any pelvic pain at all? I pray that you aren't, it sounds like you have enough to deal with. HAve you eveer had your thyroid checked? Just a thought, it can cause everything in your body to go haywire..

Here is a HUGE for you!!!

Unread 04-17-2003, 06:28 PM
Multiple symptoms..and life..

I was DX'd with FMS/CFS about 7 months after my Rheumy thinks the trauma of all my surgeries bought it on...I have researched this thoroghly so will share some of thr good info I have found:

Defining characteristics of fibromyalgia:

Fibromyalgia is a fairly common—although difficult to understand—syndrome. It is characterized by scattered musculoskeletal pain (involving the muscles and bone structure), tenderness in specific areas, generalized fatigue and a feeling of being tired after sleeping (1-6).Fibromyalgia is most common in relatively young, otherwise healthy-appearing individuals, and occurs much more often in women than in men. It is estimated that fibromyalgia affects up to six million people in the US (10). In fact, fibromyalgia is the third most common diagnosis made in rheumatology clinics, after rheumatoid arthritis and osteoarthritis (in Wolfe et al, 1983, 14.6% of patients were diagnosed with fibromyalgia).The condition is especially enigmatic and difficult to identify. Routine physical examination and diagnostic studies are seemingly unrevealing. Yet the frequency and consistency in which fibromyalgia is encountered in clinical practice has given a new interest to an old but elusive complex.The natural history of fibromyalgia has yet to be definitively described. While it is not degenerative or life threatening, it can be life altering. As demonstrated by the following research, it is apparent that fibromyalgia is a chronic condition, with potential for significant periods or remission.Fibromyalgia is a fairly common—although difficult to understand—syndrome. It is characterized by scattered musculoskeletal pain (involving the muscles and bone structure), tenderness in specific areas, generalized fatigue and a feeling of being tired after sleeping (1-6).Fibromyalgia is most common in relatively young, otherwise healthy-appearing individuals, and occurs much more often in women than in men. It is estimated that fibromyalgia affects up to six million people in the US (10). In fact, fibromyalgia is the third most common diagnosis made in rheumatology clinics, after rheumatoid arthritis and osteoarthritis (in Wolfe et al, 1983, 14.6% of patients were diagnosed with fibromyalgia).The condition is especially enigmatic and difficult to identify. Routine physical examination and diagnostic studies are seemingly unrevealing. Yet the frequency and consistency in which fibromyalgia is encountered in clinical practice has given a new interest to an old but elusive complex.The natural history of fibromyalgia has yet to be definitively described. While it is not degenerative or life threatening, it can be life altering. As demonstrated by the following research, it is apparent that fibromyalgia is a chronic condition, with potential for significant periods or remission.
One study found that the average time from onset to diagnosis was 5 to 8 years, showing that the condition is chronic (16).
A 3-year study of 39 fibromyalgia patients showed that the most common response from year to year was "no change" in their condition (20).
In another study of 81 fibromyalgia patients, it was found that the condition lasted for an average of nearly 13 years. Additionally, remissions of at least two months were reported in 23% and repeat remissions in 6%. The average remission was 34 months long, with a median of 12 months and a maximum of 20 years. (1) While many aspects of fibromyalgia are not yet clear, there has been a reasonable amount of progress in defining and understanding the syndrome. To help provide a better understanding of fibromyalgia, this article includes:
An overview of the Conceptual evolution:

Until recently, the lack of a unifying etiology (the study of the causes and origins of the condition), and the lack of an accepted terminology, has hindered the understanding and recognition of fibromyalgia. Over the years, fibromyalgia has undergone a "conceptual evolution".Descriptions of fibromyalgia can be found dating back to the early 1800’s. In 1904, pathologist Ralph Stockman first reported evidence of inflammatory changes in the fibrous, intra-muscular septa (a thin membrane that divides two soft masses of tissue) on biopsies from patients . Also in 1904, Sir William Gowers introduced the term "Fibrositis" to describe the inflammation of fibrous tissue in his description of low back pain. However, subsequent studies of muscle biopsies have failed to reproduce Stockman’s findings of inflammation, and the term "fibrositis" is therefore considered a misnomer.In subsequent years, the terms fibrositis, fibromyositis, psychogenic, psychosomatic, or muscular rheumatism have all been used as descriptors for this syndrome. Yet the term fibrositis has been most resilient and "eventually became synonymous with idiopathic local or diffuse musculoskeletal pain of any type" .In the 1970’s, the researcher Hench first introduced the term "fibromyalgia". He noted that "muscle as well as ligamentous and tendonous connective tissues are usually subjectively involved." Subsequently, in the 1980’s, another researcher, Yunus, furthered clarification of the syndrome by proposing the need for a unified classification system as well as the first diagnostic criteria .Finally, in 1990, the American College of Rheumatology established firm criteria for the classification and diagnosis of fibromyalgia

