Re: Hands and FMS

[Guest guest]

I asked the Doctor about sending me... he said there was no need, I had

FMS.

Funny you mention RA. My test for this came back Negative 2 months ago.

But they do say I have Osteo Arthritis in both knees. They are is bad

shape, they said they are in need of replacement, but I am too

" young " . Now I don't mind being told I am " too young " ... but to me,

too young is being in a bar and ordering a drink, and only 20 years old!

Tonight I am in agony. The temp has dropped to 20. Expecting snow??? Ha!

in lower Georgia! Yea, right! But this " Osteo Arthritis " in both my

knees has all of the sudden swelled them up twice their size, the pain

is unbearable. I mean, Holding Your Breath type of pain. My ankels are

swelled, and it hurts clean into the bone. .

I have often wondered if you can be in beginnings of RA, and diaganosed

as OA. And the RA not show on test.

Is that possible?

Ouch... Let me go and lay in a hot tub. Maybe that will help.

And me with no meds to take! I knew I shouldn't have thrown them out

when I was so mad the other day!

Susie

Patsy3 wrote:

> Hi ,

>

> Have you seen a neurologist? I had a lot of jerking of limbs just

> before

> going into full blown RA, but not continuous! I sometimes attend a

> support

> group here in Pasadena, CA for fibro and even though it is not unusual

> to

> have 100 people attend, I have never heard your symptoms described by

> anyone.

>

> Good luck to you.

>

> Patsy

>

> -----Original Message-----

> From: Headley [mailto:sheadley@...]

> Sent: Saturday, December 30, 2000 9:15 AM

> egroups

> Subject: [ ] Hands and FMS

>

>

> I looked at the Art Work Mac... beautiful.

> And so many varied techniques. Do you sell them? You should, if you

> don't!

> About my hands. I do clay, also paint and do pen and ink. Folk Art.

> Wild

> Crafting with natural things. Carve Wooden walking canes and sticks,

> and

> Spirit Sticks.

> I do (did do) a lot of intricate detail work. Especially when drawing.

>

> Also somewhat intricate detail when carving.

> The Doctors say I have FMS. I question my ability to use my hands,

> and

> some problems with my leg, however.

> It seems that my hands (left hand mostly) has a mind of their own now!

>

> >From my elbow down, it slightly trembles/jerks constantly. The right

>

> arm is really not so noticeable. But it does do this to some extent.

> If I try to hold my arm or hand out, from the elbow down to the tips

> of

> my fingers tremble/jerk uncontrollably. Nothing stops it. My right leg

>

> does the same. Mainly from below my knee to my toes. It is hard to

> press

> on the gas petal in car, as my foot trembles rapidly and

> uncontrollably.

> At times I have had to cross my left leg over, and use it for the

> gas...

> hard to get to the brakes from there! I don't drive often now. So

> strange feeling when you can not say " Stop it! "

> Threading a needle... even a large head embroidery needle, is

> impossible.

> I can not even lift a pan off of stove, unless I anchor my elbow close

>

> to my body, and take my other hand and arm and support my other arm.

> It

> really shakes bad then. Water usually ends up on the floor.

> It is slowly getting worse. And now my left eye is getting in on the

> act!

> The doctor does not seem to be concerned. He said it is normal to have

>

> " muscle twitches " with FMS. But you know, I have told him, I do have

> " muscle twitches " ... and this is NOT them. I just have a bad feeling

> something is going on, and it is being overlooked, because of the FMS

> diagnosis. You know... " She has FMS, period "

> Kinda like that makes us immune to getting any OTHER illness!

> As for my painting and drawing... that has all but stopped for me. And

> I

> miss it so.

> The sculpting is not suffering as much, I am still able to do this.

> The carvings on my Walking Sticks, are getting less detailed. Bummer.

> I

> love carving details.

> It is the details that give something that was ordinary, a little bit

> of

> uniqueness and character.

> I hurt so bad. Nothing they have given for pain has helped. I have now

>

> stopped all meds. I am so frustrated.

