First Name:

Cheri

Male or Female?

Female

Single or Married?

Married

If married, how many years?

42

Where were you born?

Wisconsin

Where do you live now?

Wisconsin

How long have you lived there?

All my life

Your Age?

61

How long have you had fibromyalgia?

Finally diagnosed 18 months ago

What line of work? Still working?

I am a Monogrammer. I have had to cut down to part time.

Any prior injuries or trauma?

I have two artificial knees, due to osteoarthritis.

Does exercise help? What type?

Not really. It seems to make the pain worse.

What were your very FIRST symptoms?

Body pain. The pain felt like it was in my bones. Everything hurt so bad I had trouble getting around. I just didn't want to even move.

What are your CURRENT symptoms?

Body pain, chronic fatigue,brain fog,blurred vision ,dizziness,non-restorative sleep,restless leg syndrome,feeling hot inside,irritable bowl syndrome,mood swings,flu like symptoms on and off,coughing when I get extremely tired,voice gets scratchy,muscle spasms,foot pain so bad I can hardly walk,muscle and joint pain,GERD,memory loss,headaches,hearing problems,intolerance to bright lights and noises,loss of taste and smell.

Did you ever have a long lasting virus?

No

Military Service? What years served?

None

Exposure to chemicals or heavy metals?

None

How has fibro affected your life?

I am no longer able to work full time. Despite my husband's love and understanding, I still feel pretty useless. I am unable to keep up with the house work and laundry. I'm so tired all the time I don't want to go anywhere or do anything. I'm tired of trying to keep a smile on my face and pushing myself to the limit. I am just so unhappy all the time.

What makes symptoms worse?

Definitely stress. But also the weather,lack of sleep,trying to push myself too much. Constant worry about paying all the medical bills.

What makes you feel better?

Plenty of sleep and days that I just don't do anything but sit around and rest. Sunshine.

Been to a hospital for fibro pain?

Yes

If yes, how did they treat your pain?

All they do is give you pain medication. They say get plenty of rest and send you home.

What remedies or meds have you tried?

I am on a special diet and take certain vitamins and minerals. I go for massage therapy. And I have finally decided to take the pain medication offered.

Theories or Comments?

Fibromyalgia is a very sad thing. It takes away your ability to live a full and happy life. It dictates to you what you can and can't do. If you extend yourself you pay the price. It is an invisible disorder that most people can't begin to understand.

Are we missing an important question?

It is not the questions we are looking for, but rather the answers!

First Name:

Gerri

Male or Female?

female

Single or Married?

married

If married, how many years?

43

Where were you born?

tennessee

Where do you live now?

indiana

How long have you lived there?

43yrs.

Your Age?

63

How long have you had fibromyalgia?

4yrs.

What line of work? Still working?

retired

Any prior injuries or trauma?

broken right ankle,and left knee
replaced

Does exercise help? What type?

yes some water exercises,light stretch exercises and some walking though hard

What were your very FIRST symptoms?

pain all over

What are your CURRENT symptoms?

pain only worse, in legs,lower back

Did you ever have a long lasting virus?

not that I know of

Military Service? What years served?

none

Exposure to chemicals or heavy metals?

no

How has fibro affected your life?

can,t do all the things i used to do simple household chores are hard to do

What makes symptoms worse?

overworking and stress

What makes you feel better?

resting, sometimes, but mostly i just hurt

Been to a hospital for fibro pain?

no

If yes, how did they treat your pain?

What remedies or meds have you tried?

pain meds.

Theories or Comments?

I wonder if this disease has something to do with hormones.

Are we missing an important question?

First Name:

Jeannie

Male or Female?

Female

Single or Married?

Married

If married, how many years?

1

Where were you born?

Michigan

Where do you live now?

Michigan

How long have you lived there?

40 years

Your Age?

44

How long have you had fibromyalgia?

17 years

What line of work? Still working?

Medical transcriptions working 3 hours a day, 5 days a week.

Any prior injuries or trauma?

Nothing major.

Does exercise help? What type?

Exercise has a tendency to flare up my symptoms even with the slowest start to a walking or stretching program. I do walk 20 to 30 minutes 2 to 3 times a week, only if not flared up.

What were your very FIRST symptoms?

