Re: Drug, drugs, and drugs

[Guest guest]

I find that I can hardly

> string together a sentence on what I call " F days " . Sound familiar?

> Does it feel as if you've been drugged?

>

YES! And I hate it. I went on a bike trip with a friend in August and

she referred to my fatigue one evening as a " drunken stupor " which I

thought was quite accurate. (I don't drink at all.)

Sierra

[Guest guest]

My step mom told me that there are times to where it sounds like I am

drunk and I do not drink either.........This Fibro does some weird

stuff to you never really thought with having Fibro I would have all

this other stuff that goes with it........There are times to where I

studder when I am talk I get very fustrated with alot now there are

times I feel like I am nuts !!!! There are times I do not realize

what I say till I say it and then I feel stupid for saying something

that I did not mean just cause I get so fustrated........I never use

to be like this till the FIBRO I tell ya it is not the funnest thing

in the world.........Oh and one last thing cause I feel like I am

rambling on and on LOL TRY AND explain this FIBRO stuff to someone

that does not have it HA HA HA

> I find that I can hardly

> > string together a sentence on what I call " F days " . Sound

familiar?

> > Does it feel as if you've been drugged?

> >

> YES! And I hate it. I went on a bike trip with a friend in August

and

> she referred to my fatigue one evening as a " drunken stupor " which I

> thought was quite accurate. (I don't drink at all.)

>

> Sierra

>

[Guest guest]

That describes me! And it is more than just funny. My family is supportive

enough for most things but when it comes to that there is a problem. It is bad

for me but I hate them thinking I'm loosing it. The younger generation always

look at the older people that they are just off so they expect it and then I

have no creditability. Age does diminish what someone can do but I don't think

it is all due to age. I have autoimmune that is yet to be named. I think I will

look at fibro a little clooser. Labs tend to lean toward sclero or lupus.

[ ] Re: Drug, drugs, and drugs

[Guest guest]

I've never taken Prednisolone or any other steriods for RA, so I can't help you

with that question, but I would say if it's affecting your mood that much, maybe

it's not worth it. There are so many drugs out there now, don't feel you have

to stick with something that has terrible side affects. I would encourage you

to talk to your doctor about trying something else.

The fatigue seems to be a constant issue with just about everybody in this

group, regardless of their diagnosis. Some have just RA, others have RA &

Fibro, still others have those & something else, etc. But we ALL complain about

fatigue and " foggy " brains. Of course, if you're tired all the time, (whether

from poor sleep or fighting the pain, or both) it makes sense that your brain is

not going to be working at it's normal capacity.

You might want to check for any sleep disorders. When I went through my own

struggle with doctors trying to find out what was going on with me (I spent four

years complaining of increasing fatigue, weight gain, etc. before they finally

diagnosed me), one thing we discovered is that I have sleep apnea. Now I use

the CPAP machine at night, and although it has not completely cured my fatigue,

it has improved it a great deal. When I rest better, I don't seem to flare up

as much, either. Also, I've started losing the weight I gained.

Just don't give up on finding the right combination that works for you. Keep

nagging your doctor (or if you don't feel he/she is really listening to you -

find another one) until the possibilities have been explored. That may mean

seeing other specialists, such as a pulmonologist (they do the sleep studies) to

find out what else could be making your symptoms worse.

I think the first 6 months after being diagnosed were the toughest for me. It

takes time and patience, but once you get on a therapy that works well for you,

it WILL get better. You also have to give yourself a break. Realize that you

can't be wonder woman anymore.

AND educate those around you. I grabbed up every pamphlet I could get my

hands on, went to the Arthritis Foundation website and printed up info. on RA &

FIbro, etc. THEN I made my family (hubby & 4 kids) READ all of it. We talked

about it and what kind of changes in our lifestyle we would need to make to

accomodate this wretched disease. Then I began to talk to others....friends at

church, extended family, co-workers, etc. They all had questions and I had

answers to help them understand what I was going through. I think it helped a

lot and everyone has been very supportive.

One thing that was really hard for me to do is admit that I couldn't do

everything like I had in the past. I had to start asking for help from others.

It was hard. But what I found is that, in most cases (and assuming you don't

abuse it and use it as an excuse) people were happy to help me any way they

could.

I hope this little " novel " has helped you in some way. God bless you today!

in Texas

debnlen_75 <debnlen@...> wrote:

Hi to All.

I have been recently diagnosed (6mths) with RA and can't believe how

long it takes to get the meds right. I have to take Prednisolone

because the Methotrexate is at 15mg & still not doing the trick. I find

that the Prednisolone makes me an absolute pain to live with. I am

negative and nasty. I am constantly finding myself biting my tongue

because I know that the things that I am imagining are not true.