> I don't even want to get up most days now... Oops, sorry! That was a

> stupid thing to say! I don't sleep! So, how could I get up if I never

> went down?~!.

> Does anyone else with FMS have the uncontrollable jerks I described?

> Susie ~~~freezing in GA

>

>

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

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>

>

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[Guest guest]

Hi ,

Have you seen a neurologist? I had a lot of jerking of limbs just before

going into full blown RA, but not continuous! I sometimes attend a support

group here in Pasadena, CA for fibro and even though it is not unusual to

have 100 people attend, I have never heard your symptoms described by

anyone.

Good luck to you.

Patsy

-----Original Message-----

From: Headley [mailto:sheadley@...]

Sent: Saturday, December 30, 2000 9:15 AM

egroups

Subject: [ ] Hands and FMS

I looked at the Art Work Mac... beautiful.

And so many varied techniques. Do you sell them? You should, if you

don't!

About my hands. I do clay, also paint and do pen and ink. Folk Art. Wild

Crafting with natural things. Carve Wooden walking canes and sticks, and

Spirit Sticks.

I do (did do) a lot of intricate detail work. Especially when drawing.

Also somewhat intricate detail when carving.

The Doctors say I have FMS. I question my ability to use my hands, and

some problems with my leg, however.

It seems that my hands (left hand mostly) has a mind of their own now!

>From my elbow down, it slightly trembles/jerks constantly. The right

arm is really not so noticeable. But it does do this to some extent.

If I try to hold my arm or hand out, from the elbow down to the tips of

my fingers tremble/jerk uncontrollably. Nothing stops it. My right leg

does the same. Mainly from below my knee to my toes. It is hard to press

on the gas petal in car, as my foot trembles rapidly and uncontrollably.

At times I have had to cross my left leg over, and use it for the gas...

hard to get to the brakes from there! I don't drive often now. So

strange feeling when you can not say " Stop it! "

Threading a needle... even a large head embroidery needle, is

impossible.

I can not even lift a pan off of stove, unless I anchor my elbow close

to my body, and take my other hand and arm and support my other arm. It

really shakes bad then. Water usually ends up on the floor.

It is slowly getting worse. And now my left eye is getting in on the

act!

The doctor does not seem to be concerned. He said it is normal to have

" muscle twitches " with FMS. But you know, I have told him, I do have

" muscle twitches " ... and this is NOT them. I just have a bad feeling

something is going on, and it is being overlooked, because of the FMS

diagnosis. You know... " She has FMS, period "

Kinda like that makes us immune to getting any OTHER illness!

As for my painting and drawing... that has all but stopped for me. And I

miss it so.

The sculpting is not suffering as much, I am still able to do this.

The carvings on my Walking Sticks, are getting less detailed. Bummer. I

love carving details.

It is the details that give something that was ordinary, a little bit of

uniqueness and character.

I hurt so bad. Nothing they have given for pain has helped. I have now

stopped all meds. I am so frustrated.

I don't even want to get up most days now... Oops, sorry! That was a

stupid thing to say! I don't sleep! So, how could I get up if I never

went down?~!.

Does anyone else with FMS have the uncontrollable jerks I described?

Susie ~~~freezing in GA

Our websites: http://rheumatoid.arthritis.freehosting.net/

http://www.rasupport.webprovider.com/

Change subscription options:

[Guest guest]

Susie,

I just had my second total knee replacement. I fought with my ortho for over

7 years because I was " too " young. Well I finally reached the ripe old age

of 45 and on my 45th birthday,I had the first tkr. When the new ortho got

in there, he was appalled that this problem had been allowed to continue for

so long with the poor quality of life I was expereiencing. and ps, these

orthos were partners at the time! needless to say my ortho has left the

practice to join cleveland clinic where he is allowed to treat the patient

for his problems and not for the bottom financial line. My ortho's

philosphy and other orthos here in the Chicago area is that if your pain and

quality of life is so compromised, that regardless of your age, you are a

candidate for tkr. My ortho has even replaced a 20 year olds knees,it had to

be done and no one would help this guy out. My doctor trained at s

Hopkins where they are quite progressive and aggressive.

