Fibromyalgia

and

Myofacial Pain Syndrome

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What is Fibromyalgia Syndrome?

Hi. . .

My Name is Fibromyalgia, and I'm an Invisible Chronic Illness. I am now velcroed to you,....for life.

Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause severe pain or, if I'm in a good mood, I can just cause you to ache all over. Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now!

I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal.

Oh, yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away, too.

You didn't ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma.

Well, anyway, I'm here to stay!

I hear you're going to see a doctor who can get rid of me. I'm rolling on the floor, laughing. Just try. You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day.

Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of them will say things like "Oh, you are just having a bad day" or "Well, remember, you can't do the things you used to do 20 YEARS ago", not hearing that you said 20 DAYS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a "Normal" person, and can't remember what you were going to say next!

In closing, (I was hoping that I kept this part a secret), but I guess you already found out. . . the ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia. ..except the minority who have support from their immediate family; some get it from their spouses, and then again.......sometimes, not!

Others spend years explaining and re-explaining to siblings, children, neighbors, and so on, only to find that they are really non-believers. And, yes.....there are even *medical professionals* who don't believe I exist. But, I do..........and, one day they will see the light. Some will even be afflicted.

Now,.....YOU know *why* they call ME the *Invisible Disease!*; and, if you don't yet because you are newly diagnosed, no doubt you will encounter the disbelief and sarcasm sooner or later......so, brace yourself!! I am real.......I DO exist. At least, you, the afflicted, knows this! You feel the pain every day, with every breath. Your mission, if you choose to accept, is to seek the best medical care you can find, because you are going to need it!! Stand up for yourself, and ignore the non-believers. They are not afflicted nor are they affected by your pain and anguish, so discard them, and move on to those who will help you.

I guess you figured out already......we're roommates......we're a team! We might as well find a way to get along with each other.....somehow. I only wish we could have met under better circumstances.

In the words of *Sonny & Cher*, "I Got You, Babe

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FMS (Fibromyalgia Syndrome) is a widespread musculoskeletal pain and fatigue disorder for which the cause is still unknown. Fibromyalgia means pain in the muscles, ligaments and tendons -- the fibrous tissues in the body. FMS used to be called fibrositis, implying that there was inflammation in the muscles, but research later proved that inflammation did not exist.

Most patients with fibromyalgia say that they ache all over. Their muscles may feel like they have been pulled or overworked. Sometimes the muscles twitch and at other times they burn. More women than men are afflicted with fibromyalgia, but it shows up in people of all ages.

To help your family and friends relate to your condition, have them think back to the last time they had a bad flu. Every muscle in their body shouted out in pain. In addition, they felt devoid of energy as though someone had unplugged their power supply. While the severity of symptoms fluctuate from person to person, FMS may resemble a post-viral state and this is why several experts in the field of FMS and CFS believe that these two syndromes are one and the same.

Symptoms and Associated Syndromes:

Cerebral - Fatigue, irritability, nervousness, depression, impaired memory and concentration (fibrofog), apahty, frequent awakening during the night, nonrestorative sleep, blurring of vision, dizziness, and headaches (often called migraines when they are sufficiently intense).

Musculoskeletal - Widespread, aching pain and stiffness in muscles, tendons, and ligaments, which are often worse upon awakening. Pains can assume any form of intensity, such as throbbing, burning, stabbing, stinging, grabbing, or any combination of these. Numbness of the extremeties or face and tingling anywhere are usually from contracted structures pressing on nearby nerves. Temporomandibular joint pain, possibly with difficult chewing, and exruciating facial and head pain originating in the neck are likewise common complaints. Muscles can often be seen twitching, and the restless leg syndrome can make it impossible to find a comfortable spot. Patients also complain of feelings like electrical impulses in their muscles, and a feeling of general weakness.

