I was in shock for days when I learned that people with FMS have a 40-60 % quality of life, as opposed to someone who doesn’t have it. That certainly explains why I feel the way I do. I was awarded disability for this, and I earned it, trust me. There are some people who think I receive disability because I’m crazy. (It's just my luck to suffer from something invisible). Well, they can talk about me plenty, I really don’t care what they say! I look so healthy, and others cannot seem to understand it when I tell them "I just don’t feel like it." If they could know this phantom desecrator for what it is, only for a day, I’ll wager they’d re-think it, what do you think? ...But I wouldn’t wish this on anyone!! I have always been very active in just about everything that’s physical. Now, I’m lucky to get the floor mopped. I take a lot of medication but it doesn’t really help very much. Truly, I never get a chance to recover from one ludicrous incident before something else bizarre is happening to me! (You wouldn't believe) .
I suppose I do resent the fact that I have to drastically alter my life, and exercise is not an option ---it is a must--- do it everyday, or I will fade away. That’s a fact. I’m not on a pity trip here, because I refuse to let this take anything else from me, and I’m certainly not going to take this laying down . Below is information I gathered from different sources. I’m a writer, but I did not author all of the information below. It’s been very helpful to me, and I hope it helps you too. Well, I said it was brief. Thank goodness I’m an enthusiastic reader, or I wouldn’t know what to do with myself. Please sign my guest book or email me before you go. Your visits are very important. With any comments exchanged, we may be able to help light each other's way. Remember, we are the Champions and WE ARE BAD TO THE BONE!
I’ve designed this page not only for people who are suffering from chronic pain and mental anguish, but for the loved ones who have gone on to the next and most beautiful life. This is for hungry and suffering little children; the families who are missing a loved one; It’s for all the lost soldiers who will never be forgotten, and everyone who has died in vain, and for the homeless. This site is dedicated to everyone who suffers. My heart goes out to you all.
____UPDATE___ I’ve had four very serious surgeries between May 25th, 2000, and May 17, 2001... (that makes four in less than a year. I must be on some kind of a roll)...But guess what folks? I’m still standing, and I adamantly refuse to let go and fall. Although I was born with many virtues, patience wasn’t one of them.... so if I can do it you can too! Spite the devil and smile and don’t EVER give up hope and faith. Keep on keeping on... and believe in your heart that there’s a light at the end of this tunnel...I’m CERTAIN that there is!! I'd like for you to know that I pray for you, though we will probably never meet -- God knows who you are and that’s all that really matters.
____*Another* UPDATE___ (Sept. 2002) Yeah, I’m still sick, got more miseries and diagnoses (some questionable) than when I made this page in 1996- (mental and physical) When I read the stuff I wrote above, much of it actually seems trifling at this point in time. All through the year of 2001, I felt worse than I have since I made this web page... to tell the truth, I felt worse than I have in my entire life. I wrote a novella entitled, “My Life In Lingerie” -truly, I never wore regular clothes- except pajamas. My sister told me I was turning into Howard Hughes...I was doctor hopping (yes, in pajamas) trying desperately to find out if I was terminal; Seriously friends, I truly thought that I was Knockin On Heaven’s Door, and that death was just around the corner. Well, I finally convinced a “doctor” to take some blood tests and found that I was suffering from Hepatitis B! Hell, I WAS dying! (I made that last will and testament I’ve been intending to write up)....I was “heavily infected AND contagious... So, that doctor sent me to another doctor who was an alleged “Hepatitis Specialist,” a Gasrtoenerologist, if you will- .By the time I had my appointment, the Hep. B was totally gone. He took more tests. As it turned out, I was just getting over having a serious case of Hepatitis B. Yes, now it’s completely gone, and I’m recovering nicely. I ask you, how spooky is that? I don’t know how it went away, as I never took any type of treatment for it. I call it Divine Intervention, I pray a lot!!!*** Just one more completely absurd thing, and I’ll let you get on with your surfing. For two years I’ve had dreadfully debilitating pain in the area where my ovaries once were. I’ve had this pain since 2000, just after my total hysterectomy. On MANY occasions, the Gynecologist who did the honor told me it was scar tissue. On my last visit to that particular quack- and I don’t use that term lightly- he suggested exploratory surgery, and I considered it. DUH for me! But! The very next day, I went to the Gastroenerologist and he diagnosed without a doubt, that I have two inguinal hernias, and recently discovered that my hysterectomy was more than probably unnecessary!! I could go on and on about my personal mis- diagnoses, and mal treatment from doctors, but I wont. However, I will give a bit of unsolicited advise. Choose your doctors wisely, and don’t be afraid to ask questions and demand answers, because it’s your RIGHT to know. Do not let them put you off or lead you astray. The irony of this is that I feel OK now, better than I have in a very long time I still have chronic pain and anxiety, & take a lot of medication--- but my mind is made up--- As God is my witness, I won’t ever totally believe another doctor again! Naiveté is out of the question. I’ll keep on finding my own answers, no matter how well they may hide themselves, and I’ll deal with this/these absurdities of life.
