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test results...hmmm...new DX test results...hmmm...new DX

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  #1  
Unread 04-10-2003, 02:26 PM
test results...hmmm...new DX




Just wanted to post an update...been three weeks, bout time eh? My Doc NEVER calls me personally so I feel she was pretty concerned to call me in person after all this time.

First the good news....No ovarian remnant seen at this time!!! I like news like that...

Now the other...seems my doc is pretty certain I have RA and probable Fibro. She wants me to set another appt asap to run a few more tests but she wants the tests for confirmation. She said I had bone loss but didnt' want to discuss it over the phone and would talk to me about it at my next appt. We had discussed my possiblity about having RA before this last surgery but kinda got sidetracked with the Remnant and all.

I asked her what could be done to help the acheyness and hurting I have all the time and she said again.."we'll discuss meds at your appt". Then went on to question my HRT and said we would discuss that to later...Would my HRT make a diff in the RA or the Fibro?

((((Sheri))))) Thanks for having so many links...I'm re-reading all the ones I can find on Fibro...

does anyone have any input on how to deal with this???? I'm only 40 and now I know for sure I'm falling apart at the seams now!!! ( I'm trying to find humor in all of this...but boy it's durn hard)



Dawn
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  #2  
Unread 04-10-2003, 04:26 PM
test results...hmmm...new DX

((((Dawn))))) I do wish I could hop on another plane and you again, (((((sweetie)))). I know just where you are, right now, since I was there not so long ago

Last summer, I ended up having extreme pains in my ankles and wrists, pain preventing me from walking. It was sudden and it was earth shattering to me to learn that it was almost certainly arthritis, most likely RA.

However, since the tests have all come back negative, the diagnosis has now been changed to "arthritic pain". A rheumy said it just meant that the arthritis was still in it's very early stage. Since they don't know what type of arthritis I have, they're treating it with anti-inflammatories (Celebrex is what works best, right now). However, I know that if it is RA, this is not the best course of action.

((((Dawn))))) I know how you feel: I was crushed when I realized that, at 45, I was facing a lifetime of pain. It took me several months to get it all under perspective and in control. Right now, thanks to the meds, my pain is under control and I can lead a normal life.

((((Dawn))))) I hope you're seeing your doctor very soon and that she will be able to provide the right formulation to get your pain under control. You'll see, once the pain is managed, everything tends to get a little easier. Don't get me wrong, I don't particularly relish having to take meds almost continually. But it still beats not being to walk or enjoy life.

Where HRT is concerned, I have no idea how this will impact your HRT. Hopefully someone else will come around who has arthritis and is also on HRT.

Sending tons and tons of your way.We won't let you down.
  #3  
Unread 04-10-2003, 07:46 PM
test results...hmmm...new DX

Dawn,

I am so sorry you are going through all of this just remember we are all here for you. Thank you very much for email - it sure does help when you have people who actually understand what you are feeling and aren't looking at you like you have two heads.

You said no ovarian remnant seen this time - did they ever see one? I'm just learning about ovarian remnant - I am trying to do all the research I can.

You are in my er's. Let us know how it goes with your doc but please see her soon.
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  #4  
Unread 04-11-2003, 07:15 AM
test results...hmmm...new DX

((((((((((Dany)))))))))

Thank you so much for the words of support and wisdom!!! We kinda expected this tho remember, So it's not really shocking me as much as I thought it would...I just really have a "I should never have had the hyst" kinda feeling going on right now. It's makeing me more bitter than anything. I know I would have probably had the RA anyway. It's pretty predominate in the female side of my family. The hyst just makes it happen sooner, I know that now.

The Fibro....Well, Several sisters had suggested to me awhile ago this could very well be what I had been feeling. I did a lot of reading on (((((sheri's)))))))) links and think I'm pretty informed but always willing to learn more. I have good days and bad days...I just have to learn to not do things on the good days that will make the bad days worse. It's that "I feel good today!! Let's get caught up on something" then I do and I feel like hell for the next 2 or 3 (or 4 if I've been working in the garden!! ) I'm already learning to plan my days of physically activity...sheesh. If I know S/O wants to go hang with friends or we have a buisness function I don't do ANYTHING the day or two before. I haven't told Him or DD yet what the doc said. I don't know if I will. DD has enough stress with leaving for college in Aug and S/O has been thru enough with me for the time being. He knows I'm not the same as I was before the hyst and I still "ache" a lot, but I don't go into detail. I'm not sure I will for a long while. I have to get thru this summer appearing healthy and happy and on the "mend".

