My new member information

[Guest guest]

Age range: I like that you ask for a range but I'm not proud--

I'll be 42 in a few weeks.

Male/female: Female

What are the symptoms?

Oh gosh, the list of what AREN'T the symptoms would be shorter,

wouldn't it?

Everything on the list: Anxiety. Blurred vision - trouble reading

small to medium print (although I didn't know this was an FM symptom

until I joined this group). Bowel problems. Chronic headaches (the

neurologist has identified that I suffer from 5 distinct headaches

types). Chronic sinus pain (I've had two sinus operations).

Difficulty with fine motor skills/writing. Dry eyes. Increased

muscle pain subsequent to light exercising (and subject to NO

exercising). Involuntary muscle spasms. Stiffness and Joint pain

with no inflammation -- especially severe in the hips, knees, and

ankles resulting in my not being able to walk very far or normally --

as well as shoulders, neck, fingers and wrists. Muscle weakness --

I'm not sure if this is why or not but I fall. A lot. Nausea.

Occasional dizziness - actually mine is not very occasional as it

happens daily and often more than once and I figure it could have a

lot to do with my falling so much (again I didn't know this was an FM

symptom until I came to this group) About six months before I was

diagnosed I had such severe dizziness that I had to hold onto walls

and furniture just to get from one part of the room to the other.

VERY Poor short-term memory. Reduced cognitive ability. Ringing in

ears -- for me this is only occasion. Severe widespread muscle pain -

- oh yeah, bigtime. Sleep problems -- both getting to sleep and

staying asleep. Sore throat - mine's more a problem with swallowing

and feeling that there's a lump in the throat. Stiffness and pain in

muscles upon waking in the morning, and the rest of the day for that

matter -- for me it's also bad any time I stay in one position for

more than about 10 minutes. When I go to stand up I can't walk for a

few minutes due to stiffness and pain in the hips-thigh region and in

the ankles and knees. There are a few symptom I always credited to

FM that I didn't see on the list: Changes in visual acuity,

Overwhelming fatigue and Depression/Suicidal Ideation, but maybe

they're considered by-products of a chronic disease and not symptoms

themselves.

Has your illness been diagnosed? Yes . . . and no. I was diagnosed

with fibromyalgia by a rheumatologist at UT Southwest Medical Center

back in October of 1994 or 1995 and they had a wonderful nurse

practioner supervising weekly follow-up visits and a support group

for the FM patients. When I got a different boss he would no longer

let me leave work early to attend weekly FM appointments/support

group meetings so I stopped being treated. However, I continue to

hear a litany of " you know most doctors don't even believe

fibromyalgia is a real disease " from almost every doctor and

specialist I come into contact with -- and there's a bunch of 'em,

most notably my opthamologist to my gynecologist. I'm not sure if my

general practioner believes in FM or not. He's never said anything

specific against it but neither is he willing to treat it.

How long did you suffer before you got help? Over 2 years.

Is there a time that you can remember when it started? A period of

time, yes, but no clear " triggering " illness or event. I have

considered that it MIGHT be related to my being diagnosed with

diabetes in 1990 or the debatable diagnosis of psuedotumor cerebri in

1991 or when I lost over 80 pounds in 1992/93 and then regained it

(and more) after the doctor I was seeing dropped her Medi-Fast

program because it wasn't bringing in as much money as she'd hoped

for and I then got mad and stopped working out and started overeating

again.

Some of us have found that from lack of exercise we are overweight.

Have you found this to be a problem also? Well, I am over 100 pounds

overweight, there's no doubt about that, so of course my entire body

suffers for it.

Are you on disability? No, but I lost my job in November 2001 and

haven't worked since. Unemployment ran out 2 months ago. Any help

on this topic would be appreciated.

What have you found that helps ease the pain, warm baths, medications

etc.? Hot baths with epsom salts help sometimes as do ice packs.

Out of desperation I've started taking chrondrotin (spelling) but

can't say if it's helping or not.

I'm a walking pharmacy. I take over 20 different medications daily

but not one of them is specific to FM as I'm not under a doctor's

supervision for it at this time. However, certain medications that I

take which are prescribed by other doctors have been prescribed by a

rheumatologist in the past including Vicodan for pain relief,

Skelaxin (a muscle relaxant) and Vioxx -- one of the new anti-

inflammatories that isn't covered by insurance and costs me $90 for a

bottle of thirty that I then have to carefully ration out. Because

of stomach problems and the side effect of diarrhea I can only take

the Vioxx about once a week. I take meds for diabetes, TMJ, severe

stomach pain, high blood pressure, urination problems, gynecological

problems, headache prevention, dizziness, and migraines.

Do you have sleep problems? How do you deal with it?

MAJOR sleep problems. Not only getting to sleep but also staying

asleep. I simply cannot get to sleep without being severely drugged

up. I've had 2 sleep studies in 4 years. They reveal that I have

mild apnea and Restless Legs Syndrome. My general doc says the apnea

will resolve when I lose weight so he won't prescribe anything else.

For the RLS and insomnia I used to take Klonopin until my teenage son

tried to overdose with it last summer so now I don't want to have the

stuff in the house. Unfortunately nothing works as well as the

Klonopin. About 3-4 hours before I want to sleep I take 800 mgs of

Skelaxin (muscle relaxant prescribed by the TMJ doctor) and 1200 mgs

of Neurontin prescribed by my neurologist and even if I'm really

hurting I try to delay taking Vicodan until close bedtime to hasten

the sleepiness and help keep me asleep.

Do you have family that understands your illness? Heck no. In fact

my husband not wanting me to be on anti-depressants (for depression

or for FM) and my inability to keep house are a large part of what

caused my marriage to break up last year. Not that I was up for a

Good Housekeeping Award before I developed FM, I freely admit that I

wasn't and that he always did more than his fair share of the

housework. But at least before FM I could do basic household chores

without my back and hips and legs hurting so bad that I couldn't walk

anymore or having energy depletion so bad that I was laid up for 2

days.

Some have found certain foods causes problems with CFS or Fibro, have

you? No, but I haven't really looked at this issue. I welcome any

and all advice on the subject.

What type of Doctor have you found that has helped you the most? My

neurologist, bless his heart. Unfortunately he doesn't feel

comfortable managing my FM or I'd probably be under " real " treatment

for it now instead of just getting relief through meds for other

medical problems. I haven't found a rheumatologist who listens or

offers anything helpful or who is willing to do more than say " lose

weight " and I don't have the time or money to keep searching for one.

Well, that's me in a walnut-shell I guess. I look forward to meeting

the rest of you and benefitting from your experience and wisdom.

Dana B