Recently, there have been a number of useful clinical studies to understand the profile of fibromyalgia patients. In a 1986 study that compared fibromyalgia patients with a control group, fibromyalgia patients were found to be in general better educated, wealthier, and more likely to be married. Additionally, they had greater use of the health care system, averaging 13 health care visits per year and 3 to 4 times the number of lifetime hospitalizations (13).The average fibromyalgia patient profile comprises:
Gender – 80% to 90% female
Average age – approximately 45 years old
Average time from onset to diagnosis – 5 to 8 years (9) The incidence of fibromyalgia patients has not been found to be different between ethnic groups (9). At least one study has suggested a possible autosomal (chromosome) dominant inheritance pattern to fibromyalgia (18).Fibromyalgia and children:
Fibromyalgia may occur at any age, even in childhood, and the principal symptoms are the same. In fact, one study found that 25% of patients report that their symptoms started before the age of fifteen years old (16).When compared to adults, juveniles with fibromyalgia more commonly report subjective swelling, ankle pain and exacer bation by overactivity. In contrast, they have less frequent associated low back pain, hand pain, and changes in symptoms associated with anxiety or weather .Fibromyalgia and older patients (over 60):

The "pain" is typically widespread or generalized and often axial (such as low back pain). It is interpreted to be deep and muscular in origin and the patient may also report subjective weakness.

Approximately 25% of patients report "poor circulation" or numbness and tingling which is not in a radicular pattern and typically involves arms and hands. However, a physical examination reveals normal muscle strength and sensory testing, with no inflammatory or arthritic features.


Stiffness is also a reported and is generally widespread and diffuse. As in other rheumatic diseases, the stiffness is typically worse in the morning, may improve as the day progresses, but is exacerbated the day after physical exertion or exercise. Unlike some rheumatic diseases, however, the pain seldom limits one's ability to get out of bed .


Fatigue is often the problem that the patient first describes to the physician. It may be interpreted as a lack of physical endurance or a dearth of psychic energy or initiation . The patient may experience short periods of energy (such as for 24 to 48 hours), only to rebound into feeling fatigued and tired again. While this symptom is common, it is not universal.

Non-restorative sleep:

Fibromyalgia patients typically wake up in the morning feeling tired. While this symptom is rarely offered as a complaint by the patient, it is often readily acknowledged upon questioning (e.g. "Do you feel refreshed upon awakening?"). Again, while this symptom is common, it is not universal. Modulating factors
All of these symptoms are further highlighted by typical modulating factors. Fibromyalgia patients generally note exacerbation with some or all of the following factors:
Cold, damp weather
Overexertion The reverse is also true – patients feel better with warm weather, hot baths, or even vacations from home or work. Almost all patients have tried a variety of /topics/conserv/overview/med/med02.html">non-steroidal anti-inflammatory medications (NSAID’s), but without benefit. In a study of 50 matched controls, certain associated conditions were found to be unusually common for fibromyalgia patients. This study showed that a relatively high percent of fibromyalgia patients also had:
Anxiety disorders – 70%
Irritable bowel syndrome (IBS) – 34%
Migraine headaches – 22% Additionally, Raynaud’s syndrome, dysmenorrhea and irritable bladder were common findings (16).
Specific diagnosis of fibromyalgia:

American College of Rheumatology Diagnosis Criteria"The hallmark of the examination of a fibrositis patient is the lack of objective findings in relation to the plethora of symptoms. The only abnormal finding is the presence of numerous tender points".
Robert Bennett, 1988In 1990, the American College of Rheumatology published their criteria for classification of fibromyalgia. The classification was based on a blinded, multi-center study of 558 age and sex matched consecutive patients (9). Eleven symptom variables (such as sleep disturbance, frequent headaches) and modulating factors (such as stress, weather changes) were studied.Two critical findings resulted from this study (9):
"Widespread pain"was present in 98% of fibromyalgia patients, compared with 69% of the control group. Widespread pain is defined as pain in the left and right side of the body, above and below the waist, as well as axial skeletal pain (such as in the neck, front or back chest, low back).
Pain in 11 of 18 tender pointswas reported on digital palpation ("tender" is not considered "painful"). 88.4% of fibromyalgia patients had widespread pain (described above) in combination with pain in 11 of 18 tender points as described. The findings of morning stiffness (76%), fatigue (78%), and unrefreshing sleep (76%) is certainly suggestive of fibromyalgia syndrome. Yet these symptoms are common and non-specific. Moreover, only 56% of patients have all three (9).Instead, the diagnosis of fibromyalgia relies on the history of widespread pain (98%) and finding of discreet "tender points" on physical examination. Tender points are discreet areas of tenderness in the muscular and tendonous issue of fibromyalgia patients.The patient is typically not aware of these points and is often quite surprised at how a knowledgeable physician can readily pinpoint them (4). The tender points may be found by firm palpation with the thumb or first and second fingers. While the precise location of tender points is highly predictable and uniform, they are often not regionally related to the patient’s feeling of pain.Tender points are found at very uniform and consistent sites in fibromyalgia patients. Over 40 paired sites have been identified. The nine most sensitive and specific paired sites are shown: The tenderness is detected by palpating these areas with a steady force using the fingers. Control sites are tested for comparison. Patients with fibromyalgia have localized tenderness at the uniform sites but are not diffusely sensitive to palpation elsewhere.Laboratory or radiographic tests are not used to help establish a diagnosis of fibromyalgia. However, since fibromyalgia can occur simultaneous with other disorders, or its symptoms can be mimicked by a variety of conditions, certain blood tests may be in order. These tests will help rule out conditions such as inflammatory rheumatic disease, hypothyroidism, anemia or endocrinopathies (4, 10).Invasive testing is seldom indicated, but a test to measure response to nerve stimulation (electromyography) or even muscle biopsy may at times be obtained if a patient has demonstrable weakness or if a disease of the muscle is suspected
With the exception of tender points, the physical examination may be unrevealing because the patient’s symptoms are common and non-specific (e.g. fatigue).The diagnosis may be confused with other conditions, including myofascial syndrome, rheumatoid arthritis or osteoarthritis, among other conditions. An accurate diagnosis is critical because the treatments are very different.A few similar conditions include:
Fibromyalgia is perhaps most commonly confused with myofascial pain syndrome. Myofascial pain syndrome is regional pain syndrome, characterized by palpable, "trigger points" that produce pain in a referred distribution (another part of the body).
Comprehensive approach:

The precise pathophysiologic basis of fibromyalgia has yet to be clearly and convincingly illustrated. Fibromyalgia is known to be a chronic disorder, which means that there is no "cure" for fibromyalgia. Instead, treatment involves a coordinated management program to alleviate the symptoms. The goals of a management program should include the following components:

Patient education:
The foundation of an effective fibromyalgia management program is perhaps patient education. A patient who is well educated about fibromyalgia can have a sense of control and improved ability to manage the condition, which in turn can substantially alleviate symptoms of fibromyalgia. First, patients should know that fibromyalgia is a common, non-progressive, non-deforming, and non-life threatening condition. Patients should be reassured that physical activity will not harm them and in fact can be helpful. Also, remissions can be expected from time to time (39). Modulating factors that may exacerbate or alleviate their symptoms should be identified and discussed. These may include:
Offending habits such as excessive caffeine, alcohol or nicotine intake should be addressed.
Facilitation of stress management techniques and counseling should be incorporated as appropriate.
Energy conservation techniques and work simplification principles should be employed under the direction of an occupational therapist, as appropriate.
Adjustments in the work or home environment (such as use of lumbar support in a chair) can facilitate maximum social and vocational abilities.

Unrefreshing or non-restorative sleep is reported in greater than 75% of fibromyalgia patients. One study reported abnormal stage 4 sleep patterns in fibromyalgia patients (33). Furthermore, clinically induced sleep deprivations can induce a fibromyalgia-like condition in normal adults. Therefore, much attention has focused on enhancing sleep, particularly stage 4 sleep, and promoting good sleep "hygiene" is essential. Important sleep habits include:
Establishing a regular sleep/wake cycle
Avoidance of caffeine, alcohol and other drugs that may inhibit good sleep
Minimizing stress is important, and appropriate stress reduction strategies need to be incorporated aerobic fitness. When appropriate, medications to enhance sleep may be necessary sedatives/hypnotics
FMS Medications:

Various classes of medications have been evaluated in the treatment of fibromyalgia, including:
triTricyclic anti-depressants
muscMuscle relaxants
Non-steroidal anti-inflammatory medications (NSAID’s
Cortico steroids Tricyclic anti-depressants
Tricyclic anti-depressants that are commonly used in the treatment of fibromyalgia include Amitriptyline (Elavil), Nortriptyline (Pamelor), and Doxepin (Sinequan). Amitriptyline is perhaps the most common as its efficacy has been demonstrated in controlled studies and it is known to enhance stage 3 and 4 sleep.In a study of 70 fibromyalgia patients that evaluated the efficacy of 50 mg of Amitriptyline, patients receiving the Amitriptyline had significantly improved quality of sleep, morning stiffness, pain analog and global assessment. Interestingly, tender point score did not improve. Common side effects of Amitriptyline may include morning sedation, dry mouth, confusion and urinary retention. Fibromyalgia patients seem especially sensitive to these side effects. Therefore, the dose should be individualized and generally begun at the lowest possible dose (such as 5 to 10 mg) at nighttime. Taking the drug 1 to 2 hours prior to sleep can minimize difficulties with morning sedation or "hangover". If there is no response, the dose can increase after 2 to 3 weeks. Muscle relaxants
Muscle relaxants such as Cyclobenzaprine (Flexeril) and Orphenadrine Citrate (Norflex) have also been studied in the treatment of fibromyalgia. Cyclobenzaprine has a tricyclic chemical structure similar to Amitriptyline, yet its anti-depressant effects are minimal. It is used only as a short-term muscle relaxantIn a study of 120 fibromyalgia patients, those receiving Cyclobenzaprine(10 to 40 mg) over a 12 week period had significantly improved quality of sleep and pain score. There was a trend towards improvement in fatigue symptoms but not in duration of morning stiffness. Interestingly, there was also a reduction in the total number of tender points and muscle tightness. (41)For use in treating fibromyalgia, common beginning dosages are generally 5 to 10 mg at bedtime. Again, common side effects include dry mouth, drowsiness, and constipation.Orphenadrine Citrate(Norflex) is a centrally acting analgesic muscle relaxant. It is used as an adjunct to rest, physical therapy and symptomatic measures for acute musculoskeletal pain.In an abstract that reviewed the response of Orphenadrine Citrate in 85 fibromyalgia patients, over a one-year period a significant, sustained improvement in general pain was noted in 34% of patients taking Orphenadrine Citrate (vs. 15% and 10% of patients taking Amitriptyline and Cyclobenzaprine, respectively). The usual short-term dosage is one tablet (100 mg). Common side effects include confusion, anxiety and tremors, dry mouth and tachycardia. A few contra-indications include glaucoma, prostatic hypertrophy, pyloric/duodenal obstruction or stenosing peptic ulcers. With prolonged use, periodic monitoring of blood, urine and liver function tests are recommended. Sedative/hypnotics
Sedative/hypnotics may also have a role in the comprehensive management of fibromyalgia. Because fibromyalgia patients typically report that their sleep is not refreshing, some physicians may recommend the use of sedatives/hypnotic medications to enhance sleep.Temazepan (Restoril), Flurazepan (Dalmane) and Triazolam (Halcion) are Benzodiazepine agents commonly used for short-term management of insomnia. Controlled, double blind studies of their efficacy and safety for fibromyalgia patients have not yet been conducted. Anecdotally, one physician found "total resolution of symptoms within 1 to 4 weeks" in 10 of 14 fibromyalgia patients (5). Dosages, administration and method of evaluation and side effects were not reported.Common side effects of these sedative/hypnotic drugs include excessive drowsiness, confusion, nausea, tachycardia, nightmares and even (paradoxically) insomnia. Contra-indications include pregnancy and glaucoma. These drugs are not recommended for long-term use, and withdrawal symptoms have been reported.Non-steroidal anti-inflammatory drugs (NSAID’s)
NSAID’s have commonly been used to treat fibromyalgia. Fibromyalgia patients most commonly report generalized pain and stiffness. NSAID’s are commonly used for their anti-inflammatory and analgesic (pain-killing) properties (43,44).Unfortunately, despite their widespread use, NSAID’s have not been shown to be very effective in relieving the painful symptoms of fibromyalgia. There is no documented evidence of inflammatory changes associated with this syndrome.In a study of 46 fibromyalgia patients that compared Ibuprofen to placebo, both groups reported interval improvement in fatigue, pain, tender points, and subjective swelling and there was no significant difference between the two groups (44). In another 6 week study of 62 fibromyalgia patients, groups of patients were given the tricyclic anti-depressant Amitriptyline, the NSAID Naproxen, both drugs or neither drug. Although there was initial improvement in pain at two weeks in the Naproxen group, the difference was not significant. While these studies do not demonstrate the efficacy of NSAID’s for fibromyalgia patients, they may have clear benefits for fibromyalgia patients with concomitant and exacerbating conditions such as osteoarthritis, or other conditions.
Cortico steroids:

