Fibromyalgia Information

This is a hard-to-diagnose, debilitatng condition that has robbed me of my former life. (I used to work several jobs, do volunteer work, dance, play drums, ride dirt bikes and jet skis, hike, and run my own online information service).

Now I have difficulting walking, standing, sleeping, writing, doing daily tasks... some days I'm lucky if I can just get out of bed, brush my hair, and get dressed.

Millions of people have FMS, mostly women over 30. Recent research seems to indicate a disposition for it in some families. It seems to be triggered by trauma, and affects seratonin (and sleep) as well as the amount of pain neurotransmitter P in the spinal fluid.

The results are devastating and the symptoms are as varied as the individual. FMS can fog your brain, interrupt your sleep, fill you with pain and confusion, cause spasms in your limbs, make you cry in frustration, and even cause suicide.

There are no blood tests for it, but the Arthritis and Rheumatology specialists have developed other tests to help diagnose it.

Most people who have it "look so normal," so most people don't take the condition seriously... unless they get it themselves.

But you have the power to reach millions, to help people understand this condition. Please share this information with others.

Please read the information below, which I collected during my own research, and visit the other FMS websites, then spread the word.

Fibromyalgia is a dysfunctional systemic neurotransmitter condition, with among other things, disrupted adrenal-hypothalamus-pituitary axis. In layman's terms, it is a disorder of brain chemicals, which is characterized by Chronic Diffuse Bodywide Muscle Pain, Stiffness, Chronic Fatigue and Sleep Disturbances, which result in decreased Deep Stage 4 Sleep (the restful/replenishing part of the sleep cycle).

FMS is responsible for the body-wide pain, TENDER points that hurt, but do Not refer pain. This is not a "wastebasket" diagnosis.

Neurotransmitter and endocrine changes occur in fibromyalgia, particularly involving serotonin and the pituitary-adrenal axis, but as these same changes can also be produced by experimental deep sleep deprivation, they are probably secondary rather than primary. They may account for some fibromyalgia symptoms, however. Depression and migraine headaches are associated with low serotonin levels, for example, and often respond to medications that boost serotonin.

Chronic Myofascial Pain syndrome (MPS) is a musculoskeletal chronic pain syndrome. It is Non-Progressive (although it may seem so), Non-Degenerative (although it may seem so), and Non-Inflammatory. It is composed of many "TRIGGER" points (TrP's) which Do refer pain in very precise specific documented patterns. It seems progressive because each TrP can develop satellite and secondary TrP's, which can also form secondaries and satellites of their own. (That is apparently what has happened to me, because it took so long for me to be diagnosed. With treatment by a qualified PT/OT/ or Massage therapist who is knowledgeable in Myofascial, and Craniasacral techniques, TrPs can be "reversed" and minimized or eliminated. MPS is not a "wastebasket" diagnosis.

When occurring together, it is called "FMS/MPS Complex" forms. This is a condition of interconnected symptom spirals that get increasingly, worse, until the spiral is is interrupted. For example: pain causes muscle contraction, which causes more pain, which causes more contraction etc.....The patient can sometimes have muscles that are like cement, due to the myofascial splinting (guarding from the pain).

Any patient with diffuse body-wide aches of long duration, coupled with a sleeping disorder- inability to fall asleep, inability to stay asleep, light sleep, inability to get restorative sleep, and/or waking early should be evaluated for FMS. Patients with specific patterns of referred pain (trigger points), indication of blood vessel, lymph, nerve entrapment or proprioceptive disturbances (balance) should be evaluated for MPS.

Fibromyalgia is not a new fad illness/disease. It was documented as early as 1816, by Dr. William Balfour, and described in 1843 as a type of rheumatism with "painful hard places". Many people with FMS are depressed (who would not be?), when they hurt all over, all of the time, and everyone thinks that it is "all in their heads".

More likely the depression is a result of biochemical synthesis dysfunctions, of chemicals such as Serotonin, and Growth Hormone, which are synthesized in the body during the Deep Stage 4 Rem state of sleep, (or in our cases, not synthesized in sufficient quantities for our systemic needs). Serotonin modulates mood, as well as other important functions. A deficiency of Serotonin probably causes mental fatigue. Low levels of serotonin might lead to depression.