Dermal - Crawling feelings, itching, rashes (many varieties), burning, and sometimes swollen and hot-itching palms and soles of feet. Patients can have patches of pimples, and perspiration can be both pungent and irritate the skin.

Gastrointestinal - (fibrogut) irritable bowel syndrome that includes gas, pain, bloating, constipation alternating with diarrhea, and sometimes, nausea or hyperacidity.

Genitourinary - Vulvodynia, which includes vulvitis (raw, irritated, burning vaginal lips) and vulvar pain, vaginal spasms or cramps, burning discharge, increased menstrual and uterine cramps, painful intercourse (dyspareunia), repeated bladder infections, pungent, concentrated urine, and chronic interstitial cystitis.

Miscellaneous - Excessive nasal congestion and mucus, brittle nails, inferior hair quality and dryness, dry, scalded, or metallic mouth sensations, eye irritation or blurring with a discharge or burning tears, and transient ringing in the ears or other sounds. Dizziness and true vertigo arise in the middle ear. Patients often complain of increased sensitivity to sounds, bright light, smells, and certain chemiclas.

Pain,fatigue, Sleep disorder, Irritable Bowel Syndrome, Chronic Headaches, Temporomandibular Joint Dysfunction Syndrome, Multiple Chemical Sensitivity Syndrome, Painful menstrual periods, chest pain, morning stiffness, cognitive or memory impairment, numbness and tingling sensations, muscle twitching, irritable bladder, the feeling of swollen extremities, skin sensitivities, dry eyes and mouth, frequent changes in eye prescription, dizziness, and impaired coordination can occur.

Possible Causes:

The cause of fibromyalgia and chronic fatigue syndrome remains elusive, but there are many triggering events thought to precipitate its onset. A few examples would be an infection (viral or bacterial), an automobile accident or the development of another disorder, such as rheumatoid arthritis, lupus, or hypothyroidism. These triggering events probably don't cause FMS, but rather, they may awaken an underlying physiological abnormality that's already present in the form of genetic predisposition.

Common Treatment:

Traditional treatments are geared toward improving the quality of sleep, as well as reducing the pain. Because deep level sleep is so crucial for many body functions, such as tissue repair, antibody production, and perhaps even the regulation of various neurotransmitters, hormones and immune system chemicals, the sleep disorders that frequently occur in fibromyalgia are thought to be a major contributing factor of the symptoms of this condition. Medicines that boost your body's level of serotonin and norepinephrine -- neurotransmitters that modulate sleep, pain and immune system function -- are commonly prescribed. Examples of drugs in this category would include Flavil, Flexeril, Sinequan, Paxil, Serzone, Xanax and Klonopin. A low dose of these medications may be of help. In addition, nonsteriodal, anti-inflammatory drugs may also be beneficial. Most patients will probably need to use other treatment methods as well, such as trigger point injections with lidocaine, physical therapy, acupuncture, acupressure, relaxation techniques, osteopathic manipulation, chiropractic care, therapeutic massage, or a gentle exercise program.

What is the prognosis?

Long term follow-up studies on fibromyalgia syndrome have shown that it is chronic, but the symptoms may wax and wane. The impact that FMS can have on daily-living activities, including the ability to work a full-time job, differs among patients. Overall, studies have shown that fibromyalgia can be equally as disabling as rheumatoid arthritis.

The effect it has on me and how it all started:

In 1992 I went to school to be an Automotive Technician...in other words a mechanic. I finished in November of 1992 as one of the top 5 in my class. I was one of the lucky few who were hired on by a Dealership and I loved my job. Well, for 3 month that is. In January of 1993 I started having severe pain in my arms and legs and could do my job only by taking Ibuprofen like they were candy. I didn't want to give in, thinking I would get used to the work and that it was the work causing the pain. After all, I HAD seen this type of pain before, just not as severe. So I continued to work while in severe pain. Every night I would come home and just plopp on the couch. I wouldn't even move my arms, walk, or do anything else, cause it would hurt too much. I finally couldn't take it anymore and went to the doctor. He checked me over some and then diagnosed me with Mayofacial Pain Syndrome and gave me more Ibuprofen. He told me it was chronic and I had to deal with this pain for the rest of my life. Ouch!!

