Re: Saluations Tom

[Guest guest]

Hi Tom Welcome to the group of alot! It is nice to see, but not for you guys

that there have recently been added some more males, as I am newer since Feb.,

but belive was the only man on, so now you men will have company not just

some of us on top of the Fibro raging hormonal crisis!.LOL I wanted to say that

for each one of us, and I have been reusserd by my Dr's and Pharmicist, it is

trial and error finding what will work to releave or even completley hold off

the aches, pains, fogs, moods etc. of this disease. What works for one doesn't

in another, I have been on ever concoction of meds they can think of and have

had the bad side effects or just won't work, including vitaman regi. I could

not tolerate at all the steroid meds. But do have a hint of suggestion given me

yrs ago for my TMJ, as I also am a jaw clincher to try and fight pain and even

was doing it in my sleep, and hurt so bad, I did this for yrs, before they knew

this disease was out there, they just

didn't know why I hurt. But know most times when I catch myself doing this I

catch myself and try and stop,what the dentist had me do was roll up a face

cloth and put it between my teeth, now I know you can't do this at work or out

in public, but I did it every other time I could, and also practice lining your

top and bottom teeth together very lightly.Like I said I am about 15 yrs agead

of you so took alot of work to get to where I could work on relax instead of

clench. I did start doing it again when pain increased last fall, but have

stopped most of the time. The molded mouth peice is a waste I bit right through

it. Hoping you lighter days Sharon

oni_no_hentai wrote:

Hello,

I'm 37 and living in Louisville, KY US and was diagnosed late last

year after suffering begining just over a year ago. My rhumetoligist

sent me to another DR that specilizes in Fibro (Healing Options is

the name of the office) and we're still finding a balance.

Still have to have hydrocodone for the spikes in pain during the

day. Also taking Lyrica (300mg day) Cymbalta (60mg/d) and Ambien

(20mg/n) to sleep along with supplements for Adrenals, DHEA, vitamin

D, and testosterone. Also doing hydro therapy.

Started in my left hand, diagnosed as carpal tunnel til a nerve

induction test showed no narrowing of the bridge. Soon it was in my

right hand too, then feet, hips and back. Had several rounds of

cortizone pills til the diagnosis... horrible side effects and

eventually little effect/duration of pain management.

Dr says it's the stress/trauma that started it all along with some

other triggers. 'Severly' sensitive in 17 of the 18 points. Though

the nice (young) assistant/RN feels I'll be 100% back to normal...

I'm not so sure, but it's no where near as bad now as it was (could

barely walk for a couple of months).

Side effects I'm dealing with is coated tounge (everything just

doesn't taste right) and some loss of smell. Strange body odor/sweat

and that's about it.

Off to the Dr here in a few hours. Now have TMJ with it (clenching

teeth because of the pain) so have to figure out how to get that

helped. Also to ask about disability.

Have aunt diagnosed with it (and supposedly every other person in her

office as well) who calls it 'normal aches and pains of living' and

that I should 'get over it'. Only sister felt the same way about it

til she saw how bad it could be. Mum diagnosed with rhumetoid

arthritis (caught it early in the process so prevented a lot of

damage to her system) a year before so she totally understands.

Looking forward to other perspectives about how to deal with it.

This actually took me about 50 mins to write and post. Can't stick

at the keyboard long on even medium days before things start feeling

like I'm being stabbed into the keyboard or desk.

*Wave*

Tom

P.S. Can't get away without mentioning I love kilts, and my 2 boys

and wifey. So this was more of the medical intro and not the

craziness I live with.

[Guest guest]

Hello Sharon,

My name is Pam & I am new to the group. As a matter of fact, you are my first

e-mail. I've been a trying to deal with fibro since about 2000. Just in the

last couple years, I've been having numerous different things that I can

pinpoint. To start, I had a terrible bout with a coated tongue and I totally

lost my taste while taking Allopurinol as an anti-inflammatory and I was having

good results, except for the taste thing. I had my normal bloodwork, and my

uric acid level was through the roof. After that my Rheumatalogist, put me on

probenecid to get my uric acid levels down & that the high uric acid could be

causing a good deal of my pain & it seems to be working somewhat. I've also had

a bout with tmj also a few times and I just alternated cold & heat, mostly heat.

You're right, it's an endless thing of try this and try that..Hope this helps

some....