Steroids have been assessed for treatment of fibromyalgia. In a two-week study to assess the efficacy of Prednisone, there was no significant difference between the Prednisone or placebo or baseline . However, it is thought that a therapeutic trial of Prednisone may be beneficial for the patient if a co-existent, steroid responsive disorder is suspected.

Fibromyalgia - 3 Things Patients Can Do For Themselves:

Stress reduction.
Reducing stress can help with muscle relaxation and improve non-Rapid Eye Movement (non-REM) sleep. Inadequate sleep of this type is felt to play a central role in promoting the symptoms of fibromyalgia. The response to stress differs from person to person. The reduction of stress in the treatment of fibromyalgia must be individualized for each patient. Stress reduction might include simple stress modification at home or work, biofeedback, relaxation tapes, psychological counseling, exercise activities such as yoga and/or support among family members, friends, and doctors. Sometimes, changes in environmental factors (such as noise, temperature, and weather exposure) can exacerbate the symptoms of fibromyalgia, and these factors need to be modified.

Aerobic activities that exercise the muscles can work together with the methods above to greatly relieve the symptoms of fibromyalgia. Many experts on fibromyalgia feel that exercise works by promoting the non-REM sleep that is commonly deficient in patients with this illness. Low-impact aerobic exercises, such as swimming, cycling, walking, and stationary cross-country ski machines can be very effective. For patients who are unfamiliar with exercising options, a physical therapist can provide an ideal source of instruction. With any new exercise program, it is important to understand that a mild increase in aching in the first two weeks is expected. This increased aching is especially likely to occur when the patient has not been exercising and the muscles are deconditioned. Sometimes, applications of cold packs to sore muscles and tendons after exercising can help relieve muscle inflammation and soreness.
The big three methods above may be all a patient with fibromyalgia needs in order to regain optimal health. However, especially early on in treatment, it should also be understood that medications are available that can work with these methods to improve sleep, reduce pain, and relieve fatigue. Typically, these medications do not have major side effects and they may only be needed for temporary periods. The treatment of fibromyalgia, therefore, is often a classic blend of the efforts of the patient and the doctor who together can address the condition.

What is fibromyalgia?

Fibromyalgia is a chronic condition causing pain, stiffness, and tenderness of the muscles, tendons, and joints. Fibromyalgia is also characterized by restless sleep
awakening feeling tired, fatigue, anxiety, depression, and disturbances in bowel function. Fibromyalgia was formerly known as fibrositis. While fibromyalgia is one of the most common diseases affecting the muscles, its cause is currently unknown. The painful tissues involved are not accompanied by tissue inflammation. Therefore, despite potentially disabling body pain, patients with fibromyalgia do not develop body damage or deformity. Fibromyalgia also does not cause damage to internal body organs. Therefore, fibromyalgia is different from many other rheumatic conditions (such as rheumatoid arthritis, systemic lupus, and polymyositis. In those diseases, tissue inflammation is the major cause of pain, stiffness and tenderness of the joints, tendons and muscles, and it can lead to joint deformity and damage to the internal organs or muscles.

