Re: new to group---I may have fibromyalgia

[Guest guest]

,

Welcome. I haven't heard of " fibro fog " but that would explain alot

for me. I thought it was fogginess from my medications. For me, it

is normal to slow down. It takes me awhile to get things done that

used to take me a short amount of time. I think only a rheumatologist

can diagnose you with fibro or any other diseases that are related to

RA, lupus etc. Your PCP can do labs to test for RA factor etc...but

it is normally treated by a rheumatologist. Have you seen a rheumy

yet or are you waiting to see what your results are first. I have had

fibromyalgia for about 6 years and RA for 7 years...what other

questions do you have? I have found that this web board is extremely

knowledgeable and offers a great support system.

>

> Hi my name is and I am currently being " tested " for

> fibromalgia. In other words, I am being tested for everything else,

> THEN if all is negative, they might dx me with fibro. I have many

> questions for all of you. I have heard something about " brain fog "

> or " fibro fog " . What is this? Lately, I just cannot think straight.

I

> do weird things like forget where I am going or pour my leftover

drink

> in the trash can instead of the sink. (There are MANY more weird

things

> I do now but there is not enough room/time to list them all!!)I am

> having problems at work. I used to be able to make/decorate 4-5

cakes

> an hour and now am down to only 1. (BTW--I am a cake decorator.)I

have

> 2 children. One of them has juvenile arthritis.---

>

[Guest guest]

Hi !

Welcome to the group! You have come to a very supportive caring environment

here!

I have extreme problems with cognitive functions due to my Fibromyalgia. It is

so severe in fact, that I was tested for early alzheimers and dementia 2 years

ago when I was only 34. I cannot remember words, I tend to make up ones that do

not exist, and if I am thinking of a word it takes me a long time to realize if

it actually is one! I transpose numbers constantly. I often forget what someone

tells me just a few seconds after they have told me something. My memory is

impaired. I can ask someone a question, get an answer and ask the same question

a couple of minutes later. It's one of the more frustrating aspects of FMS as I

feel that it has robbed me of any intelligence whatsoever. I have learned to

laugh at myself when I do the goofy things! I will put a paper plate in the

sink, and throw my silverware away! One day I went to put the paper towels on

the holder, and instead put them in the microwave (they sit next to each other

on the counter) I have to laugh since

there is nothing else I can do about it!

I'm not really getting any treatment for my FMS at this point. I take flexeril,

a sleeping medication to help me reach the restorative sleep stage, I have

Ultram ER that helps dull pain but doesn't take it entirely away. I was taking

Cymbalta but after a couple of years on it, it was causing severe mood issues.

I tried Lyrica, couldn't take it either. I'm taking Effexor XR which they used

to use for FMS before Cymbalta, but the doctors say that it is not as effective

for the pain like Cymbalta is even though they work on the same two brain

chemicals. I was diagnosed at the age of 30 after they spent two years ruling

other things out. I am now 36. I was diagnosed at U of M. Now, I've noticed

that all of the rheumatologists that once specialized in FMS no longer have it

on their profiles. Because so many are being diagnosed, many are sent back to

their PCP's unless a patient has other underlying rheumatic conditions. They

teach a great workshop on managing and

living life with FMS but I have yet to attend. Since coming down with other

rheumatic diseases I have been trying to manage them without much luck. I have

a list of some great books if you want it to do some more research:)

I was talking to an FMS patient one day who put her ice cream in the closet and

her umbrella in the freezer! The fibro fog affects many, and the cognitive

dysfunction seems to affect many as well.

<man_u8@...> wrote: ,

Welcome. I haven't heard of " fibro fog " but that would explain alot

for me. I thought it was fogginess from my medications. For me, it

is normal to slow down. It takes me awhile to get things done that

used to take me a short amount of time. I think only a rheumatologist

can diagnose you with fibro or any other diseases that are related to

RA, lupus etc. Your PCP can do labs to test for RA factor etc...but

it is normally treated by a rheumatologist. Have you seen a rheumy

yet or are you waiting to see what your results are first. I have had

fibromyalgia for about 6 years and RA for 7 years...what other

questions do you have? I have found that this web board is extremely

knowledgeable and offers a great support system.