Some of the medications that FMS sufferers are frequently prescribed include antidepressants in lower mg strength than what is prescribed for depression, and/or Serotonin Reuptake Inhibitors to offset these deficiencies.

We still don't know exactly what causes fibromyalgia, but we know more than we did a few years ago. Several good theories have been proposed and much scientific data gathered.

One strong theory links fibromyalgia with abnormal deep sleep. Fibromyalgia patients often note that they are not getting enough sleep or even just staying up an hour late makes the symptoms worse the next day. Abnormal brain waveforms have been found in deep sleep in many patients with fibromyalgia. Also, fibromyalgia-like symptoms and tender points can be produced in normal volunteers by depriving them of deep sleep for a few days.

Low levels of growth hormone, important in maintaining good muscle and other soft tissue health, have been found in patients with fibromyalgia. This hormone is produced almost exclusively in deep sleep, and its production is increased by exercise. Daily exercise has been found to be an important part of treatment of fibromyalgia along with steps taken to improve sleep.

Fibromyalgia is also associated with certain immune system changes, though not of the autoimmune kind seen in some unrelated disorders like multiple sclerosis or rheumatoid arthritis, but rather the immune system appears as if fighting a virus. However,the fact that fibromyalgia does not appear to be contagious argues against an infectious cause.

The Thalamus serves as a relay center for sensory impulses. The significance of decreased circulation in the Thalamus is the "Perception of Pain Impulses it receives and generates". Diffuse body wide pain is one of our most significant symptoms. So there is positive proof that this is Not a Mental disorder, it is very Physical one.

Levels of certain cytokines, a class of immune system hormones, are elevated in fibromyalgia. When these same cytokines are given to patients to treat other disorders, fibromyalgia-like side effects are common. Putting this all together, this suggests that fibromyalgia symptoms may be caused by elevated levels of certain cytokines produced by an immune system which is not functioning normally because of a chronic sleep disorder. This is just one of several good theories that exist.

1. Widespread Pain for more than 3 mo.-- diffuse musculoskeletal pain and fatigue; the presence of musculoskeletal tender points; pain that is often described as aching, burning, throbbing, gnawing, shooting, tingling. It can be localized, generalized, can feel like muscle spasm and can be scattered throughout. It may be migratory, with pain presenting in one or more areas on one day and other areas on another day. Pain is often experienced very quickly after any repetitive movement - even something as simple as holding arms up to brush or comb hair etc.

FMSers have 3-4 times the amount of Substance P in their bodies than normal people. Substance P is the vehicle that carries pain stimuli to the brain. The brain may also interpret the pain improperly and respond inappropriately. What might be experienced as a "tickle", itch or annoyance normally - is experienced as pain in those who suffer with FMS. There are often more pain receptors in FMSers, therefore pain is magnified.

There is Bilateral Pain in various points in areas throughout the body. There are 18 TPR's - Diagnosis of FMS is made if pressure on 11 of these 18 points causes pain. Areas throughout the body may feel "bruised" when touched. The tender point is considered to be positive if an approximate force of 4 kg. of pressure causes pain when applied to the specified points. Widespread pain must have been present for at least 3 months with the associated tenderpoint pain in order for Fibromyalgia to be diagnosed.

2. Sleep Disturbances, NON-Restorative sleep, Morning Mental & Physical fatigue, Morning stiffness lasting greater than 30 minutes. Sleep disturbance/non restorative sleep: may be described as not being able to fall asleep, not being able to stay asleep or more common, "I feel like I haven't slept" may awaken frequently and be unable to return to sleep for some time. May wake up "full" of pain and feel "more tired" than on going to bed.

Due to the lack of Stage 4 sleep, muscle repair does not occur properly and muscles take longer to heal and regenerate after injury, including trauma that is experienced by everyone in day to day life. Micro trauma during exercise is not repaired in FMS patients in the same manner as it is in normal people - thus the muscle stiffness causes much more distress in FMSers and takes longer to subside, therefore exercise is not refreshing but continuously causes pain making patients reluctant to engage in an exercise routine.

