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.

--

_______________________________________________

Sign-up for your own FREE Personalized E-mail at Mail.com

http://www.mail.com/?sr=signup

May 14, 2002

- , I don't know if you have fibro or not

but if you do,narcotics are the only thing that will help the pain ,

I'm 54 and I have had fibro for years and the pain pills are the

only thing that helps me and I hate to take them, I saw on tv that

cod liver oil would help chronic pain so I bought a bottle and have

just started taking them this week I do have a cabinet full of

vitamins and other pills from the Drs.I take 3 pain pills a day,

some days I could take more but that all that I can have and some

days the pain is not bad and I need only one. This has to be the

wierdest illness I've ever seen.I do hope you can get some help.

Audie -

In @y..., " B " wrote:

> 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.

>

> --

> _______________________________________________

> Sign-up for your own FREE Personalized E-mail at Mail.com

> http://www.mail.com/?sr=signup

>

May 14, 2002