Fatigue

[Guest guest]

In a message dated 22/04/01 06:21:24 GMT Daylight Time, Toadessa7@... writes:

But, job, children and life just push me on. I have never tried a chat room.

Hi,

Chat rooms are very interesting. BUT only if you pick the right ones!!

Some of them have about 20 or 30 people (or more!!), all trying to chat at the same time!! I find if you can get into one with a small number of people, then you are more likely to have a say !

I have never done one with our PA members though !! ??

Mike (from the UK)

[Guest guest]

In a message dated 4/20/01 10:38:43 PM US Eastern Standard Time,

catwoman10uk@... writes:

<< an i come here and moan as much as i like without u guys

complaining?

i hope someone takes pity on me and replies to this, hope to speak to

someone soon, i actually prefer to chat in the rooms cos i hate

writing emails i wonder how many feel the same.

>>

Moan away, because there is always that delete button. I keep looking for it

offline, but never can seem to find when I need it!! )

I prefer chat too, but cannot seem to find out how to do it?? Any tips on

finding PA chat and how to get there would be appreciated.

Thanks,

[Guest guest]

In a message dated 4/20/01 11:46:25 PM US Eastern Standard Time,

rkba@... writes:

<< wish my doctors would sort it out - I think they think I'm just a

whiner :-(

Do you have any advice as to what to tell them to get them to take my

fatigue seriously? >>

Ron - I didn't get my doc. to believe anything at all was wrong before being

diagnosed with PA. One doc. actually said it was PMS!! (yeah, right, I can't

hardly walk - how on earth is that PMS!?!?) - until I finally had to break

down in my doctor's waiting room and tell them if they didn't do SOMETHING I

was going to be in a wheelchair within a month. Although it was embarassing,

sometimes I think it takes something a bit shocking to get it thru their

thick skulls that we are serious about how much this is effecting our lives.

Maybe you could try telling your doc. in no uncertain terms that you CANNOT

CONTINUE TO FUNCTION with this degree of fatigue. Say it and mean it. Tell

him/her to send you to someone else if they are not going to take your

complaints seriously. Maybe they'll listen.

[Guest guest]

i do as well Catwoman - maybe ill see in the chat 1 day. No time just now - Mind u I'm new to this so I hope ill be able to find it okay.

Nige

[Guest guest]

You can moan as much as you need to! But we won't take pity

on you .... just commiserate with you.

My mornings seem to be the worst but on bad days it is the afternoon

that makes me feel like all I want to do is sleep forever, if I could.

No good answers for you, though.

Judy

karin wrote:

ok guys, i know i'm new but there is so much

to go thu to find the

right info,do u all feel as tired as i do come the afternoon, i

just

feel like pure crap, and try to sleep and can't even do that cos

of

the pain, i take a mixture of co-codomol, tylex and something called

acupan as painkillers. i am also on celebrix, methetrixate and

folic

acid i feel like a chemist i take it this is quite common, i also

had

2 cortosone injections in my shoulders yesterday so i feel worse

than

i did before i got them. lol sorry i am moaning i have never been

able to moan so much since my first hubby left me....hahahah. sorry

j/k but can i come here and moan as much as i like without u guys

complaining?

i hope someone takes pity on me and replies to this, hope to speak

to

someone soon, i actually prefer to chat in the rooms cos i hate

writing emails i wonder how many feel the same.

--

Judy O'Dell

Independent Candle Consultant

CandlelightDreams@...

Free product and a wonderful opportunity await you.

Ask me how!!!!!

"Thousands of candles can be lighted from a

single candle, and the life of the candle will

not be shortened. Happiness never decreases

by being shared." - Buddha

[Guest guest]

Just go to www.arthritisinsight.com and the n go to the chat room

everybody on there a some form of arthritis or another.

We meet at 9.00pm on monday nights Australian time and I have made some lovely

friends who understand and give support when needed.

Try it!

Not all chat rooms are sleazy

sheryn

Australia

TADEL630@... wrote:

> In a message dated 4/20/01 10:38:43 PM US Eastern Standard Time,

> catwoman10uk@... writes:

>

> << an i come here and moan as much as i like without u guys

> complaining?

> i hope someone takes pity on me and replies to this, hope to speak to

> someone soon, i actually prefer to chat in the rooms cos i hate

> writing emails i wonder how many feel the same.

> >>

> Moan away, because there is always that delete button. I keep looking for it

> offline, but never can seem to find when I need it!! )

> I prefer chat too, but cannot seem to find out how to do it?? Any tips on

> finding PA chat and how to get there would be appreciated.

