Re: New to Group, Have RA + Fibromyalgia

[Guest guest]

In a message dated 24/07/2004 11:15:03 Central Standard Time,

rockscholar@... writes:

> My Rheumy Dr

> started me on Infusion treatments with Remicade. Has anyone else

> gone thru this treatment?

I get Remicade every 8 weeks, and have for I think a year or more. Anything

specific you want to know? Cary

[Guest guest]

Welcome Deb,.....I'm sorry to hear about your dx, but glad your here

with us. I know how frustrating it is, I hope that the meds start

working for you. There are quite a few from the group on the

Remicade. I am on Humira, so I can't help you there. Just wanted to

welcome you, and let you know were all here for you, Tawny

> Hi, My name is Deb. I have been in turmoil for the past 3 years. It

> was August of 2001 that I first had symptoms. Fatigue and a strange

> rash lead me to go to my Primary Dr. The rash was biopsied and came

> back as " Inflammation " . To me this meant nothing! After numerous

> tests and x-rays, the Dr confirmed I had fibromyalgia. I started

> taking Nortriptylene. This past year has been the worst. Instead of

> feeling better, I kept going downhill. I am now on antidepressents.

> I was also diagnoised with high cholesterol, high blood pressure

and

> asthma. All this was going on and I was trying to work a full time

> demanding job. I would fall asleep at my computer during the day. I

> ached so, that by the time I got home at night, all I wanted to do

> was sleep. Finally, my Dr sent me to my Rheumatologist in January.

> He ordered blood tests and my SED Rate came back as 47, normal is 0-

> 20. He put me on prednisone. The following month my SED rate came

> back as 62. He told me then I have Rheumatoid arthritis, which was

> not surprising as my Mother has it, and has had 2 knee

replacements.

> My arthritis is in the hands. My hands are always swollen, hot and

> sore. I am out of work on disability. I have noticed that now that

I

> can get 9-10 hours of sleep, I feel a little better. My Rheumy Dr

> started me on Infusion treatments with Remicade. Has anyone else

> gone thru this treatment? I have had 2 treatments so far. I do not

> notice a difference yet in my joints. I did feel sick a little

after

> the 2nd one. Sorry, that this post is so long. I am leaving out

> quite a bit, just to get to the point. I have not touched on how

> this has effected my husband and kids. More on that later. Right

now

> I need help in understanding why i got RA, how to cope with RA, and

> what happens next? Thanks for listening, hope to hear from someone

> soon. Deb.

[Guest guest]

Hi Deb. I am 33 and also have a mother with RA. I was diagnosed

about a year ago, had symptoms starting about 9 months before that.

I also have a beautiful 4 year old daughter. When all this started,

I started right away making changes in my life. It was obvious I

needed to get out of my marriage and I did that, and it was obvious

I had to change jobs because I could not keep up there.

You are right, getting plenty of rest is very important. Exercise

is another important part of feeling better. My mom has always done

stretching exercises and yoga. I work out in the gym, which helps

with my RA and also hopefully the bone loss I have from taking

prednisone. My mom is disabled and recently I took her to the gym

to see if she could work out on the machines. It was amazing but

she actually can do many of them, and she is feeling so much better

and stronger for it. One thing is that you might not be able to do

certain exercises. For example, I can not walk for any length of

time. The impact to my feet is too much. Sometimes people will try

one type of exercise and it makes them hurt more, so they give up.

It's important to try various types of exercise and see what works

best for you.

It's also important to work with your rheumy and medications to get

the right mix and get the RA under control. That is a tough thing

to do, but it is usually possible. It takes time and patience and a

rheumy that believes it can be done with meds. When my meds have

stopped working or stopped working as well as they used to, I call

my rheumy right away. Sometimes we try something new, sometimes we

wait and see... but if we wait and see it is never for too long. It

might take some time for the Remicade to start working, but keep

talking to your rheumy so that if it becomes apparent that it's not

going to work, you can try something else. Are you on methotrexate

too? People have much greater success when on a combination of

methotrexate and a biological drug. I am on Humira, methotrexate,

prednisone and folic acid. My mom has been on Enbrel but is

switching to Remicade soon so that Medicare will pay for it later

this year. We have to wait and see if it works as well as Enbrel,

but if not she doesn't have many other options because of the cost.