Jean....I'm glad you got my e-mail. Yes I have had Ovarian Remnant and there really is very little on the web about it. There is more now than there was when I went searching. Please feel free to e-mail me anytime!!!!! I'm currently working on trying to find as many as I can who have/are going thru this. Your input would be Great!!! I know how I felt When it was first discoverd and can well imagine what your thinking.

Thanks so much for the support girls...I must seem like a permanant fixture around here by now... <big sigh>



Dawn
  #5  
Unread 04-11-2003, 08:48 AM
test results...hmmm...new DX

's dawn...i just can't believe another thing is happening to you. i know getting a diagnosis is difficult, but i think it's easier to know what you are dealing with and then you can plan your course of action. please know i am thinking of and praying for you. more 's
  #6  
Unread 04-11-2003, 09:15 AM
(( ))

I don't have any advice but wanted to give you a and best wishes that this passes soon.
  #7  
Unread 04-11-2003, 02:20 PM
test results...hmmm...new DX

((((Dawn)))),
I'm soo sorry about the pain & possible dx of FMS or RA There are several new meds out used to treat RA...unfortunately FMS is another story There is tons of new research being done on it. For the last couple of hours, before coming here, I have been reading some new info I found on it, here it is

  Quote:

What is in the future for fibromyalgia therapy?

The key to unlocking the mystery of fibromyalgia has yet to be found. Research scientists have been studying numerous viruses as potential causes for fibromyalgia. Identification of an infectious agent or toxin which causes the disease may one day lead to a laboratory test which can help doctors diagnose fibromyalgia. Until further research uncovers the exact cause of the disease, specific treatment aimed at a cure remains unattainable.New drugs may be developed that block substance P or nerve growth factor to relieve pain of fibromyalgia. Many fibromyalgia patients can be helped by improved patient education, proper exercise, and medications. With ongoing research, the future will certainly improve for those affected by fibromyalgia. Fibromyalgia At A Glance
Fibromyalgia causes pain, stiffness, and tenderness of muscles, tendons, and joints without detectable inflammation.
Fibromyalgia does not cause body damage or deformity.
Fatigue occurs in 90% of patients with fibromyalgia.
Irritable bowel syndrome can occur with fibromyalgia.
Sleep disorder is common in patients with fibromyalgia.
There is no test for the diagnosis of fibromyalgia.
Fibromyalgia can be associated with other rheumatic conditions.
Treatment of fibromyalgia is most effective with combinations of education, stress reduction, exercise, and medications.
Fibromyalgia Treatment...Methods Using Available Medicines:
http://www.medicinenet.com/script/ma...articlekey=582

Defining characteristics of fibromyalgia:
  Quote:
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. 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. 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.
A 3-year study of 39 fibromyalgia patients showed that the most common response from year to year was "no change" in their condition.
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. 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 .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 The incidence of fibromyalgia patients has not been found to be different between ethnic groups . At least one study has suggested a possible autosomal (chromosome) dominant inheritance pattern to fibromyalgia .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. 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.
Pain:
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 (4). 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
Stress
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 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.
In 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 .
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.
"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 .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)
Rheumatoid arthritis.

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. 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 (such as when appropriate, medications to enhance sleep may be necessary (such as sedatives/hypnotics.

FMS Medications:

Various classes of medications have been evaluated in the treatment of fibromyalgia, including:
triTricyclic anti-depressants
muscMuscle relaxants
Sedatives/hypnotics
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. 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 .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. 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. 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, rheumatoid arthritis, or other conditions.
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 (46). 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
/topics/cd/fib/manage/fib_man06.html#sed

Fibromyalgia - 3 Things Patients Can Do For Themselves:


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.

Exercise.
Aerobic activities that 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.
http://www.medicinenet.com/script/ma...697&amp;page=2

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, 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 lipolymyositis 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.
http://www.medicinenet.com/script/ma...ticlekey=18781
www.rheumatology.org

Sciatica pain vs fibromyalgia pain:
http://www.medicinenet.com/script/ma...ticleKey=20005

American Autoimmune Related Diseases Association, Inc.
http://www.aarda.org/

Fibromyalgia Studies and other Important Info: http://members.tripod.com/~Catnip100/FMS.html

What Is FMS?
FMS or Fibromyalgia Syndrome is a condition affecting over 3.5 millions Americans and millions more worldwide. FMS is characterized by widespread pain, fatigue, and related symptoms. There is no apparent cause as to its origin, although there are many theories. A physician usually basis a diagnosis upon the American College of Rheumatology Criteria. There is no cure, but symptoms can be modified through treatment programs.