There is a disturbance in the sleep pattern and FMSers are not able to enter into stage 4 sleep, thus they awaken frequently through the night when they reach Stage 4. It's almost like the sleep patterns and awake patterns are playing in the brain at the same time. Restful sleep is never achieved. Thus there follows deep aching discomfort throughout the body and the feeling of being exhausted. The shoulders, neck and low back are often the most painful.

3. Nervous System: numbness, tingling, burning, especially in the arms/legs, sciatica, abnormal sweating, intolerance to alcohol, sensitivity to chemicals- including medications, Weight gain or loss, low grade fever, (99-100 degree range).

4. Bone, Joint, Muscles; pain can be localized/diffuse; swelling, chestwall/rib pain, Costochondritis, muscle twitching, spasms, ataxia, cramping.

Temporomandibular Joint Disorder: in many FM patients, problems are encountered because of the abnormal tone in muscles around the joint, not because of abnormalities in the joint itself. (Pain in the face and jaw)

5. Gastrointestinal system: Abnormal appetite-- too much, or too little, trouble swallowing, Nausea, Heartburn, Abdominal pain, Diarrhea, constipation, Excessive bloating and gassiness, Lactose Intolerance, Rectal pain, Irritable Bowel Syndrome.

6. Genitourinary (Reproductive): frequent urination, incontinence, PMS, Severe Menstrual cramping, Irregular menstrual periods, Endometriosis, Sexual dysfunction or decreased interest, difficulty with orgasm, pain with erection.

7. Skin: Dry Skin, hives, itching, Raynauds Phenomenon (coldness/redness, color changes in the hands and feet), Peeling of the skin, reddish rashes on nose and cheeks.

10. Visual problems: (blurred vision), floaties, frequent changes in eyeglass prescriptions.

13. Cognitive (Memory) Deficits: Brain Fog, difficulty with word-finding, losing things, disorientation, acquired dyslexia; attention deficit disorder, calculation difficulties, memory disturbance, spatial disorientation, difficulty with concentration and short-term memory. These things are commonly referred to by FMSers as "fibrofog".

15. Clumsiness: dropping things abruptly, running into things frequently, depth perception problems.

16. Endocrine System Deficits: decreased production of the thyroid, growth hormone, setotonin, melatonin etc...

16. The official definition further requires that tender points must be present in all four quadrants of the body (the upper right and left and lower right and left parts of your body). You also must have had wide-spread, more-or-less continuous pain for at least three months.
Because tender points can fluctuate and vary from day to day, if you don't have "11 out of the 18" on a given day, your doctor may diagnose "possible FMS" and may need to count the tender points again on future visits. Tender points occur in pairs on various parts of the body. Because they occur in pairs, the pain is usually distributed equally on both sides of the body. Tender points can vary from person to person, and are often clustered around an injury site. These clusters can also occur around a repetitive strain or a degenerative and/or inflammatory problem, such as arthritis.

Numerous vague unspecified symptoms that wax and wane and cause fibro suffers to "just never feel good".

FMS patients may bruise more easily than others and experience excessive bruising.

Back Pain: usually low back pain - may be exacerbated by muscle spasms in this area; sacroiliac instability and pain

Joint Hypermobility and Laxity: lax ligaments or what is commonly referred to as being "double-jointed". People who have this condition often ache and are more suseptible to osteoarthritis later in life. Studies suggest that joint hypermobility and fibromyalgia are associated and that the hypermobility can play a role in the pathogenesis or development of pain in fibro.

Postural Changes: shoulders hunched forward or rounded, head thrust forward with neck kinked forward, chest sunken, low back pushed forward causing abdomen to protrude, knees locked, muscles in back of thighs flexed - all a mechanism to find a comfortable position

Carpal tunnel syndrome: numbness, tingling and pain in wrists, hands and fingers. Pain in hands makes writing, typing, wringing out dish cloth etc difficult. Pain when plunging hands into cold water. (also pain maybe experienced on entering the water if swimming in cold water)

Raynaud's -like symptoms - numbness and tingling in the extremities especially in fingers, exacerbated by the cold.

Ridges: may develop in fingernails and toe nails. Nails may split. Nails may break off easily. If they do grow they may curve or curl under.

Restless Leg Syndrome: Aching in legs, especially at night, causes legs to be moved constantly in an attempt to ease the pain or aching.

