Re: Hello from a Newly Diagnosed Person

[Guest guest]

Hi and welcome to the list. I hope you enjoy it. Your story sounds much like

mine. But it took two years to get to the bottom of things with me and took

me going in saying I think it is this and this. LOL I no all to well the

everyday torment that it causes and no that feeling of going from an active

person to a person who can't even make myself dinner some days. I have

thought of starting a group for husbands and loved ones dealing with those

of us with Fibro and other chronic pain conditions. Wonder if it would go

over. Feel free to add me to you msn if you have it my name is

dollyleadstheway@...

or my aim is

cacandarm

sending big hugs. I would highly suggest seeing a pain management doctor.

There awesome and mine spent almost 2 hours strait with me the first time. I

wanted to kiss her I felt so good knowing some one cared and was going to

help. lol

Amber & GSD Ruby

Age is no better, hardly so well qualified for an instructor as youth, for

it has not profited so much as it has lost

Henry Thoreau

Hello from a Newly Diagnosed Person

> Hello!

>

> I have been looking online since I got my diagnosis Friday to find other

> people

> who might actually UNDERSTAND how this all feels. Most lists seem to be

> inactive on the weekends or everyone's in bed (in which case I totally

> empathize) so I am just hoping to make some connections. I apologize if

> this is

> too long.

>

> I was diagnosed with fibromyalgia on Friday by my neurologist. It's

> interesting

> why I even had to see a neurologist in the first place, & maybe some of

> you

> have had similar experiences.

>

> Last July I started having problems hanging up clothes, and having back

> pain

> when I'd never had it before. I went to the doctor I've been seeing since

> 1999

> & she suggested a physiatrist, but I insisted on a rheumatology referral

> because I had had knee pain since I was 6. The rheumatologist said I could

> have

> a number of things, but due to my unreasonable response when he palpated

> my

> back, it could be fibromyalgia.

>

> In the meantime, I got a lot worse, having muscle stiffening, trouble

> swallowing

> warm liquids, headaches, sharp pains, tingling, numbness, weakness,

> crushing

> fatigue, stomach problems, completely stopped going out with friends,

> falling

> in the grocery store...you know the drill.

>

> After some more blood tests to rule out other things, I saw my regular

> doctor

> again. I made sure I had a written list of all my symptoms because I

> always,

> always forget or I think they're not important. She said, " Has anybody

> talked

> to you about MS? " I said, " No, but the rheumatologist suggested

> fibromyalgia,

> which I understand shares many common symptoms. "

>

> She was obviously angry. " I can't believe he tried to stick you with

> 'fibromyalgia'. " She said the word with a bit of a sneer. " Look, we'll get

> an

> MRI of your brain. Even if you don't have any lesions, you may still have

> multiple sclerosis. " She then proceeded to talk to me for 20 minutes about

> multiple sclerosis, with a medical student in the room with us nodding

> sagely.

> When was the last time a doctor talked to you about *ANYTHING* for 20

> minutes?

> Especially if you have an HMO? ; )

>

> I had my MRI. It was normal. I called my doctor's office & she said she

> still

> wanted me to see a neurologist, in case it was pre-lesion MS. The next

> appointment the neurologist had was 3 months later (last Friday). So for

> three

> months, I am panicking, trying to learn as much as I can about MS & also

> trying

> not to have MS, if that makes any sense, scared out of my mind about MS.

> People

> I know with family members with MS were saying to me, " Oh, you totally

> sound

> like my mom/sister/cousin " etc. And then of course, what if it's worse?

> What's

> if it's ALS? I'm the right age for it...do I have five years to live?

> Sometimes

> I twitch uncontrollably...that's a sign of ALS, too.

>

> So I see the neurologist on Friday & the first thing she says after

> reviewing my

> chart is " You don't have MS. " I then explained to her what my doctor said,

> that

> lots of people don't have lesions on their first MRI, & she said, " If you

> were

> 18, I would possibly buy that. But you're 32. You would have lesions. "

>

> She then very kindly read the 4 page history I had taken of myself because

> when

> she asked me directly, I had no recollection whatsoever. She then palpated

> various spots on my body & made me walk around & pressed & poked a few

> things.

> Then she asked me to sit back down.

>

> " I think the rheumatologist was right. You have fibromyalgia. " I just

> looked at

> her.

>

> " I don't think my family doctor believes in fibromyalgia, " I finally said.

> I

> know for a fact that one of the surgeons I work for, who is also my

> friend,

> doesn't believe in fibromyalgia. He thinks it's something people are

> diagnosed

> with when the doctor can't find a " real " reason for your symptoms.

>

> " Well, *I* believe in fibromyalia, " the neurologist said. " I have many

> patients

> with fibromyalgia, & I'm going to put that you have fibromyalgia in a

> report to

> your doctor. "

>

> I was just sort of stunned. Here was a brain specialist telling me that

> what was

> happening to me was real, & it had a name, and that, she also said, " There

> are

> lots of things we can do for fibromyalgia. " She gave me a script for

> Flexeril

> (I'm already on Welbutrin so we didn't talk about antidepressants). I told

> her

> my main goal was to get my physical functioning back so I can continue to

> lose

> weight. My muscles are probably the worse physical symptom I have. They

> betray

> me daily.