Treatments may include medication, physical therapy, exercise, daily living adjustments, and non-traditional therapies such as chiropractic, acupuncture, and massage.

Increasingly, information has become available due to increased research and funding and more personally, the Internet. Abstracts, previous research, personal Web pages, doctors, alternative treatments, chat rooms, newsgroups, and political action groups can be found throughout the Web. A wealth of books, newsletters, pamphlets, and other resources can be acquired by mail order.

Alternative names for fibromyalgia include fibrositis and fibromyositis. The term stands for 'inflammation of fibrous connective tissue,' though there is no true inflammation seen in biopsy specimens under the microscope. Connective tissue is supporting tissue of the body, including ligaments, tendons, and muscles. To the unfortunate victim of fibromyalgia, it feels as if these soft tissues are inflamed. Rhuematism? That's what it used to be called, but today it is known as fibromyalgia.

Pain is the primary symptom of fibromyalgia. The pain usually starts in one area, such as the neck or lower back, but spreads over time. Most commonly people with fibromyalgia complain of widespread pain and achiness, similar to the symptoms associated with a bad bout of the flu. Sometimes the pain is described as gnawing or burning.

Fibromyalgia is a syndrome of chronic, recurring, diffuse aching and stiffness, especially of the whole back and neck. It is a very common condition, accounting for as many as one in every ten patients visiting medical clinics. It's onset may be either abrupt or gradual. Patients with fibromyalgia develop tenderness in certain distinct soft tissue areas - so-called "trigger points" that, when touched, tend to transmit pain to different parts of the body. The muscles, while not developing spasm as such, are taut. The joints, the hands, the feet feel swollen, even though swelling cannot be seen by others.

In fibromyalgia, there is no development of joint destruction, no crippling or deformity. There is, however, significant fatigue, depression, and nervousness. Fibromyalgia may be primary (meaning that it can occur alone) or it may be secondary to another condition that causes pain or disrupts sleep ...

Fibromyalgia is closely associated with poor quality, unrefreshing sleep--what is also described as non-restorative sleep. Patients with the disease wake up in the morning more exhausted than when they went to bed. This feeling of extreme fatigue does not ease up in a matter of minutes as normally happens; it may persist for hours. Any poor sleep may precipitate fibromyalgia; on the other hand, the disease itself may lead to poor sleep. Since most patients with fibromyalgia have a poor sleep pattern, it is difficult to know which came first, the disease or the sleeping problem.

In one sense, it doesn't matter. As the saying goes, whether the stone hit the jug or the jug hit the stone, it's pretty hard on the jug, and the patient suffering from fibro-myalgia often enters a vicious cycle of poor sleep, fatigue, and pain.

Without knowing exactly what causes Fibromyalgia, practically all physicians currently attempt to simply mask patients' symptoms of the disease with powerful drugs, as their only alternative: Anti-Inflammatory Drugs are among the most commonly diagnosed treatment for fibromyalgia.

This treatment has side effects that include Cortisone Derivatives: POTENTIAL SIDE EFFECTS:
fluid retention, potassium loss, muscle weakness, thinning of the bone with breaking of the bones, ulcers in the stomach and duodenum, pancreas inflammation, thinned fragile skin, 'black and blue' marks on skin, diabetes, poor wound healing, face redness, glaucoma, excess sweating, cataracts, decreased growth in children.

Equally disturbing is that for many, the common, prescribed drugs often do not work very well. All of this information may sound discouraging, but because there are so many sufferers from this disease that it isn't going unnoticed in the medical world. There are many Pain Treatment Clinics and Centers that consist of physicians trained to treat pain and are aware of FMS. Treatment may include physical therapy, steroid injections, psychiatric evaluation, opoid medications, etc.

Unfortunately, there are probably as many pain clinics who will treat you like a "hypochondriac" as there are legitimate well trained personnell. This has been my own observation that to find the right one is to visit them all and find the right one. It shouldn't be that way and there are many pain sufferers out there right now who are helping me gather information on physicians and pain clinics that will actually treat patients with pain.

Hopefully some day soon we won't have to drag ourselves all over the country trying to find a compassionate doctor. If you are one who has found a good pain clinic or doctor, please help the rest of us by letting us know. Your name will be withheld if you like. And information will be given out only to people who personally contact me. Not that I am anyone to judge, but the people out there who abuse drugs are the very reasons why physicians tend to undermedicate pain patients. So until the day comes when it seems best to post all of them, this is how we'll work it.

