Re: Looking for input on fatigue

[Guest guest]

Hi ,

I have allot of fatigue. I also have FM, and CFS, so I think I get fatigue

from all 3. I can't get out of bed many days, and sleep 12-14 hours,

otherwise I am like a Zombie. After that much sleep I still have fatigue.

Jeanette

[ ] Looking for input on fatigue

> Hi, My name is . I am 34 years old and I was diagnosed with PA

> in 1997, just 2 months after I was married. I have been having more

> recent flare ups lately. I have a 3 year old son and the flare ups

> really prevent me from spending quality time with him and my husband.

> Does anyone suffer from fatigue? I find that I struggle to get out of

> bed in the morning. I work full time, so I get up and get to work, but

> I am drowsy all day long. At night, I come home, cook and clean up. I

> don't do much else.

>

> I am looking for someone else who might have similar symptoms.

>

> Thank you.

[Guest guest]

,

You are not alone in this battle...I suffer from fatigue almost constantly...I

think part of mine is due to lack of any quality sleep..and part of it is

related to some of my meds..I am not real sure what to do about it either..I

just cope the best I can and pray alot..I am sorry I was no better help..

People who suffer from fatigue alot of times are misunderstood as lazy but it

is not that at all..if only we could go just a little while without feeling like

our bodies are going to collapse..I hope others who read this post have some

suggestions for us..

I wish you the best..hang in there!!

Vickey

on <butchandheather@...> wrote:

Hi, My name is . I am 34 years old and I was diagnosed with PA

in 1997, just 2 months after I was married. I have been having more

recent flare ups lately. I have a 3 year old son and the flare ups

really prevent me from spending quality time with him and my husband.

Does anyone suffer from fatigue? I find that I struggle to get out of

bed in the morning. I work full time, so I get up and get to work, but

I am drowsy all day long. At night, I come home, cook and clean up. I

don't do much else.

I am looking for someone else who might have similar symptoms.

Thank you.

[Guest guest]

Hi ,

My name is Sandi--I guess I've been " lurking " for a while--this is my first

post. I was diagnosed with PA in January of this year after having many

symptoms for many years. It seems like it really started to wreak havoc in

early 2004. I thought it was due to menopause and was prescribed

antidepressants. They made things worse, and I ended up with symptoms that

made my doctor test me for Lupus. My tests are always negative, so it was

almost a blessing when my toes and fingers swelled up because everyone could see

something was wrong. Anyhow, right now my pain is much better, but the fatigue

is relentless. On my first visit to the rheumatologist, he said I shouldn't be

tired from this. On my third visit, he said it is part of the disease. I

already knew that from reading the posts here. This group gives me a lot of

helpful information and it helps to know there other people out there dealing

with this, although I wish nobody had to. Sometimes it makes me feel lucky so

far I am just taking NSAIDS, not any heavy duty meds. So, I think it is

very likely that your fatigue is being caused by PA. It never hurts to rule out

other things like anemia, though.

My kids are grown up and I am not working, so I manage to get through my days.

I really sympathize with those of you who are raising kids and/or working while

coping with this disease. I'm sure other people don't understand the valiant

fight it takes for you to do these things. I think most of the people in my

family do not understand. Even the ones who have osteoarthritis. It seems to

be a whole different ballgame.

Sandi K

[ ] Looking for input on fatigue

Hi, My name is . I am 34 years old and I was diagnosed with PA

in 1997, just 2 months after I was married. I have been having more

recent flare ups lately. I have a 3 year old son and the flare ups

really prevent me from spending quality time with him and my husband.

Does anyone suffer from fatigue? I find that I struggle to get out of

bed in the morning. I work full time, so I get up and get to work, but

I am drowsy all day long. At night, I come home, cook and clean up. I

don't do much else.

I am looking for someone else who might have similar symptoms.

Thank you.

[Guest guest]

Hi ,

Wow, full time job, come home, cook and clean, run round after a

three year old son, I feel tired just thinking about it. There

might be one or maybe two other people on the site that have simular

fatigue problems, as for me, I'm still suffering from my excursion

to watch Mountain on Saturday night, West what an awesome

guitarist. I'm sure that their ways of dealing with the fatigue are

far better than mine as I tend to keep going until I can't go

anymore.