>

> I told my surgeon friend my diagnosis & I also said, " She believes in

> fibromyalgia and she's a neurologist. " And he said, " Well, at least you

> don't

> have something that will just get worse & kill you. " And I said, " You're

> confusing MS with ALS. " I have learned something over the

> years...specialists

> specialize for a reason. ; ) I think I am going to have to educate my

> surgeon

> friend about fibromyalgia, and possibly other neurological diseases.

>

> So now I'm stuck between the denial & anger phases of the grieving

> process. I am

> really angry at my regular doctor for just ignorning the possiblity of

> fibromyalgia & scaring me with talk about MS. I really liked her, too;

> after

> all, I've seen her for 7 years. I am angry that we didn't start tackling

> fibromyalgia months ago. I am angry that there isn't a " lab test " that

> " proves "

> I have fibromyalgia to other doctors.

>

> But most of all I am really angry at my father, who is a cardiologist, for

> dismissing my frequent childhood leg pains as " growing pains. " How many

> children do you know who use Icy Hot twice a week to deaden the pain

> enough to

> fall asleep??! From reading " The Survival Manual " I get the DISTINCT

> impression

> that this was an early warning sign of fibromyalgia!

>

> When I worked for my father in his office, he had several patients who had

> fibromyalgia in their records...that's how I learned about it. I asked him

> what

> it was and, being a cardiologist, he said, " It's a pain condition. These

> people

> have sticky muscles & it hurts. " And that was about it. He also ran blood

> tests

> on me for lupus & rheumatoid arthritis since I kept having the " knee

> pains " up

> through my teens & adulthood; all negative.

>

> My fiance is being about as kind as somebody who is used to having his

> laundry

> done for him & his food cooked for him & his house cleaned for him CAN be

> when

> he is now faced with having to do much of this himself.

>

> Anyway, I am hoping to meet & talk to people who understand, because so

> far, I

> haven't really met anybody who gets it, or necessarily believes in my

> diagnosis!! I am hoping very much that it gets BETTER from here on out,

> now

> that I know what I'm facing, instead of worse.

>

> Thanks for listening,

>

> Kellie Jane (better known online as KJ)

> *http://www.myspace.com/kelliejane

> *http://www.youravon.com/kadan

> " Like German tourists, the stupid are everywhere. " -A.J. Rimmer

>

>

>

>

>

> 1. While it is wonderful to share our experiences with everyone on the

> list as to what treatments do and don't work for us, pls always check with

> your dr. Some treatments are dangerous when given along with other meds

> as well as to certain health conditions or just dangerous in general.

>

> 2. If you are in a difficult situation (doesn't matter what it is) pls

> don't be afraid to ask for help. It is the first step to trying to make

> that situation better.

>

> 3. To unsubscribe the e-mail is:

> Fibromyalgia_Support_Group-unsubscribe

>

> 4. Also, it is not uncommon for more than one member to be feeling bad at

> the same time when it comes to flares and b/c of that potentially take

> something another member says the wrong way. And that includes the things

> that one member may find funny (even if it's laughing at fibro itself)

> even though we who deal with illness whether one such as fibro or multiple

> illnesses try to keep a sense of humor.

>

> 5. Pls let's be gentle with each other, and if you are having a bad day

> pls let us know so that we can do our best to offer our support.

>

> Have a nice day everyone.

>

>

[Guest guest]

Hi KJ,

Your entire story sounds all too familiar! Most of us here have the same symptoms as you do. I also remember being told in childhood that I had growing pains. My two sons never underwent those sort of pains and now they are adult have no signs of Fibromyalgia.

It seems odd to welcome someone to the world of Fibromyalgia, but you will find a very sympathetic group of people here. We all understand the problems that you have.

Penny UK

> Hello!> > I have been looking online since I got my diagnosis Friday to find other> people> who might actually UNDERSTAND how this all feels. Most lists seem to be> inactive on the weekends or> everyone's in bed (in which case I totally> empathize) so I am just hoping to make some connections. I apologize if this is> too long.> > I was diagnosed with fibromyalgia on Friday by my neurologist. It's> interesting> why I even had to see a neurologist in the first place, & maybe some of> you> have had similar experiences.> > Last July I started having problems hanging up clothes, and having back> pain> when I'd never had it before. I went to the doctor I've been seeing since> 1999> & she suggested a physiatrist, but I insisted on a rheumatology referral> because I had had knee pain since I was 6. The rheumatologist said I could> have> a number of things, but due to my unreasonable response when he palpated> my> back, it could be fibromyalgia.> > In the meantime, I got a lot worse, having muscle stiffening, trouble> swallowing> warm liquids, headaches, sharp pains, tingling, numbness, weakness,> crushing> fatigue, stomach problems, complete

[Guest guest]

Hi Amber! Thanks for welcoming me.

Quoting Amber & GSD Ruby :

> I have thought of starting a group for husbands and loved ones dealing with

>those of us with Fibro and other chronic pain conditions. Wonder if it would

>go over.