Muscle and joint aches; Severe muscle weakness; Muscle spasms: may feel like tight knots or charlie horse or lumps. Muscles contract but do not release properly. Muscles apparently may contract without receiving stimulus from the brain.

Nausea: may be caused by overload of pain stimuli bombarding the brain - nausea may also be experienced when moving from a horizontal to a vertical position.

Weight change: -usually gain - a feeling of swelling or puffiness might be experienced. May experience retention of fluid for a few days and then return to "normal". May "feel" swollen even if inflamation and swelling are not actually present.

Hair loss: hair may come out in great "gobs" when hair is combed or brushed. May notice hair coming out when it is being washed as well.

Night sweats: wake up drenched in perspiration, then become very cold and maybe even start to shiver.

Intolerance to cold: muscles contract in response to exposure to cold - cold weather, cold drafts, ice packs etc. (Sometimes referred to as muscle jelling as in jello - jello is fliud and liquid when warm and jells when chilled). Extreme sensitivity to seasonal changes, climatic changes - rain and impending storms. Most Fibro patients find that their muscles respond to the application of warmth but that application of ice packs or cold intensifies pain.

Body temperature fluctuations - hot one minute and cold the next. Perhaps inner "controls" (thermoregulatory system) are out of whack.

Fatigue - can be described as feeling tired to being extremely exhausted after minimal physical exertion. Sometimes a short nap in the afternoon may help relieve the feeling of fatigue, yet some people require frequent rest periods to get them through the day. Sometimes the fatigue can come on suddenly for no apparent reason and can be very debilitating.

Short periods of exertion can require long periods of rest to recuperate. Can be severe and have a sudden onset even with minimal physical exertion. May experience sudden debilitating fatigue that makes it necessary to immediately stop whatever one is doing and go and rest. May be experience as a sheet of fatigue decending over one. It is so debilitating that patients are often left wondering how they can carry on - "too tired to keep on living"

Lightheadedness; Vertigo; Disequilbrium - impaired co-ordination: misjudge distances - bang into door frames, walk into furniture, walls etc.

Neurogenic inflammation: rashes and hives, inflammatory sensation, with rashes that may be severe, severe itching with inflammation - initiated by nerves.

Alteration of taste, smell, hearing; may be more sensitive to smells, sound, odors, lights, pressure and temperature fluctuations, vibrations and noise etc. - the buzzing from fluorescent lights, hum of computer, buzz of overhead hydro lines may become almost unbearable to an FMSer at times. FMS hyper-sensitizes nerve endings.

Changes in visual acuity: impaired function of smooth muscles used for focus as well as skeletal muscles for tracking. May experience blurred vision &/or double vision. Some people require two or three different eye glass prescriptions as their needs change with the Fibro symptoms. Exaggerated nystagmus: involuntary rapid movement of the eyeball

Dry eyes and mouth: dry mouth can cause dental problems - dry eyes may cause inability to wear contact lens, may cause other visual problems, may require eye drops to keep eyes moist and free from infection. Eyes may be very dry at times and water at other times.

Decreased painful sound threshold. Sometimes normal everyday noises become very irritating. May not tolerate radio or television well.

Ringing in the ears - ringing and sounds like the rolling ocean or whispers may be experieced.

Allergies: Severe nasal and other allergies and patients may also have a deep sinus infection.

Environmental sensitivities may develop, as well as enhancement of medication side effects, or intolerance of medications that were previously tolerated.

Premenstrual Syndrome: swelling, tenderness and lumps in breasts are often experienced with PMS, painful periods as well as mood swings, exaggerated emotional responses etc. etc. as common in PMS.

Fibrocystic Breast Disease: may be experienced by FMSers especially prior to period. Breasts may become very swollen and sore and be full of cysts or lumps that disappear after period.

Interstitial cystitis; Irritable Bladder/Frequent Urination: might be uncomfortable or painful. Also bladders spasms may feel like a bladder infection. (Irritable Bowel Syndrome: alternate between constipation and diarrhea. Frequent abdominal pain, gas and nausea).

Depression: may be reactive or clinical. Often pain and feeling ill all of the time causes the depression. FMSers are depressed because they hurt. THe do not hurt because they are depressed.