Don't give up. There is a doctor out there who will treat you the way you

should be. I can't tell you how many tears I would shed at the original

ortho's office that he just didn't understand the pain I was in the poor

quality of life I had, I have 3 young active daughters, and he would just

continue to tell me " too young " , I had approximately 10 arthroscopies just

to " pretty up " the cartilage and all the pretty cartilage in the world was

not going to address my true problem.

I currently have a few minor post op complications but I would do this

surgery again in a heartbeat to have 90% of my quality back. In fact, right

now we are in Chicago for the holidays visiting with my sister and her

family. We live in sunny, WARM south Florida, it is snowy, cold and icy

here, but atleast i was able to make the trip and be with friends and

family at this specail time of year.

Hang in there, gentle, warm,angel hugs,

Debs in FL

[Guest guest]

HI I had a total knee replacement a lil over 2 yrs ago..I was 46...when I

first injured my knee I was 44...had an arthroscopy done and I was bone on

bone...they cleaned it out and measured me for a leg brace which I wore every

day for almost 2 yrs....the ortho had hope I'd last longer ....in the end he

gave me a shot of steroids into knee in Sept98 and replaced it Nov

98...because I was so young I recuperated in record time...he used less bone

glue so I would grow into the replacement better ...I have had no problems

...occassional pain from nerves near it during flares.....but the over all

knee has been such a wonderful thing compared to the brace....and yes I was

starting to walk funny before the tkr ...my RD said he hoped that would help

my back and it did....if I get really tired and been up too long it bothers

me.....other than that ...but I know several people who have also been told

too young to get one. I would however be scared to be in precarious places

(such as snow and ice)...that is my biggest fear.....falling on it.....but

just be careful. Good luck ..Judy in az

[Guest guest]

Susie,

Did you ever make it here to ville to see an RD? I checked into those

two names you sent to me but I couldn't find anyone who knew anything about

them. If you want I will send you my RD's info by private e-mail. I've been

seeing him for 5 years now. He is the greatest. He really sits down and

listens to what you have to say then he does his exam. I'm sorry your still

having such pain.

I agree with a, I have RA and secondary OA in my knees and when my OA is

acting up my knees aren't swollen, just very painful. There is a difference

in the pain and after a while you can tell which is which.

I don't remember, did you ever find a doc that would give you some pain

pills? Sorry not to remember so much but I've been having a very hard time

myself. I'm sure this next year will bring relief to all of us. Tery - FL

[Guest guest]

Susie.

I have never heard of the neurological symptoms that you describe caused by

FM. You may want to see a neurologist.

20-25% of the people with RA test negative. A negative test doesn't mean

you don't have RA. RA is diagnosed by not only lab tests, but other

symptoms. The swelling you are describing sounds more like RA than OA.

You should let your doctor see your joints while they are in this condition.

I was surprised that your doctor started you on such a high dose of

neurontin. My husband recently started on it and they gave him 100mg. He

is to increase it after a month on 100 to 200mg. The doctor said the this

was the best way to prevent any side effects.

a

----- Original Message -----

From: Elf <sheadley@...>

< egroups>

Sent: Saturday, December 30, 2000 9:19 PM

Subject: Re: [ ] Hands and FMS

> I asked the Doctor about sending me... he said there was no need, I had

> FMS.

> Funny you mention RA. My test for this came back Negative 2 months ago.

>

> But they do say I have Osteo Arthritis in both knees. They are is bad

> shape, they said they are in need of replacement, but I am too

> " young " . Now I don't mind being told I am " too young " ... but to me,

> too young is being in a bar and ordering a drink, and only 20 years old!

>

> Tonight I am in agony. The temp has dropped to 20. Expecting snow??? Ha!

> in lower Georgia! Yea, right! But this " Osteo Arthritis " in both my

> knees has all of the sudden swelled them up twice their size, the pain

> is unbearable. I mean, Holding Your Breath type of pain. My ankels are

> swelled, and it hurts clean into the bone. .