Keep the light shining,

Ian.

>

> Hi, My name is . I am 34 years old and I was diagnosed

with PA

> in 1997, just 2 months after I was married. I have been having

more

> recent flare ups lately. I have a 3 year old son and the flare

ups

> really prevent me from spending quality time with him and my

husband.

> Does anyone suffer from fatigue? I find that I struggle to get

out of

> bed in the morning. I work full time, so I get up and get to

work, but

> I am drowsy all day long. At night, I come home, cook and clean

up. I

> don't do much else.

>

> I am looking for someone else who might have similar symptoms.

>

> Thank you.

>

[Guest guest]

Hi Ian,

That seems to be what I do. Then I am exhausted and I spend an entire weekend

in bed or on the couch and I feel guilty. I never realized fatigue would be so

bad. I am always tired, no matter how much sleep I get at night.

I've never heard of Mountain. What genre of music are they?

Hope you're feeling better soon.

viking_warlock <viking_warlock@...> wrote:

Hi ,

Wow, full time job, come home, cook and clean, run round after a

three year old son, I feel tired just thinking about it. There

might be one or maybe two other people on the site that have simular

fatigue problems, as for me, I'm still suffering from my excursion

to watch Mountain on Saturday night, West what an awesome

guitarist. I'm sure that their ways of dealing with the fatigue are

far better than mine as I tend to keep going until I can't go

anymore.

Keep the light shining,

Ian.

[Guest guest]

Hey ! Your not the only one who feels tired all time. I give

you a lot of credit working full time AND having a child. I'm not

planning on having children because I fear that I could not keep up

with them. I myself have been diagnosed for about 6 months. I too

work full time, and by the time I get home I'm exhausted. I usually

take a little nap, then I'm off making dinner and picking up around

the house. I feel sorry for my fiance at times because a lot of the

time I don't have it in me to do a lot of other things besides sit

and watch TV. Having mild pain most of the time wears on a person and

I think in general PA just makes you tired. I also find that my

tendons are very stiff and swollen now that it is getting more

humid. All I can say is hang in there, and take your time. Enjoy

times when you feel good. Good luck!

>

> Hi, My name is . I am 34 years old and I was diagnosed with

PA

> in 1997, just 2 months after I was married. I have been having

more

> recent flare ups lately. I have a 3 year old son and the flare ups

> really prevent me from spending quality time with him and my

husband.

> Does anyone suffer from fatigue? I find that I struggle to get out

of

> bed in the morning. I work full time, so I get up and get to work,

but

> I am drowsy all day long. At night, I come home, cook and clean

up. I

> don't do much else.

>

> I am looking for someone else who might have similar symptoms.

>

> Thank you.

>

[Guest guest]

The worst part of the PA for me is the fatigue. I used to be able to go all day

and run around all wekend and still have energy to spare. I used to be able to

work out regularly and was thin and didn't have to worry about my weight. Not

any more. Just living the most normal day exhausts me. If I have a few busy

days in a row I need to sleep a whole day to recover. Each weekend I generally

have one dray where I just lie on the couch because I need to recharge. I have

been on Humira for several months now and I'm just starting to notice an

improvement in my energy levels. Not that much better, but it seems to be

starting to get better. It's the hardest symptom for my friends and family to

understand. No one gets why a 31 year old needs a nap. My friends don't

understand why I can stay out with them at night anymore. It's really hard.

But, like I said, the Humira is helping. And just always being aware of my body

and how I'm feeling keeps me more regulated so I

don't crash. (I once fell asleep in the middle of a family party because I was

fighting the fatigue all day.) When I'm tired I go home or take a nap....and my

friends and family have just learned that's the way it is. Stress makes

everything a lot worse so I try to relax more. Let me know if you have any

questions or just want to talk.

Paris

on <butchandheather@...> wrote:

Hi, My name is . I am 34 years old and I was diagnosed with PA

in 1997, just 2 months after I was married. I have been having more

recent flare ups lately. I have a 3 year old son and the flare ups

really prevent me from spending quality time with him and my husband.