Medical Professionals Discuss The Current Problems Treating Chronic Pain:

Pain Management: Are Patients Suffering Because of Strict Regulations?

I do believe that most of us physicians prescribe low dosages of narcotics when we do prescribe them and we try to use them for short periods for fear of creating physical dependance in the patient; but we do not get good levels of analgesia. Once the patients start the narcotics for chronic treatments they will get physically dependent (and mentally too) requiring higher and higher dosages because of the tolerance phenomenon. We feel that we are regulated by so many groups of peolple that someone at some point is going to make an inquiry and require an explanation for it. On the other hand there is a real fear of complications such as interactions with other meds, mental changes, respiratory depression, gastritis and GI bleed, elevation of liver enzymes, risk of suicidal attempts or overdose, ileus mimicing obstruction and constipation that we use them as a last resort. Another reason is... restrictions in the formulary of the HMO or the insurance.

The fear for a misinterpretation that we might be "helping somebody to die sooner than if they were more alert and less sedated " is real. We need more clear guidelines.

I have the feeling that even low dosages of narcotics in liver failure or respiratory failure may precipitate death.

The problem we face is that pain threshold is subjective. We do not have an objective measurement of pain. Sometimes it is very difficult to assess whether or not the pain is real or exaggerated by the patient. Chronic back pain is an example in young patients.

In conclusion...we need more freedom to use higher doses of narcotics more often for people with terminal disorders and at the same time cooperation among physicians to support each other in the judicious use of narcotics to control chronic pain when other alternatives do not help.
P H, MD

Certainly they do suffer, because police-like regulations have replaced medical judgement. Such regulations can hardly be changed by doctors, so let's find some reasonable arguments (I emphasize "reasonable," not exclusively evidence-based). I suggest PET studies of pain perception should serve to justify opioid use (and eventually, other pain relievers too) -- that is, through PET+MRI visualization of neuronal systems activated while patients experience pain. Certainly, image patterns associated with acute pain or other forms of chronic pain will appear different.
HG, MD, PhD
C L

My license to practice medicine has been placed in probationary status by the State of Washington Medical Quality Assurance Commission (formerly Medical Disciplinary Board), for over-prescribing narcotic analgesics to 4 patients with chronic, nonmalignant pain. Three of the four patients are deceased, two by suicide when their narcotic analgesics were discontinued and one due to congestive heart failure. This action was taken, not as a result of patient complaint, but from a complaint registered by an anonymous pharmacist. As a result of the limitation placed on my license, I have been terminated by three insurance plans, comprising 35% of my practice, lost my eligibility for Family Practice recertification, and lost a part-time position as medical director.

I have never been named in a malpractice suit, never been previously censured by any professional organization, and have the continued support of my patients formerly treated for chronic pain with narcotic analgesics.

My livelihood is being taken away because of compassionate, well-documented care of patients with FDA approved medications which were not diverted but used for the relief of intractable and verifiable chronic pain. This is not due to a lack of education regarding the proper use of narcotic analgesics. Regulation has destroyed my career and put fear into my colleagues who are wisely, if not humanely, terminating their narcotic-prescribing practices for other than acute or terminal pain.

MY, MD
Pacific Sports Medicine

Opiates, when administered for pain and symptom control, and not for psychological management, are most effective in ensuring the quality of life of individual's suffering life threatening illnesses. Continuous assessment of the patient's problems and appropriately titrating the opiates will ensure their comfort.

B P, RN


  Quote:
Diagnosis
Diagnosis

Since FMS is a syndromic diagnosis, any patient who fits the diagnostic criteria of chronic, diffuse aching with tenderness in at least 11 of 18 characteristic locations (Table 3) has it by definition. It is not possible to accurately diagnose FMS without knowing how to do a tender point examination. It cannot be accurately diagnosed by exclusion. One would expect medical students to have been taught in physical diagnosis how to examine for a disorder that accounts for more than 5% of a primary care practice but lamentably this is not yet the case in most medical schools. If a patient has typical symptoms of FMS (Table 2) but does not meet the tender point criterion, a diagnosis of "possible FMS" may be assigned and a therapeutic trial of standard treatment offered. Tender points should be looked for again on a return visit as they may be more evident on some days than others.