Pam

sharon studley wrote: Hi

Tom Welcome to the group of alot! It is nice to see, but not for you guys that

there have recently been added some more males, as I am newer since Feb., but

belive was the only man on, so now you men will have company not just some

of us on top of the Fibro raging hormonal crisis!.LOL I wanted to say that for

each one of us, and I have been reusserd by my Dr's and Pharmicist, it is trial

and error finding what will work to releave or even completley hold off the

aches, pains, fogs, moods etc. of this disease. What works for one doesn't in

another, I have been on ever concoction of meds they can think of and have had

the bad side effects or just won't work, including vitaman regi. I could not

tolerate at all the steroid meds. But do have a hint of suggestion given me yrs

ago for my TMJ, as I also am a jaw clincher to try and fight pain and even was

doing it in my sleep, and hurt so bad, I

did this for yrs, before they knew this disease was out there, they just

didn't know why I hurt. But know most times when I catch myself doing this I

catch myself and try and stop,what the dentist had me do was roll up a face

cloth and put it between my teeth, now I know you can't do this at work or out

in public, but I did it every other time I could, and also practice lining your

top and bottom teeth together very lightly.Like I said I am about 15 yrs agead

of you so took alot of work to get to where I could work on relax instead of

clench. I did start doing it again when pain increased last fall, but have

stopped most of the time. The molded mouth peice is a waste I bit right through

it. Hoping you lighter days Sharon

oni_no_hentai wrote:

Hello,

I'm 37 and living in Louisville, KY US and was diagnosed late last

year after suffering begining just over a year ago. My rhumetoligist

sent me to another DR that specilizes in Fibro (Healing Options is

the name of the office) and we're still finding a balance.

Still have to have hydrocodone for the spikes in pain during the

day. Also taking Lyrica (300mg day) Cymbalta (60mg/d) and Ambien

(20mg/n) to sleep along with supplements for Adrenals, DHEA, vitamin

D, and testosterone. Also doing hydro therapy.

Started in my left hand, diagnosed as carpal tunnel til a nerve

induction test showed no narrowing of the bridge. Soon it was in my

right hand too, then feet, hips and back. Had several rounds of

cortizone pills til the diagnosis... horrible side effects and

eventually little effect/duration of pain management.

Dr says it's the stress/trauma that started it all along with some

other triggers. 'Severly' sensitive in 17 of the 18 points. Though

the nice (young) assistant/RN feels I'll be 100% back to normal...

I'm not so sure, but it's no where near as bad now as it was (could

barely walk for a couple of months).

Side effects I'm dealing with is coated tounge (everything just

doesn't taste right) and some loss of smell. Strange body odor/sweat

and that's about it.

Off to the Dr here in a few hours. Now have TMJ with it (clenching

teeth because of the pain) so have to figure out how to get that

helped. Also to ask about disability.

Have aunt diagnosed with it (and supposedly every other person in her

office as well) who calls it 'normal aches and pains of living' and

that I should 'get over it'. Only sister felt the same way about it

til she saw how bad it could be. Mum diagnosed with rhumetoid

arthritis (caught it early in the process so prevented a lot of

damage to her system) a year before so she totally understands.

Looking forward to other perspectives about how to deal with it.

This actually took me about 50 mins to write and post. Can't stick

at the keyboard long on even medium days before things start feeling

like I'm being stabbed into the keyboard or desk.

*Wave*

Tom

P.S. Can't get away without mentioning I love kilts, and my 2 boys

and wifey. So this was more of the medical intro and not the

craziness I live with.

[Guest guest]

Hi Pam,

Welcome!! If you have questions, ask away...someone will know the answer..my TMJ

has been really bad the last few days on the right side. It feels like my bones

are going to splinter...weird feeling.

/Mi

Re: Saluations Tom

Hello Sharon,

My name is Pam & I am new to the group. As a matter of fact, you are my first

e-mail. I've been a trying to deal with fibro since about 2000. Just in the last

couple years, I've been having numerous different things that I can pinpoint. To

start, I had a terrible bout with a coated tongue and I totally lost my taste

while taking Allopurinol as an anti-inflammatory and I was having good results,

except for the taste thing. I had my normal bloodwork, and my uric acid level

was through the roof. After that my Rheumatalogist, put me on probenecid to get

my uric acid levels down & that the high uric acid could be causing a good deal

of my pain & it seems to be working somewhat. I've also had a bout with tmj also

a few times and I just alternated cold & heat, mostly heat. You're right, it's

an endless thing of try this and try that..Hope this helps some....

Pam

sharon studley wrote: Hi Tom Welcome to the group of

alot! It is nice to see, but not for you guys that there have recently been

added some more males, as I am newer since Feb., but belive was the only

man on, so now you men will have company not just some of us on top of the Fibro

raging hormonal crisis!.LOL I wanted to say that for each one of us, and I have

been reusserd by my Dr's and Pharmicist, it is trial and error finding what will

work to releave or even completley hold off the aches, pains, fogs, moods etc.