> Thanks,

>

>

>

>

[Guest guest]

Hi Sheryn

Hi how are you we are trying to get over the flue and yes it has taken it

toll on the arthritis and my heart once again. I am so tired but I guess it

will all go away one day I flared in my toes this time and in my head. It

was not nice.

I hope one day I will feel confident to come to a chat.

Keep in touch

God Bless

Beverley in Qld

[Guest guest]

I've found that Parents on AOL is very good and I have actually made some really good friends in there.

I'll look out for u - if u look out for me - My other screen name is "ZipDipNip"

[Guest guest]

I totally agree with Louise. When meds are not working I would sleep 10-12

hours at night and still take a 3 hour nap which I didn't want to get up

from. For me the main benefit of correct medication is the relief from the

fatigue. Still have pain but can tolerate most of it but hated sleeping all

the time and never feeling rested.

Temple

3 Fox Haven Way

Chelmsford, MA 01824

dat2352@...

http://www.homestead.com/kuddlekrittersfarm/index.html FAMILY

http://www.homestead.com/kuddlekrittersdairygoats/index.html FARM

http://www.homestead.com/kuddlekraft/index.html CRAFTS

[Guest guest]

<PRE>hi vikki, i know that ol fatigue thing. sometimes a cup o tea will bring me

out a little while so at least i can get something accomplished. today i

overdid it again. besides my 2 appts. i went to the store, walked the dog

twice and mowed the grass and pulled some weeds. just so tired of sitting on

my butt. my son is off tomorrow, but he is going to the chiro and i didn't

want him to " blow " his treatment. the grass was so long i just couldn't stand

it anymore. i'll be on my butt the rest of the day, maybe even tomorrow. who

knows. kathy in il

[Guest guest]

Hi Vikki,

I'm sorry to hear that the Remicade isn't helping you, and I'm especially

sorry to hear you're having such a bad flare. I wish I had a suggestion for

dealing with the fatigue, but I really don't. I'll certainly be interested

in anyone's replies with suggestions, though.

Sending love and hugs,

Carol

[ ] Fatigue

I had my third Remicade infusion last Thursday. I had hoped that it would

FINALLY start helping, but no such luck. (My rheumy said if it didn't start

to help, then he would increase my dose next time.) Since then, I've been

flaring big time. My hands hurt so much that I can't pick up a pillow or

cut my own food, and the fatigue is killer! I wake up tired and just want

to sleep the whole day long! I'm not sure if it's from the RA, fibro, or

the stress of last week (long, unpleasant story), and I don't know what I

can do to get rid of it! I've increased my prednisone from 5mg to 15mg

(dr's orders) to help with the pain, but what can I do about the fatigue?

All I seem to do these past days is lay around on the couch and cat-nap. Is

that all I can do - just wait for it to go away? I really hate this. It's

SO much easier to deal with pain than with fatigue. At least I can work

around the pain. Any suggestions?

Vikki

[Guest guest]

Vikki, sorry you are going through a rought time with good ole uncle

arthur...flares are tough..I hope you can find some relief soon...the

fatigue is tough, you are in my thoughts...marge

[ ] Fatigue

> I had my third Remicade infusion last Thursday. I had hoped that it would

FINALLY start helping, but no such luck. (My rheumy said if it didn't start

to help, then he would increase my dose next time.) Since then, I've been

flaring big time. My hands hurt so much that I can't pick up a pillow or

cut my own food, and the fatigue is killer! I wake up tired and just want

to sleep the whole day long! I'm not sure if it's from the RA, fibro, or

the stress of last week (long, unpleasant story), and I don't know what I

can do to get rid of it! I've increased my prednisone from 5mg to 15mg

(dr's orders) to help with the pain, but what can I do about the fatigue?

All I seem to do these past days is lay around on the couch and cat-nap. Is

that all I can do - just wait for it to go away? I really hate this. It's

SO much easier to deal with pain than with fatigue. At least I can work

around the pain. Any suggestions?