>

> Hi my name is and I am currently being " tested " for

> fibromalgia. In other words, I am being tested for everything else,

> THEN if all is negative, they might dx me with fibro. I have many

> questions for all of you. I have heard something about " brain fog "

> or " fibro fog " . What is this? Lately, I just cannot think straight.

I

> do weird things like forget where I am going or pour my leftover

drink

> in the trash can instead of the sink. (There are MANY more weird

things

> I do now but there is not enough room/time to list them all!!)I am

> having problems at work. I used to be able to make/decorate 4-5

cakes

> an hour and now am down to only 1. (BTW--I am a cake decorator.)I

have

> 2 children. One of them has juvenile arthritis.---

>

__________________________________________________

[Guest guest]

, I have not seen a rheumy yet. My doctor wants me to have

sleep study first. I think she wants to see if my tiredness is from

snoring or something else. My blood tests came back normal. Normal

thyroid and no sign of RA. She said that after the sleep study she

may send me to the rheumy. My daughter has a pediatric rheumy. All we

need for our family is another doctor to pay off. Anyway, as for

questions, how long does it take to get dx and just what can be done

for fibro? Right now I am in a lot of pain and just extremely

exhausted ALL the time. It has got to get better, right?? My doctor

gave me a sleeping med (Zolpidem) and it helps a little. She also

gave me something for pain (Nabumetone)but it doesn't help at all. It

almost seems to make it worse. Maybe I just need to give it more time

to work.---

> >

> > Hi my name is and I am currently being " tested " for

> > fibromalgia. In other words, I am being tested for everything

else,

> > THEN if all is negative, they might dx me with fibro. I have many

> > questions for all of you. I have heard something about " brain

fog "

> > or " fibro fog " . What is this? Lately, I just cannot think

straight.

> I

> > do weird things like forget where I am going or pour my leftover

> drink

> > in the trash can instead of the sink. (There are MANY more weird

> things

> > I do now but there is not enough room/time to list them all!!)I

am

> > having problems at work. I used to be able to make/decorate 4-5

> cakes

> > an hour and now am down to only 1. (BTW--I am a cake decorator.)I

> have

> > 2 children. One of them has juvenile arthritis.---

> >

>

[Guest guest]

Wow, this all sounds so familiar! (putting stuff in the wrong place,

saying the wrong words, poor memory) Yes, I guess I have to laugh

about it also. My dog looks at me like I am nuts. Last night I

thought I had let him out in the back yard and that the gate was

open. I was sure he had gotten loose. I began getting dressed to go

find him when I noticed him sitting on the couch watching me! I had

not even let him out!----When I think about that stuff it is kind of

funny but then I think about how hard it is to work or get anything

done. I am currently on Cymbalta. (for Restless Leg Syndrome) I would

love a list of those books you mentioned.---

> >

> > Hi my name is and I am currently being " tested " for

> > fibromalgia. In other words, I am being tested for everything

else,

> > THEN if all is negative, they might dx me with fibro. I have

many

> > questions for all of you. I have heard something about " brain

fog "

> > or " fibro fog " . What is this? Lately, I just cannot think

straight.

> I

> > do weird things like forget where I am going or pour my leftover

> drink

> > in the trash can instead of the sink. (There are MANY more weird

> things

> > I do now but there is not enough room/time to list them all!!)I

am

> > having problems at work. I used to be able to make/decorate 4-5

> cakes

> > an hour and now am down to only 1. (BTW--I am a cake decorator.)