Does anyone suffer from fatigue? I find that I struggle to get out of

bed in the morning. I work full time, so I get up and get to work, but

I am drowsy all day long. At night, I come home, cook and clean up. I

don't do much else.

I am looking for someone else who might have similar symptoms.

Thank you.

[Guest guest]

Hello ,

I also have a full time job and two teen age boys and a husband that I must

share my time with at home. I thought well I am 43 and this has to be the

reason that I stay tired all the time. I have felt this way for a long time so

I really don't think that ALL of it is because I am 43. I use to work for hours

out in the yard and keep a very clean house. Now days by the time that I get

home from work, cook clean that up, start some laundry and get things ready for

the next days work I am totally tired. I feel that at times it takes all I have

to do some of the things that I have to do. I thought and asked myself this

question " am I lazy? " Why do I feel this way? I work in the school system and

yesterday was my last day of work until August. I will feel totally different

in a few days just getting more rest, and having the opportunity to sit when I

need to. Is this part of the Psoriatic Arthritis?

Have a great Day

Tammy

>

> Hi, My name is . I am 34 years old and I was diagnosed

with PA

> in 1997, just 2 months after I was married. I have been having

more

> recent flare ups lately. I have a 3 year old son and the flare

ups

> really prevent me from spending quality time with him and my

husband.

> Does anyone suffer from fatigue? I find that I struggle to get

out of

> bed in the morning. I work full time, so I get up and get to

work, but

> I am drowsy all day long. At night, I come home, cook and clean

up. I

> don't do much else.

>

> I am looking for someone else who might have similar symptoms.

>

> Thank you.

>

[Guest guest]

Welcome Sandi....glad you are here. -Betz

Sandi Korte <skorte@...> wrote: Hi ,

My name is Sandi--I guess I've been " lurking " for a while--this is my first

post. I was diagnosed with PA in January of this year after having many

symptoms for many years. It seems like it really started to wreak havoc in

early 2004. I thought it was due to menopause and was prescribed

antidepressants. They made things worse, and I ended up with symptoms that

made my doctor test me for Lupus. My tests are always negative, so it was

almost a blessing when my toes and fingers swelled up because everyone could see

something was wrong. Anyhow, right now my pain is much better, but the fatigue

is relentless. On my first visit to the rheumatologist, he said I shouldn't be

tired from this. On my third visit, he said it is part of the disease. I

already knew that from reading the posts here. This group gives me a lot of

helpful information and it helps to know there other people out there dealing

with this, although I wish nobody had to. Sometimes it makes me feel

lucky so far I am just taking NSAIDS, not any heavy duty meds. So, I

think it is very likely that your fatigue is being caused by PA. It never hurts

to rule out other things like anemia, though.

My kids are grown up and I am not working, so I manage to get through my days.

I really sympathize with those of you who are raising kids and/or working while

coping with this disease. I'm sure other people don't understand the valiant

fight it takes for you to do these things. I think most of the people in my

family do not understand. Even the ones who have osteoarthritis. It seems to

be a whole different ballgame.

Sandi K

[Guest guest]

Hi

I can relate. I wasn't diagnosed in my 30s, but I had the flareups and

fatigue and dealt with it with motrin and body work. FIrst drug I was

started on last summer was plaquenil, and although it didn't help much

with the pain, it helped the fatigue and loss of apetite.

You didn't mention any medications, so I'm assuming you take an

antiinflammatory like motrin? Do you have a rheumatologist?

[Guest guest]

Sweetie I KNOW about how it can prevent you from spending real time with your

child. To me, that's the most painful part. My daughter has special needs but

she understands to some degree and she tries to help me. But children are not

supposed to take care of their parents until they are much older. The way I see

it, you and I have an opportunity now to show our kids how to pesevere.