I think that's a GREAT idea! I was actually wondering if they had those today,

for Rick, since he really seems perplexed by all of this. And he doesn't seem

to understand that if he swears at the cats, I get upset, get tense, start to

hurt, etc.

> I would highly suggest seeing a pain management doctor.

You know, I have become good aquaintances with my counterpart at a pain

management clinic here in town (I do credentialing for a large surgical group).

He likes me because I update doctor information before it's due. ; ) Anyhow, I

wonder if HE could recommend a good pain specialist to see!

> There awesome and mine spent almost 2 hours strait with me the first time. I

> wanted to kiss her I felt so good knowing some one cared and was going to

> help.

I understand that! I was wondering if I should send flowers to my neurologist

when we were done. ; )

--kj

*http://www.youravon.com/kadan

" Like German tourists, the stupid are everywhere. " -A.J. Rimmer

[Guest guest]

Hi Penny, something you said totally resonated with me:

Quoting ygo65@...:

> Your entire story sounds all too familiar! Most of us here have the same

> symptoms as you do. I also remember being told in childhood that I had

> growing pains.

You put next to your name " UK " , so I am assuming you are living in the United

Kingdom? I was born & raised in London. I wonder if it's National Health thing

to just say kids have growing pains? Do any of our American counterparts have

similar childhood misdiagnoses??

Though in defence [defense in American ] of English medicine, I don't think my

father actually ever took me to see a doctor about my leg pain. He didn't do it

when we moved to the US, either. He didn't even acknowledge it until I was in

my twenties, & then he had a bunch of blood drawn on me. It's been said that

having a doctor for a parent curses you to a life of bad health, because they

never take their kids' complaints seriously...everybody they see tends to be

dying, and since you're not, you can go to school. ; )

> It seems odd to welcome someone to the world of Fibromyalgia, but you will

> find a very sympathetic group of people here.

You know what's funny? When I told one of my coworkers that I had fibromyalgia &

NOT MS, she said, " Congratulations! You have fibromyalgia! " One of my other

coworkers dryly replied, " Wow, I'm sure she's thrilled. " I guess I'd rather be

welcomed into a group of kind people than congratulated for this. ; )

--kj

*http://www.youravon.com/kadan

" Like German tourists, the stupid are everywhere. " -A.J. Rimmer

[Guest guest]

Hi Kellie, welcome to the group. Another site that is very informative is prohealth.com It has tons of info and also a chatroom and message board. Try it if you haven't already. I go there alot and chat during the evening hours. Hope for the best with this, DebbieKJ Adan wrote: Hello!I have been looking online since I got my diagnosis Friday to find other peoplewho might actually UNDERSTAND how this all feels. Most lists seem to beinactive on the weekends or everyone's in bed (in which case I totallyempathize) so I am just hoping to make some connections. I apologize if this istoo long.I was diagnosed with fibromyalgia on Friday by my neurologist. It's interestingwhy I even had to see a neurologist in the first place, &

maybe some of youhave had similar experiences.Last July I started having problems hanging up clothes, and having back painwhen I'd never had it before. I went to the doctor I've been seeing since 1999 & she suggested a physiatrist, but I insisted on a rheumatology referralbecause I had had knee pain since I was 6. The rheumatologist said I could havea number of things, but due to my unreasonable response when he palpated myback, it could be fibromyalgia.In the meantime, I got a lot worse, having muscle stiffening, trouble swallowingwarm liquids, headaches, sharp pains, tingling, numbness, weakness, crushingfatigue, stomach problems, completely stopped going out with friends, fallingin the grocery store...you know the drill.After some more blood tests to rule out other things, I saw my regular doctoragain. I made sure I had a written list of all my symptoms because I always,always forget or I think

they're not important. She said, "Has anybody talkedto you about MS?" I said, "No, but the rheumatologist suggested fibromyalgia,which I understand shares many common symptoms."She was obviously angry. "I can't believe he tried to stick you with'fibromyalgia'." She said the word with a bit of a sneer. "Look, we'll get anMRI of your brain. Even if you don't have any lesions, you may still havemultiple sclerosis." She then proceeded to talk to me for 20 minutes aboutmultiple sclerosis, with a medical student in the room with us nodding sagely.When was the last time a doctor talked to you about *ANYTHING* for 20 minutes?Especially if you have an HMO? ; )I had my MRI. It was normal. I called my doctor's office & she said she stillwanted me to see a neurologist, in case it was pre-lesion MS. The nextappointment the neurologist had was 3 months later (last Friday). So for threemonths, I am panicking, trying to learn

as much as I can about MS & also tryingnot to have MS, if that makes any sense, scared out of my mind about MS. PeopleI know with family members with MS were saying to me, "Oh, you totally soundlike my mom/sister/cousin" etc. And then of course, what if it's worse? What'sif it's ALS? I'm the right age for it...do I have five years to live? SometimesI twitch uncontrollably...that's a sign of ALS, too.So I see the neurologist on Friday & the first thing she says after reviewing mychart is "You don't have MS." I then explained to her what my doctor said, thatlots of people don't have lesions on their first MRI, & she said, "If you were18, I would possibly buy that. But you're 32. You would have lesions."She then very kindly read the 4 page history I had taken of myself because whenshe asked me directly, I had no recollection whatsoever. She then palpatedvarious spots on my body & made me walk around &