* November 2003* YET ANOTHER UPDATE! Well, now it seems as though I have Osteoporosis, and my bones are like Swiss cheese. Seems as thought I've had it for a long time, but nobody caught it. I wonder how much luckier I’m gonna get- I feel as if I’ve been dealt a hand of Eights and Aces, yes indeed. But I'm STILL here. It would be insane to tell you of all the treatment that’s going into that- for the rest of my life no less - but I’ll do it...
Remember, it’s better to burn out than to fade away...I’ll keep my sense of humor and my faith in God because He’s the one Who’s been takin’ care of me all along....***CHECK BACK FROM TIME TO TIME FOR MORE UP-TO-DATE PREPOSTEROUS ADVENTURES IN THE ILLNESS OF 'ALIAS ANYTHING YOU PLEASE.' HAVE A LOVELY DAY***
Fibromyalgia is a common and disabling disorder affecting 2-4% of the population, women more often than men. Despite the condition's frequency, the diagnosis is often missed. Patients with fibromyalgia usually ache all over, sleep poorly, are stiff on waking, and are tired all day. They are prone to headaches, memory and concentration problems, dizziness, numbness and tingling, itching, fluid retention, crampy abdominal or pelvic pain and diarrhea, and several other symptoms.
There are no diagnostic lab or x-ray abnormalities, but a physician can confirm the diagnosis by finding multiple tender points in characteristic locations. Fibromyalgia often runs in families, suggesting an inherited predisposition. It may lie dormant until triggered by an injury, stress, or sleep disturbance. It is closely related to the chronic fatigue and irritable bowel syndromes. Some have suggested that these are all just different facets of the same underlying disorder.
Fibromyalgia has mistakenly been thought to be either an inflammatory or a psychiatric condition. However, no evidence of inflammation or arthritis has been found, and patients with fibromyalgia are now known to be no more depressed or anxious than those with other chronic, painful, debilitating conditions. It is now believed that depression and anxiety when present are more often the result than the cause of fibromyalgia.
There is some evidence that fibromyalgia may be due to an abnormality of deep sleep. Abnormal brain waveforms have been found in deep sleep in many patients with fibromyalgia. Fibromyalgia-like symptoms can be produced in normal volunteers by depriving them of deep sleep for a few days. Low levels of somatostatin, a 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 it's production is increased by exercise.
I should point out though that while this is my personal favorite among the theories of the cause of fibromyalgia, there are several others, and at this time there is probably not a majority of fibromyalgia researchers that supports any one theory.
HOW IS IT TREATED?
Fibromyalgia is difficult to treat, not because treatment isn't usually successful (it is), but because it will take a lot of work, education, and involvement on your part for it to be successful. Simply starting the right medication will have little effect. Successful treatment of fibromyalgia requires:
1) Regular sleep hours and an adequate amount of sleep.
2) Medication to improve deep sleep.
3) Daily gentle aerobic exercise.
4) Avoidance of physical and emotional stress.
5) Treatment of any coexisting sleep disorders.
If any of these five are omitted, significant improvement is unlikely.
Chronic Fatigue Syndrome
June 1998
From:Well-Connected By:Well-Connected
What Is Chronic Fatigue Syndrome?