> I have often wondered if you can be in beginnings of RA, and diaganosed

> as OA. And the RA not show on test.

> Is that possible?

> Ouch... Let me go and lay in a hot tub. Maybe that will help.

> And me with no meds to take! I knew I shouldn't have thrown them out

> when I was so mad the other day!

> Susie

[Guest guest]

Hi Tery

No I did not go to Jax. I did find a Dr. here in Brunswick. A Dr.

Bournigall (I think it is spelled wrong!) Excuse this email if it gets

confusing... I can't think straight right now I hurt so bad, and am so

angry at me:

This Doctor saw me ONCE. Gave me meds, and I went back after 1 month.

The REMERON was impossible for me to take, and he did give it in

combination with the EFFEXOR. I don't know why the 2 together. I took

the REMERON a week before starting EFFEXOR. The headache was like a

stroke, with REMERON, so I dropped it.

The Dr. did note that the EFFEXOR seemed to be making my Blood Pressure

high. So I was told to watch it. (duhhhh)

He then made me an appointment for 3 months later!!!!

I was is awful pain still. He said EFFEXOR would help that. So I finally

broke down and called them back and made another appointment (before 3

months!). I went in. The Dr. did not see me this time! Here I was

having trouble starting on ANY meds, and he has me seing a PAC (what is

this anyway?)

He was named (last name) . I saw him. I did not know what to call

him. PAC is at the end of his name. And he can not write prescriptions,

he has to go to the Dr. to get them written, then brings them back to

me.

He gave me the 300 NEURONTIN for pain. He said take one 3 times day.

then in a few days, take 2, 300 mg. capsules, 3 or 4 times a day.

I won't even go into the side effects on that crap. But I will say, I do

not, nor never have drank... but I do know, that if anyone wants a good

" high " ... take this stuff. (kidding)

So, HE made me an appointment for 3 months later...

I called back crying in pain (on the floor) a week later... the nurse

told me, to keep trying NEURONTIN, and to try to wait for my next

appointment. I was appauled.(I had broke out in hives with it also.)

So... I said, " Well, then if I have to live in THIS pain, I don't think

I will be around then... maybe not even tomorrow! "

.... she let me come in first thing the next morning.

So, " whoever " , PAC walked in again... told me that he would

switch to something better for the pain... he gave me the TOPAMAX (sp?)

and commented again on how high my BP was. He gave me a little chart,

and said to chart my BP every day, until my next THREE MONTH

APPOINTMENT.

(@#$$))))!!!!!!!)

So, each day, I checked BP. It stayed 168 + over God knows what, up

until last week... when *I DECIDED* to take ME OFF the EFFEXOR. (which

did not help " energy lever " nor " pain " at all after taking awhile)

So... now I am Med-less, and hurt worse than before I was diagnosed. And

it is 2 months until my next appointment!!!!!! But amazingly, my BP is

now down to around 120 over 88 (which is very good as far as I am

concerned!) I know now, how much my body was in " distress " while taking

the EFFEXOR... it just eased up slowly, and I did not notice, until it

was out of control, and stayed high for so long. I wonder if the high BP

for that long caused any damage?

I am fed up with it all...

I so admire those of you who handle the Arthritis and FMS with so much

grace and good attitude. I envy you for your strength. I guess I am a

sissy.

I can see why we occasionally get those moments when we really do NOT

want to wake up one more day to this junk.

I do Genealogy. I just found a cousin I never knew. We have common Great

Grandparents. She has FMS, and arthritis. Her sister has it. And she

informed me that several of our Aunts and cousins had had it. (2 had

commited suicide reciently)

I also found out that my first cousin has it that I grew up knowing.

So isn't this comforting to know. Ha! Now I worry about my daughters.

There has got to be a genetic link to the FMS. It just has to.

I guess by now, you can all tell I am on a " ME, ME, ME, PITY POT " , can't

you?

So Tery, if you have a good Doctor, please let me know the information.

I will consider going to him.

Thank you for remembering me. If I end up at your Doctors office, maybe

you and I can schedule appointments on same day and have lunch. I would

love to meet you.