pressed & poked a few things.Then she asked me to sit back down."I think the rheumatologist was right. You have fibromyalgia." I just looked ather."I don't think my family doctor believes in fibromyalgia," I finally said. Iknow for a fact that one of the surgeons I work for, who is also my friend,doesn't believe in fibromyalgia. He thinks it's something people are diagnosedwith when the doctor can't find a "real" reason for your symptoms."Well, *I* believe in fibromyalia," the neurologist said. "I have many patientswith fibromyalgia, & I'm going to put that you have fibromyalgia in a report toyour doctor."I was just sort of stunned. Here was a brain specialist telling me that what washappening to me was real, & it had a name, and that, she also said, "There arelots of things we can do for fibromyalgia." She gave me a script for Flexeril(I'm already on Welbutrin so we didn't talk about

antidepressants). I told hermy main goal was to get my physical functioning back so I can continue to loseweight. My muscles are probably the worse physical symptom I have. They betrayme daily.I told my surgeon friend my diagnosis & I also said, "She believes infibromyalgia and she's a neurologist." And he said, "Well, at least you don'thave something that will just get worse & kill you." And I said, "You'reconfusing MS with ALS." I have learned something over the years...specialistsspecialize for a reason. ; ) I think I am going to have to educate my surgeonfriend about fibromyalgia, and possibly other neurological diseases.So now I'm stuck between the denial & anger phases of the grieving process. I amreally angry at my regular doctor for just ignorning the possiblity offibromyalgia & scaring me with talk about MS. I really liked her, too; afterall, I've seen her for 7 years. I am angry that we

didn't start tacklingfibromyalgia months ago. I am angry that there isn't a "lab test" that "proves"I have fibromyalgia to other doctors.But most of all I am really angry at my father, who is a cardiologist, fordismissing my frequent childhood leg pains as "growing pains." How manychildren do you know who use Icy Hot twice a week to deaden the pain enough tofall asleep??! From reading "The Survival Manual" I get the DISTINCT impressionthat this was an early warning sign of fibromyalgia!When I worked for my father in his office, he had several patients who hadfibromyalgia in their records...that's how I learned about it. I asked him whatit was and, being a cardiologist, he said, "It's a pain condition. These peoplehave sticky muscles & it hurts." And that was about it. He also ran blood testson me for lupus & rheumatoid arthritis since I kept having the "knee pains" upthrough my teens & adulthood; all

negative.My fiance is being about as kind as somebody who is used to having his laundrydone for him & his food cooked for him & his house cleaned for him CAN be whenhe is now faced with having to do much of this himself.Anyway, I am hoping to meet & talk to people who understand, because so far, Ihaven't really met anybody who gets it, or necessarily believes in mydiagnosis!! I am hoping very much that it gets BETTER from here on out, nowthat I know what I'm facing, instead of worse.Thanks for listening,Kellie Jane (better known online as KJ)*http://www.myspace.com/kelliejane*http://www.youravon.com/kadan"Like German tourists, the stupid are everywhere." -A.J. Rimmer

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

Hi KJ Welcome!! Sorry to hear it took so long to diagnose but unfortunately this can be quite common. The good news is you have a diagnosis. Now you know what you are fighting. This is the first real step to managing this syndrome. Of course it is only natural for you to go through the stages of grieving. After all you have suffered a loss. The loss of who you were and wanted to be. This doesn't mean that you can't be great ...just a different great. We are always here and the people in this group are very wise and caring. welcome again A Canadian Fibro Friend KJ Adan wrote: Hello!I have been looking online since I got my diagnosis Friday to find other peoplewho might actually UNDERSTAND how this all feels. Most lists seem to beinactive on the weekends or everyone's in bed (in which case I totallyempathize) so I am just hoping to make some connections. I apologize if this istoo long.I was diagnosed with fibromyalgia on Friday by my neurologist. It's interestingwhy I even had to see a neurologist in the first place, & maybe some of youhave had similar experiences.Last July I started having problems hanging up clothes, and having back painwhen I'd

never had it before. I went to the doctor I've been seeing since 1999 & she suggested a physiatrist, but I insisted on a rheumatology referralbecause I had had knee pain since I was 6. The rheumatologist said I could havea number of things, but due to my unreasonable response when he palpated myback, it could be fibromyalgia.In the meantime, I got a lot worse, having muscle stiffening, trouble swallowingwarm liquids, headaches, sharp pains, tingling, numbness, weakness, crushingfatigue, stomach problems, completely stopped going out with friends, fallingin the grocery store...you know the drill.After some more blood tests to rule out other things, I saw my regular doctoragain. I made sure I had a written list of all my symptoms because I always,always forget or I think they're not important. She said, "Has anybody talkedto you about MS?" I said, "No, but the rheumatologist suggested fibromyalgia,which I