Hopefully that's what they will remember...that we never gave up and that we

smiled through the pain. We teach them to be kind even when they don't feel like

it. But now we have to show them how it's done. I hope that your husband is

supportive and is your friend right now. I'll be keeping you in my prayers. Keep

reading the posts and get all the information you can from them. You'll have

friends who understand here. -Betz

on <butchandheather@...> wrote: Hi, My name is .

I am 34 years old and I was diagnosed with PA

in 1997, just 2 months after I was married. I have been having more

recent flare ups lately. I have a 3 year old son and the flare ups

really prevent me from spending quality time with him and my husband.

Does anyone suffer from fatigue? I find that I struggle to get out of

bed in the morning. I work full time, so I get up and get to work, but

I am drowsy all day long. At night, I come home, cook and clean up. I

don't do much else.

I am looking for someone else who might have similar symptoms.

Thank you.

[Guest guest]

Hi ,

In the last thirty years, there have been very few days that I have

woken up in the morning, ready to move. Over time, fatigue,

stiffness and pain have melded into one. When I am feeling a good

deal of pain without being too fatigued, I know that unless I rest,

and soon, I will become very fatigued in short order. When I take a

deep breath and will myself through those painful hours, I am

fatigued the next day or three. I think that you could benefit from

reading The Spoon Theory:

http://www.butyoudontlooksick.com/personal_essays/

Just go to the above link, and look for Spoon Theory. It is a good

site in which to meander. It will help you understand that you are

not alone in this.

Please do not try to do everything if it causes undo pain or

fatigue. Look for help, and don't be ashamed. You have an auto-

immune disease that you did not ask for, and it is not your fault

for having it. Note, that if you had a fatal accident, the world

would have to go on without you. I think the world, particularly

particularly your child, will be far richer by just having you here,

but doing less, if that is what is needed. I have had to do much

less, change my goals, and be much more flexible with how I make it

through a day.

I have researched various peoples of the planet, and I have

discovered that some of the very happiest people are people who have

the least number of things. (i.e. The K!un!th people of Africa are

known for being very happy and they work but a few hours a day (less

than 4). In the study, work includes house-keeping, food gathering

and food preparation.)

A few years back (pre-diagnosis), while painfully driving my family

through British Columbia mountains, I had to learn the hard way that

I needed to do less. With my lovely wife sleeping through the

effects of just having had nasty gum-grafting surgery beside me, I

allowed the pain to become so great that I blacked out - and hit the

ditch at 110 km per hour. When I awoke from the accident, I was

terror-stricken to see that my family was not in our twisted,

somewhat windowless, minivan! I thought they had been cast from the

vehicle, horror! I stumbled out of my wide-open door to find kindly

people had come along and had removed my family to a place behind

and away from the van. Thinking my neck was broken, they left me

there, head bleeding, neck-askew, because they couldn't help me; and

they didn't want my son to see gurgling to my death. Wonderfully,

the acrobatic minivan was the only of our party not survive the

quadruple-twisting, double summersault. Always wear your seat

belts! ...Brent

[Guest guest]

I have been on several medications. I can't take high doses of Motrin or

Naproxen. I tried Methotrexate, too. I'm allergic. I took Enbrel for a few

years and became scared of the long term effects. Then I tried Vioxx, didn't

work for me. Celebrex works OK, but I often need to get Prednisone for brief

periods. Now I am on Celebrex and Humira. This seems to be controlling the

pain, swelling and stiffness. I fear the effects of taking these drugs for the

long term. Being only 34, I am sure I will have to take these for at least 30

years. (I hope)

I have been seeing a rheumatologist since I was 27. This is a terrible

disease. I pray everyday that I have not passed this disease to my son.

Thank you for the encouraging words.

[Editor's Note: , most of us had (have) the same fears but we have

reached the point where we fear what the disease is doing to us more than we

fear what the meds might do. It's a tough balancing act. Kathy F.]

math_nawi <math_nawi@...> wrote:

Hi

I can relate. I wasn't diagnosed in my 30s, but I had the flareups and

fatigue and dealt with it with motrin and body work. FIrst drug I was

started on last summer was plaquenil, and although it didn't help much

with the pain, it helped the fatigue and loss of apetite.