What causes fibromyalgia?
The cause of fibromyalgia is not known. Patients experience pain in response to stimuli that are normally not perceived as painful. Researchers have found elevated levels of a nerve chemical signal, called substance P, and nerve growth factor in the spinal fluid of fibromyalgia patients. The brain nerve chemical serotonin is also relatively low in these patients. Also, patients with fibromyalgia have impaired non-Rapid-Eye-Movement, or non-REM, sleep phase (which likely explains the common feature of waking up fatigued and unrefreshed in these patients). The onset of fibromyalgia has been associated with psychological distress, trauma, and infection.

Who does fibromyalgia affect?
Fibromyalgia affects predominantly women (over 80 percent) between the ages of 35 and 55. Rarely, fibromyalgia can also affect men, children, and the elderly. It can occur independently, or can be associated with another disease, such as systemic lupus or rheumatoid arthritis. The prevalence of fibromyalgia varies in different countries. In Sweden and Britain, 1 percent of the population is affected by fibromyalgia. In the United States, approximately 2 percent of the population have fibromyalgia.
What are symptoms of fibromyalgia?
The universal symptom of fibromyalgia is pain. As mentioned earlier, the pain in fibromyalgia is not caused by tissue inflammation. Instead, these patients seem to have an increased sensitivity to many different sensory stimuli, and an unusually low pain threshold. Minor sensory stimuli that ordinarily would not cause pain in individuals can cause disabling pain in patients with fibromyalgia. The body pain of fibromyalgia can be aggravated by noise, weather change, and emotional stress. The pain of fibromyalgia is generally widespread, involving both sides of the body. Pain usually affects the neck, buttocks, shoulders, arms, the upper back, and the chest. "Tender points" are localized tender areas of the body that can bring on widespread pain and muscle spasm when touched. Tender points are commonly found around the elbows, shoulders, knees, hips, back of the head, and the sides of the breast bone.
Each patient with fibromyalgia is unique. Any of the above symptoms can occur intermittently and in different combinations.
Since the symptoms of fibromyalgia are diverse and vary among patients, treatment programs must be individualized for each patient. Treatment programs are most effective when they combine patient education, stress reduction, regular exercise, and medications. Recent studies have verified that the best outcome for each patient results from a combination of approaches that involves the patient in customization of the treatment plan.
What Your Pharmacist Should Know About FMS and CMP:
by Devin Starlanyl
This information may be freely copied and distributed only if unaltered,
with complete original content including: © Devin Starlanyl, 1995-2001.
Please read “What Everyone on Your Health Care Team Should Know About FMS
and CMP”.
Each of us with fibromyalgia (FMS), Chronic Myofascial Pain (CMP), or FMS/CMP
Complex needs a trustworthy pharmacist to coordinate our medications and keep
us informed. New medications are coming out so rapidly that it is impossible for
physicians to keep up with them all. Our health care team often comprises many
specialists, and they don’t always communicate with each other. Most of us are on
many medications of different kinds, and people with FMS tend to react unusually
to medications. Some of our medications can interact unpleasantly. For example,
Soma (carisoprodol) can react with niacin if taken at the same time, producing
nausea and a painfully hot flush and rash.
FMS/CMP Complex and Medication
Often, people with FMS/CMP Complex have to try many medications before they
find the best ones. We react differently to each medication, and there is no “cook-book
recipe” for FMS or CMP. What works well for one of us can be ineffective for
another. A medication that puts one person to sleep may keep another awake.
There is a whole subset of FMS/CMP Complex patients who find medications such
as Benedryl, Ultram, Pamelor and Paxil stimulating. Some of these people may
look healthy, but their suffering can be great. We all have our own unique combi-nation
of neurotransmitter disruption and connective tissue disturbance. We need
doctors who are willing to stick with us until an acceptable symptom relief level is
reached. We also need a compassionate and understanding pharmacist to work
with us.
The most-studied medications that modulate neurotransmitters are psychoactive
drugs. This does not mean that the patient’s condition is psychological. Fibromy-algia
patients have enhanced nociception (Bendtsen, Norregaard, Jensen et al.
1997) and are often in great pain. Medications that affect the central nervous
system are appropriate for FMS. The target symptoms are sleep lack, muscle
rigidity, pain, and fatigue. These medications don’t stop the alpha-wave intrusion
into delta-level sleep, but they do extend the amount of sleep and may ease
symptom “flares”. It is the rule rather than the exception that an FMS/CMP client
will save strong pain medications from a surgery or an injury for when they are
really needed — for an FMS/CMP “flare”. This behavior indicates that their pre-scription
needs are not being met. FMS is often misunderstood (Jones 1996) by
the medical profession, and your clients may turn to you for guidance and under-standing.