understand shares many common symptoms."She was obviously angry. "I can't believe he tried to stick you with'fibromyalgia'." She said the word with a bit of a sneer. "Look, we'll get anMRI of your brain. Even if you don't have any lesions, you may still havemultiple sclerosis." She then proceeded to talk to me for 20 minutes aboutmultiple sclerosis, with a medical student in the room with us nodding sagely.When was the last time a doctor talked to you about *ANYTHING* for 20 minutes?Especially if you have an HMO? ; )I had my MRI. It was normal. I called my doctor's office & she said she stillwanted me to see a neurologist, in case it was pre-lesion MS. The nextappointment the neurologist had was 3 months later (last Friday). So for threemonths, I am panicking, trying to learn as much as I can about MS & also tryingnot to have MS, if that makes any sense, scared out of my mind about MS. PeopleI know with

family members with MS were saying to me, "Oh, you totally soundlike my mom/sister/cousin" etc. And then of course, what if it's worse? What'sif it's ALS? I'm the right age for it...do I have five years to live? SometimesI twitch uncontrollably...that's a sign of ALS, too.So I see the neurologist on Friday & the first thing she says after reviewing mychart is "You don't have MS." I then explained to her what my doctor said, thatlots of people don't have lesions on their first MRI, & she said, "If you were18, I would possibly buy that. But you're 32. You would have lesions."She then very kindly read the 4 page history I had taken of myself because whenshe asked me directly, I had no recollection whatsoever. She then palpatedvarious spots on my body & made me walk around & pressed & poked a few things.Then she asked me to sit back down."I think the rheumatologist was right. You have

fibromyalgia." I just looked ather."I don't think my family doctor believes in fibromyalgia," I finally said. Iknow for a fact that one of the surgeons I work for, who is also my friend,doesn't believe in fibromyalgia. He thinks it's something people are diagnosedwith when the doctor can't find a "real" reason for your symptoms."Well, *I* believe in fibromyalia," the neurologist said. "I have many patientswith fibromyalgia, & I'm going to put that you have fibromyalgia in a report toyour doctor."I was just sort of stunned. Here was a brain specialist telling me that what washappening to me was real, & it had a name, and that, she also said, "There arelots of things we can do for fibromyalgia." She gave me a script for Flexeril(I'm already on Welbutrin so we didn't talk about antidepressants). I told hermy main goal was to get my physical functioning back so I can continue to loseweight. My muscles

are probably the worse physical symptom I have. They betrayme daily.I told my surgeon friend my diagnosis & I also said, "She believes infibromyalgia and she's a neurologist." And he said, "Well, at least you don'thave something that will just get worse & kill you." And I said, "You'reconfusing MS with ALS." I have learned something over the years...specialistsspecialize for a reason. ; ) I think I am going to have to educate my surgeonfriend about fibromyalgia, and possibly other neurological diseases.So now I'm stuck between the denial & anger phases of the grieving process. I amreally angry at my regular doctor for just ignorning the possiblity offibromyalgia & scaring me with talk about MS. I really liked her, too; afterall, I've seen her for 7 years. I am angry that we didn't start tacklingfibromyalgia months ago. I am angry that there isn't a "lab test" that "proves"I have fibromyalgia to

other doctors.But most of all I am really angry at my father, who is a cardiologist, fordismissing my frequent childhood leg pains as "growing pains." How manychildren do you know who use Icy Hot twice a week to deaden the pain enough tofall asleep??! From reading "The Survival Manual" I get the DISTINCT impressionthat this was an early warning sign of fibromyalgia!When I worked for my father in his office, he had several patients who hadfibromyalgia in their records...that's how I learned about it. I asked him whatit was and, being a cardiologist, he said, "It's a pain condition. These peoplehave sticky muscles & it hurts." And that was about it. He also ran blood testson me for lupus & rheumatoid arthritis since I kept having the "knee pains" upthrough my teens & adulthood; all negative.My fiance is being about as kind as somebody who is used to having his laundrydone for him & his food

cooked for him & his house cleaned for him CAN be whenhe is now faced with having to do much of this himself.Anyway, I am hoping to meet & talk to people who understand, because so far, Ihaven't really met anybody who gets it, or necessarily believes in mydiagnosis!! I am hoping very much that it gets BETTER from here on out, nowthat I know what I'm facing, instead of worse.Thanks for listening,Kellie Jane (better known online as KJ)*http://www.myspace.com/kelliejane*http://www.youravon.com/kadan"Like German tourists, the stupid are everywhere." -A.J. Rimmer1. While it is wonderful to share our experiences with everyone on the list as to what treatments do and don't work for us, pls always check with your dr. Some treatments are dangerous when given along

with other meds as well as to certain health conditions or just dangerous in general.2. If you are in a difficult situation (doesn't matter what it is) pls don't be afraid to ask for help. It is the first step to trying to make that situation better.3. To unsubscribe the e-mail is: Fibromyalgia_Support_Group-unsubscribe 4. Also, it is not uncommon for more than one member to be feeling bad at the same time when it comes to flares and b/c of that potentially take something another member says the wrong way. And that includes the things that one member may find funny (even if it's laughing at fibro itself) even though we who deal with illness whether one such as fibro or multiple illnesses try to keep a sense of humor.5. Pls let's be gentle with each other, and if you are having a bad day pls let us know so that we can do our best to offer our support.Have a nice day everyone.