You didn't mention any medications, so I'm assuming you take an

antiinflammatory like motrin? Do you have a rheumatologist?

[Guest guest]

Hi

Yes, this can be very scary. However I can guarantee you will not be

on Humira for 30 years - we are in a new renaissance era in arthritis

research now, and I am quite sure the medicines will be many and

effective - I can't even imagine what will be available in 10 years (

10 years ago there were no humira or enbrel type drugs ) for all we

know they may be growing us new joints by then! In fact I wouldn't at

all be surprised if many of these diseases are relatively minor

ailments by the time your son is your age, nevermind the chance that

he may not develop it at all.

The best tool we have for our fears is vigilance. We already live with

compromised immune systems even without any drugs. By keeping vigilant

and knowing our bodies, we can address the potential problems earlier

when they are easier to treat.

Glad to see you are on a biologic drug, proven to significantly

decrease joint damage.

A good stretch here and there can't hurt either...

Best wishes -

[Guest guest]

Hi ,

I am really behind in reading the posts so I am just now getting around to

putting in my two cents on fatigue. Or should I say FATIGUE!! I have been

down for the better part of 2 weeks and can't seem to get rested up. I live

with my daughter and we have had a couple projects going on here at the house

and all I had to do was let the workmen in or sit and watch, but I am totally

exhausted. I plan to drive to be with my grandson for his High School

Graduation this next week, and it is a 5 - 6 hour drive. Depends on how many

rest

areas I have to hit before I get there. I will spend all tomorrow resting

and leave on Sat. I can't miss this graduation because this is the child who

came home from his first day of school, looked up at me and said " Gramma, this

was the worst day of my life! " It's hard to tell a first grader that he has

many more " worst days of my life " ahead of him, but I will show him that

anything can be accomplished with a little fortitude and lots of support. I

know that when I get to Oregon, family will take care of my every need until I

can't stand it anymore. Sometimes it is a curse to be so independent, but I

know they understand I will do whatever needs doing, just a lot slower than

everybody else. Hang in there and don't feel guilty for being tired.

Especially if you are holding down a full time job. I pray for someone to

find a

cure for the fatigue before I am too old to make use of it. I had many things

planned for my retirement that I can't do being disabled. Bye for now.

Janet in Ca

[Guest guest]

>

> Hi ,

> I am really behind in reading the posts so I am just now getting

around to

> putting in my two cents on fatigue. Or should I say FATIGUE!! I

have been

> down for the better part of 2 weeks and can't seem to get rested

up. I live

> with my daughter and we have had a couple projects going on here

at the house

> and all I had to do was let the workmen in or sit and watch, but I

am totally

> exhausted. I plan to drive to be with my grandson for his High

School

> Graduation this next week, and it is a 5 - 6 hour drive. Depends

on how many rest

> areas I have to hit before I get there. I will spend all

tomorrow resting

> and leave on Sat. I can't miss this graduation because this is

the child who

> came home from his first day of school, looked up at me and

said " Gramma, this

> was the worst day of my life! " It's hard to tell a first grader

that he has

> many more " worst days of my life " ahead of him, but I will show

him that

> anything can be accomplished with a little fortitude and lots of

support. I

> know that when I get to Oregon, family will take care of my every

need until I

> can't stand it anymore. Sometimes it is a curse to be so

independent, but I

> know they understand I will do whatever needs doing, just a lot

slower than

> everybody else. Hang in there and don't feel guilty for being

tired.

> Especially if you are holding down a full time job. I pray for

someone to find a

> cure for the fatigue before I am too old to make use of it. I

had many things

> planned for my retirement that I can't do being disabled. Bye

for now.