> Vikki

>

>

>

[Guest guest]

Hi Clair - if you are having problems with PS on your scalp, tr Avon's

Techniques anti-dandruff shampoo. I only used it for a month and my PS on my

scalp totally went away. I don't know if it will work for you but it sure did

for me. - J

[ ] fatigue

Hi,

My name is and I am 25 years old. I was dx with psoriasis

when I was 19. About 2 years before that I had been having terrible

hip pain and knee pain. I had tons of physical therapy, ultrasounds,

iontophoesis etc. I left therapy just as confused as when I

started.... When I was dx with psoriasis I was asked if I had joint

pain. It was around that time I was dx'd with PA. Now 6 years later

I am progressively getting more and more fatigued. I have been put

through numerous sleep tests etc..... They all came back normal. My

joints are bothering me more and more. I'm not on any meds at this

time except dexedrine to stay awake. Does anyone else have this

problem? My joint pain hasn't been debilitating up til now but it's

getting much worse..... I feel like a hyperchondraic going to the

Dr. because my P isn't terrible anymore. It's mostly on my scalp.

Only my hips and knees are bothersome. I can see no swelling either

but they feel swollen. It's hard to convince a Dr. you are in severe

pain when you look to be fine. Any advice?

[Guest guest]

- Get to a rheumatologist. You need to be on arthritis drugs. Just

because your psoriasis isn't severe, doesn't mean the arthritis portion isn't

severe. I have one tiny spot of P on my wrist and some on my scalp, but I'm

on 3 injections of enbrel a week to protect my joints and keep my arthritis

flares under control.

Please don't let your GP or derm. treat this - go to a rheumy.

[Guest guest]

I'm so sorry to hear that you still aren't doing well, Al. Time to have

a long discussion with your rheumatologist when she returns. In the

meanwhile, I hope the prednisone helps.

I'm assuming that you used MTX in your past and isn't an option.

[ ] Fatigue

> Hi everyone,

>

> Unfortunately, the Prednisone " pick me up " only lasted as long as my

> dosepak. I took the final 4mgs this morning but started noticing a

> couple of days ago that my fatigue and pain were coming back.

>

> Today, I feel like a truck hit me and have general achiness all over.

> Plus, feeling exhausted right after you wake up makes for

> an " interesting " day at work to say the least. I think it's time to

> put in another call to my Rhuemy for advice. I feel I am running out

> of options at this point. I still hope that the Humira will work its

> magic but am starting to get a bit more skeptical.

>

> Any thoughts? I would be more than happy to hear any suggestions at

> this point.

>

> I hope everyone is having as painfree a day as possible.

>

> Love and hugs to all,

>

> Alan

[Guest guest]

Hi ,

Thanks. Yes, I have tried MTX but never in an injectable form. The

pills made me foggy and sick.

If the Humira doesn't work I would be open to discussing MTX. I may

even be open to discussing the use of Enbrel again and risk the side-

effects. I need to try and alleviate this fatigue somehow.

Hugs,

Alan

> I'm so sorry to hear that you still aren't doing well, Al. Time to

have

> a long discussion with your rheumatologist when she returns. In the

> meanwhile, I hope the prednisone helps.

>

> I'm assuming that you used MTX in your past and isn't an option.

>

>

>

>

> [ ] Fatigue

>

>

> > Hi everyone,

> >

> > Unfortunately, the Prednisone " pick me up " only lasted as long as

my

> > dosepak. I took the final 4mgs this morning but started noticing a

> > couple of days ago that my fatigue and pain were coming back.

> >

> > Today, I feel like a truck hit me and have general achiness all

over.

> > Plus, feeling exhausted right after you wake up makes for

> > an " interesting " day at work to say the least. I think it's time

to

> > put in another call to my Rhuemy for advice. I feel I am running

out

> > of options at this point. I still hope that the Humira will work

its

> > magic but am starting to get a bit more skeptical.

> >

> > Any thoughts? I would be more than happy to hear any suggestions

at

> > this point.

> >

> > I hope everyone is having as painfree a day as possible.

> >

> > Love and hugs to all,

> >

> > Alan

[Guest guest]

I like the injectable MTX idea better than the Enbrel idea, Al, but, of

course, your doctor and you will be the best ones to decide which way to

go.

[ ] Re: Fatigue

> Hi ,

>

> Thanks. Yes, I have tried MTX but never in an injectable form. The

> pills made me foggy and sick.

>

> If the Humira doesn't work I would be open to discussing MTX. I may

> even be open to discussing the use of Enbrel again and risk the side-

> effects. I need to try and alleviate this fatigue somehow.

>

> Hugs,

>

> Alan

>

>

> > I'm so sorry to hear that you still aren't doing well, Al. Time to

> have

> > a long discussion with your rheumatologist when she returns. In the

> > meanwhile, I hope the prednisone helps.

> >

> > I'm assuming that you used MTX in your past and isn't an option.