[Guest guest]

Hey --kj, funny my husbands name is Rick. LOL I did start a groop last night

I will pass it on to the list. I would love to have some of us suffering to

give the members some advice. How many cats do you have? We have 5. One is a

14 week old Ragdoll. They all give me so much joy. My crabby girl noes when

I am bad and will just snuggle with me. Do inquire about a pain management

doctor. And I so understand the stress causing pain. I am always trying to

get that threw my Ricks head. LOL

Amber & GSD Ruby

Age is no better, hardly so well qualified for an instructor as youth, for

it has not profited so much as it has lost

Henry Thoreau

Re: Hello from a Newly Diagnosed Person

>

> Hi Amber! Thanks for welcoming me.

>

> Quoting Amber & GSD Ruby :

>

>> I have thought of starting a group for husbands and loved ones dealing

>> with

>>those of us with Fibro and other chronic pain conditions. Wonder if it

>>would

>>go over.

>

> I think that's a GREAT idea! I was actually wondering if they had those

> today,

> for Rick, since he really seems perplexed by all of this. And he doesn't

> seem

> to understand that if he swears at the cats, I get upset, get tense, start

> to

> hurt, etc.

>

>> I would highly suggest seeing a pain management doctor.

>

> You know, I have become good aquaintances with my counterpart at a pain

> management clinic here in town (I do credentialing for a large surgical

> group).

> He likes me because I update doctor information before it's due. ; )

> Anyhow, I

> wonder if HE could recommend a good pain specialist to see!

>

>> There awesome and mine spent almost 2 hours strait with me the first

>> time. I

>> wanted to kiss her I felt so good knowing some one cared and was going to

>> help.

>

> I understand that! I was wondering if I should send flowers to my

> neurologist

> when we were done. ; )

>

> --kj

> *http://www.youravon.com/kadan

> " Like German tourists, the stupid are everywhere. " -A.J. Rimmer

>

>

>

>

>

> 1. While it is wonderful to share our experiences with everyone on the

> list as to what treatments do and don't work for us, pls always check with

> your dr. Some treatments are dangerous when given along with other meds

> as well as to certain health conditions or just dangerous in general.

>

> 2. If you are in a difficult situation (doesn't matter what it is) pls

> don't be afraid to ask for help. It is the first step to trying to make

> that situation better.

>

> 3. To unsubscribe the e-mail is:

> Fibromyalgia_Support_Group-unsubscribe

>

> 4. Also, it is not uncommon for more than one member to be feeling bad at

> the same time when it comes to flares and b/c of that potentially take

> something another member says the wrong way. And that includes the things

> that one member may find funny (even if it's laughing at fibro itself)

> even though we who deal with illness whether one such as fibro or multiple

> illnesses try to keep a sense of humor.

>

> 5. Pls let's be gentle with each other, and if you are having a bad day

> pls let us know so that we can do our best to offer our support.

>

> Have a nice day everyone.

>

>

[Guest guest]

Yes KJ,

I am in England, like you I was born in London. You are living in Nevada now?

I am not sure if 'growing pains' was the doctors' diagnosis or just my parents either. It's all too easy to have hindsight and to think that our symptoms should have been obvious isn't it? I am very glad that so far my sons have shown no symptoms at all, though men rarely seem to get Fibromyalgia. I hope any future grand daughters of mine don't get it.

Penny UK

Re: Hello from a Newly Diagnosed Person

Hi Penny, something you said totally resonated with me:Quoting ygo65@...:> Your entire story sounds all too familiar! Most of us here have the same> symptoms as you do. I also remember being told in childhood that I had> growing pains.You put next to your name "UK", so I am assuming you are living in the UnitedKingdom? I was born & raised in London. I wonder if it's National Health thingto just say kids have growing pains? Do any of our American counterparts havesimilar childhood misdiagnoses??Though in defence [defense in American ] of English medicine, I don't think myfather actually ever took me to see a doctor about my leg pain. He didn't do itwhen we moved to the US, either. He didn't even acknowledge it until I was inmy twenties, & then he had a bunch of blood drawn on me. It's been said thathaving a doctor for a parent curses you to a life of bad health, because theynever take their kids' complaints seriously...everybody they see tends to bedying, and since you're not, you can go to school. ; )> It seems odd to welcome someone to the world of Fibromyalgia, but you will> find a very sympathetic group of people here.You know what's funny? When I told one of my coworkers that I had fibromyalgia & NOT MS, she said, "Congratulations! You have fibromyalgia!" One of my othercoworkers dryly replied, "Wow, I'm sure she's thrilled." I guess I'd rather bewelcomed into a group of kind people than congratulated for this. ; )--kj*http://www.youravon.com/kadan"Like German tourists, the stupid are everywhere." -A.J. Rimmer

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[Guest guest]

