Re: Sick and tired of feeling sick and tired?

[Guest guest]

The correct question would be:

" Is there anyone who isn't sick and tired of being sick and tired? "

CHSaun@...

[Guest guest]

Sharon, I think we all get sick and tired of being sick and tired.  It's part of

the ups and downs of having a chronic disease.  During the times we're tired, I

think it's also harder to deal with pain.  Find ways to lift your spirits and

yes, see your Dr.  Stress will contribute to feeling this way.  So since we're

in a new season, leave it all behind you and make some changes.  You'll feel

better before you know it. 

[Guest guest]

It's when we get sick and tired of being sick and tired that we get moving to

change things and good for you.  Don't just ask - tell your rheumy you need

something more and don't be afraid to try the biologics.  They have the

potential to work wonders.  It's just finding the right med for you.  Good luck

and be your own best advocate . . . . ..

 Joanna Hoelscher

[Guest guest]

Hi Sharon Sorry you're feeling so yucky, I was diagnosed the past

year with PsA I'm still I'm constant pain. Hope you get some relief

soon. It's a terrible disease.

Take care and God bless you

[Guest guest]

I know, I guess I've ridden along on my " doing pretty good for the shape I'm in "

mode for so long I forgot that " this too shall pass " .  It sure helps to know

that there are those here who understand that we just need to " vent " a little. 

Thanks for the encouragement!

 

Sharon

[Guest guest]

:  it's hard to keep everybody straight in this group so I don't remember

what med(s) you're on but if you are still in constant pain after a year, I'd

start asking about a change in your medication(s).  I was diagnosed a year ago

and was fortunate to start with Enbrel and it has done the job so well that I

feel just about back to normal. 

 Joanna Hoelscher

[Guest guest]

I saw my rheumy yesterday, she wanted to increase my MTX because I am

losing another finger joint. We talked awhile and decided to wait and

watch. I have scripts for the max pain med. She thinks that I should

take a dose that makes me comfy. I don't usually go down that road, I

need to know where the pain is worst so I can take care of that part

that is most inflamed. I wish all of us could find someone who

understands the suffering we are dealing with as my rhumey does.

take care,

JIM

[Guest guest]

Hang in there Sharon. I am right there with you. I come home from

work and go to bed. My house is a pit. If the ASPCA saw it they

would probably take my cats away. I have to start to work on cleaning

it up before my niece moves in after that she will be taking care of a

good portion of the house work in exchange for utilities. But I have

to get it livable first. I don't seem to have the energy to care

about much but my job, family, and my kitties. I have two and they

are my babies.

" tweetygodess " <tweetygodess@...>

[Guest guest]

Sharon,

I am so sorry you are so discouraged right now..I do know the feeling that you

are missing out on life..I was mad for a year after I was diagnosed because I

have suffered for so long and I already had damaged joints..that doctors took

lightly..I have had joint pain for 20 years and was diagnosed only 4 years

ago..I am so sorry you are going through this but know that there is a place you

can come where people really understand..I realize there are different ways to

cope with illness..but I trust God...I am not saying I hurt less or things get

all better but I cope better..You are welcomed to email me personally if you

would like to chat further about this..Do you have a supportive family? 

Friends?  People that can help you when you need to go at a slower pace?  I have

to pace myself..I have had to learn how to do that over the years..I am 44 now

and have learned alot of valuable lessons..I have also had periods in my life

when I needed to slow down but

couldn't but I have learned to ask for help..You are worth it!!  I hope this

helps you and encourages you..I will say a prayer for you today! 

Vickey

[Guest guest]

Hi

I haven't really said anything in this group but I have had PsA for over thirty

yrs...was on MTX 23 yrs.....got off of it after I got cancer...... which I have

had three times.....I am very grateful for MTX because I can still

walk....without it my feet would have lost all it's bone.....but  I am letting

my fingers go.....because I worry that the  MTX suppressed my immune system to

the degree that allowed the cancer to activate.......just my own

thoughts....what do others think?

charity

 

[Guest guest]

Thank you Jim!  I know what you mean about needing to know where it hurts worse!