> >

> >

[Guest guest]

Yeaaaaaaaaaa! Er..... excuse me for butting in.... but..... GINA! This

just came on my email!!!! Yaaaaaaa! Eowwwww! I think I am back in

business! This is the FIRST EMAIL I have received in days! Even though

my " posts " went to the group, I was receiving nothing back! Now, I have

to get caught up!

Ok.... back to MTX!!!

By the way, I used the injectable. I believe, among this group I was on

one of the largest doses than anyone with injectable. We never could

figure out why the doctor had me on so much, unless it was because of

the psoriasis along with the arthritis. The fatigue wiped me out. For

many other reasons also, I finally stopped the MTX. (Lung problems

being one of them, also bleeding, etc.) When I got off of it, the

psoriasis in my scalp came back with a vengeance however. And also my

fingernails got really ugly and bad again. So it was probably helping

me. But I could not tolerate the side effects.

But it also caused my joint pain to escalate off the scale! It never did

help me with the " pain " as the doctor promised. I think I am just

" medicine challenged " .

Ok.... I got my RA SUPPORT list back! So I will go and get my other work

done with peace of mind that I have YOU ALL to sit down with tonight and

" share " our days with!

Elf

wrote:

> I like the injectable MTX idea better than the Enbrel idea, Al, but,

> of

> course, your doctor and you will be the best ones to decide which way

> to

> go.

>

>

>

>

> [ ] Re: Fatigue

>

>

> > Hi ,

> >

> > Thanks. Yes, I have tried MTX but never in an injectable form. The

> > pills made me foggy and sick.

> >

> > If the Humira doesn't work I would be open to discussing MTX. I may

> > even be open to discussing the use of Enbrel again and risk the

> side-

> > effects. I need to try and alleviate this fatigue somehow.

> >

> > Hugs,

> >

> > Alan

> >

> >

> > > I'm so sorry to hear that you still aren't doing well, Al. Time to

>

> > have

> > > a long discussion with your rheumatologist when she returns. In

> the

> > > meanwhile, I hope the prednisone helps.

> > >

> > > I'm assuming that you used MTX in your past and isn't an option.

> > >

> > >

>

>

[Guest guest]

I agree with you Elf....the mix they have me on is

making me feel better , but the fatigue which I

believe is caused by the MTX at times is debilatating,

and my PCP agreed that the MTX does cause

fatigue......Kathi in OK

--- Elf <sheadley@...> wrote:

> Yeaaaaaaaaaa! Er..... excuse me for butting in....

> but..... GINA! This

> just came on my email!!!! Yaaaaaaa! Eowwwww! I

> think I am back in

> business! This is the FIRST EMAIL I have received in

> days! Even though

> my " posts " went to the group, I was receiving

> nothing back! Now, I have

> to get caught up!

> Ok.... back to MTX!!!

> By the way, I used the injectable. I believe, among

> this group I was on

> one of the largest doses than anyone with

> injectable. We never could

> figure out why the doctor had me on so much, unless

> it was because of

> the psoriasis along with the arthritis. The fatigue

> wiped me out. For

> many other reasons also, I finally stopped the MTX.

> (Lung problems

> being one of them, also bleeding, etc.) When I got

> off of it, the

> psoriasis in my scalp came back with a vengeance

> however. And also my

> fingernails got really ugly and bad again. So it

> was probably helping

> me. But I could not tolerate the side effects.

> But it also caused my joint pain to escalate off the

> scale! It never did

> help me with the " pain " as the doctor promised. I

> think I am just

> " medicine challenged " .

> Ok.... I got my RA SUPPORT list back! So I will go

> and get my other work

> done with peace of mind that I have YOU ALL to sit

> down with tonight and

> " share " our days with!

> Elf

>

> wrote:

>

> > I like the injectable MTX idea better than the

> Enbrel idea, Al, but,

> > of

> > course, your doctor and you will be the best ones

> to decide which way

> > to

> > go.

> >

> >

> >

> >

> > [ ] Re: Fatigue

> >

> >

> > > Hi ,

> > >

> > > Thanks. Yes, I have tried MTX but never in an

> injectable form. The

> > > pills made me foggy and sick.

> > >

> > > If the Humira doesn't work I would be open to

> discussing MTX. I may

> > > even be open to discussing the use of Enbrel

> again and risk the

> > side-

> > > effects. I need to try and alleviate this

> fatigue somehow.