Although there have been many abnormalities of laboratory and other tests reported in FMS, none is sufficiently sensitive nor specific to be useful diagnostically, so routine studies are not indicated. Patients who haven't recently had a general medical evaluation should as part of the workup, and other tests should be ordered when the history or exam raises a question of something other than FMS. In older patients a sedimentation rate may be useful to exclude polymyalgia rheumatica. In patients with other symptoms of hypothyroidism, thyroid studies should be done.

The current syndrome definition may not be the best one possible (Wolfe 1993). It has been argued that tender points have been over-emphasized, probably because historically rheumatologists have been more involved in the diagnosis and treatment of FMS than other specialists. In many patients who meet the criteria for diagnosis for chronic fatigue syndrome, the only difference between them and a typical FMS patient is the degree of pain. Some of these patients followed over time will subsequently develop tender points and then fit the criteria for diagnosis of FMS. 70% of patients with FMS meet the CDC criteria for CFS (Buchwald 1987) and two thirds of patients with CFS meet the ACR criteria for FMS (Goldenberg 1990b). It seems unlikely that these patients have two separate disease processes. Perhaps dividing these two groups of patients on the basis of whether or not they have prominent pain is as artificial as division on the basis of prominence of any of the other twenty or so associated symptoms.

On the other hand, we are to some extent stuck with the current syndrome definition because it is these patients on whom all the important studies have been performed. If the syndrome definition is altered, we can't be certain that all of these results still apply to the new syndrome. This problem will disappear once we know the true etiology and can make an etiologic rather than syndromic diagnosis.

Treatment
Controlled studies have shown that amitriptyline (Goldenberg 1986, Jaeschke 1991), cyclobenzaprine (Quimby 1989), alprazolam (Russell 1991), aerobic exercise (McCain 1988), and other interventions to be discussed later are of benefit in treating FMS, but the percentage of patients responding to each alone is small. When gentle daily aerobic exercise, a consistent bed time with adequate amounts of sleep, and one of several medications to improve deep sleep are combined, as expected more patients improve. This approach has not yet been studied rigorously, but in an unpublished retrospective review I found that 30 of 36 patients (83%) had improved substantially with it, many of those to the point of having no aching most of the time. Trazodone, diphenhydramine, carisoprodol, and doxepin have similar effects on deep sleep and are also widely prescribed for sleep in FMS, but have not yet been studied in controlled blinded trials. Cyclobenzaprine and diphenhydramine are pregnancy category B and thus preferable in women who are pregnant or attempting conception. Alprazolam is pregnancy category D and so should be avoided in these patients.
TREATMENTS (Medication and Other Treatments)
Medications effective in the treatment of FMS appear to work mainly through an effect on deep sleep (Goldenberg 1986). They should be started at the lowest possible dose and increased every few days to a week to maximum relief of daytime FMS symptoms without unacceptable side effects. I allow patients to fine-tune the dose themselves. The starting doses and ranges of several medications useful in the treatment of FMS are listed in Table 1 in roughly the order I tend to try them. Amitriptyline is an effective medication for FMS but it has frequent daytime side effects attributable to its long half life such as weight gain, dry mouth, and cognitive impairment, so I usually start with the shorter-acting medications.

It is often necessary to try several different medications in succession and sometimes in combination before finding a regimen that works well. Tolerance often develops to the sedative effect of many of these, necessitating one or two dose increases after an initial good response to maintain efficacy. When switching from one medication to another, I recommend adding the second while continuing the first to try to maintain sleep quality and avoid exacerbating FMS symptoms unless problems with the first medication preclude this approach. Once improvement is noted or if side effects on the combination develop, the patient is instructed to begin tapering the first medication slowly. If it is necessary to taper the first medication while increasing the second, dose changes should not be made in both medications at the same time. Leaving a few days between an increase in the dose of one medication and a decrease in the dose of another makes it possible to tell whether it is the withdrawal of the first medication or the addition of the second that is causing any problems that develop.

Imipramine, steroids, and non-steroidal anti-inflammatory drugs (NSAIDs) have all been found to be no better than placebo for FMS (Goldenberg 1993). While NSAIDs might be expected to be helpful if only for the analgesic effect, their tendency to cause some insomnia may cancel out the expected benefit. Narcotics and benzodiazepines other than alprazolam block stage 4 sleep and so should be avoided. While they may help symptomatically, they often make the patient feel worse the next day and may prevent her from ever being able to get to the point of being pain-free most of the time. Tramadol and acetaminophen do not seem to interfere with sleep and are therefore a better choice for analgesia.