Chronic fatigue syndrome (also called myalgic encephalomyelitis in England) does not appear to be new. In the 19th century, there were various reports of neurasthenia, or nervous exhaustion; in the 1930s through the 1950s, outbreaks of disease marked by prolonged fatigue were reported in the United States and many other countries. Beginning in the early to mid-1980s, interest in chronic fatigue syndrome was revived by reports in America and other countries of various outbreaks of long-term debilitating fatigue. Over six million patients visits are made each year because of fatigue, although only a very small percentage of these can be attributed to chronic fatigue syndrome. Depression, infections, pregnancy, extreme exercise, sleep disorders, and excessive stress -- these and many other common conditions can lead to feelings of exhaustion. In many instances, fatigue can be relieved with adequate rest. It is important to note that because fatigue can be the harbinger of a serious medical or psychologic problem, anyone who experiences unexplained fatigue longer than one month should see a physician.
If no medical or psychologic problems account for fatigue that has lasted for more than six months and impairs normal activities, experts define the condition as unexplained chronic fatigue. A group of experts have now developed criteria for further differentiating this unexplained fatigue as either chronic fatigue syndrome (CFS) or idiopathic chronic fatigue. (Idiopathic simply means that the cause is not known.) Chronic fatigue syndrome is diagnosed in people meeting the following criteria (if these criteria are not met, then the condition is considered to be idiopathic chronic fatigue):
Four or more of the following symptoms must have been present for longer than six months:
1. short-term memory loss or a severe inability to concentrate that affects work, school, or other normal activities 2. sore throat 3. swollen lymph nodes in the neck or armpits 4. muscle pain 5. pain without redness or swelling in a number of joints 6. intense or changing patterns of headaches 7. unrefreshing sleep 8. after any exertion, weariness that lasts for more than a day
The fatigue must be severe: Sleep or rest does not relieve it; the fatigue is not the result of excessive work or exercise; and the fatigue substantially impairs a person's ability to function normally at home, at work, and in social occasions. Even mild exercise often makes the symptoms, especially fatigue, much worse. The fatigue must be a new -- not lifelong -- condition with a definite time of onset. For instance, many patients with chronic fatigue report having had a flu-like illness that triggered the symptoms. (In one study, 20% reported chronic fatigue following a flu.) Often, the condition first appears as a viral upper respiratory tract infection marked by some combination of fever, headache, muscle aches, sore throat, earache, congestion, runny nose, cough, diarrhea, and fatigue. Typically, the initial illness is no more severe than any cold or flu. The symptoms must persist. In ordinary infections, symptoms go away after a few days, but in CFS, fatigue and other symptoms recur or continue for months to years. Many patients experience symptoms as recurring bouts of flu-like illness, with each attack lasting from hours to weeks.
This Fibropedia is a collection of sniglets, words that should have been words, as created and defined by people who participate in the discussion of Fibromyaliga on ***alt.med.fibromyalgia.com*** This list will certainly be updated perpetually (You might also note that some of the definitions are not in alphabetical order, but I’m sure you’ll catch the drift)!
1) Brain Fog: the brain is clouded, so everything around you is hazy and it is difficult to think clearly, and function 'normally.'
2) Catatecary: which means feeling like the cat that ate the canary. As in, I'm feeling very catatecary today
3) Clambrain: similar to brainfog; brain is operating at about 5% capacity
4) CNP : a Chronically Normal Person
5) Doctor Fatigue: exhaustion from seeing too many M.D.s whose dx. is IAIYH (It's All In Your Head)
6) Fibro-Bugs: the feeling that bugs are crawling on your skin
7) FibroCrud: a catch all term that describes all of the symptoms that someone with fibromyalgia experiences
8) Fibro-Dance: walking along with no problems, and suddenly then one begins staggering, losing balance (also known as fibrostep and the fibrowaltz, fibrolurch, and fibrobump) This is called ataxic gait, and the staggering walk is very common to people with FM/MPS. Travell and Simons say it is due to sternocleidomastoid trigger points.
9) Fibro-Dash - the beeline we all make when the IBS or cystitis kicks (also see toilet tag)
10) Fibro-Fellows: Old-timers who can give advice and sustenance to newbies.
11) Fibro-Fingers - thought to be caused by brainfog - typos result from this, as do missed or wrong notes while playing an instrument, we think of the typos as brain stutters
12) Fibro-Flakes: for us only ...an affectionate term for us in our most exaggerated states...use with permission and sensitivity only.
13) Fibro-Flipping: when you have to keep on checking and rechecking several times to make sure that you have written a phone number or any number sequence down correctly.