> > >

> > > Hugs,

> > >

> > > Alan

> > >

> > >

> > > > I'm so sorry to hear that you still aren't

> doing well, Al. Time to

> >

> > > have

> > > > a long discussion with your rheumatologist

> when she returns. In

> > the

> > > > meanwhile, I hope the prednisone helps.

> > > >

> > > > I'm assuming that you used MTX in your past

> and isn't an option.

> > > >

> > > >

> >

> >

[Guest guest]

Susie,

What about taking the dose that is normally prescribed for RA and PA?

Maybe at a lower dose you could tolerate it?

I don¹t know what is going on with , but many people are having

trouble.

Don¹t those people realize that we NEED these messages?

a

> Yeaaaaaaaaaa! Er..... excuse me for butting in.... but..... GINA! This

> just came on my email!!!! Yaaaaaaa! Eowwwww! I think I am back in

> business! This is the FIRST EMAIL I have received in days! Even though

> my " posts " went to the group, I was receiving nothing back! Now, I have

> to get caught up!

> Ok.... back to MTX!!!

> By the way, I used the injectable. I believe, among this group I was on

> one of the largest doses than anyone with injectable. We never could

> figure out why the doctor had me on so much, unless it was because of

> the psoriasis along with the arthritis. The fatigue wiped me out. For

> many other reasons also, I finally stopped the MTX. (Lung problems

> being one of them, also bleeding, etc.) When I got off of it, the

> psoriasis in my scalp came back with a vengeance however. And also my

> fingernails got really ugly and bad again. So it was probably helping

> me. But I could not tolerate the side effects.

> But it also caused my joint pain to escalate off the scale! It never did

> help me with the " pain " as the doctor promised. I think I am just

> " medicine challenged " .

> Ok.... I got my RA SUPPORT list back! So I will go and get my other work

> done with peace of mind that I have YOU ALL to sit down with tonight and

> " share " our days with!

> Elf

>

[Guest guest]

sorry you are not feeling better alan. you'd better call jennifer. she would

be upset if you don't. i hope you can come up with some answers. i took 2 mgs

of prednisone yesterday too. i was having a rough day. i was eating like i

had a steamshovel last night. geez....2 mgs!!! kathy in il

[Guest guest]

i was scared to try mtx for the tummy troubles too. i have been doing the

injections since november. i have to tell you the first 6 weeks were not alot

of fun. now it is just the day after i do my shot i feel a little queezy and

plan to make a rest day. renting movies and relaxing. but i have been

generally feeling pretty good. i have even been able to return to work part

time. i am on my 3rd week of my job after 2 years of being sick and tired,

of being sick and tired!!!! i still get sick and tired sometimes. i just tell

myself it is a reminder that i have a disease and to take it easy. hang in

there alan. kathy in il

[Guest guest]

Hi June,

Thanks. No, I do not suffer from anemia but have had B12 shots a

long time ago. Definitely something to consider.

I am glad you received your renewal for Enbrel and that it is working

for you. It certainly helped me.

I think it's great that you took a stand and became committed to

staying as painfree as possible. I believe a strong mental outlook

does wonders. Good for you!

Have a wonderful Tuesday.

Hugs,

Alan

[Guest guest]

Hi Kathy,

Thanks. I called but she is out of the office this week. Her nurse

told me to take another dosepack if I need it but I am going to try

and hang in there. Actually, I feel a bit better today, knock on wood.

I hope that you are feeling better today and that you don't have to

stay on the prednisone. It certainly does increase your appetite.

Take care Kathy.

Alan

> sorry you are not feeling better alan. you'd better call jennifer.

she would

> be upset if you don't. i hope you can come up with some answers. i

took 2 mgs

> of prednisone yesterday too. i was having a rough day. i was eating

like i

> had a steamshovel last night. geez....2 mgs!!! kathy in il

[Guest guest]

Hi again Kathy,

I am so glad you are getting some relief and I think it's great that

you are working again. I hope that every day brings you more and more

relief.

Take care.

Hugs,

Alan

> i was scared to try mtx for the tummy troubles too. i have been

doing the

> injections since november. i have to tell you the first 6 weeks

were not alot

> of fun. now it is just the day after i do my shot i feel a little

queezy and

> plan to make a rest day. renting movies and relaxing. but i have

been

> generally feeling pretty good. i have even been able to return to

work part

> time. i am on my 3rd week of my job after 2 years of being sick and

tired,

> of being sick and tired!!!! i still get sick and tired sometimes. i

just tell

> myself it is a reminder that i have a disease and to take it easy.

hang in

> there alan. kathy in il