Re: fatigue?

[Guest guest]

I don't know if it is related, but my Rebekah had major fatigue!!! It

stopped after we raised her dose and after she had been infused for a year.

When we started treatment, she was only out of bed for 1-2 hours day. The

rest of the time was spent lying down or asleep.

Pam

mom to 4

[Guest guest]

>You brought tears to my eyes. I am all these things! Plus I can't do

>anything

>right anymore. Can't think straight. Mess everything I touch up, lose

>everything. I feel very overwhelmed.

>I am already on Celexa. It has always helped. But not since all this with

>Brittany I guess. Maybe I need the dose raised.

I have definitely felt this way since Conner was diagnosed in June. I broke

down and cried in front of our pulmonologist and his residents, I felt so

stupid! I am so overwhelmed and I worry that I won't do something right and

Conner will end up hospitalized again... or worse. I almost feel like I'm

preparing myself that I will eventually lose him, it's like I'm grieving for

him and he's still here! I'm hoping that once he begins treatment and we

fall into a routine I will become more comfortable with this disorder. My

kids have faced ongoing challenges since birth, but I've never felt as much

despair as I do now. I have considered that I might need meds, but I keep

thinking that I will eventually be able to cope with this.

By the way, thank you for all of the responses to my original question!

Mom to Conner (10, Asperger's, mild CP, partial seizures, asthma, GERD, and

CVID),

Hayden (10, PDD-NOS, IBS and moderate hearing loss/aided),

Evan (10, mild hearing loss/unaided),

and Kelsey - surviving triplet (8, hearing - but not listening!)

_________________________________________________________________

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[Guest guest]

........

> virtually no energy to do anything and has been this way since he was

> hospitalized in April. He hasn't really been sick since then.

Hi ,

FWIW, my daughter's energy level is up very significantly since she

started monthly IVIG last October.

I remember very well 2 winters ago, when it had snowed on a school

day, and my two younger sons came home from school and raced into

their snow gear to go out to play, and my daughter looked out the

window and said " HOOOOOWWWWW do they have the energy to do that after

all day at school " . Broke my heart!

Hang in there. Maybe the IVIG will do the trick. Certainly been an

absolute miracle here.

Sandy

Mom to Riley, age 13, selective antibody deficiency, asthma, IVIG

[Guest guest]

When our son was diagnosed with XLA, our immunologist actually told us

that we probably did not really know the personality of our child since he

had basically been sick his whole life. I thought the doctor was nuts. Of

course we knew our son's personility, he was almost 6 years old!! Boy were

we wrong. We thought that was just a very laid back kind of kiddo.

WRONG!!! He has so much more energy now than before. We do definitely

notice a difference in the energy levels as we get to about 3 weeks after

IGIV. (He is on a 4 week rotation.) But it is so nice to have him seem

" healthy " most of the time. IGIV has worked miracles for us!!

Janet

mom to , age 7, XLA

(also mom to many others)

>From: " treadinwater_2000 " <sskapik@...>

>Reply-

>

>Subject: Re: Fatigue?

>Date: Sat, 07 Aug 2004 01:47:41 -0000

>

>

>.......

> > virtually no energy to do anything and has been this way since he was

> > hospitalized in April. He hasn't really been sick since then.

>

>

>Hi ,

>

>FWIW, my daughter's energy level is up very significantly since she

>started monthly IVIG last October.

>

>I remember very well 2 winters ago, when it had snowed on a school

>day, and my two younger sons came home from school and raced into

>their snow gear to go out to play, and my daughter looked out the

>window and said " HOOOOOWWWWW do they have the energy to do that after

>all day at school " . Broke my heart!

>

>Hang in there. Maybe the IVIG will do the trick. Certainly been an

>absolute miracle here.

>

>Sandy

>Mom to Riley, age 13, selective antibody deficiency, asthma, IVIG

>

>

>

>

>This forum is open to parents and caregivers of children diagnosed with a

>Primary Immune Deficiency. Opinions or medical advice stated here are the

>sole responsibility of the poster and should not be taken as professional

>advice.

>

>To unsubscribe -unsubscribegroups (DOT)

>To search group archives go to:

>/messages

>

[Guest guest]

Hi,

I don't participate often, but I do try to keep up reading postings. I do

believe the fatigue is common. My 8 year old son with CVID just said to me this

week, " Mom, I'm tired. Why am I so tired all the time. " (He has been on IVIG

for 3 years). It just broke my heart. He is actually, quite active and is on

ritalin for ADHD as well, but he has been verbalizing his fatigue more often

lately. When I looked at the calender, bingo - he is due for his treatment

Monday. I wonder if the ritalin helps counter the fatigue? I also wonder if

the increase in fatigue could mean he is ready for an increase in his dose.