Dear ,It is quite the slap in the face to have a condition that probably not even half the population belives in. I was dxed with lupus a few years ago, and then when I moved and got a new doc he told me I didn't have lupus I had Fibro. Like you no one understood, and no one belived me, or in the dx.Even though lupus could kill you I found myself wishing I had lupus, because then at least I would get the repect I need on bad days, when heating something in the microwave is about all I can do to get dinner on the table. My husband doesn't belive in Fibro, but he knows I am in pain, and has taken over some of my household duties. The three things that have helped me cope is - this group - the fibromyagia md forum - and keeping a journal, I have two journals. One is symptoms, exersise, diet, body functions, stuff like that for my doc. The second is just for me. My thoughts, my anger, my pain both physical, and emotional. I have had really bad reactions to

meds. Even if I take to much over the counter pain meds I get sick, and feel side effects. For my pain I have found stretching, yoga, pilates, EFT Emotional Freedom Technique, hot baths, and dry rice heated in a sock in the microwave to be my lifeline I guess. Before the dx I quit moving alot cause it hurt which I have learned was not the best idea, but I thought it was my joints - feels like my joints anyway. You are not alone in this. This is a huge group, and most of the time there is someone online. If you would like to add me to messanger you may. I will accept anyone from the group on my friends list. As for my family I continue to email them info about Fibro, and print it out for my husband. Did you know there is a type of topical cream called Fibromyagia? I didn't until the other day. I am going to look for it in the store. Why would they make a product for something that doesn't exist? Maybe it will get through to some. Anyways, take care, and I am

sorry I rambled on. I hope today is as painfree as it can be,KJ Adan wrote: Hello! I have been looking online since I got my diagnosis Friday to find other people who might actually UNDERSTAND how this all feels. Most lists seem to be inactive on the weekends or everyone's in bed (in which case I totally empathize) so I am just hoping to make some connections. I apologize if this is too long. I was diagnosed with fibromyalgia on Friday by my neurologist. It's interesting why I even had to see a neurologist in the first place, & maybe some of you have had similar experiences. Last July I started having problems hanging up clothes, and having back pain when I'd never had it before. I went to the doctor I've been seeing since 1999 & she

suggested a physiatrist, but I insisted on a rheumatology referral because I had had knee pain since I was 6. The rheumatologist said I could have a number of things, but due to my unreasonable response when he palpated my back, it could be fibromyalgia. In the meantime, I got a lot worse, having muscle stiffening, trouble swallowing warm liquids, headaches, sharp pains, tingling, numbness, weakness, crushing fatigue, stomach problems, completely stopped going out with friends, falling in the grocery store...you know the drill. After some more blood tests to rule out other things, I saw my regular doctor again. I made sure I had a written list of all my symptoms because I always, always forget or I think they're not important. She said, "Has anybody talked to you about MS?" I said, "No, but the rheumatologist suggested fibromyalgia, which I understand shares many common symptoms." She was obviously angry.

"I can't believe he tried to stick you with 'fibromyalgia'." She said the word with a bit of a sneer. "Look, we'll get an MRI of your brain. Even if you don't have any lesions, you may still have multiple sclerosis." She then proceeded to talk to me for 20 minutes about multiple sclerosis, with a medical student in the room with us nodding sagely. When was the last time a doctor talked to you about *ANYTHING* for 20 minutes? Especially if you have an HMO? ; ) I had my MRI. It was normal. I called my doctor's office & she said she still wanted me to see a neurologist, in case it was pre-lesion MS. The next appointment the neurologist had was 3 months later (last Friday). So for three months, I am panicking, trying to learn as much as I can about MS & also trying not to have MS, if that makes any sense, scared out of my mind about MS. People I know with family members with MS were saying to me, "Oh, you totally

sound like my mom/sister/cousin" etc. And then of course, what if it's worse? What's if it's ALS? I'm the right age for it...do I have five years to live? Sometimes I twitch uncontrollably...that's a sign of ALS, too. So I see the neurologist on Friday & the first thing she says after reviewing my chart is "You don't have MS." I then explained to her what my doctor said, that lots of people don't have lesions on their first MRI, & she said, "If you were 18, I would possibly buy that. But you're 32. You would have lesions." She then very kindly read the 4 page history I had taken of myself because when she asked me directly, I had no recollection whatsoever. She then palpated various spots on my body & made me walk around & pressed & poked a few things. Then she asked me to sit back down. "I think the rheumatologist was right. You have fibromyalgia." I just looked at her. "I

don't think my family doctor believes in fibromyalgia," I finally said. I know for a fact that one of the surgeons I work for, who is also my friend, doesn't believe in fibromyalgia. He thinks it's something people are diagnosed with when the doctor can't find a "real" reason for your symptoms. "Well, *I* believe in fibromyalia," the neurologist said. "I have many patients with fibromyalgia, & I'm going to put that you have fibromyalgia in a report to your doctor." I was just sort of stunned. Here was a brain specialist telling me that what was happening to me was real, & it had a name, and that, she also said, "There are lots of things we can do for fibromyalgia." She gave me a script for Flexeril (I'm already on Welbutrin so we didn't talk about antidepressants). I told her my main goal was to get my physical functioning back so I can continue to lose weight. My muscles are probably the worse physical

symptom I have. They betray me daily. I told my surgeon friend my diagnosis & I also said, "She believes in fibromyalgia and she's a neurologist." And he said, "Well, at least you don't have something that will just get worse & kill you." And I said, "You're confusing MS with ALS." I have learned something over the years...specialists specialize for a reason. ; ) I think I am going to have to educate my surgeon friend about fibromyalgia, and possibly other neurological diseases. So now I'm stuck between the denial & anger phases of the grieving process. I am really angry at my regular doctor for just ignorning the possiblity of fibromyalgia & scaring me with talk about MS. I really liked her, too; after all, I've seen her for 7 years. I am angry that we didn't start tackling fibromyalgia months ago. I am angry that there isn't a "lab test" that "proves" I have fibromyalgia to other doctors.