Welcome to the group and I hope you can find what you are looking

for here.

Jennie

> Hi, My name is Deb. I have been in turmoil for the past 3 years.

It

> was August of 2001 that I first had symptoms. Fatigue and a

strange

> rash lead me to go to my Primary Dr. The rash was biopsied and

came

> back as " Inflammation " . To me this meant nothing! After numerous

> tests and x-rays, the Dr confirmed I had fibromyalgia. I started

> taking Nortriptylene. This past year has been the worst. Instead

of

> feeling better, I kept going downhill. I am now on

antidepressents.

> I was also diagnoised with high cholesterol, high blood pressure

and

> asthma. All this was going on and I was trying to work a full time

> demanding job. I would fall asleep at my computer during the day.

I

> ached so, that by the time I got home at night, all I wanted to do

> was sleep. Finally, my Dr sent me to my Rheumatologist in January.

> He ordered blood tests and my SED Rate came back as 47, normal is

0-

> 20. He put me on prednisone. The following month my SED rate came

> back as 62. He told me then I have Rheumatoid arthritis, which was

> not surprising as my Mother has it, and has had 2 knee

replacements.

> My arthritis is in the hands. My hands are always swollen, hot and

> sore. I am out of work on disability. I have noticed that now that

I

> can get 9-10 hours of sleep, I feel a little better. My Rheumy Dr

> started me on Infusion treatments with Remicade. Has anyone else

> gone thru this treatment? I have had 2 treatments so far. I do not

> notice a difference yet in my joints. I did feel sick a little

after

> the 2nd one. Sorry, that this post is so long. I am leaving out

> quite a bit, just to get to the point. I have not touched on how

> this has effected my husband and kids. More on that later. Right

now

> I need help in understanding why i got RA, how to cope with RA,

and

> what happens next? Thanks for listening, hope to hear from someone

> soon. Deb.

[Guest guest]

Hi Deb,

Your story sounds like the story of so many on this list.

I am 49, and had a father with RA. I am also being treated for depression,

hypertension, and now RA,

I've had trouble with my knees and ankles for several years, which I always

blamed on my weight, and with carpal tunnel. About a year and a half ago, my

wrists and hands swelled up on me.

I am currently on Naprosyn and now methotrexate for about 2 months Still not

sure if the mtx is working or not, had one flare up about a week ago on the day

I got my methotrexate shot, but I had fogotten my naprosyn that day, so I think

it was that.

I work as a lab tech, and had to cut back my hours in order to function. 5 days

in a row on my feet were too much for my ankles, and I needed more sleep. I now

work 8-5 m, w and thursday, and 4-8 Tues and Friday. Less time on my feet, and

now I can sleep late 4 days a week instead of 2.

This is a great place. Everyone here understands, people rarely get upset with

each other, and and a find the best information for any question you

may have.

RA is scary, but the monster has a name now, and once you know it's name, it's

easier to face. And here, you are not alone.

Noreen

[Guest guest]

I always wanted to sleep too before the pain really started. I always thought

something was really wrong besides being tired. I was actually relieved to

finally get a diagnosis. Provigil helps with the fatigue.

Becky

[ ] New to Group, Have RA + Fibromyalgia

Hi, My name is Deb. I have been in turmoil for the past 3 years. It

was August of 2001 that I first had symptoms. Fatigue and a strange

rash lead me to go to my Primary Dr. The rash was biopsied and came

back as " Inflammation " . To me this meant nothing! After numerous

tests and x-rays, the Dr confirmed I had fibromyalgia. I started

taking Nortriptylene. This past year has been the worst. Instead of

feeling better, I kept going downhill. I am now on antidepressents.

I was also diagnoised with high cholesterol, high blood pressure and

asthma. All this was going on and I was trying to work a full time

demanding job. I would fall asleep at my computer during the day. I

ached so, that by the time I got home at night, all I wanted to do

was sleep. Finally, my Dr sent me to my Rheumatologist in January.

He ordered blood tests and my SED Rate came back as 47, normal is 0-

20. He put me on prednisone. The following month my SED rate came

back as 62. He told me then I have Rheumatoid arthritis, which was

not surprising as my Mother has it, and has had 2 knee replacements.