14) Fibro-Flux: when we are going through shifts in perception, ie. from brain-fog day to achy day due weather change or whatever.
15) Fibro-Giggle: a funny anecdote related to FMS
16) Fibro-Hug: a hug between two people with FMS where they each wrap their arms around the other and use the fingers of both hands to massage the back of the other person.
17) Fibro-Kinks: anything that doesn't operate as it should.
18) Fibro-Link: filling in the missing parts of a conversation - in the middle of a conversation you say something, thinking that you said the thought preceding it only to realize that the person you are talking to has no idea what you are talking about. (Just a little bit of mind reading would be a good thing sometimes!
19) Fibro-Mail: All electronic mail messages pertaining to FMS.
20) Fibro-Myopia:- condition affecting all doctors, friends, relatives, employers, and Social Security administrators who can't see beyond the fact that PWFMS look so healthy
Additional definition for Fibromyopia: Any abnormality of the eye that seems unexplainable or odd to your othalmologist or optometrist.
21) Fibro-Sex: having to experiment with innumerable positions to find one that is comfortable.
22) Fibro-Side: "Why can't we all just get along"?--forgot who said it. Hey, a multiple wellness disorder--it's my "FibroSide."
23) Fibro-Stains - the little tea, coffee, juice etc... marks on our clothing we get from having weak, wobbly wrists
24) Fibro-Tip: a suggestions/tip from one Fmser to another.
25) Hi fibro diet - Anything that tastes good, has lots of salt and or sugar,alcohol, tobacco, fat, cholesterol and sex(oops different list).
26) IAIYH:- "It's all in your head," doctor's cop-out when s/he doesn't have the guts to say "I don't know."
27) IgNoSecond: ig-no-second. It measures a length of time such as hour, minute, or second. But an IGnosecond is the length of time between some irretrievable action and the time you realize theconsequences of that action. (For example, the length of time between shutting the car door and realizing that it is not only locked but that your keys are in the ignition.)
28) Irritable Bowel Syndrome (IBS):- when the bowel doesn't know whether it's coming or going, so it does both. One moment you are constipated, and the next you are running to the bathroom (see toilet tag)
29) Mush Mouth: swapping first letters of two words, swapping word order, especially after learning Latin where there isn't any word order, and then I do come up with a few Freudian slips or double sentendes that were not intended.
30) Obisivity: That is something we would have known if we were not a fibro-fog.
31) PAN:- people alleged to be normal.
32) PWF (PWFM, PWFMS, FMSERS): people with Fibromyalgia.
33) Sudden Clumsiness: The art of walking into objects or tripping over object (dust motes?) even when you see them or are in a brain. fog.
34) Sudden Stupidness: talking with someone and totally forgetting what you were saying; a dead stop of words and a lost look on your face--"Uh, what was I saying"?
35) Tender Points: are the sore spots of FMS, characteristic places where pressure of 4 kgs. causes pain. To meet the strict criteria for diagnosis you must have at least 11 out of 18 in specified locations in addition to a complaint of aching all over.
36) Thingie--what you call something when you can't remember its name.
37) Thingie-do--see thingie.
38) Toilet Tag: when IBS is acting up, and one is constantly running to the bathroom.
39) Tongue Tripping: when one is having difficulties pronouncing simple everyday words, and/or when one says a completely different word that usually begins with the same letter, but isn't at all what you intended to say... Or something comes out of your mouth and immediately you wonder why on earth you said that?
40) Fibro- fuselage: When a sufferer is in the dead center of a really bad attack.
41) Fibro-Duh: A versatile word. When one with FMS awakens from a night of unrest and is completely lost. However, this word can be a cop out for anything if you have FMS!
42) DMP: Don’t make plans! (This is very important)---If you have a chronic illness (especially if it’s invisible)... For Pete’s sake, DON'T MAKE PLANS!! You will most probably have a flare up of some kind. Then you’ll have to tell the chronically normal people that you "just don’t feel like it," and *they* will naturally think you’re being your usual hypochondriac self with your "imagined illness"
[ Previous 5 Sites | Skip Previous | Previous | | Next | Skip Next | Next 5 Sites | | Random Site | List Sites | Join us! ]
Want to join the ring? Click here for info.
Sign My Guestbook View My Guestbook