But most of all I am really angry at my father, who is a cardiologist, for dismissing my frequent childhood leg pains as "growing pains." How many children do you know who use Icy Hot twice a week to deaden the pain enough to fall asleep??! From reading "The Survival Manual" I get the DISTINCT impression that this was an early warning sign of fibromyalgia! When I worked for my father in his office, he had several patients who had fibromyalgia in their records...that's how I learned about it. I asked him what it was and, being a cardiologist, he said, "It's a pain condition. These people have sticky muscles & it hurts." And that was about it. He also ran blood tests on me for lupus & rheumatoid arthritis since I kept having the "knee pains" up through my teens & adulthood; all negative. My fiance is being about as kind as somebody who is used to having his laundry done for him & his food cooked

for him & his house cleaned for him CAN be when he is now faced with having to do much of this himself. Anyway, I am hoping to meet & talk to people who understand, because so far, I haven't really met anybody who gets it, or necessarily believes in my diagnosis!! I am hoping very much that it gets BETTER from here on out, now that I know what I'm facing, instead of worse. Thanks for listening, Kellie Jane (better known online as KJ) *http://www.myspace.com/kelliejane *http://www.youravon.com/kadan "Like German tourists, the stupid are everywhere." -A.J. Rimmer

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[Guest guest]

Hi ,

Sorry it's taken me so long to respond to all of you, but you know fibro!

Quoting Burchfield :

> It is quite the slap in the face to have a condition that probably not even

> half the population belives in.

It's also quite weird. I have befriended some of the surgeons that I work for,

and one actually very kindly asks me how I'm doing & how I feel on a rather

regular basis. However, when I bring up fibromyalgia, I sense a bit of

trepidation. I'm sure he respects my neurologist's assessment, but you know

surgeons...if they can't cut it out of you, it's not real. : )

> Even though lupus could kill you I found myself wishing I had lupus, because

> then at least I would get the repect I need on bad days, when heating

> something in the microwave is about all I can do to get dinner on the table.

I understand! The other day on father's day, I was talking to my fiance's

father, who is a wonderful man who is 80 & still working as hard as a man half

his age. He asked me if I'd gotten a dx yet, & I said fibromyalgia, & he said,

" Well, that's great. At least it will go away. MS would have been much worse,

huh? " and I said, " Well, no, actually, fibromyalgia doesn't go away, either.

The symptoms are actually quite similar to MS, except fibromyalgia has no

permanent damage like the demyelinzation of MS. " And he said, " Well, you're

getting better now, aren't you? " And I just said, " The medication makes me move

better " and handed the phone back to my fiance, because I could just not figure

out how to " justify " myself over the phone at that moment. Isn't weird that we

feel like we have to " prove " our syndrome or disease or what have you is real?

> My husband doesn't belive in Fibro, but he knows I am in pain, and has taken

> over some of my household duties.

I don't understand how your husband can't believe in your diagnosis when you got

it from a DOCTOR. How does he explain that?

> The three things that have helped me cope is - this group - the fibromyagia

> md forum - and keeping a journal, I have two journals. One is symptoms,

> exersise, diet, body functions, stuff like that for my doc. The second is

> just for me. My thoughts, my anger, my pain both physical, and emotional.

I have a blog on MySpace & even though I'm trying to keep it FMS free now, I

still end up whinging about pain & lethargy. It's just a big part of my life. I

can't escape it, so my blog can't either.

> I have had really bad reactions to meds. Even if I take to much over the

> counter pain meds I get sick, and feel side effects.

Im sorry, that's awful. I don't know what I would do without Flexeril &

Welbutrin.

> dry rice heated in a sock in the microwave

I have the far less ingenious but quite lovely Body Shop version of that...it's

a buckwheat hull/lavender chambered pillow thing you heat in the microwave &

then drape over or wrap around whatever part of you hurts. I love that thing.

I probably could have saved a lot of money if I had the ingenuity to do the rice

sock thing!

> Before the dx I quit moving alot cause it hurt which I have learned was not >

the best idea

I figured that out, too. I am now consistently doing 15 minutes of walking a

day, and ramped that up to 20 - 25 minutes this week, except last night I way

over did it & am paying for it threefold today!

> Why would they make a product for something that doesn't exist? Maybe

> it will get through to some.

That's a VERY good question, .

> Anyways, take care, and I am sorry I rambled on.

Oh no, I liked your 'rambling.' Thanks for responding to mine!

--kj

*http://kadan.avonrepresentative.com/

" Like German tourists, the stupid are everywhere. " -A.J. Rimmer