Can I Get A Witness??

APRIL 1996.... Hello there. My name is Alias, Alias Whatever You Please. I suffer from FMS, CFS, CFIDS, PTSD, EBV and Panic Disorder, (and many other things as well). I was just diagnosed with Epstein Barr Virus in late November 2000, so I havenít put my research on this page yet)... I hope you are not a fellow sufferer, and if you arenít, but love or know someone who does suffer with this, I especially would like for you to read on. If you DO have FMS, CFS, CFIDS, PTSD, or Panic Disorder; Iím on your side! Hereís my story in brief. I am in the prime of my life and appear to be a very healthy lady, however, I FEEL as if Iím 80 years old. I wake up feeling terrible, and it takes a couple of hours to get into what I consider a tolerable frame of mind, not to mention how difficult it is to get the numerous "kinks" out. Trying to get to sleep is total hell for me. I had a long and successful career as a nurse, but I wonít elaborate on that, because I cannot believe I was able to do the things I did. I was so healthy. It breaks my heart to think of it now. I was diagnosed with Fibromyalgia several years ago. I knew Iíd been feeling bad and it was getting worse. I thought it was "all in my head." My Daddy had died and I was sure I was having some weird kind of breakdown. (He died in my arms, and I couldnít do a thing to stop it)... I only learned recently how bad Freaky Fibro really is. And it is NOT just in my head. . . But indeed, my mind suffers about it.

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 doesnít 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 Iím crazy. (It's just my luck to suffer from something invisible). Well, they can talk about me plenty, I really donít care what they say! I look so healthy, and others cannot seem to understand it when I tell them "I just donít feel like it." If they could know this phantom desecrator for what it is, only for a day, Iíll wager theyíd re-think it, what do you think? ...But I wouldnít wish this on anyone!! I have always been very active in just about everything thatís physical. Now, Iím lucky to get the floor mopped. I take a lot of medication but it doesnít 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. Thatís a fact. Iím not on a pity trip here, because I refuse to let this take anything else from me, and Iím certainly not going to take this laying down . Below is information I gathered from different sources. Iím a writer, but I did not author all of the information below. Itís been very helpful to me, and I hope it helps you too. Well, I said it was brief. Thank goodness Iím an enthusiastic reader, or I wouldnít 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 SURVIVORS!

Iíve 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; Itís 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___ Iíve 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? Iím still standing, and I adamantly refuse to let go and fall. Although I was born with many virtues, patience wasnít one of them.... so if I can do it you can too! Spite the devil and smile and donít EVER give up hope and faith. Keep on keeping on... and believe in your heart that thereís a light at the end of this tunnel...Iím 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 thatís all that really matters.

Contributed By: David H. Barlow Lynn F. Bufka

Very Beneficial Links: Health Issues Of All Kinds

The Web Doctor
Join here & discuss your issues, post messages
The Love & Laughter Network
This is a wonderful site to dwell a spell
The PTSD Bibliography
An excellent source of links to numerous types of trauma
The American Academy Of Experts In Traumatic Stress
They ARE what they say they are
Essential Information on Assault, Rape & Domestic Violence
The most complete sourse of dealing with abuse I have found
SAYME: The South Australian Youth with ME / Chronic Fatigue Syndrome (CFS)
Please check out this excellent site!!!!!
Health Link USA
Hundreds of Different Illnesses, Treatments, Info and Support
Fibromyalgia Links
Tons of Info Here
Fibromyalgia and Me
Visit This Lady, she knows what it's about

The "F" Words

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 ****** This list will certainly be updated perpetually (You might also note that some of the definitions are not in alphabetical order, but Iím sure youíll 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 (hehehe)

5) Doctor Fatigue: exhaustion from seeing to 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 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 findone 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: Donít make plans! (This is very important)---If you have a chronic illness (especially if itís invisible)... For Peteís sake, DON'T MAKE PLANS!! You will most probably have a flare up of some kind. Then youíll have to tell the chronically normal people that you "just donít feel like it," and *they* will naturally think youíre being your usual hypochondriac self with your "imagined illness"

Do you ever feel like this? (I Do!)

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 Disability Network Inc.
My humble thanks to whomever recommended my site for this award.
I am very touched and I thank you sincerely.

From Joyce Catron and her beloved husband, Michael.In memory of my Daddy, Thomas Riley Leming.
My profound heartfelt thanks to you.
Joyce, Iím sure Michael and Daddy are already friends up in Heaven.

Thank you so much Amy (Cool Nurse).
Iím quite honored by your lovely award!

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