Re: Tiredness.

[Guest guest]

Hi, Helen. has the same thing when he has a busy day. The next day

he sleeps in or (if it is a school day) he may take a nap when he gets

home, or goes to bed earlier. I never really like to limit him on the

chance that he might get tired. I figure if it happens, it happens. Of

course, he is older than Nick, but in my opinion letting him play and

have a fun day is worth the extra rest the next day. For he has

set himself up a " job " where he cleans the trucks (big rigs) and cars of

some of the guys where my husband parks his truck. He is very good at it

and they pay him well. He even has a price list for services! LOL but

when he does a couple on a Saturday I know that on Sunday he will sleep

in and be more low key all day. It is worth it to him for the enjoyment

he gets and of course the money! One must pay for car insurance somehow!

Hope Nick is less tired soon, Michele (16,pauci & spondy)

Tiredness.

Hi everyone..

I have a question... had a great day yesterday, it was a

nice spring day in Minnesota and after being coped up for the past 5

months you can imagine how excited the kids are to get out to run and

ride bikes.

Nick played hard yesterday.. all day... very hard. He was out like a

light as soon as his head hit the pillow last night. He slept 14

hours and got up looking soooo tired. He has huge black bags under

his eyes. I asked how he was feeling and he said tired. he lay on the

sofa watching cartoons for awhile, didnt want to eat and has now

headed back to lay on his bed playing a little gamecube.

I feel so bad for him... Fatigue was a big problem when he was

flaring. But hes being doing so much better.

Can i expect this everytime he plays hard??? Do I limit his play?? or

just let him play as much as he wants and then expect the next day to

be a " down day " Will it get better???

Thanks Hugs Helen and tired little Nick ( 6,systemic)

p.s his rheumy called yesterday and his labs are all looking good,

SED is 11, CRP 0.08 and his BUN has come down to 21 ( it was 29) she

wants to cut the pred by 1mg to 4mg a day for 2 weeks and if alls

well, then go down 1/2mg every 2 weeks. She wants him to stay on the

iron pills for a few more months and then hopefully we can stop those.

[Guest guest]

--Hi helen,

I know that the tiredness is definately a symptom of the disease, but

I also know that tiredness is also a side affect of the prednisone.

My son Bronson has always tired easily, even before he was diagnosed,

he napped daily until he was 6 yrs old and would still go to bed no

later than 8pm. When he got sick, there was definately a dramatic

increase in his tiredness, which slowly improved as he began meds and

was getting better, but like Nick, even when he felt great, after a

day of heavy playing, he would be exahusted, and at that time, his

doctor said it was most likely from the prednisone. Now, Bronson has

been off the pred since January and off all meds since Feb., except

for naproxen which we recently had to start him on again for some

pain issues he started having, but his energy is much improved, he

still gets really tired after a big day of playing, but it's not as

dramatic as it was when he was taking the pred. As far as you

limiting his play, I know I was always told by our doctor to let

Bronson be the judge of how hard he can or cannot push himself, that

he is the best person to determine what physical level is best for

him, and so that's what we have done. I hope you see an improvement

in Nick's energy soon, and I am so happy to hear that his labs were

good!

Jodi, Bronson, systemic, age 9

-

[Guest guest]

Helen,

At 26 I still get tired if I push myself to do too much and I am on

prednisone. It might take me a few days to have energy back to go to

the grocery store. I am currently in remission and yes do still get

tired

a

JRA & MCTD

[Guest guest]

e

your so right that fatigue gets melissa most times but at 16 she has gotten use to it to a point she knows if she wants to have a fun out day she will rest up a day or 2 before then shes ok and maybe hurt the next day we take the good with the bad

also i have noticed is

when she is fatigued her body is trying to repair its self you know like our moms use to say babies sleep longer so they can grow well in a way our kids body and the adults here are doing the same with the fatigue if your sick with a cold or anything you want to sleep this helps the body heal its self so i have come to my opinion this is why the fatigue is so bad on the kids not only are they growing they also need rest if you dont have the fatigue and continue going the body will get back at you but sending fatigue to you something in the body knows to put you down to rest

Robbin