Medications and Narcotics:

It’s normal to be depressed by chronic pain, but that doesn’t mean depression is
causing the pain. FMS is a sensory amplification syndrome (Kosek, Ekholm and
Hannson 1996). Maintenance with mild narcotics (Darvocet, Tylenol #3, Vicodin-Lorcet-
Lortab) for nonmalignant (noncancerous) chronic pain conditions is a logi-cal,
humane alternative if other reasonable attempts at pain control have failed.
The main problem with raised dosages of these medications is not with the nar-cotic
components per se, but with the aspirin or acetaminophen that is often com-pounded
with them. There can be serious side effects with NSAID usage (Gardner
and Simpkin 1991). Please keep an eye on the level of your client’s medications.
Clients with FMS/CMP Complex need adequate pain control to break the pain/
contraction/pain/contraction spiral. It does not serve them well if you treat them
like addicts. They get no pleasure from their medications, just some symptom
relief. However, the level of medication should not be rising steadily. That is a
sign that the perpetuating factors are not being treated properly, and/or that the
level of pain relief is not adequately treated with the current medication. During a
symptom flare, these clients often need more medications, but the level should
decrease again after flare has subsided.
Narcotic analgesics are sometimes more easily tolerated than NSAIDs (Reidenberg
and Portenoy 1994). Neither FMS nor CMP is inflammatory, and anti-inflammatory
medications often contribute to malabsorption in the gut. NSAIDs may disrupt
stage 4 sleep, and delta sleep is already interrupted in FMS. Prolonged use of
narcotics may result in physiological changes affecting tolerance or physical depen-dence
(withdrawal), but these are not the same as psychological dependence (ad-diction).
Be sure to ask your FMS/CMP clients about multiple chemical sensitivities. Many of
us are lactose intolerant and can’t deal with even the small amounts of lactose
used as fillers in many medications. Be patient. Many of us will appear confused
at times, due to “fibrofog”. We need your help to cope with the difficulties of living
with an invisible chronic illness.
Here is also some good info on the never ending addiction vs dependance controversy...I have printed several good articles & have carried them to new Dr appts w. they start the addiction speil:

Chronic Pain In America: Roadblocks To Relief:

Attitudes Toward Narcotic Pain Relievers


The Use of Opioids:The Use of Opioids
for the Treatment of Chronic Pain:
A consensus statement from American Academy of Pain Medicine and American Pain Society

Pain is often managed inadequately, despite the ready availability of safe and effective treatments. Many strategies and options exist to treat chronic noncancer pain. Since chronic pain is not a single entity but may have myriad causes and perpetuating factors, these strategies and options vary from behavioral methods and rehabilitation approaches to the use of a number of different medications, including opioids.

Pain is one of the most common reasons people consult a physician, yet it frequently is inadequately treated, leading to enormous social cost in the form of lost productivity, needless suffering, and excessive healthcare expenditures.

Impediments to the use of opioids include concerns about addiction, respiratory depression and other side effects, tolerance, diversion, and fear of regulatory action.

Current information and experience suggest that many commonly held assumptions need modification.

Addiction: Misunderstanding of addiction and mislabeling of patients as addicts result in unnecessary withholding of opioid medications. Addiction is a compulsive disorder in which an individual becomes preoccupied with obtaining and using a substance, the continued use of which results in a decreased quality of life. Studies indicate that the de novo development of addiction when opioids are used for the relief of pain is low. Furthermore, experience has shown that known addicts can benefit from the carefully supervised, judicious use of opioids for the treatment of pain due to cancer, surgery, or recurrent painful illnesses such as sickle cell disease.

Respiratory depression and other side effects: Fear of inducing respiratory depression is often cited as a factor that limits the use of opioids in pain management. It is now accepted by practitioners of the specialty of pain medicine that respiratory depression induced by opioids tends to be a short-lived phenomenon, generally occurs only in the opioid-naive patient, and is antagonized by pain. Therefore, withholding the appropriate use of opioids from a patient who is experiencing pain on the basis of respiratory concerns is unwarranted. Other side effects, such as constipation, can usually be managed by attention to diet, along with the regular use of stool softeners and laxatives. Sedation and nausea, possible early side effects, usually dissipate with continued use.

Tolerance: It was previously thought that the development of analgesic tolerance limited the ability to use opioids efficaciously on a long-term basis for pain management. Tolerance, or decreasing pain relief with the same dosage over time, has not proven to be a prevalent limitation to long-term opioid use. Experience with treating cancer pain has shown that what initially appears to be tolerance is usually progression of the disease. Furthermore, for most opioids, there does not appear to be an arbitrary upper dosage limit, as was previously thought.

Diversion: Diversion of controlled substances should be a concern of every health professional, but efforts to stop diversion should not interfere with prescribing opioids for pain management. Attention to patterns of prescription requests and the prescribing of opioids as part of an ongoing relationship between a patient and a healthcare provider can decrease the risk of diversion.

V. Policy is evolving. State law and policy about opioid use are currently undergoing revision. The trend is to adopt laws or guidelines that specifically recognize the use of opioids to treat intractable pain. These statements serve as indicators of increased public awareness of the sequelae of undertreated pain and help clarify that the use of opioids for the relief of chronic pain is a legitimate medical practice.

VI. Accepted principles of practice for the use of opioids should be promulgated. Due to concerns about regulatory scrutiny, physicians need guidance as to what principles should generally be followed when prescribing opioids for chronic or recurrent pain states. Regulators have also expressed a need for guidelines to help them to distinguish legitimate medical practice from questionable practice and to allow them to appropriately concentrate investigative, educational, and disciplinary efforts, while not interfering with legitimate medical care.

VII. Principles of good medical practice should guide the prescribing of opioids. AAPM and APS believe that guidelines for prescribing opioids should be an extension of the basic principles of good professional practice.