Extreme pain in my legs and hips and lower back and extreme fatigue.

What are your CURRENT symptoms?

Muscle pain and tightness in shoulders and neck (severe), clavicles, sternum/ribs, hips, lower back, arms, elbows, wrists, knees, ankles. Nausea, headache, dizziness, fibro fog. I am currently having a severe flare-up.

Did you ever have a long lasting virus?

Yes when 5 years ago I had a respiratory virus that lasted from October to January.

Military Service? What years served?

No

Exposure to chemicals or heavy metals?

No

How has fibro affected your life?

It has changed my ability to work full-time jobs, financially it has caused a great deal of stress and problems.

I feel bad because I cannot do the things I used to do, cannot do fun things like sledding, playing football, baseball, skating etc, that I would like to do with my son.

Also I have grown to not trust doctors and have generally had bad experiences with them not believing in fibromyalgia.

I have had a lot of medicine reactions and now I am afraid to try new medicines.

I cannot be exposed to certain chemicals, especially bug pesticides, natural gas, lawn fertilizer etc, makes me sick.

What makes symptoms worse?

Exercise, stress, house work, being sick with a virus or cold. any type of injury usually flares up the fibro.

What makes you feel better?

The only thing that helps temporarily is moist heat and massage, sometimes ibuprofen, but I have to be careful because I have burned out my stomach using that too much and if I use it too often, it actually makes me feel worse. Tylenol in moderation as well.

Been to a hospital for fibro pain?

yes

If yes, how did they treat your pain?

They gave me a shot of Selestone and I felt a little better for six months, but then they would not give me any more of this type of shot. They said I was too young to be getting them every 6 months.

What remedies or meds have you tried?

physical therapy, pool therapy, message, heat, anti-inflammatories, Paxil (had side effects).

Theories or Comments?

Try not to get stressed out. Pace yourself and be very careful with exercise.

Are we missing an important question?

Yes, you should ask about experiences with physicians.

First Name:

Maurcie

Male or Female?

Female

Single or Married?

married

If married, how many years?

35 yrs

Where were you born?

Lubbock, Tx

Where do you live now?

Gainesville, Tx

How long have you lived there?

8 years

Your Age?

48

How long have you had fibromyalgia?

1997

What line of work? Still working?

restaurant manager, Admin Assist. On SS disability now.

Any prior injuries or trauma?

Physical: High Fever Convulsions as child
2 C-Sections, 1 Hysterectomy
2 auto accidents. 1 minor, 2 years later more severe one. extreme black bruising in areas where worst pain occurs.

Psych: raised in 3 generations domestic violence and alcoholic males. Sexual abuse, incest. On my own at 14, the better for it.

Does exercise help? What type?

Walking. Used to do aerobics but hard to do anymore. Most exercise seems to make it worse. I walk everyday, weather permitting. Sometimes that makes it worse too, but I persevere.

What were your very FIRST symptoms?

sore burning pain like a spear through an area between my breasts (near the right one) and going through to my corresponding upper back area. Pain there was the "hot spot".

What are your CURRENT symptoms?

Besides SLEEP DEPRIVATION..ha. Still have the above mentioned "hot spot" Eventually radiating through my left rib area, shoulders. Also have hip and arm pain. What they docs call "RLS" also, not the twitchy legs like the commercial, but burning pain with onset at night or at rest. Swelling feet and hands when I walk for any length, or am up for extended periods.

Finally came to terms with the sleep thing. Sleep for a few hours, then up, throughout the day and night. Not the best obviously. but better than none at all.

Did you ever have a long lasting virus?

Caught Mono approx. 6 months prior to onset of symptoms. Have heard some don't even know they have it. Hit me like a ton of bricks. Acute pain, high fever, fever delirium, absolute exhaustion. Never remember being sicker. Tested positive for months afterwards, not sure when (or if really) finally stopped.

Also, childhood measles, chickenpox, mumps, yearly bouts of bronchitis in adulthood (not sure if that's viral), so called "walking pneumonia".

Military Service? What years served?

None

Exposure to chemicals or heavy metals?

None known.

How has fibro affected your life?

Detrimentally of course. Extremely so. Always hated any kind of medication, anything to take your own control away (results of childhood I'm sure). Had to go through every medication in the book, after first accepting I would have to take SOMETHING, hard psych. struggle. Also, hearing judgmental people refer to it as, "that lazy person's disease.", or other such titles.