Anxiety: may include panic attacks; Emotional lability or mood swings; Irritability

Personality changes: usually a worsening of a previous tendency. People who have FMS sometimes have a hard time accepting their limitations and the loss of the person they "used to be" - they may actually go into the mourning process. Because FMS is an "invisible" sort of illness - and patients often see many Doctors before being properly diagnosed, they often begin to doubt themselves.

Unfortunately there is no cure for FMS, but there is Hope in Educating Yourself about the illness/disease/disability. No one knows exactly what causes it. Speculation is that it may be inherited, another that it is activated by a stressor such as a traumatic illness, accident or an emotional stressor. No one knows for sure. Researchers are just now beginning to work on it.

It has only been in the last 10 years or so that the medical community has actually begun to discover that they were wrong. Actually it really IS all in our heads, but not psychosomatically. ABC's Good Morning America recently showed documented proof that the circulation in the brain (specifically in the area of the Thalamus, Hypothalamic/Pituitary Axis) of a person with FMS, when compared to a "normal" non FMS person was significantly decreased.

Finding the right Doctor who is educated in FMS, as well as its diagnosis/treatment is difficult to say the least, but crucial to your health.

Tender Points of FMS hurt IN PLACE, and are often found in the "18" specified locations. Remember that these are on both sides of the body equaling "18" tender points, however, they can vary some from person to person, and if there was a traumatic cause, tender points may be clustered around the site of the injury, instead of, or as well as in the 18 tender points listed: base of the skull beside the spinal column; base of the neck in the back; top of the shoulder toward the back; breastbone; outer edge of the forearm about 2 cm below the elbow; over the shoulder blade; top of the hip; outside of the hip; and fat pad over the knee.

To get a formal diagnosis of FM, your doctor must find at least 11 of these 18 tender points. However, what is tender on one day may not be on another. Therefore, if you have some number less than 11 but meet the other criteria for FM (widespread pain, muscular stiffness, and difficulty getting restful sleep) you would do well to follow a good regimen for managing FM even though you don't have all the required tender points.

There is Bilateral Pain in various points in areas throughout the body. There are 18 TPR's - Diagnosis of FMS is made if pressure on 11 of these 18 points causes pain. Areas throughout the body my feel "bruised" when touched. The tender point is considered to be positive if an approximate force of 4 kg. of pressure causes pain when applied to the specified points. Widespread pain must have been present for at least 3 months with the associated tenderpoint pain in order for Fibromyalgia to be diagnosed. FMS patients may bruise more easily than others and experience excessive bruising.

Trigger Points (TrP's)of Chronic Myofascial Pain Syndrome REFER pain elsewhere in the body, in specific referred patterns which can be seen in Dr. Devin Starlanyl's Book or Janet Travells trigger Point Manual. TrP's can be active, or latent. Latent TrP's RESTRICT movement, but don't cause pain, until they are ACTIVATED by IMMOBILITY, STRESS, or one of many possible perpetuating factors. (see associated symptoms).

Pain is a large factor in FMS, as well as MPS. The general diffuse aching of FMS should not be confused with the specific sites and other symptomology of MPS. Many people have MPS but do not have FMS, and Many people with FMS do not necessarily have MPS. Some people do have both

With:
1) Medication to improve deep sleep.
2) Regular sleep hours and an adequate amount of sleep.
3) Daily gentle aerobic exercise and stretching.
4) Avoidance of overexertion and stress.
5) Treatment of any coexisting sleep disorders.
6) Patient education.

Medication by itself is of little value in treating fibromyalgia. Successful treatment demands the patient's active involvement in treatment as well as lifestyle changes. Each of the six parts of treatment above is important. If any one is omitted, the chance of significant improvement is considerably reduced.

A. Avoid overexertion -- break tasks down into small activities of an hour or less if possible. Pace yourself. Ask for help.

B. Avoid stress -- Stress also worsens fibromyalgia symptoms. If you have ongoing problems with depression or anxiety, consider seeking help for them from your family doctor or a psychiatrist.

C. Try relaxation techniques -- Relaxation techniques or a chronic pain program can also help lower your stress level and are of proven benefit in treating fibromyalgia.