I

> have

> > 2 children. One of them has juvenile arthritis.---

> >

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

,

Fibro is normally diagnosed if you have pain in " trigger points " . It

took a few months before I was diangosed w/ fibro. I am suprised your

doctor is sending you for a sleep study first?!? Once you are

diagnosed, you can see what options you and your doctor can come up

w/ a treatment plan. Lyrica and neurontin are a few medications that

is being used to treat fibro. I take lyrica and it has helped w/ the

pain. I wish I could tell you that the chronic fatigue will

eventually get better, but it has gotten worse for me. I do

everything I am supposed too, excerise, eat right...but it hasn't

helped me. I had heard of a few people who have gotten

prescribed " stimulants " to help combat the fatigue. I asked my

rheumy about it and I just had a sleep study done to make sure I

don't have sleep apnea. (If you have sleep apnea, narcoleptic and

ADHD medications can make it worse). That is what I am trying to do

to help fight the fatigue. It's frustrating, it's hard to get used

too...but you learn to adapt. You do things when you have

your " good " days and rest when you get tired. I was 24 when I got

diagnosed, I remember being angery because I couldn't keep up w/ my

friends, constant pain, I had to cut down on my work. It's good to

have a good support system, because everyone hear on this web board

knows what your going through and understands the pain, the fatigue,

etc. Sometimes it takes a few months before you start to find relief

from your medications. If you are still in alot of pain, I would

talk to your doctor to see if you can get something stronger until

they can figure out what is causing your pain. All you can do is

take it day by day. Hang in there, remember we are hear for you.

> > >

> > > Hi my name is and I am currently being " tested " for

> > > fibromalgia. In other words, I am being tested for everything

> else,

> > > THEN if all is negative, they might dx me with fibro. I have

many

> > > questions for all of you. I have heard something about " brain

> fog "

> > > or " fibro fog " . What is this? Lately, I just cannot think

> straight.

> > I

> > > do weird things like forget where I am going or pour my

leftover

> > drink

> > > in the trash can instead of the sink. (There are MANY more

weird

> > things

> > > I do now but there is not enough room/time to list them all!!)I

> am

> > > having problems at work. I used to be able to make/decorate 4-5

> > cakes

> > > an hour and now am down to only 1. (BTW--I am a cake decorator.)

I

> > have

> > > 2 children. One of them has juvenile arthritis.---

> > >

> >

>

[Guest guest]

hi rebecca, i have just been where you are right now. i have been tested for

everything under the sun.. i just had a recent scare, the drs. thought i might

have spinal cancer, i got the call today after 2 days of hell!! the not knowing

is scarry but i can BREATH now!!! im o.k. besides having severe

ra,osteo,neuropathy & depression..... you know what i cant complain cuz at least,

im ALIVE!!!!!! i just saw THE LAST LECTURE about the man who is dying from

pancreatic cancer & he is full of life, nothing compares to what he & his family

is going through... as for the 'brain fog' i can also relate too cuz i could be

talking about something & my mind goes blank & i cant think straight either, ive

told my drs. but they dont say much except i could be on too much meds....

anyway, im doing better now thank goodness!! take care rebecca & god bless,

melyndagamez 4/9/08 10:32p.m.central time

[ ] new to group---I may have fibromyalgia

Hi my name is and I am currently being " tested " for

fibromalgia. In other words, I am being tested for everything else,

THEN if all is negative, they might dx me with fibro. I have many

questions for all of you. I have heard something about " brain fog "

or " fibro fog " . What is this? Lately, I just cannot think straight. I

do weird things like forget where I am going or pour my leftover drink

in the trash can instead of the sink. (There are MANY more weird things

I do now but there is not enough room/time to list them all!!)I am

having problems at work. I used to be able to make/decorate 4-5 cakes

an hour and now am down to only 1. (BTW--I am a cake decorator.)I have

2 children. One of them has juvenile arthritis.---

------------------------------------

[Guest guest]

Hi Melynda, you sure have had a rough time! I know that when kids are

in the process of diagnosis for arthritis that the symptoms sometimes

mimic symptoms of cancer. I noticed that you also have neuropathy. My

mother has that and fibromyalgia. I have been plagued with depression

since I was a kid. I am now 40. Anyway, I am so glad you are doing

better!!---

--- In , Melynda Gamez <melyndagamez@...>

wrote:

>

> hi rebecca, i have just been where you are right now. i have been

tested for everything under the sun.. i just had a recent scare, the

drs. thought i might have spinal cancer, i got the call today after 2

days of hell!! the not knowing is scarry but i can BREATH now!!! im

o.k. besides having severe ra,osteo,neuropathy & depression..... you

know what i cant complain cuz at least, im ALIVE!!!!!! i just saw THE

LAST LECTURE about the man who is dying from pancreatic cancer & he

is full of life, nothing compares to what he & his family is going

through... as for the 'brain fog' i can also relate too cuz i could

be talking about something & my mind goes blank & i cant think

straight either, ive told my drs. but they dont say much except i

could be on too much meds.... anyway, im doing better now thank

goodness!! take care rebecca & god bless, melyndagamez 4/9/08

10:32p.m.central time

>

>

> [ ] new to group---I may have fibromyalgia

>

> Hi my name is and I am currently being " tested " for

> fibromalgia. In other words, I am being tested for everything else,

> THEN if all is negative, they might dx me with fibro. I have many

> questions for all of you. I have heard something about " brain fog "

> or " fibro fog " . What is this? Lately, I just cannot think straight.

I

> do weird things like forget where I am going or pour my leftover

drink

> in the trash can instead of the sink. (There are MANY more weird

things

> I do now but there is not enough room/time to list them all!!)I am

> having problems at work. I used to be able to make/decorate 4-5

cakes

> an hour and now am down to only 1. (BTW--I am a cake decorator.)I

have

> 2 children. One of them has juvenile arthritis.---

>

>

> ------------------------------------

>

>

[Guest guest]

hi rebecca, thank-you for caring it means alot to me!!! god bless,melyndagamez

4/12/08 12:09p.m.central time

[ ] new to group---I may have fibromyalgia

>

> Hi my name is and I am currently being " tested " for

> fibromalgia. In other words, I am being tested for everything else,

> THEN if all is negative, they might dx me with fibro. I have many

> questions for all of you. I have heard something about " brain fog "

> or " fibro fog " . What is this? Lately, I just cannot think straight.

I

> do weird things like forget where I am going or pour my leftover

drink

> in the trash can instead of the sink. (There are MANY more weird

things

> I do now but there is not enough room/time to list them all!!)I am

> having problems at work. I used to be able to make/decorate 4-5

cakes

> an hour and now am down to only 1. (BTW--I am a cake decorator.)I

have

> 2 children. One of them has juvenile arthritis.---

>

>

> ------------------------------------

>

>

[Guest guest]

Hi !!

Sorry it took me a bit of time to get my list of books together for you on

Fibromyalgia! I've had a little bit of a health crisis going on and had to get

to the bookshelf to pull them off!!

One of the BEST books you can get on the subject is Fibromyalgia and Chronic

Myofascial Pain A Survival Manual by Devin Starlanyl and Ellen Copeland -

this book is rather thick. I keep it as a reference manual! It explains trigger

points, why we have them, why we get dizziness, why we get some of the things we

get. It has informaton on treatment, how to live with the disease basically.

I also purchased Fibromyalgia for Dummies by Roland Staud. It's also very

good although not as comprehensive as the other manual. This one is clear and

concise though.

The Fibromyalgia Help Book A practical guide to living better with

fibromyalgia is also very helpful.

And one of the best books for anyone is We Are Not Alone-Learning to Live with

Chronic Illness by Sefra Kobrin Pitzele. It takes one through the changes of

grief, it takes you through setting new life goals, it helps by suggesting how

to pace ourselves, tools that make living easier. It's a great read!

Also, if you go to www.arthritis.org you can request a free packet of

information on Fibromyalgia and they will send it to you!!

I hope this helps you:)

rebpick1artist <rebpick1artist@...> wrote:

Wow, this all sounds so familiar! (putting stuff in the wrong place,

saying the wrong words, poor memory) Yes, I guess I have to laugh

about it also. My dog looks at me like I am nuts. Last night I

thought I had let him out in the back yard and that the gate was

open. I was sure he had gotten loose. I began getting dressed to go

find him when I noticed him sitting on the couch watching me! I had

not even let him out!----When I think about that stuff it is kind of

funny but then I think about how hard it is to work or get anything

done. I am currently on Cymbalta. (for Restless Leg Syndrome) I would

love a list of those books you mentioned.---

> >

> > Hi my name is and I am currently being " tested " for

> > fibromalgia. In other words, I am being tested for everything

else,

> > THEN if all is negative, they might dx me with fibro. I have

many

> > questions for all of you. I have heard something about " brain

fog "

> > or " fibro fog " . What is this? Lately, I just cannot think

straight.