Does anyone else have this problem?

The other thing is the FATIGUE. I can't believe the level of tiredness.

I also know that not many people at work understand. They think that

it's because you're in pain, or haven't slept. I find that I can hardly

string together a sentence on what I call " F days " . Sound familiar?

Does it feel as if you've been drugged?

[Guest guest]

Hi Deb -

It sometimes does take a long time to get the right

medication or combo of medications to get you to

feeling better. You doctor might be thinking of

adding something to the Mtx, if it alone does not do

the trick, and this could be any of the other DMARDs

or a biologic. How long have you been on the Mtx? It

can take several months to see a change in pain

levels, but if it has been longer than three months

with no relief, I would suggest talking to your doctor

about other meds.

I take Mtx and Enbrel, and this combo works well for

me. I have taken many others, alone and in

combination, and some have worked but have had to be

stopped because of the side effects, and others have

not worked at all. It is a hit and miss kind of

thing, and you just have to be patient. Hard to be, I

know, when you are in pain.

Prednisone does the same thing to me. It works

wonders for the pain, but makes me every serious, very

intense, snappy and just not fun to be around. I hope

that you are able to get off of it soon - it's not

something we generally like to take for a long time,

but some people have no choice as it is the only thing

that gets them through the day.

The fatigue is something that is always a battle for

me. Yes, there are days I just feel totally out of

it. I tell my husband that the fatigue is not just

like being extra tired, and you just need a little

rest and then be fine, it's like being totally bone

weary and having the energy just sucked out of you,

such that all you can do is lay down and sleep. Even

sleep does not help at times when the fatigue is very

bad. Try to pace yourself, and not overdo on your

" good " days. I know I do that, and pay for it the

next day.

Anyway, know that you are not alone, and we are here

to help you in any way we can. Take care -

Kathe in CA

>

>

__________________________________________________

[Guest guest]

Thanks Kathe for you kind words of support. I could not find an

Aussie online group, but we all suffer a similar fate, it's just

nice to talk to someone who understands!

I would love to get off Prednisolone, but meanwhile - I have to

live. I have been on the Mtx for approx 14 wks @ 15mg. When my Dr

comes back from leave (17/10) I am going on to Arava. I will also

come off Sulphasalazine completely, as it made me so nauseated, and

has not helped the disease process at all.

I will look up Embrel - I suppose that different countries have

different propriety names. My next Port-of-call will be Humira after

that...and so it goes!

As far as the negativity goes - I just try to say to myself " That is

the medication talking - don't listen! " sometimes it helps -

sometimes not!

I try to make light of the F-days when I'm at work. At least I have

a good reason now for being dense! This is all such a learning curve.

Hope that you are all having the best day that you can.

Deb

--- In , Kathe Sabetzadeh <lv2ryd@...>

wrote:

>

> Hi Deb -

>

> It sometimes does take a long time to get the right

> medication or combo of medications to get you to

> feeling better. You doctor might be thinking of

> adding something to the Mtx, if it alone does not do

> the trick, and this could be any of the other DMARDs

> or a biologic. How long have you been on the Mtx? It

> can take several months to see a change in pain

> levels, but if it has been longer than three months

> with no relief, I would suggest talking to your doctor

> about other meds.

>

> I take Mtx and Enbrel, and this combo works well for

> me. I have taken many others, alone and in

> combination, and some have worked but have had to be

> stopped because of the side effects, and others have

> not worked at all. It is a hit and miss kind of

> thing, and you just have to be patient. Hard to be, I

> know, when you are in pain.

>

> Prednisone does the same thing to me. It works

> wonders for the pain, but makes me every serious, very

> intense, snappy and just not fun to be around. I hope

> that you are able to get off of it soon - it's not

> something we generally like to take for a long time,

> but some people have no choice as it is the only thing

> that gets them through the day.

>

> The fatigue is something that is always a battle for

> me. Yes, there are days I just feel totally out of

> it. I tell my husband that the fatigue is not just

> like being extra tired, and you just need a little

> rest and then be fine, it's like being totally bone

> weary and having the energy just sucked out of you,

> such that all you can do is lay down and sleep. Even

> sleep does not help at times when the fatigue is very

> bad. Try to pace yourself, and not overdo on your

> " good " days. I know I do that, and pay for it the

> next day.

>

> Anyway, know that you are not alone, and we are here

> to help you in any way we can. Take care -

>

> Kathe in CA

>

> >

> >

>

>

> __________________________________________________

>