Physically, no comparison. I was a "always up and going" person. Now its hard to cook a meal without paying the price.

Have always been intelligent intellectual. A reader, a writer, a self educator. Now my focus is shot to hell. When this started I had written 800 pages of a novel. Only need about 50 to finish first draft...but can't get my head to work anymore. URGGGG! that's what I hate.

What makes symptoms worse?

Being up too long. Standing too long, laying to long, walking too long, sitting too long...doing anything for more than a 30 minutes at max. Seem to be in constant search of "comfort zone".

What makes you feel better?

heating pad. Hot baths. Mostly medication,which I finally had to come to. On methadone therapy. Sounds spooky. Scared the ash#$t out of me when dr first suggested. Had only heard of it in connection with heroin addicts. Much in vogue now for chronic pain, especially nerve type, such as neuropathy and such, which I have much of. Finally gave in when I could no longer get out of bed without help. Pain is better now, but trade of is drowsiness, WHICH I DEPLORE, and a certain "mental sharpness." Have actually cut myself back without dr's advise, because I hate that part. Now Living with "tolerable" pain, just in order to feel like I'm "living" at all. Also the drowsiness. Can't stay awake, but can't sleep for more than an hours time. MISERABLE.

Been to a hospital for fibro pain?

Yes.

If yes, how did they treat your pain?

Shots, injections, therapies, massages, epidermal, you name it. I've done it.

What remedies or meds have you tried?

See above. Also every antidepressant, which they always shove at you. Refuse them now on principal. Depression is not my problem, thought its first thing they think. Am I ever depressed. Sure, who wouldn't be. But depression is an occasional symptom, not the whole package. I like to feel like I'm actually "in" my life, not watching it on TV.

Theories or Comments?

Wish I knew. The viral thing seems really likely. Also, a trauma onset. Perhaps some combo of the two. Absolutely seems plausible in my own case.

Don't know what it will take for people to accept this is not just the same old "hysterical women" syndrome. Just like all women's issues throughout time. First to have to convince the male docs your not crazy.(realize men have this too, but seems predominately female)

Guess I'm particularly bitter because with all my documented physical problems, I received my medical disability not because I had a disease, but "because I truly perceived that I did", if you get the difference and the irony. Thus I have a "psychological" disability and not a physical one.

Are we missing an important question?

Do environmental factors contribute perhaps?

The saddest unanswered question is why can't we be believed?
Read these questionnaires and in nearly every case they grabble with it.

First Name:

Melony

Male or Female?

female

Single or Married?

Widowed

If married, how many years?

18

Where were you born?

Charles City, Iowa

Where do you live now?

Elma/Lourdes, Iowa

How long have you lived there?

18yrs

Your Age?

43

How long have you had fibromyalgia?

last 7-8yrs

What line of work? Still working?

Used to work in a factory

Any prior injuries or trauma?

I have had hydradinitis, which is a chronic infection of my sweat glands, since I was 8-9yrs old. I have taken antibiotics for most of those years.

Does exercise help? What type?

My husband and I used to farm. I was pretty active years ago, but since I was diagnosed with fibro, I haven't done anything.

I think I have CFS also. I am so tired most of the time I just sleep.

What were your very FIRST symptoms?

It's hard for me to remember, I was diagnosed 6yrs ago, but I had all the symptoms for 3,4 or maybe 5yrs before that. I remember my neck being stiff for about 2 months, then it migrated all over my body.

What are your CURRENT symptoms?

My neck has been sore for about 2 months, my foot, knee and shoulders have hurt almost as long.

Did you ever have a long lasting virus?

I'm not sure if hydro is a virus

Military Service? What years served?

no

Exposure to chemicals or heavy metals?

Yes with farming and I used to use alum. cookware.

How has fibro affected your life?

the last 10 yrs have been hell

What makes symptoms worse?

I have no idea, but my period seems to make it worse

What makes you feel better?

I used to take alot of motrin, but I found out that when I take motrin it takes the pain away faster, but I am stiffer after the motrin wears off than I was before I took it. Now I take only an aspirin or two

Been to a hospital for fibro pain?