There went my job. I had to quit! I felt like a failure and did not tell them what was going on, but told them it was a family matter...I didn't want to be seen as some woman who couldn't do a man's job. After 4 month of taking Ibuprofen I developed an ulcer I had to deal with for over a year until they finally changed my medication and it disappeared. During this year of ulcer problems however, my muscle pain left. It was probably due to my then healthy eating habits, for I had switched to an organic food source, stopped drinking soda almost completely and tried to live healthy overall. I labled the doctor as dumb for telling me I had to deal with it my whole life. In 1995 I divorced my second husband and didn't have enough money to live off of organic food, plus I went back to my nasty habit of drinking soda all the time. Shortly afterward, I had another short episode of muscle pain that only lasted 3 month and once again vanished into thin air. I again had altered my eating habits of fear of getting another ulcer. Slowly however, I went back to my normal eating habits after I didn't have to take any more medication. Since September 1999 I have been back on medication on and off. The doctors here in Wisconsin say this is Fibromyalgia which is fairly close to Mayofacial Pain Sydrom, but didn't change my diagnosis at this time. The pain had started again in August 1999 and Ibuprofen wouldn't help anymore...so they tried Naproxyn , which helped even less. Then they put me on Relafen which seemed to work pretty good. In the beginning it helped so good that I thought FMS had once again vanished and I quit taking the meds, but found out that the pain still existed. Nowadays the Relafin doesn't help much anymore either, so I quit taken all medications for a while. I sometimes take over-the-counter remedies. In November 2000 I went back to my Doctor and was officially diagnosed with Fibromyalgia. At first she was going to put me on a low dosage of Anti-Depressant for the pain, but I did not want to take an anti-depressant anymore... I had bad experience with two of them. She then tried to give me Vioxx, but my insurance wouldn't pay for those, and I didn't want to spent money to buy them every month. Nowadays I'm glad I didn't take them because of what they found the Vioxx does to people. Then she gave me Celebrex which didn't work very good either.The cold weather was really hurting me in winter, but then I started feeling better. Some days I hardly had any pain and wouldn't take anything. Other days I can't imagine living without some type of pain medication. I finally gave in and tried the low dose of Anti-depressant when the pain started getting worse again, but only found myself really tired with no pain-relief instead of having energy and pain. I haven't been complaining to my doctor lately. However, I'm constantly working on bettering my diet and incorporating more exercise as well and am hoping that once again the symptoms of FMS will vanish like they did before. I have researched FMS a while now and have found a link between FMS sufferers and a high-carbohydrate diet, meaning their symptoms lessened or dissappeared when eating according to "The Zone". I believe it's worth a shot and I'm working my way toward this.

At the moment (January of 2005) I'm actually pretty much in remission. I hurt every great once in a while and a Tylenol usually takes care of the pain. I found great relief from "cracking" and have been going to the Chiropractor on a regular basis. I also quit all caffeine and am trying to quit all sugary drinks at the moment.

Updating this now in 2010, I'm still drinking the sugary drinks and I'm back on caffein as well.. still trying to dump the habit though. I think I have found a link that doctors don't seem to want to know about. I have widespread tendonitis.. I mean all over my body... sometimes on my fingers, my shoulder, my wrist, my elbow, my knee, my ankles.. just everywhere... it comes and goes... Tylenol Arthritis helps a little bit... Neuralgen helps a bit more... I don't have many muscular aches on a regular basis anymore though. Cold wet weather and changing weather still does me in from time to time, but I still swear on the healthy eating and Chiropractic visits.