As for those of you struggling with your new diagnosis and all the challenges

that go along with it, hang in there. I remember my nightmare well. Phone

calls saying they thought he had lymphoma, go see an oncologist; then they sent

me for an HIV test, then they told me he had SCID (boy in the bubble). All the

testing, all the WAITING. I was on the verge of a nervous breakdown, started

smoking and then throw 9/11 and anthrax scares right smack in the middle of it

all, I was a mess. I thought for sure he was going to die. That was 3 years

ago. Now, we get IVIG at home with a visiting nurse (What a Blessing!!) , and

all of a sudden, 4 weeks have gone by and i realize, ooh, Chris' treatment is

next week. I don't live it and breath it everyday anymore. I try to deal with

the cards I have been dealt the best I can, but I still have down days.

I think the hardest thing in the world is to deal with things like this that

affect our children. We just want to take all the pain away and are willing to

take it on ourselves. It can leave us feeling very helpless. But children are

so much stronger than us. (Mine is, anyway.) They can take things in their

stride and still carry on being kids. Its a beautiful thing! To those of your

struggling, Hang in there! Your not alone!

Kim - Mom to - 8 , CVID & ADHD

Fatigue?

> I was wondering if fatigue is a common issue with CVID? My son

> Conner has

> virtually no energy to do anything and has been this way since he

> was

> hospitalized in April. He hasn't really been sick since then.

> He's on

> prophylactic antibiotics and he is scheduled to start IVIG next

> month. He

> lies on the couch or just plays quietly in his room most of the

> day. His

> siblings are usually outside playing in the pool or riding bikes.

> I can get

> him to go outside with a lot of prodding, but he just seems

> exhausted all

> the time. He even complains about being tired alot, normally he

> doesn't

> complain about anything. I asked one of our docs and he said that

> it

> shouldn't be related. He said we could test him for the EBV, but

> it

> wouldn't change anything. If anyone can relate, please let me

> know,

> otherwise I'm thinking maybe we should start investigating things

> a bit

> further.

>

>

>

> Mom to Conner (10, Asperger's, mild CP, partial seizures, asthma,

> GERD, and

> CVID),

> Hayden (10, PDD-NOS, IBS and moderate hearing loss/aided),

> Evan (10, mild hearing loss/unaided),

> and Kelsey - surviving triplet (8, hearing - but not listening!)

>

> _________________________________________________________________

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> http://search.msn.click-url.com/go/onm00200636ave/direct/01/

>

>

>

>

[Guest guest]

Ashton is finally starting to get stronger. The neighbors have commented on

her playing more and racing the other kids. She used to sit a lot or come

inside to rest. She continued to play soccer, but the day after she would sleep

a

lot. She wanted to be " normal " so badly. We didn't know what was wrong then.

Now that she is doing the IVIG, she has more energy. Her teacher called me in

the end of the school year. She wanted to talk to me about the changes she was

seeing in Ashton. She was concerned because she was much more vocal, active,

etc.. She is going to have to learn to control herself in the classroom now. I

am thankful! Prior to IVIG she was so quiet, calm (lethargic), etc..

I am looking forward to this school year. I am praying the IVIG lets her have

a healthier year.

I am battling depression myself. I am a nervous wreck. I pray and try to be

thankful for the good times. My skin is broken out, I have a major case of

eczema, along with the rosacea. I pray the IVIG will really kick in and keep

helping her on the upswing. I am dreading the start of school. All those

GERMS!!!!!

L.

[Guest guest]

In a message dated 8/7/2004 11:31:37 AM Eastern Daylight Time,

Nanashmar@... writes:

I am battling depression myself. I am a nervous wreck. I pray and try to be

thankful for the good times. My skin is broken out, I have a major case of

eczema, along with the rosacea. I pray the IVIG will really kick in and keep

helping her on the upswing. I am dreading the start of school. All those

GERMS!!!!!

, this could be me talking!!!!!!!! You described me to a T:)

Now, I hope Britt's IVIG will kick in and give her the energy that Ashton has.

Janet, mom to Brittany, CVID, age 13

[Guest guest]

Hi Jane,

 

Yes, I have noticed that too.  But for me, it started back in January or so. 

Good days, bad days like everyone but lots of fatigue. 

Sheryl

in sunny, dry New Mexico

From: jane <janeatregis@...>

Subject: [ ] fatigue?

Date: Wednesday, July 7, 2010, 1:39 PM

 

Good afternoon, RA family! Have yall been noticing that your fatigue level is

worse than normal this summer (whatever normal is for us)? I've gone through a

serious illness due to a reaction to a diabetes injectable (Victoza) and am just

now starting to feel somewhat human again. I don't know if I should attribute

the crushing fatigue to the reaction, or the RA. It has been a truly horrible

summer,illness-wise. I would cheerfully leave work right now, go home,and crawl

directly into my nice cool bed, leaving everything undone that needs doing.

Unfortunately, they just don't want to pay me for that!

Blessings to all.

Jane in yucky humid Dallas

[Guest guest]

>

> Good afternoon, RA family! Have yall been noticing that your fatigue level is

worse than normal this summer (whatever normal is for us)?

yes. I'm trying to recover from what would normally have just been a stoopid

cold, except that it was a cold that turned into bronchitis. Then on top of that

I had a migraine headache. In days past (before RA), if I had a cold, I just

blew my nose for 3 day and was fine. If I had a migraine, I just toughed it out.