I am only on Darvocet for pain and it works pretty good for me right now and by

the time it is time for another dose I can tell real well what is hurting worse!

LOL.

 

Sharon

[Guest guest]

Bless your heart tweety!  My daughter cleans my house for me and I don't know

what I'd do without her!  I don't have any pets inside and I guess its a good

thing though I'd love to have a little lap dog to keep my legs warms this

winter...not just for that purpose...I love dogs and cats but my husband hates

cats so a cat is out!

 

Sharon

[Guest guest]

Hi Charity,

You could have a point, but I'd need much more info to form an

opinion. As MTX is drug that is usually used in combating cancer.

So It seems that there is likely something that you and I are not

aware of.

Perhaps your being on MTX spared you more than hurt you?

I've come to realize that ALL worry is totally useless and has

positive effect ever. If there is something that you think " might "

cause you to worry, Than instead of spending energy and useless time

worrying, find out the TRUE answer.

If your suspicions are confirmed, you now have the answer and need

not worry anymore. If your suspicions are wrong, you need not worry

about something that is incorrect.

Stay Well,

[Guest guest]

Charity:  I don't think there are any clear-cut answers about immunosuppressants

and cancer.  We all know that the biologics carry warnings about certain kinds

of cancers, especially lymphoma.  However, I remember reading about some

research in Sweden indicating that people who have auto-immune disease are 

more susceptible to the development of lymphoma even if they don't take

immunosuppressants.  Virtually all cancer therapy (both radiation and chemo)

carry risks of developing a second cancer later in life and MTX is used to treat

cancer.  But for patients with PsA, it's my understanding that it's given at

much lower levels than it is for patients with cancer; so presumably that would

lessen its risk of causing cancer.  Plus, we are all more susceptible to

developing cancer as we age, regardless of anything else that's going on in our

bodies. 

 

The bottom line is that I don't think anybody can really answer your question. 

I worked for 20 years for an environmental advocacy organization that focused a

lot on the health effects of exposure to toxins in the environment, in ordinary

household products, in pesticides that remain in the food we eat, etc.  About

the only thing anybody can tell you definitively about exposure to any given

carcinogen agent is that we don't yet understand what mechanism in the body

causes one person to get the disease and the next person (exposed to the same

substance at the same levels) not to. 

 

You don't mention what kind of cancer you've had (if blood related, I think the

odds are probably slightly higher in terms of the potential for it to have been

caused by your treatment with immunosuppressants.)   After having a cancer that

reoccurred 3 times, it's certainly understandable that you would be very

cautious about continuing treatment; but then there's the quality of life

issue.  Remember that if you stop all treatment, it may be more than your

fingers at risk. 

 

My heart goes out to you - having cancer 3 times and PsA????   What a difficult

decision you may have to make.  Keep us posted on how you're doing and - in

particular - what your doctor has to say about all this.    

 Joanna Hoelscher

[Guest guest]

Hi Charity,

I agree with you about the MTX. I have been taking it for about 6 years and now

have a list

of ailments even my doctors have a problem keeping track of, from sleep apnea to

COPD.

Also the list of doctors are growing, a pulmonologist being the latest added to

that list. But,

as you mentioned, my feet work and my fingers and hands work most of the time.

I am at

least able to knit and crochet again. I really do agree, though. I am so sick

and tired of being

sick and tired. Nothing seems to work to restore the energy. If PA doesn't

steal it, the fibro

does. God bless.

Janet in Ca

[Guest guest]

My two cats are wonderful! When I'm hurting they curl up extra close. They

also provide companionship and entertainment too. One cat, Peppy (she isn't at

all) I have had since birth and she is 12 years old. She is my kindred spirit,

we both have creaky old bones! hahahaha! There have been medical studies done

that suggest that pets are good for your health, you should really consider that

little lap doggy.

Take care,

Deanna

[Guest guest]

I know Deanna!  I am trying to convince my husband that I need a little lap

doggie!

 

Sharon