Fluoxetine was found in one study to be ineffective except to symptomatically treat associated depression (Wolfe, 1994). A second study found it effective, especially in combination with amitriptyline (Goldenberg 1996), but this may have been because fluoxetine increases amitriptyline levels which weren't monitored. A second serotonin re-uptake inhibitor, citalopram, was ineffective for FMS symptoms (Nxrregaard 1995).

There are many other unstudied "alternative" drug and herbal treatments, some of which may in the future be proven effective in controlled studies. I do not recommend these since they are as yet unproven scientifically and may have unrecognized toxicities, but I have given up trying to dissuade patients from trying them as long as it is not in place of conventional therapy.

Conclusion:

FMS is a common, chronic, and if untreated, often disabling disorder of unknown etiology associated with
neuroendocrine and immunologic changes and disordered deep sleep. Most patients can be helped with a
combination of medication, exercise, and maintenance of a regular sleep schedule. Think of this condition in any
patient with a complaint of aching and tiredness and look for associated symptoms and tender points to confirm
the diagnosis. The common misconceptions that FMS is a psychosomatic or somatoform disorder, that it is
untreatable, that it is a diagnosis of exclusion or a "wastebasket" diagnosis, and that most FMS patients are
hypochondriacs or whiners are unfounded and insupportable.

Associated signs and symptoms (Wolfe 1990).
  • widespread pain 97.6% of patients
    tenderness in 11/18 tender pts 90.1
    fatigue 81.4
    morning stiffness 77.0
    sleep disturbance 74.6
    paresthesias 62.8
    headache 52.8
    anxiety 47.8
    dysmenorrhea history 40.6
    sicca symptoms 35.8
    prior depression 31.5
    irritable bowel syndrome 29.6
    urinary urgency 26.3
    Raynaud's phenomenon 16.7
    Other commonly reported symptoms include dizziness, trouble
    with memory and concentration, rashes, and chronic itching
    (unpublished observations).

Table 3: Location of tender points (Wolfe 1990).
  • suboccipital muscle insertions at occiput
    lower cervical paraspinals
    trapezius at midpoint of the upper border
    supraspinatus at its origin above medial scapular spine
    2nd costochondral junction
    2 cm distal to lateral epicondyle in forearm
    upper outer quadrant of buttock
    greater trochanter
    knee just proximal to the medial joint line

To meet ACR 1990 diagnostic criteria for fibromyalgia, digital palpation with an approximate force of 4 kgs.
must produce a report of pain in at least 11 of these 18 tender points. Other areas can be tender as well. The
tenderness should be focal rather than diffuse. Tender points must be present on both sides of the body, above
and below the waist and in the midline. Widespread pain must have been present for at least 3 months. Some
accept a diagnosis of fibromyalgia with fewer than 11 tender points if several associated symptoms from table 2
are also present
Good Luck ((Dawn)) Pls keep us posted on how your doing
((((hugs))))
  #8  
Unread 04-11-2003, 08:02 PM
test results...hmmm...new DX

Wow!!!


Thanks Sheri!!!! I'll be busy reading for awhile!!!!


  #9  
Unread 04-16-2003, 01:52 AM
RA

Big to you! I know right now it seems like a bit much to handle, but believe me I know from living with RA that it is manageable.

I had a sudden onset of RA after I had a miscarrage when I was 27 yrs. old (I am 46 now) I went from being in really good shape to swollen very sore, joints where I was barely able to walk down stairs! My RA tests were neg. for a long time, but I was diagnosed as having RA. Over the yrs. I have had positive tests and neg. From my xrays, I definitely have RA. Many people do test neg. for it, who actually do have it.

My advice is read, read, read, and find a good specialist. The best thing you can do for yourself is understand your condition and help make educated decisions as to your treatment. Also, keep a positive attitude. Whatever your diagnosis, a positive attitude is so important. I have had many ups and downs, mine is very severe. I am now taking 10 very potent meds a day and have been for a long time. Good news is, I can move with minimal pain and live a pretty normal life. I walk 3-6 miles approx 4 times a week, when there's no snow. Its important to keep moving. I do have flare ups sometimes and have to deal with it but if you have RA, with the right combination of anti inflammatories & the new meds they have out now, it is manageable. It may take some time to find the right combination but I'm living proof that it can be managed in time.

I hope things get better for you soon!

Debbie
  #10  
Unread 04-16-2003, 09:39 PM
test results...hmmm...new DX

Hi Toolgirl,

Just wanted to add my concern. I'm sorry this is on your plate. It's going to be a long summer...hard on you to keep it all in. Maybe too hard? Bless you,
Reply

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