Updating again. It's February 2017. I'm still suffering from the bodywide tendonitis. Still having muscle pain. I now have arthritis pain added on, especially in my shoulders. I'm not taking a whole lot of meds... I feel they're all not really helping or give me so many side effects I can't stand it. I don't drink soda anymore. As a matter of fact, I pretty much just drink water, 3 cups of coffee and a cup a milk on most days. If I'm really tired it ends up being 4 cups of coffee. Occasionally I have a glass or two of wine (the other day it was 4..oops). As far as eating... I try to eat healthy. Fast Food restaurants see me less than once a month. Not only doesn't that stuff taste good to me anymore, but I think of the crap that's in that food and just really don't want to subject my body to it. I hate being in pain all the time. I try to ignore it! A LOT! It works most of the time. I still go to the Chiropractor on a regular basis (twice a week) and I do quite ab it of exercise. I tap dance once a week and I walk my dog most days. I also participated in a 5 mile walk/run in November. I've been trying to work myself up to running that stretch, but now that it's winter, I'm not doin that much running, just walking. I go to Zumba whenever I get the chance (probably no more than once or twice a month) and I wish I could find a partner to learn rock'n'roll dance with (if you're a guy reading this and you're close to La Crosse and love to dance too, then let me know). Anyway, so now I'm going to try and apply for Social Security Disability Income, due to the fact that even only working two days makes my shoulders hurt to a point where I have to take meds.. I HATE meds!!! We will see what the next few years have in store for me!

I will write more as I'm going along to better health. I also read a link between a new form of polio and FMS/CFS.

Check out The Fibromyalgia Advocate

Nowadays, I do not feel like my life is disabled by FMS only hindered at times, but back in 1992 it was disabling. There are a lot of good books out on the subject and it helps to be informed.

For more information please visit the following sites:

Fibromyalgia Foundation
Fibromyalgia Symptom Check List
New Faces of Polio

Some other Opinions and Remedies

Do regular stretching exercises.
Play wall ball. (Tennis ball acupressure). Place a tennis or lacrosse ball on a trigger point and apply pressure by leaning against a wall or lying on the floor with the ball between your body and the firm surface. When you compress the trigger point, liquids in that area are forced out. When the pressure is lifted the blood and other body fluids rush back in and flush the area, bringing needed oxygen and nutrients to the tissues.

Epsom Salt Baths:

Helps treat pain if you soak in hot bath.

NADH:

This compound controls pain and muscle spasms. 5 to 10 mg each morning on an empty stomach; take with 8 ounces of water.

Malic Acid and Magnesium:

They help muscles use glucose properly.
300 mg malic acid and 200 to 300 mg magnesium. Both 3 times per day.

5-HTP:

Helps the pain and insomnia by increasing serotonin levels.
50 to 300 mg per day.

SAM-e:

Helps depression and pain.
200 to 1,600 mg per day.

Coenzyme Q10:

Helps boost oxygen supplies to muscle tissue.
60 to 400 mg per day.

Grape-seed Extract:

Helps to inhibit inflammatory response, the chemical response responsible for pain.
50 to 300 mg of PFC's per day.

Devil's Claw:

It's an analgesic and anti-inflammatory.
200 to 800 mg per day of root extract containing 1.5 percent harpagoside content. Do not use devil's claw if you have gastric or duodenal ulcers, or if you're pregnant or nursing.

White Willow Bark:

Reduces pain and inflammation, but does not irritate stomach.
Up to six 400 mg capsules daily, or 3 cups of tea per day (steep 1/2 to 1 teaspoon of powdered bark in 1 cup of hot water for 10 to 15 minutes).

Ginkgo:

Brings more oxygen to muscle cells.
60 to 180 mg per day of product standardized to 24 % flavone glycosides.

Cayenne:

Can help relieve pain and boost circulation to tender muscles. The heat you feel distracts your brain from the pain signals that other nerves are sending. Begin with a medium to low strength and work up; follow the manufacturer's recommendations on how frequently to apply.