I know it is hard for me to remember anything. That is the pitts also. I

guess these sicknesses rob us of everything precious.

Susie

tpeppergirl@... wrote:

> Susie,

> Did you ever make it here to ville to see an RD? I checked

> into those

> two names you sent to me but I couldn't find anyone who knew anything

> about

> them. If you want I will send you my RD's info by private e-mail.

> I've been

> seeing him for 5 years now. He is the greatest. He really sits down

> and

> listens to what you have to say then he does his exam. I'm sorry your

> still

> having such pain.

>

> I agree with a, I have RA and secondary OA in my knees and when my

> OA is

> acting up my knees aren't swollen, just very painful. There is a

> difference

> in the pain and after a while you can tell which is which.

>

> I don't remember, did you ever find a doc that would give you some

> pain

> pills? Sorry not to remember so much but I've been having a very hard

> time

> myself. I'm sure this next year will bring relief to all of us. Tery

> - FL

>

> eGroups Sponsor

[Click Here!]

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

[Guest guest]

Debs,

I had both my knees replaced at age 43. My doctor's criteria was to wait

until I couldn't stand the pain. The reason some want to wait is because

the average age of a joint replacement is 10-15 years. This means that I

will have to get mine replaced again when I am in my 60's. That's fine with

me! My quality of life is so much better now and it is a crock of bull to

make someone wait because of age. One girl on our list had hers replaced

at age 13.

I'm glad you have a good ortho now that understands the quality of life

issue.

a

----- Original Message -----

From: <Auntblabbie2000@...>

< egroups>

Sent: Sunday, December 31, 2000 11:28 AM

Subject: Re: [ ] Hands and FMS

> Susie,

>

> I just had my second total knee replacement. I fought with my ortho for

over

> 7 years because I was " too " young. Well I finally reached the ripe old

age

> of 45 and on my 45th birthday,I had the first tkr. When the new ortho got

> in there, he was appalled that this problem had been allowed to continue

for

> so long with the poor quality of life I was expereiencing. and ps, these

> orthos were partners at the time! needless to say my ortho has left the

> practice to join cleveland clinic where he is allowed to treat the patient

> for his problems and not for the bottom financial line. My ortho's

> philosphy and other orthos here in the Chicago area is that if your pain

and

> quality of life is so compromised, that regardless of your age, you are a

> candidate for tkr. My ortho has even replaced a 20 year olds knees,it had

to

> be done and no one would help this guy out. My doctor trained at s

> Hopkins where they are quite progressive and aggressive.

>

> Don't give up. There is a doctor out there who will treat you the way

you

> should be. I can't tell you how many tears I would shed at the original

> ortho's office that he just didn't understand the pain I was in the poor

> quality of life I had, I have 3 young active daughters, and he would just

> continue to tell me " too young " , I had approximately 10 arthroscopies

just

> to " pretty up " the cartilage and all the pretty cartilage in the world was

> not going to address my true problem.

>

> I currently have a few minor post op complications but I would do this

> surgery again in a heartbeat to have 90% of my quality back. In fact,

right

> now we are in Chicago for the holidays visiting with my sister and her

> family. We live in sunny, WARM south Florida, it is snowy, cold and

icy

> here, but atleast i was able to make the trip and be with friends and

> family at this specail time of year.

>

> Hang in there, gentle, warm,angel hugs,

>

> Debs in FL

>

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

>

[Guest guest]

Judy,

Thanks for the information and support. My first ortho made me feel like a

freak. From early on in our relationship, I told him that I was not your

sports injury kind of patient, that I was a chronic PITA. He said no

problem, we had tons of patients like me, yikes!!!!!! I hope they made the

switch like I did.

When the knees are working good, they are GREAT....Sometimes I was feeling

like maybe I had made the wrong decision. Glad to know that the occasional

pain that I feel is just overuse or flare. Docs are great at the technical

aspects but don't always tell you the everyday real people stuff.

A happy healthy new year to you and yours.

Debs in FL