Re: Is fatigue a symptom of PS?

[Guest guest]

Try checking out your iron levels. You may need an iron supplement.

judith_annky <judyinkyjc@...> wrote: I am having so much fatigue that I

can hardly sit here at the computer.

I have also had a bout with bronchitis also which may add to this

drained feeling. I have had fatigue for years but never associated it

too much with anything but trying to regain energy after several

surgeries I have had in the last 3 years including on on Dec.30, last

year.

I have PA but am not on any medication yet until a work up from a liver

specialist because I extremely high liver enzymes. I am so tired and

sad. I guess I sound like a baby but I so wish I had someone who could

understand what I am going through.

One thing I am grateful for today. I am not hurting. It seems like I

don't always get all the symptoms of PA all the time, I mean together.

I am requiring about 2/3 of the day to rest.

I would love to hear from someone on here. I really need encouragement

right now.

Thank you,

Judy gunnels

[Guest guest]

Hey Judy,

Fatigue is indeed one our symptoms. So is what I call " brain fog " , you know

those days when you just can't make your brain stay focused enough to read

or stay interested in a tv show. When I have one of my really tired days and

getting out of the chair to go to the rest-room is really a chore, I found

that having a few projects to work on or think about helps.

As an example, I started researching our family tree. If I can't stay with

the computer, I re-read some papers I printed from before because my memory

is bad. Also, I started sorting old pictures and making albums to give to my

children. Some days I only LOOK at the pictures. Other days I sit on the

patio and watch the birds. I always plant red flowers so I can watch the

hummingbirds. I also play computer card games to keep my brain active, whether

it

wants to be or not. I love solitaire but my hands won't let me handle the

cards anymore, so the computer is great. Also the little hand held games are

good to keep at hand.

Anything that interests you or takes your mind off the current problem is

not a bad thing. Of course, I spend a lot of time on the phone with my sister

also. She is my best listener. If you don't have someone, feel free to

write me anytime. _cameronparkmom@..._ (mailto:cameronparkmom@...)

Hang in there, you most defintely are not alone!!

Janet

[Guest guest]

Hi Judy

Yes, fatigue is part of this adventure. It takes extra energy for the

immune system to try to inflame an area and the body trying to heal it

- we only suffer when the balance is tipped in the direction of

inflammation - even when not in pain all this takes extra energy.

Last spring before my diagnosis I started having low energy problems

as well as slowly losing around 20 lbs over 3-4 months. In the 4rth

month my wrist got red and swollen, diagnosed with tenodynovitis,

unresponsive to Celebrex, and then given the dx of PA. Started

Plaquenil, and though the Plaquenil didn't help very much with the

pain, my energy level and weight came back to near normal after a few

weeks.

I'm now on my 4rth month of methotrexate and first dose of Enbrel

yesterday, and although I still hurt, I hurt less, my weight is back

to normal, and most days my energy level is ok - although I still need

to take a nap most afternoons.

I was very frustrated the first few months waiting for a medication to

work, it can be very hard to wait when in pain. Hopefully soon your

doc will find meds you can take to help you gain some comfort.

Sorry to hear that you are going through this, I think many of us can

empathize with you. Very glad you found us, you are in good company here.

Best regards -

[Guest guest]

Hi Judy,

You are not alone! I think all of us have had that kind of fatigue quite a

bit. Everyone's experience will be different but the fatigue pretty much seems

universal. Pain free days are something to celebrate though! Just don't over do

it. I tend to do that and pay for it for weeks, LOL. Talk to your doctors and

see if a good multi-vitamin would be alright for you if you aren't already on

one. I know liver enzime problems can be aggravated by anything you take, so

always check to see if any meds you might consider are okay.

And you don't sound like a baby! That is part of the reason groups like this

exist, to gain and give support. If you need to vent or just need a virtual

" hug " , most of us have pretty " big shoulders " and are always willing to listen.

We understand! Just give a shout when ever you need. My email is always open

also.

(((((Hugs and good cheer)))))),

Dalene

judith_annky <judyinkyjc@...> wrote:

I am having so much fatigue that I can hardly sit here at the computer.

I have also had a bout with bronchitis also which may add to this

drained feeling. I have had fatigue for years but never associated it

too much with anything but trying to regain energy after several

surgeries I have had in the last 3 years including on on Dec.30, last

year.

I have PA but am not on any medication yet until a work up from a liver

specialist because I extremely high liver enzymes. I am so tired and

sad. I guess I sound like a baby but I so wish I had someone who could

understand what I am going through.

One thing I am grateful for today. I am not hurting. It seems like I

don't always get all the symptoms of PA all the time, I mean together.

I am requiring about 2/3 of the day to rest.

I would love to hear from someone on here. I really need encouragement

right now.

Thank you,

Judy gunnels

[Guest guest]

GROUP HUG!!!!

cathy from ma

[Guest guest]

Yes david ... I agree we are good company ..Aren:t we !!! cathy from ma.