> I

> > do weird things like forget where I am going or pour my leftover

> drink

> > in the trash can instead of the sink. (There are MANY more weird

> things

> > I do now but there is not enough room/time to list them all!!)I

am

> > having problems at work. I used to be able to make/decorate 4-5

> cakes

> > an hour and now am down to only 1. (BTW--I am a cake decorator.)

I

> have

> > 2 children. One of them has juvenile arthritis.---

> >

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

hi rebecca! yeah, the diagnosis process can be long and frustrating

(esp for fms), but hang in there. and i would def talk to your doc

about checking for trigger points, because that is huge for dx. i know

for me the more tests that came back negative, the more i got

frustrated because fms isnt as concrete as some diseases. but i'd

encourage you to remember that it is just as real and difficult (dont

let anyone tell you otherwise). as for the fibro fog, i totally know

what you are talking about. i am finishing up college right now and it

has made writing papers or answering questions in class or giving

presentations (things that i used to be decent at) a disaster. but

everyone is right, you have to find the humor in it, that is the only

way to stay sane. good luck with the dx. and i hope they can put you on

some decent meds; i know that the only things that have helped my pain

have been soma (muscle relaxant) and narcotics (norco or vicodin).

>

> Hi my name is and I am currently being " tested " for

> fibromalgia. In other words, I am being tested for everything else,

> THEN if all is negative, they might dx me with fibro. I have many

> questions for all of you. I have heard something about " brain fog "

> or " fibro fog " . What is this? Lately, I just cannot think straight. I

> do weird things like forget where I am going or pour my leftover

drink

> in the trash can instead of the sink. (There are MANY more weird

things

> I do now but there is not enough room/time to list them all!!)I am

> having problems at work. I used to be able to make/decorate 4-5 cakes

> an hour and now am down to only 1. (BTW--I am a cake decorator.)I

have

> 2 children. One of them has juvenile arthritis.---

>

[Guest guest]

Basically, trigger points and specified symptoms of over 6 months will give the

FMS diagnosis as long as the trigger point criteria is met. There are no

lab/blood tests that will diagnose FMS. They do those tests to rule out other

conditions that it can be. It's often a " lets eliminate what its not " and then

we will see type thing.

hpigrl316 <hollythomas@...> wrote: hi

rebecca! yeah, the diagnosis process can be long and frustrating

(esp for fms), but hang in there. and i would def talk to your doc

about checking for trigger points, because that is huge for dx. i know

for me the more tests that came back negative, the more i got

frustrated because fms isnt as concrete as some diseases. but i'd

encourage you to remember that it is just as real and difficult (dont

let anyone tell you otherwise). as for the fibro fog, i totally know

what you are talking about. i am finishing up college right now and it

has made writing papers or answering questions in class or giving

presentations (things that i used to be decent at) a disaster. but

everyone is right, you have to find the humor in it, that is the only

way to stay sane. good luck with the dx. and i hope they can put you on

some decent meds; i know that the only things that have helped my pain

have been soma (muscle relaxant) and narcotics (norco or vicodin).

>

> Hi my name is and I am currently being " tested " for

> fibromalgia. In other words, I am being tested for everything else,

> THEN if all is negative, they might dx me with fibro. I have many

> questions for all of you. I have heard something about " brain fog "

> or " fibro fog " . What is this? Lately, I just cannot think straight. I

> do weird things like forget where I am going or pour my leftover

drink

> in the trash can instead of the sink. (There are MANY more weird

things

> I do now but there is not enough room/time to list them all!!)I am

> having problems at work. I used to be able to make/decorate 4-5 cakes

> an hour and now am down to only 1. (BTW--I am a cake decorator.)I

have

> 2 children. One of them has juvenile arthritis.---

>