My arthritis is in the hands. My hands are always swollen, hot and

sore. I am out of work on disability. I have noticed that now that I

can get 9-10 hours of sleep, I feel a little better. My Rheumy Dr

started me on Infusion treatments with Remicade. Has anyone else

gone thru this treatment? I have had 2 treatments so far. I do not

notice a difference yet in my joints. I did feel sick a little after

the 2nd one. Sorry, that this post is so long. I am leaving out

quite a bit, just to get to the point. I have not touched on how

this has effected my husband and kids. More on that later. Right now

I need help in understanding why i got RA, how to cope with RA, and

what happens next? Thanks for listening, hope to hear from someone

soon. Deb.

[Guest guest]

I am out of work on disability.

I have not touched on how

> this has effected my husband and kids. More on that later.

I know nothing about taking disability leave from work. Could you

tell me what's required? Are there different kinds of leaves

(partial?) I may need to know someday.

My husband is having a very hard time accepting my limitations. (I've

just had an RA diagnosis for 6 months.) I often feel pressured to do

active things that seem fraught with difficulties. Yesterday he made

an appointment with a counselor; I'm so very glad.

S

[Guest guest]

Snowdrift... taking disability leave from work would depend on your

company's disability policy. It should be spelled out in your

employee handbook if you have one of those. Most company's offer

short term disability with just a doctors note and will pay a

portion of your income for up to 6 months depending on how long you

have worked there. Some company's also offer long-term disability

if you pay extra for it. It all depends.

Social Security disability is a much harder thing to get, and it

involves lots of paperwork, time and energy.

It's hard for anyone who does not understand RA to really understand

the limitations, including many who have the disease. Ask or have

him ask the counselor if he/she has experience with patients or

family members that have chronic illness and specifically illness

that is not always evident on the outside. Not all counselors are

equal and if he doesn't see a good one it might not help as much as

you hope. Are you going with him?

Jennie

> I am out of work on disability.

>

> I have not touched on how

> > this has effected my husband and kids. More on that later.

>

> I know nothing about taking disability leave from work. Could you

> tell me what's required? Are there different kinds of leaves

> (partial?) I may need to know someday.

>

> My husband is having a very hard time accepting my limitations.

(I've

> just had an RA diagnosis for 6 months.) I often feel pressured to

do

> active things that seem fraught with difficulties. Yesterday he

made

> an appointment with a counselor; I'm so very glad.

>

> S

[Guest guest]

Ask or have

> him ask the counselor if he/she has experience with patients or

> family members that have chronic illness and specifically illness

> that is not always evident on the outside. Not all counselors are

> equal and if he doesn't see a good one it might not help as much as

> you hope. Are you going with him?

He was given referrals to three male counselors--I told him that if

he did not feel comfortable with one, he could move on to another.

He's had a little experience with counseling, and would be able to

assess a helpful counselor from one who may lack the proper

background. No, I will not be going with him, at least not initially.

(I see someone already.) I think he needs an outlet to pour out his

fears, frustrtions, etc, and my presence might inhibit that. I think

he's somewhat depressed.

S.

[Guest guest]

I go to counseling too, more because of my divorce and to help

handle custody issues maturely. But after I started going my

therapist mentioned he has a lot of experience with patients dealing

with chronic illness and that has been so helpful.

It is good he recognizes he needs someone to talk to. I wish my ex

would realize that too... not to understand RA, but to help him

realize he needs to grow up.

Jennie

> --- In , " xponder70 " <xponder70@y...>

wrote:

> Ask or have

> > him ask the counselor if he/she has experience with patients or

> > family members that have chronic illness and specifically

illness

> > that is not always evident on the outside. Not all counselors

are

> > equal and if he doesn't see a good one it might not help as much

as

> > you hope. Are you going with him?

>

> He was given referrals to three male counselors--I told him that

if

> he did not feel comfortable with one, he could move on to another.

> He's had a little experience with counseling, and would be able to

> assess a helpful counselor from one who may lack the proper

> background. No, I will not be going with him, at least not

initially.

> (I see someone already.) I think he needs an outlet to pour out

his

> fears, frustrtions, etc, and my presence might inhibit that. I

think

> he's somewhat depressed.

>

> S.

[Guest guest]

HI Deb, I have great empathy for you and wish you the best. Like

you I have RA and FMS plus a bunch of other initials that don't make

me feel good.