[Guest guest]

Janet,

Thank you so much for the helpful advice. I do like a few games on the

computer. especially like slingo and spider solitare. I want to do so much but

seem to be drained all the time. I just don't feel up to cleaning, cooking

etc.

and it makes me fee useless at times. I just have to believe that things WILL

GET BETTE. i used to have such nice skin. If it goes to my scalp and face I

dont know what I will do. I guess I will cross that bridge when I come to

it.

I didn't sleep at all through last from itching. I was too tired or lazy

one to get to the shower and use the soap for my skin and them go through the

ritual of putting on all the topical stuff. I find that Sarna cream is the

best itching medicine and of course I ran out last night.

I got some of that new bath oil gel and put it on while my body was still

wet.

I cannot believe how bad the p has gotten the last few months. I would say

it has tripled. I'm still waiting on the darn blood work from the liver

specialist, had the ultra sound yesterday and will have the liver biopsy and

will

then finally be able to start something like enbrel.

How are you doing? Sorry I'm whining. I just need an ear to hear me that

understands. arthritis is better since I got back on my regular dosage of

celebrex. It is amazing what that stuff does. I just don't understand why my

skin is so terrible. I have been doing some reading and I " m not doing all I

could be doing so will try to get to the sun tan booth to get some light and

keep myself really moisturized really good.

My mother had p. It started up in her 40's and she used to have to go to

Nashville to get treatments.. light treatments. Hers was terrible, face,

scalp,

ears, neck. She looked like an indian. I cann't help ut belive that she get

it from stress.. There we a lot of stressful things going on at that time in

her life.

So I was predisposed and more likely to get it. My oldest daugher age 35 has

had it most of her life but only mild.

Well,

I will close. Thanks again for writing. and for me the invite for me to

write you. Maybe sometime we can talk on the phone.

Here's hoping you have a painless day.

Judy gunnels

..

502 231-1426

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[Guest guest]

In a message dated 29/03/2006 12:13:50 GMT Daylight Time, judyinkyjc@...

writes:

I am having so much fatigue that I can hardly sit here at the computer.

Hi Judy,

Are you feeling any better in the two weeks since you sent this? I hope

things have improved for you. I think its hard for people to understand about

the

fatigue when they are on the outside of this disease. Most of us can identify

with what you are saying though Judy.

I hope things are a bit better for you just now.

Take care,

[Guest guest]

Hello ,

Yes, I am feeling better although I had a flair with the A this weekend. It

was probably the worst I HAD. MD prescribed a medicine a few weeks ago but

when I took ir, I had so many GI side affects what I stopping taking it.

I started it back up Saturday night, and that I ate and did exactly as

specified on the prescription.. I definitely think the celebrex has stopped

working for me, I got easy but before that I iced up..ankles, shoulder, hands,

fingers.. in horrific pain.

I could barely moved the finger on my right hand. They were so inflamed AND

SORE.

wELL, YOU ASKED..LOL don't ever ask unless you want to listen to a list of

aliments. LOL

...I hope you are doing well and had a glorious weekend. I spent some times

with my children/grandchildren yesterday at a big..Easter East Egg Hunt....

with lots of things for little ones to jump, slide and play on and a huge hunt

after that. I enjoyed it, but the heat was bad and I got extremely exhausted.

I told them that it was better that I stayed in today to recoup from the

flare I had yesterday. They were all understanding and had things to do with

their children. A few years ago I would have insisted everyone be here for

Eater Dinner and all the trimmings..I sure have changed, and so have my

priorities and limitations.. I am taking care of ME.first.

Thanks for writing.

Judy in KY

Judy in KY

_Happy Easter! A web v ersion of the story of Christ's resurrection._

(http://smatterings.topcities.com/easter.html)

[Guest guest]

To answer your question.. I am feeling less fatigue; I have had to rest and

less stress in my life.

Judy in KY

_Happy Easter! A web v ersion of the story of Christ's resurrection._

(http://smatterings.topcities.com/easter.html)

[Guest guest]

In a message dated 17/04/2006 12:46:02 GMT Daylight Time, judyinkyjc@...

writes:

Yes, I am feeling better although I had a flair with the A this weekend. It

was probably the worst I HAD. MD prescribed a medicine a few weeks ago but

when I took ir, I had so many GI side affects what I stopping taking it.

I started it back up Saturday night, and that I ate and did exactly as

specified on the prescription.. I definitely think the celebrex has stopped

working for me, I got easy but before that I iced up..ankles, shoulder,

hands,

fingers.. in horrific pain.

I could barely moved the finger on my right hand. They were so inflamed AND

SORE.

wELL, YOU ASKED..LOL don't ever ask unless you want to listen to a list of

aliments. LOL

Hi Judy,

Sorry that it has taken so long for me to reply. I am really struggling to

keep up with the mail just now. Ach what am I worrying

for.....................it was only just over five weeks ago you sent this. lol

I was laughing at what you said above. I always liken myself to the old

joke..........'Don't ask him how he is........................He will tell you

the

truth! lol I hope things have improved for you since you sent this

mail.........................but don't worry about telling me if they haven't.

lol

Seriously though, I hope you are well.

Take care,