St. John's Wort:

Eases mild to moderate depression and helps treat sleep disorders. Up to 900 mg of an extract containing 0.3% hypericin per day, in divided doses.

For Chronic Fatigue:

Siberian Ginseng:

up to 9 400 to 500 mg capsules per day, or 20 drops of tincture up to 3 times per day.

Echinacea:

60 drops 3 times per day.
Take two weeks followed by a one week break.

Astragalus:

8 or 9 400 to 500 mg capsules each day or 15 to 30 drops of tincture two times per day.

Reishi:

Up to 5 420 mg capsules per day, or up to 3 1,000 mg tablets up to 3 times per day.

Licorice:

Take 2,000 to 3,000 mg of licorice root twice daily. Do not take for longer than six weeks, if you have high blood pressure or a disease of the thyroid, kidney, liver, or heart, or if you take diuretics.

Lomatium:

Follow the manufacturers recommendation.

Lemon Balm:

1 cup of tea per day ( steep 1/2 to 1 teaspoon of dried herb in 1 cup of hot water for 10 to 15 minutes), or take 15 to 40 drops of tincture up to three times per day.

St. John's Wort:

1 cup of tea per day (steep 1/2 to 1 teaspoon of dried herb in 1 cup of hot water for 10 to 15 minutes), or 15 to 40 drops of tincture up to 3 times per day.

Valerian:

If sleeplessness due to anxiety is a symptom, valerian can be an important help. It induces sleep as reliably as strong pharmaceutical sedatives. Take 1 cup of tea (simmer 2 teaspoons of dried, minced root in 2 cups of water for 10 to 15 minutes), or take one 150 to 300 mg capsule standardized to 0.8 percent valeric acid, or 300 to 400 mg in nonstandardized capsules, or 1/2 to 1 teaspoon of tincture in water.
Take 30 minutes before bedtime.

Fatigue Aromatherapy:

4 ounces sweet almond oil
15 drops lemon essential oil
4 drops eucalyptus essential oil
1 drop each cinnamon, peppermint and benzoin essential oils
Combine Ingredients.
To make bathoil, follow same formula but sue 2 ounces of almond oil instead of 4.

Energy Boosting Apple-Strawberry Smoothie

2 apples
1 banana
1/4 cup fresh or frozen strawberries
1/2 cup vanilla yogurt
1 tsp lemon juice
1/2 cup ice
Dash of cinnamon
Process first 6 ingredients. Sprinkle with cinnamon. Drink slowly.

Nerve Pain Tincture:

1 teaspoon each tinctures of Saint-John's-wort flowers, skullcap leaves, fresh oats and licorice root 1/2 dropperful each tinctures of ginger rhizome and vervain leaves. Combine ingredients. Take 1 dropperful every half hour, as needed during an emergency. To relieve chronic pain, take 2 to 4 dropperfuls a day.

New Findings

We now know that chronic fatigue syndrome is not a new disease, but simply an "aborted form" of the more serious paralytic polio.

CFS can start with ordinary viral infections, such as those that cause respiratory infections like the common cold and flus. There are 2,300 viruses which can cause a cold or flu and if one of those hits you and your body isn't able to get rid of it, then you have a chronic infection. In CFS, we often get hidden viral, parasite, and yeast infections which are results of a weakened immune system.

A flu virus may contribute to Fibromyalgia
In a study of the possible connection between flu viruses and fibromyalgia, nine out of ten patients tested positive for antibodies to influenza type A, while three out of ten in an age- and sex-matched second group of people with fibromyalgia tested positive for Influenza B. Influenza A is a viral infection which mainly affects the respiratory and autonomic nervous systems. The sympathetic branch of the autonomic nervous system is associated with arousal and stress, increasing heart rate, blood pressure, and muscle tension would be affected as well. The researchers conclude that influenza A may be implicated in the development of fibromyalgia, the primary symptom of which is widespread muscle pain.


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