of this disease. What works for one doesn't in another, I have been on ever

concoction of meds they can think of and have had the bad side effects or just

won't work, including vitaman regi. I could not tolerate at all the steroid

meds. But do have a hint of suggestion given me yrs ago for my TMJ, as I also am

a jaw clincher to try and fight pain and even was doing it in my sleep, and hurt

so bad, I

did this for yrs, before they knew this disease was out there, they just

didn't know why I hurt. But know most times when I catch myself doing this I

catch myself and try and stop,what the dentist had me do was roll up a face

cloth and put it between my teeth, now I know you can't do this at work or out

in public, but I did it every other time I could, and also practice lining your

top and bottom teeth together very lightly.Like I said I am about 15 yrs agead

of you so took alot of work to get to where I could work on relax instead of

clench. I did start doing it again when pain increased last fall, but have

stopped most of the time. The molded mouth peice is a waste I bit right through

it. Hoping you lighter days Sharon

oni_no_hentai wrote:

Hello,

I'm 37 and living in Louisville, KY US and was diagnosed late last

year after suffering begining just over a year ago. My rhumetoligist

sent me to another DR that specilizes in Fibro (Healing Options is

the name of the office) and we're still finding a balance.

Still have to have hydrocodone for the spikes in pain during the

day. Also taking Lyrica (300mg day) Cymbalta (60mg/d) and Ambien

(20mg/n) to sleep along with supplements for Adrenals, DHEA, vitamin

D, and testosterone. Also doing hydro therapy.

Started in my left hand, diagnosed as carpal tunnel til a nerve

induction test showed no narrowing of the bridge. Soon it was in my

right hand too, then feet, hips and back. Had several rounds of

cortizone pills til the diagnosis... horrible side effects and

eventually little effect/duration of pain management.

Dr says it's the stress/trauma that started it all along with some

other triggers. 'Severly' sensitive in 17 of the 18 points. Though

the nice (young) assistant/RN feels I'll be 100% back to normal...

I'm not so sure, but it's no where near as bad now as it was (could

barely walk for a couple of months).

Side effects I'm dealing with is coated tounge (everything just

doesn't taste right) and some loss of smell. Strange body odor/sweat

and that's about it.

Off to the Dr here in a few hours. Now have TMJ with it (clenching

teeth because of the pain) so have to figure out how to get that

helped. Also to ask about disability.

Have aunt diagnosed with it (and supposedly every other person in her

office as well) who calls it 'normal aches and pains of living' and

that I should 'get over it'. Only sister felt the same way about it

til she saw how bad it could be. Mum diagnosed with rhumetoid

arthritis (caught it early in the process so prevented a lot of

damage to her system) a year before so she totally understands.

Looking forward to other perspectives about how to deal with it.

This actually took me about 50 mins to write and post. Can't stick

at the keyboard long on even medium days before things start feeling

like I'm being stabbed into the keyboard or desk.

*Wave*

Tom

P.S. Can't get away without mentioning I love kilts, and my 2 boys

and wifey. So this was more of the medical intro and not the

craziness I live with.

[Guest guest]

Thanks everyone for the welcoming messages (yeah... this group moves

fast doesn't it!).

Had a bit of a laugh early that it's a " woman's " disease... how well

I know that unless it has to do with body parts one or the other sex

doesn't have it's not a gender specific thing.

I'm ready for it to be better... I hate to think I'm raising my boys

to fear my 'mood's because of the pain (having been raised fearing my

own fathers moods because of alcohol).

I'm doing the 'at home parent' thing, and have for a couple of years

now. Not doing it as well as I want. With hands and hips hurting

don't get cleaning done like I'd like. Eldest is almost 8 and

youngest is 4. Both have school during the day which saves my

sanity. Wifey is very understanding (thankfully) though I'm sure

she's tired of things being like this too.

Anyway... ramble off.

Have the best day you can everyone!

Tom

<Snip>

Hi Tom Welcome to the group of alot! It is nice to see, but not

for you guys that there have recently been added some more males, as

I am newer since Feb., but belive was the only man on, so now

you men will have company not just some of us on top of the Fibro

raging hormonal crisis!.LOL I wanted to say that for each one of us,

and I have been reusserd by my Dr's and Pharmicist, it is trial and

error finding what will work to releave or even completley hold off

the aches, pains, fogs, moods etc. of this disease. What works for

one doesn't in another, I have been on ever concoction of meds they

can think of and have had the bad side effects or just won't work,

including vitaman regi. I could not tolerate at all the steroid

meds. But do have a hint of suggestion given me yrs ago for my TMJ,

as I also am a jaw clincher to try and fight pain and even was doing

it in my sleep, and hurt so bad, I did this for yrs, before they knew

this disease was out there, they just

didn't know why I hurt. But know most times when I catch myself

doing this I catch myself and try and stop,what the dentist had me do

was roll up a face cloth and put it between my teeth, now I know you

can't do this at work or out in public, but I did it every other time

I could, and also practice lining your top and bottom teeth together

very lightly.Like I said I am about 15 yrs agead of you so took alot

of work to get to where I could work on relax instead of clench. I

did start doing it again when pain increased last fall, but have

stopped most of the time. The molded mouth peice is a waste I bit

right through it. Hoping you lighter days Sharon

<pinS>