I too take Remicade and although it doesn't reduce the swelling and

achiness it does stop the progression of the degeneration of my

joints.

My hands ankles and feet are swollen most of the time and they

ache. I could get rid of some of the achiness if I would just sit

still in my chair and not do anything at all but that isn't me.

I quilt and garden and do my housework. It may not get done as fast

as I use to do it but I do do it. My hands swell and ache and I rub

them with hand lotion. They hurt and I take a pain pill. I do keep

going though. I am not going to let this thing get me.

The Remicade made me very sleepy when I first started taking it and

I think a little sick. I have been on it for 2 1/2 years now. My

xrays have shown no damage to my joints since I have started it. I

would be afraid to go off of it for just that reason.

I also take methotrexate and it does help with the achiness and

swelling. My biggest problem right now seems to be the weather -

when a high pressure system comes through it just swells my body

up. My hands hurt so much now that I am just lightly touching the

keys to type and trying hard not to bend them. They won't bend much

today anyway.

I wish I could give you something positive - or say this will go

away but it won't - it is here to stay - and just gets worse - at

least for me these past 8 years have been like climbing a mountain

and never seeing the top but you have to put on a smile and plow

through it.

I am hoping with all the break throughs that they will find a drug

that will not only protect our cells from further damage but that

they will find one that will stop the RA in its tracks.

Again welcome to the group and ask all the questions you can think

of - someone here will be able to answer them.

God bless,

Althea

[Guest guest]

The counselor I see told me she has Sjogren's. I really appreciated

the fact that she shared that.

S.

> > Ask or have

> > > him ask the counselor if he/she has experience with patients or

> > > family members that have chronic illness and specifically

> illness

> > > that is not always evident on the outside. Not all counselors

> are

> > > equal and if he doesn't see a good one it might not help as

much

> as

> > > you hope. Are you going with him?

> >

> > He was given referrals to three male counselors--I told him that

> if

> > he did not feel comfortable with one, he could move on to another.

> > He's had a little experience with counseling, and would be able

to

> > assess a helpful counselor from one who may lack the proper

> > background. No, I will not be going with him, at least not

> initially.

> > (I see someone already.) I think he needs an outlet to pour out

> his

> > fears, frustrtions, etc, and my presence might inhibit that. I

> think

> > he's somewhat depressed.

> >

> > S.

[Guest guest]

I believe that short-term disability begins when you have been out for 7 days

and will continue

for 26 weeks (I am not 100% sure.) It does not pay your complete salary. It will

pay around 60%.

This is insurance through your job and usually you have to pay additional for

it. Long-term

disability will take over after your short-term disability. If you go back to

work within the

short-term period and go out again, you will begin at week 1. Check with your

H.R. Dept. and they

should be able to give you the forms and requirements. Be careful not to let

anyone know of your

diagnosis until you are ready (having your dr ready to sign you out of work). I

was fired once my

diagnosis was known and then was not able to file for short-term disability. If

this happens to

you, there are government departments that can make your company give you back

your job but who

wants to work somewhere where you are treated badly and all of your reviews are

affected. They

should have been forced to hire me back and them I would have been able to file

for disability.

Workmans Comp also has disability but you have to be injured on the job. Social

Security

Disability is a process that can take up to 3 years. Many people give up before

they get it. If

you have to go back to work, you can file for disability for the amount of time

you were out.

Sometimes it is hard to get it with a FM diagnosis but if you are considered

clinically depressed,

you may have an additional way to file to receive SSI. Full disability will pay

around $1000-$1100

per month. After two years (from the time you filed) you are eligible to receive

Medicare. Look

for a Social Security lawyer and ask them to send you some information. It is a

hard decision to

make and I wish you well. Iris

--- snowdrift52003 <snowdrift52003@...> wrote:

>

> I am out of work on disability.

>

> I have not touched on how

> > this has effected my husband and kids. More on that later.

>

> I know nothing about taking disability leave from work. Could you

> tell me what's required? Are there different kinds of leaves

> (partial?) I may need to know someday.

>

> My husband is having a very hard time accepting my limitations. (I've

> just had an RA diagnosis for 6 months.) I often feel pressured to do

> active things that seem fraught with difficulties. Yesterday he made

> an appointment with a counselor; I'm so very glad.

>

> S

>

>

>

>

>