D. Treat other sleep disorders -- Several other sleep disorders besides insomnia may aggravate fibromyalgia, such as obstructive sleep apnea (the patient snores loudly and has periodic pauses in breathing, after which he starts breathing again with a snort), or periodic limb movements (jerk or kick every 30 to 90 seconds for long periods during the night), are frequent in FMS. Be sure to tell your physician about these problems if you notice them.

E. Nutritional Supplements -- Everyone has different deficiencies with FMS, so supplementation is crucial. In FMS our bodies do not seem to synthesize nor utilize the right chemical balances for homeostasis (stabilized normal body functions); therefore we must supplement with what our bodies are not producing in sufficient quantities for normal functioning. Below you will find a listing of some of the nutritional supplements that are recommended for people with FMS and a short description of why it is necessary for us to use it.
SUPPLEMENT DETAILS

--Vitamin B-Complex
--Biotin
--Vitamin C
--Vitamin E
--Calcium Complex
--Magnesium
--Potassium
--Malic Acid
--Co-Enzyme Q 10
--L-5-HTP (5 Hydroxytryptophan)
--Glucosamine and Chondroitin

F. Linaments or Topical Preparations -- Some FMS patients report that use of topical ointments like Tiger Balm bring relief. Another source of relief is DIT DA JOW, a linament used by martial artists before and after practice or tournaments where they break boards, bricks, etc. This "iron palm linament" is hand made from dozens of herbs, and is said to heal and relieve bruises, spasms, sprains, and pain.

G. Helpful Medications -- This is a partial listing of some of the medications that are helpful.
MEDICATION DETAILS

SUMMARY
FMS is truly a systemic Illness-Not just a form of rheumatism, with nerve and vascular components. Fibromyalgia is NOT a Mental Illness Fibromyalgia is NOT Imagined. Fibromyalgia is NOT Measurable and Fibromyalgia is NOT Observable

Fibromyalgia Is Not -- Lyme Disease, Not a reaction to silicone implants, Not Polymyalgia Rheumatica, Lupus, rheumatoid Arthritis, Systemic Sclerosis, Hypothyroidism, Parkinsonism, Inflammatory Muscle disease, Giant Cell Arteritis, Tendinitis, Chronic Fatigue Syndrome, or Candidiasis.

Fibromyalgia may accompany some of these processes, but they are not FMS in and of themselves.

Symptoms of FMS are often present in a variety of diseases. Some of these include but are not limited to: allergies, blood diseases, cancers, infections, hormonal problems and reactions to drugs, as well as many other processes.

Fibromyalgia is a Distinct Syndrome/Disease, whether occurring alone or with other conditions. The idea of Secondary FMS is no longer Valid.

While fibromyalgia is not curable, most patients with a little work can make it to the point where they feel substantially better most of the time. Even with good results from treatment however occasional relapses are common, perhaps caused by staying up as little as one hour late one evening, skipping exercise for a day, a disruption in your daily routine, increased stress, a storm front moving in, or often for no apparent reason. You will do best if you give in to it when this happens and try to get extra rest. Hot baths and massage may also be helpful at these times. Try not to stop exercising during relapses, even if you have to back off on the amount a little, and continue stretching. Once you have had a period of feeling relatively well, it is usually possible to get back to that point again by identifying what derailed you and correcting the problem.

If you are not one of the lucky few whose primary doctor is knowledgeable about fibromyalgia or at least willing to work with you and learn about it, you should look for a fibromyalgia specialist. Unfortunately, this is often difficult to do. Most fibromyalgia specialists are rheumatologists or physiatrists (physical medicine rehabilitation specialists), but you can't assume that any given rheumatologist or physiatrist will be knowledgeable and helpful. Other fibromyalgia specialists may be internists, anesthesiologists, neurologists, or belong to other specialties.

The best way to find a fibromyalgia specialist is to send for lists of recommended physicians from the national fibromyalgia organizations mentioned above, and also go to a local fibromyalgia support group meeting and ask for recommendations. It is best to do both because the doctor lists are incomplete. Those of you out there who already have good fibromyalgia specialists please let the list-keepers know. A fibromyalgia specialist will be able to perform a tender point exam (without which it is impossible to make the diagnosis accurately), will tell you that it is not possible to cure fibromyalgia but that most patients can be helped substantially, usually will not order a large number of tests, will recommend treatment similar to that described above, and will seem to enjoy treating fibromyalgia.

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