Evaluation of the patient: Evaluation should initially include a pain history and assessment of the impact of pain on the patient, a directed physical examination, a review of previous diagnostic studies, a review of previous interventions, a drug history, and an assessment of coexisting diseases or conditions.

Treatment plan: Treatment planning should be tailored to both the individual and the presenting problem. Consideration should be given to different treatment modalities, such as a formal pain rehabilitation program, the use of behavioral strategies, the use of noninvasive techniques, or the use of medications, depending upon the physical and psychosocial impairment related to the pain. If a trial of opioids is selected, the physician should ensure that the patient or the patient's guardian is informed of the risks and benefits of opioid use and the conditions under which opioids will be prescribed. Some practitioners find a written agreement specifying these conditions to be useful.

An opioid trial should not be done in the absence of a complete assessment of the pain complaint.

Consultation as needed: Consultation with a specialist in pain medicine or with a psychologist may be warranted, depending on the expertise of the practitioner and the complexity of the presenting problem. The management of pain in patients with a history of addiction or a comorbid psychiatric disorder requires special consideration, but does not necessarily contraindicate the use of opioids.

Documentation: Documentation is essential for supporting the evaluation, the reason for opioid prescribing, the overall pain management treatment plan, any consultations received, and periodic review of the status of the patient.

VIII. The Mission Statements of AAPM and APS are consistent with this collaborative effort. The American Academy of Pain Medicine is the AMA-recognized specialty society of physicians who practice pain medicine. The American Pain Society is the national chapter of the International Association for the Study of Pain and is composed of physicians, nurses, psychologists, scientists, and members of other disciplines who have an interest in the study and treatment of pain.

The mission of the American Academy of Pain Medicine is to enhance pain medicine practice in this country by promoting a socioeconomic and political climate conducive to the effective and efficient practice of pain medicine and by ensuring quality medical care by physicians specializing in pain medicine, for patients in need of such services.

The mission of the American Pain Society is to serve people in pain by advancing research, education, treatment, and professional practice. The undertreatment of pain in today's society is not justified. This joint consensus statement has been produced pursuant to the missions of both organizations, to help foster a practice environment in which opioids may be used appropriately to reduce needless suffering from pain.
Pain: The Fifth Vital Sign:
National Center for Chronic Disease Prevention and Health Promotion:
Women and Pain:
Self-Discovery Through Journaling:
Depression Risk Assessment:
Fatigue Takes a Special Toll on Women:
Disorders More Common in Women:
Pain Management and Information Organizations:

Medications should be used along with a program of proper diet, life style changes, mind work and bodywork. Medications which affect the central nervous system are appropriate for FMS&MPS Complex. They target symptoms of sleep lack, muscle rigidity, pain and fatigue. Pain sensations are amplified by FMS, and so the pain of MPS pain is multiplied. FMS&MPS Complex patients often react oddly to medications.

It is the rule rather than the exception that a FMS&MPS Complex patient will save strong pain meds from surgery or injury for when they REALLY need it -- for an FMS&MPS Complex "flare". This is a sign that your needs aren't being met. I give you the following quotes. I hope you will pass them on to your doctor. They are from "PAIN A Clinical Manual for Nursing Practice", by McCaffrey and Beebe.

* Health professionals "often are unaware of their lack of knowledge about pain control."

* "The health team's reaction to a patient with chronic nonmalignant pain may present an impossible dilemma for the patient. If the patient expresses his depression, the health team may believe the pain is psychogenic or is largely an emotional problem. If the patient tries to hide the depression by being cheerful, the health team may not believe that pain is a significant problem."

* "Research shows that, unfortunately, as pain continues through the years, the patient's own internal narcotics, endorphins, decrease and the patient perceives even greater pain from the same stimuli."

* "The person with pain is the only authority about the existence and nature of that pain, since the sensation of pain can be felt only by the person who has it."

* "Having an emotional reaction to pain does not mean that pain is caused by an emotional problem."

* "Pain tolerance is the individual's unique response, varying between patients and varying in the same patient from one situation to another." "Respect for the patient's pain tolerance is crucial for adequate pain control."


* "No evidence supports fear of addiction as a reason for withholding narcotics when they are indicated for pain relief. All studies show that regardless of doses or length of time on narcotics, the incidence of addiction is less than 1%."

This book is so clear and so well documented that I suggested my local library buy it. I wanted everyone in the area to have access to this information. Once you read this book, you get a greater understanding of pain and pain medications, as well as coping mechanisms. Many non-pharmaceutical methods of pain control are also described thoroughly in this reference.

It's normal to be depressed with chronic pain, but that doesn't mean depression is causing the pain. Maintenance with mild narcotics (Darvocet, Tylenol #3, Vicodin-Lorcet-Lortab) for nonmalignant (non-cancerous) chronic pain conditions be a humane alternative if other reasonable attempts at pain control have failed. The main problem with raised dosages of these medications is not with the narcotic components, per se, but with the aspirin or acetaminophen that is often compounded with them. For medical journal documentation on the use of narcotics for non-malignant chronic pain, see "The Fibromyalgia Advocate". Narcotics should not be given in conjunction with benzodiazepines, as the latter antagonize opioid analgesia.

