symptoms of fibromyalgia/intro -long (sorry)

May 14, 2002

To introduce myself - My name is . Hubby Bill and I live in Texas with 6

parrots and 2 dogs!!

I am 51 yr old female who has been very active most of my life- growing up in

scouts with a scouting family we went everywhere- even into the backwoods of

Canada on a canoe trip to primative camp.

Even as an adult I raised 3 children. I have been in the maternal-child field

of nursing since 1981. Over the years I have worked 8 and 12 hour shifts and

normally alot of overtime due to staffing problems.

I haven't worked since 2000 when I had L5S1 spinal fusion with BAK cages, screws

and rods. The spinal surgeon kept telling me the pain would go away. It didn't

and new pain was added.

Prior to the back surgery I had r knee surgery, a problem which they feel was

cause by an abnormal qait related to the back problem.

1 yr post op from the spinal surgery, the surgeon finally told me the pain was

permanent - would not ever go away and was caused by the metal screws and rods

in my back. He offered to take the rods and screws out but with no guarantee

that the pain would stop and I would worry about the damage done by breaking

those screws and rods out of the bone that has grown over them. The other option

was pain medications the rest of my life.

In 2001 I had left shoulder surgery for what they thought was a bone spur- and

they were right, but it was digging a hole through my rotator cuff.

Prior to the shoulder surgery, I was having terrible pain in my shoulder that

radiated to my elbow up to 10-12 times a day. Ortho did not know what was

causing this. He " hoped " the surgery would make the pain stop. It didn't - it

has changed and worsened. Now it stays in my upper arm is is so bad, I cry and

double over with the pain.

Ortho doc is upset with me and blames me for the problems " obviously you have

problem recovering from surgery " - funny, the pain was there BEFORE surgery and

WORSE after he opened my shoulder. I think he hoped he was rid of me when he

referred me to a pain management doctor- but recently the symptoms changed to

include pain down to my elbow with numbness in my ring and pinky fingers.

He ordered a MRI (which was normal) and EMG and even though he was positive that

the EMG would be normal- it was not - there are 2 levels in the cervical spine

with problems- but I haven't seen the full report. they also diagnosed ulner

neuritis at the elbow. They don't have a clue what caused it.

Ortho doc also was the one who suggested a rheumatologist to rule out fibro -

BUT I have been wondering about this for more than a couple months since I have

many symptoms that can't be explained. After reading the list of symptoms - I

may have had the beginnings of this over 10 years ago.

I am trying to find a good rheumatologist that is close (please don't make me

drive into Houston) but maybe some feedback from the list members would be

helpful. Anyone other than a rhematologist who diagnose and treat fibro?

Also one symptom that I have in not in any lists that I have seen for fibro- in

the last month both hubby and I have notice that I have bruises all over my arms

and legs - many are obviously there from when I hit my legs on something. Other

are where our little dog has hit me with her paw(which I question whether that

should leave a bruise) and other have no explanation - on the inside of my knee,

on my upper arms, from and back. It seems like when some heal other show up. Any

one with any ideas.

To answer the survey questions: ( I am using the your list symptoms plus the

additional symptoms listed by the fibrohugs web site which is very extensive)

Age 51

female

symptoms:

blurred vision- (attributed this to all the meds I am on for the spinal pain,

nerve pain and the arm pain)

Irritable bowel symdrome

Don't know if I have Irritable bowel symdrome - but I have had recurrent

constipation and diarrhea for years -

Headaches

Have always had headaches for various reasons- blamed them on sinus or tension

etc.

nasal and other allergies-

I have had serious sinus pain ( I called then sinus migraines) and recurrent

sinus and nasal allergies for as long as I remember. Currently I have had

allergies for the last month and 1/2 and can't get them to go away.

Difficulty with fine motor skills- typing on the computer has become so

difficult and I make so many mistakes- if I don't have spellcheck- you would not

be able to read what I have typed I have always been a very good typist until

the beginning of the year. Again, I blamed it on the narcotics?

widespread pain after physical exertion- a couple years ago, I was helping my

husbad making a delivery and it involved climbing stairs- I made it up once and

he also had to carry me back down- the pain was everywhere but expically on my

legs.

Involuntary muscle spasms/muscle " quakiness " - I not sure what that term means

but I know that when I am resting on the couch, I can never relax- my whole body

goes thought these muscle spasms - from my feet and legs to my shoulders and

arms and hands- it never stops. - they are not painful just the muscles jump and

I never feel totally relaxed.

Muscle and joint aches

My joints have been aching and even painful for months.even the neurologist who

did the EMG noted the tenderness at both the elbow and shoulder. Then I pushed

on my other shoulder and arm like he did and found the tenderness there also.

There is also soreness at my knees.

Dizziness/loss of equilibrium- blamed this on the meds- although it is not all

the time- so how can it be the meds?

memory disturbances- there are so many things I cannot remember and this really

irritates my hubby- who get so mad when he knows he told me but I don't remember

anything about it- and he is very quick to blame " all that dam- pills " that I am

taking for the pain.