Yes six yrs ago I was desperate to find out what was killing me slowly. The doctor said he would give me some pain killers, but didn't know what was wrong with me. I started crying right then and there, so The doctor got me right in to see a specialist within the hour. The doctor said I had fibro, gave me some vioxx and sent me home.

If yes, how did they treat your pain?

What remedies or meds have you tried?

Just aspirin I've tried some rice thing that did nothing. I have recently bought a bottle of MSM caps. They seem to be helping.
Just before I came to your website, I was at earth clinic and read some stuff on msm. I am going to read their book and maybe order some msm powder and give that a try. I will let you know how that turns out.

Theories or Comments?

Candida yeast is infecting my whole body, I think. We'll see.

Are we missing an important question?

No, I can't think of any thing.

Tamara

Male or Female?

Female

Single or Married?

Single

If married, how many years?

Where were you born?

Vancouver, Washington

Where do you live now?

Portland, Oregon

How long have you lived there?

8 years

Your Age?

48

How long have you had fibromyalgia?

25 years

What line of work? Still working?

Computer Operations, yes

Any prior injuries or trauma?

Does exercise help? What type?

Yes, swimming

What were your very FIRST symptoms?

hip pain

What are your CURRENT symptoms?

Pain and stiffness in neck, shoulders, arms, back (mid and lower), hips, buttocks, thighs, calves.

Did you ever have a long lasting virus?

don't know

Military Service? What years served?

Air Force, 1978 - 1981

Exposure to chemicals or heavy metals?

Not that I'm aware of

How has fibro affected your life?

physical affection can be limited do to the pain of touch.

What makes symptoms worse?

stress!!!!

What makes you feel better?

Swimming

Been to a hospital for fibro pain?

no

If yes, how did they treat your pain?

What remedies or meds have you tried?

I don't remember but it's been a lot of different RX's.

Theories or Comments?

Pain from childhood locked in my body

Are we missing an important question?

First Name:

V

Male or Female?

F

Single or Married?

S

If married, how many years?

Divorced for 17 years

Where were you born?

Nebraska

Where do you live now?

Colorado

How long have you lived there?

27

Your Age?

51

How long have you had fibromyalgia?

diagnosed 23 years ago/symptoms as a child

What line of work? Still working?

Law Enforcement/Admin Asst/working

Any prior injuries or trauma?

yes/whiplash/some drug/alcohol abuse as a teen/3 terminated pregnancies

Does exercise help? What type?

Moving helps. Repetitive exercise causes pain after a while. Pain seems to last forever.

What were your very FIRST symptoms?

Leg pain. Migraines. Chronic sinus problems. Difficulty holding my arms above my head. Sensitive to medicines. Heart problems/irregular heart beat.

What are your CURRENT symptoms?

Leg, arm, face, shoulder, buttocks, etc., chronic body pain/discomfort. Chronic fatigue. No tolerance to pain. Sensitive to sound.

Did you ever have a long lasting virus?

Yes

Military Service? What years served?

No

Exposure to chemicals or heavy metals?

Hair spray use, ex-smoker

How has fibro affected your life?

Gradually I had to give up my personal life in exchange for rest. To work, I have to have the rest.

What makes symptoms worse?

I am not sure. I am symptomatic all of the time. On occasion I have horrible flair ups that seem to present new problems as well as cause the other problems to go over the edge.

What makes you feel better?

I used to find some relief in taking Sinutab and Advil. I currently find no relief regardless of what I take or how long I rest.

Been to a hospital for fibro pain?

Specialists/Doctors only. I was admitted to the hospital two years ago with heart problems, possibly an allergic reaction from Ultram.

If yes, how did they treat your pain?

I had to constantly remind the staff at the hospital that I had fibromyalgia. It is difficult when you become ill. You feel poorly all the time. When something else may be going wrong, it is hard to sort the fibromyalgia symptoms from the other feelings.

What remedies or meds have you tried?

I have tried meds for Parkinson's Disease. Different anti depressants. Ultram. Muscle relaxers. Etc., it is hard to remember them all.

Theories or Comments?

I wonder about drugs, especially those given to us as children in the form of vaccinations.

Are we missing an important question?

Is this a doctor based website? Will the information we provide here be used for anything?