Narcotic analgesics are sometimes more easily tolerated than NSAIDS, the Non-Steroidal Anti-Inflammatory Drugs. Neither FMS nor MPS is inflammatory. NSAIDS may disrupt stage 4 sleep. Prolonged use of narcotics may result in physiological changes of tolerance or physical dependence (with- drawal), but these are not the same as psychological dependence (addiction). Under-treatment of chronic pain of MPS/FMS results in a worsening contraction which results in even more pain. "Anti- anxiety" medications are not an indication that your symptoms are "all in the head". These medications don't stop the alpha-wave intrusion into delta-level sleep, but they extend quantity of sleep, and may ease daytime symptom "flares".
  • Guaifenisen
    Folic acid
    Relafen (nambumetone)
    Desyrel (Trazodone)
    Atarax (hydroxyzine HCl)
    Elavil (amitriptyline)
    Wellbutrin (bupropion HCl)
    Ambien (zolpidem tartate)
    Soma (carisoprodol)
    Flexeril (cyclobensaprine)
    Sinequan (doxepin)
    Prozac (fluoxetine hydrochloride)
    Ultram (tramadol)
    Hydrocodone/Guaifenisen Syrup
    Xanax (alprazolam)
    Xanax (alprazolam)
    Klonopin (clonazepam)
    BuSpar (buspirone HCl)
    Zoloft (sertraline)
    Tagamet, Zantac, Prilosec, Axid
    Paxil (paroxetine HCl)
    Effexor (venlafaxine HCl)
    Inderal (propranolol HCl)
The rest of the list is at:
Oral Methadone Effective as First-line Opioid Treatment for Chronic Non-Cancer pain:

Prescribed Medications for Fibromyalgia:

Categories of drugs used in the treatment of fibromyalgia can include: [list=1]
1) Analgesics

2) Anti-inflammatory medicines

3) Antidepressant medicines (tricyclics and selective serotonin reuptake inhibitors)

4) Muscle relaxants

5) Sleep modifiers

6) Anti-anxiety medicines

7) Other medicines used to treat chronic pain [/list=1]

Analgesics are pain killers and can include over-the-counter medicines such as aspirin and acetaminophen, or prescription-strength pain pills like narcotics (opiates), codeine, Vicodin, Darvocet, Oxycontin and Percocet. Ultram is a pain reliever that differs from narcotics in its action on the central nervous system. These medications do not alter the fibromyalgia, but they can help take the edge off of pain. Many people with fibromyalgia are sensitive to codeine medicines, which can cause nausea or an allergic reaction. Ultram can cause allergic reactions in people sensitive to codeine, and a small number of people taking Ultram have seizures. As a pain specialist, I will frequently prescribe analgesics, including narcotics, for patients experiencing severe pain.

Muscle Relaxants: Muscle relaxants can decrease pain in people with fibromyalgia. Medicines in this family include Flexeril, Soma, Skelaxin, and Robaxin. The most common side effect is drowsiness, although Soma and Skelaxin cause less of it. I have found that muscle relaxants do not really decrease muscle spasms or truly “relax” muscles, because the painful area still has palpable spasms. Rather, the medicine appears to help by a central neurologic mechanism that reduces muscle pain. If drowsiness is a side effect, this medicine should only be taken in the evening so it doesn’t interfere with driving or concentration. Flexeril is a popular medicine for evening. Although it is a muscle relaxant, it is very similar to amitriptyline in structure and effect, hence the benefits reported.

Medicines in the antispasticity category can be used to treat muscle spasms. Two of these medicines, Zanaflex and Baclofen, have been shown to help reduce back muscle spasms and pain. Antispasticity medicines are primarily intended for people who have neurologic conditions causing involuntary muscle spasms (such as spinal cord injuries, multiple sclerosis, or strokes). However, they may have a role in patients with fibromyalgia who have numerous muscle spasms.

Fibromyalgia Survival Strategies:

• Understand there is no magical pill that will get rid of all fibromyalgia symptoms.

• Experiment with your doctor to determine which medicines can help “control” your symptoms.

• Responsibly use analgesics and narcotics to take the edge off the pain. These medications will not relieve all your pain but may improve symptoms and comfort.

• Educate yourself about expectations of medication.

• Use the lowest effective dose of medicine; wean off whenever possible [and discontinue any medication that is not working].

• Be flexible with medications. Keep it simple.

NEW Fibro Drug:

Are Fibromyalgia and Other Chronic Conditions Associated?

Fibromyalgia and Chronic Fatigue Syndrome Clinic:

Breakthrough Pain Resources:

Treatments for Pain:

MEDLINEplus: Pain

Pain Management Online:

American Society of Regional Anesthesia and Pain Medicine:

Hope this was of some help Good Luck, pls keep us posted...(((hugs)))
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Unread 04-17-2003, 11:31 PM
Multiple symptoms..and life..

I have been reading through some of the links posted in other area's of the site as well as this HUGE post full of information!!

Thank You for the time and research into this disorder!

One thing I must state for anyone who has been diagnosed or reads these articles and worries they may be afflicted with any of the disorders or diseases listed, please please consult a physicain before you stress yourself out reading too much!

I constanlty have to remind myself while researching that I have been tested for this, or that. That I have been diagnosed and my Doctors are or are not certain about this or that, or I drive myself mad with worry.

If you are not sure, bring it up at your next visit and make sure your Physician is listening to you.

No one needs more stress that can be avoided.


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