> Janet in Ca

>

>

>

>

[Guest guest]

--

- In , cameronparkmom@... wrote:

> Hi all, I have found something that helps me with the FATIGUE it

is prenatal vitamins. I have been taking them for a week and I feel

so much better. The only thing is I still am in the bed if I have a

day out like going to the doctor.I went yesterday and today I just

got up to check my email. It is 6pm here where I live Texas. Just

thought that I would put my 2 cents worth in. Sharon

> Hi ,

> I am really behind in reading the posts so I am just now getting

around to

> putting in my two cents on fatigue. Or should I say FATIGUE!! I

have been

> down for the better part of 2 weeks and can't seem to get rested

up. I live

> with my daughter and we have had a couple projects going on here

at the house

> and all I had to do was let the workmen in or sit and watch, but I

am totally

> exhausted. I plan to drive to be with my grandson for his High

School

> Graduation this next week, and it is a 5 - 6 hour drive. Depends

on how many rest

> areas I have to hit before I get there. I will spend all

tomorrow resting

> and leave on Sat. I can't miss this graduation because this is

the child who

> came home from his first day of school, looked up at me and

said " Gramma, this

> was the worst day of my life! " It's hard to tell a first grader

that he has

> many more " worst days of my life " ahead of him, but I will show

him that

> anything can be accomplished with a little fortitude and lots of

support. I

> know that when I get to Oregon, family will take care of my every

need until I

> can't stand it anymore. Sometimes it is a curse to be so

independent, but I

> know they understand I will do whatever needs doing, just a lot

slower than

> everybody else. Hang in there and don't feel guilty for being

tired.

> Especially if you are holding down a full time job. I pray for

someone to find a

> cure for the fatigue before I am too old to make use of it. I

had many things

> planned for my retirement that I can't do being disabled. Bye

for now.

> Janet in Ca

>

>

>

>

[Guest guest]

Hi ,

I bet you found plenty of people here with similar symptoms. lol Welcome to

the group. I'm glad you found us but sorry that you had to. Fatigue is a big

part of this disease for a lot of us.

What meds are you on? Are they helping?

We have a good group of people here. Very knowledgeable and caring.

Let us know how things are for you just now if you can.

Take care,

In a message dated 30/05/2006 23:47:01 GMT Daylight Time,

butchandheather@... writes:

Hi, My name is . I am 34 years old and I was diagnosed with PA

in 1997, just 2 months after I was married. I have been having more

recent flare ups lately. I have a 3 year old son and the flare ups

really prevent me from spending quality time with him and my husband.

Does anyone suffer from fatigue? I find that I struggle to get out of

bed in the morning. I work full time, so I get up and get to work, but

I am drowsy all day long. At night, I come home, cook and clean up. I

don't do much else.

I am looking for someone else who might have similar symptoms.

[Guest guest]

Welcome ,

Yes I to suffer from fatigue. I am like you I work a full time job and by the

time that I get home cook dinner, clean it up and maybe get some house work done

I am ready to go to bed. I think what is the world is wrong with me!! I am not

that old to really feel this way. I don't think that is't depression it is not

like that I am sad or anything. I am just tired. I wan't to do things and most

of the time I will force myselt to do it mainly for my husband and my family. I

am usually glad that I do go and my husband is really understanding. He don't

push me to my limits. This weekend I am having a party for my mother in laws

60th birthday. I have had to do a lot to get ready for it. I need to work on

the house and do some cleaning. Just thinking about it makes me tired. I am

talking about deep cleaning like wash windows and curtains. Darrell (my husband)

will tell me not to worry about it.

Good luck

Tammy

martincoyless@... wrote:

Hi ,

I bet you found plenty of people here with similar symptoms. lol Welcome to

the group. I'm glad you found us but sorry that you had to. Fatigue is a big

part of this disease for a lot of us.

What meds are you on? Are they helping?

We have a good group of people here. Very knowledgeable and caring.

Let us know how things are for you just now if you can.

Take care,

In a message dated 30/05/2006 23:47:01 GMT Daylight Time,

butchandheather@... writes:

Hi, My name is . I am 34 years old and I was diagnosed with PA

in 1997, just 2 months after I was married. I have been having more

recent flare ups lately. I have a 3 year old son and the flare ups

really prevent me from spending quality time with him and my husband.

Does anyone suffer from fatigue? I find that I struggle to get out of

bed in the morning. I work full time, so I get up and get to work, but

I am drowsy all day long. At night, I come home, cook and clean up. I

don't do much else.

I am looking for someone else who might have similar symptoms.