Reduces cognitive ability - hubby tries to explain the computer program he is

using and even though I have been system managers for comouter programs at

several hospitals, I have a hard time grasping and many times make mistakes- or

do what is right but forget that I did it. I balanced the checkbook and there

are 3 checks that we entered with the wrong amount in the computer- off by $0.30

to over $1.00 - haven't found out yet who made the error- me or the bank.

night sweats and fever- have felt like I am burning up - this happens at night

and even throughout the day - to the point of having to change my clothes- I get

so cold that I put on long sleeves- and then I get hot- at night I get cold then

break out in a sweat - can never get comfortable.

weight change

Since 2000 I have lost over 30 lbs

severe PMS

I had a hysterectomy but they left my ovaries and that is the worse PMS- I still

have abdominal cramping and breast tenderness - and it lasts 2-3 weeks at a

time. Changing hormones did not help.

hair loss-

this was happening for months and this is how we found out that I am also

hypothyroid - it has slowed down but the amount is still more than I think is

normal

cold hand and feet

I have had problems with my hand and feel feeling cold- I was diagnosed with

raynauds syndrome in the late 1980's and when it has gotten cold enough here in

Texas, I have terrible pain and loss of blood flow to my fingers, which is very

scary.

Frequest urination- sometimes I barely make it to the bathroom.

fatigue- I go to bed tired and get up feeling just as tired.

Other chronic illnesses: recently started treatment for asthma.

numbness- I have attributed these symptoms to my nerve damage- but I have felt

numbness on the soles of my feet and also the numbness in my left hand.

communication difficulties - I know that there are times that I cannot think of

the word I want to use, or the name of something- and I use the wrong word.

depression- am on medication for depression - still have crying spells.

emotional lability - hubby screams and yells at me when according to him " You

are always negative " " Quit being so negative "

intolerance to bight lights- had this for years. Also have len implants after

cataract surgery and one eyes is more intolerant to the bight light than the

other but they are both affected.

intolerance to alcohol- I developed this years ago- even if I take a small drink

of any kind of a alcoholic drink - I get a terrible headache.

has your illness been diagnosed- ortho doc suggested this as a possible

diagnois. Looking for a doctor who has background in diagnosing this and

treating this.

how long did you suffer before getting help- have been under treatment for years

for alot of these symptoms individually but not as a whole diagnosis of fibro.

Many of the symptons (headaches, bowel problems, cold hands and feet, sinus

problems) started more than 15 years ago.

I was in PT for quite a while after the spinal surgery and started it again

after the shoulder surgery- but had to quit early after the shoulder surgery due

to an increased level of pain - and the pain was not at the site of the surgery-

it was in the upper arm. that was the only exercise I get except walking around

the house, taking the dogs out etc. But my problem is loss of weight- over 30

lbs since Dec 2000.

I am trying to get disability based on the constant pain that I am in- don't

have the diagnosis of fibro yet, but if I do have it I will certainly add it to

the rest of my problems.

Don't know how to get on disability except filing the claim, and from what I

heard, everyone gets denied the first time. Appeal the denial and this is when

the attorneys will jump in. It is normally better to have an attorney. Some

times you are denied again and then go before the judge and many people are

approved at this time.

The burning pain is not relieved by anything. the pain meds that I am on barely

make the pain tolerable. There is a spray that is called stop pain and I think

it is like a spray on ben gay and when my neck start burning, I spray this on

and it seems to help the burning or else the feeling I get from the spray ( cold

then hot) just covers the pain feeling.

Sleep is a problem - I lay down to rest during the day and can't relax. At night

it takes me more than an hour to fall asleep, even after taking 2 narcotic pain

meds, a medication for the burning pain and soma-muscle relaxer - and all have

the side effect of drowsiness. I haven't found a solution to this. I really

don't want to add anything else.

My husband does not understand anything about chronic pain and I am not sure he

will understand what it means if I am diagnosed with fibro. He pushes every

chance he gets that I need to get off the dam* narcotics. He blames everything

on the pills. He even has his friends calling here and telling me that

acupuncture is the way to go and it will take away all my pain, so I can get off

the dam* narcotics. The combination that I am on right now is the only thing

that brought the pain spasms in my left arm from 10-12 a day to 4-6 a day.

certain foods- the only thing I found is unusual reactions to foods- cheese

should bind you up espically when you are taking the narcortics that also cause

constipation - I get the worst case of the runs after eating cheese, I don't

understand.

Haven't found that doctor yet. Anyone know anybody in the Houston area?

Sorry this is so long - but I am still serching for an answer to my problems.

Also since my husband is not supportive most of the time ( he is very supportive

when he finds me rollewd up in a ball crying after one of the terrible pain

spasms or sitting on the floor after cutting my hand, which in turn causes a

pain spasm) but most other times he is looking for ways to stop the narcotics

from coming into our home- I really need support from others. thanks for any

suggestions anyone can give me, any quidance, any hope.

--

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May 14, 2002

Hi ,

Welcome to our wonderful group. I'm so sorry to hear about all your

painful problems. Rheumatologists are supposed to be the fibro

experts, but I believe some of the group members see other

specialists, such as neurologists, etc. You asked about bruising. I

get bruises on my knees that come up from the inside, due to

cartilage grinding from my chondromalacia. But if you think your dogs

paws are causing bruising, go to the doctors! Have you had recent

bloodwork done? This could be a sign of anemia. Or something else

potentially serious. I believe you mentioned you were in nnursing, so

you would know more about that than I would, but it doesn't sound

like something that should be taken lightly. Well, you've come to the

right place to vent your pain and frustration. This is a great group

of people, and I hope that we can help you as much as they have

helped me.

Take care,

May 14, 2002