But the combination of cold/migraine/RA has stopped me in my tracks. It is so

irritating, because a cold and a migraine headache are so stinking

*insignificant*!!! You can't call into work and say " I can't come in all the

rest of this week because I have a cold " . And especially can't top that off with

" now I really can't come in, because my head aches!! " The bosses just won't buy

either as an excuse.

J.

[Guest guest]

I certainly wouldn't call a migraine " insignificant. " Before I

retired, I did sometimes go in to work with a migraine if it was

relatively mild, but for some of the ones I got, I had to call in sick.

Sue

On Jul 7, 2010, at 2:48 PM, oogiejonz wrote:

> yes. I'm trying to recover from what would normally have just been a

> stoopid cold, except that it was a cold that turned into bronchitis.

> Then on top of that I had a migraine headache. In days past (before

> RA), if I had a cold, I just blew my nose for 3 day and was fine. If

> I had a migraine, I just toughed it out. But the combination of cold/

> migraine/RA has stopped me in my tracks. It is so irritating,

> because a cold and a migraine headache are so stinking

> *insignificant*!!! You can't call into work and say " I can't come in

> all the rest of this week because I have a cold " . And especially

> can't top that off with " now I really can't come in, because my head

> aches!! " The bosses just won't buy either as an excuse.

[Guest guest]

>

> I certainly wouldn't call a migraine " insignificant. " Before I

> retired, I did sometimes go in to work with a migraine if it was

> relatively mild, but for some of the ones I got, I had to call in sick.

We don't, but people who have never had migraines will say " it's just a

headache, what is the big deal? " They don't understand what an ordeal they can

be. Like when you say " I have rheumatoid athritis " , and they say " oh yeah, I

have arthritis too! In my knee from an old football injury. "

J.

[Guest guest]

yes....i also havr had this crushing fatigue (good choice of words there lady!_.

It was so overwhelming, i found myself nodding at work, atmy desk unable to snap

out of it. I told my doc, she put me on something clled nuvigil which works

pretty good i find it works well, ask your doc about it. cary it in my purse.

last few days its been 100 and over in NYC, pretty unbareable with alot of power

outages too. I flared for 2 days and had to take more prednisone, my back bones

were on fire.

OKD

[Guest guest]

My friends and coworkers have affectionately nicknamed me " grandma " because

despite being 30 I can't do without my naps- sometimes 2 a day.

I've had days I've had to leave work early and barely made the drive home before

I crashed. Before I found this group I honestly didn't know what was causing it.

I didn't know RA/lupus could fo that!

I guess my best friend put it perfectly the other day when I complained about

how doggone tired I was " Of course you are! Your body is constantly at war WITH

ITSELF! "

Candace

Sent from my iPhone

On Jul 7, 2010, at 1:39 PM, " jane " <janeatregis@...> wrote:

Good afternoon, RA family! Have yall been noticing that your fatigue level is

worse than normal this summer (whatever normal is for us)? I've gone through a

serious illness due to a reaction to a diabetes injectable (Victoza) and am just

now starting to feel somewhat human again. I don't know if I should attribute

the crushing fatigue to the reaction, or the RA. It has been a truly horrible

summer,illness-wise. I would cheerfully leave work right now, go home,and crawl

directly into my nice cool bed, leaving everything undone that needs doing.

Unfortunately, they just don't want to pay me for that!

Blessings to all.

Jane in yucky humid Dallas

[Guest guest]

Hi Candace.  I so agree with you and what your friend said.  She is a true

friend who see's what so many don't.   I find being tired awful and llike you,

I nap each day.  I don't feel guilty anymore.

I realy listen to my body.

I hope resting helps ease your tiredness.

 

Hugs,

Barbara

Good afternoon, RA family! Have yall been noticing that your fatigue level is

worse than normal this summer (whatever normal is for us)? I've gone through a

serious illness due to a reaction to a diabetes injectable (Victoza) and am just

now starting to feel somewhat human again. I don't know if I should attribute

the crushing fatigue to the reaction, or the RA. It has been a truly horrible

summer,illness-wise. I would cheerfully leave work right now, go home,and crawl

directly into my nice cool bed, leaving everything undone that needs doing.

Unfortunately, they just don't want to pay me for that!

Blessings to all.

Jane in yucky humid Dallas

[Guest guest]

I'm a reader never really post anything but this topic is my biggest problem and

luckilly my boss turned me on to the group! I have to say to Candace how lucky

she is to have a friend that gets it! Not one person besides docs literally get

it especially that our bodies are attacking and at war with itself every day. On

going into work I have been very fortunate to have a boss that allows me to work

from home, I never thought I would say I just want to work 9-5 in the office

like a normal person! The last time I went into the office my knee grew to the

size of a cantelope right in front of my bosses eyes. I was sent home

immediately and cried the entire way home in pain.

Now to Jane in Dallas I'm in Houston and was contemplating moving to Dallas. I

did live there in high school and when I got out of the military, I can't

imagine it being as humid and yucky as Houston. Mother nature runs my life here

and its just horrible place to live with RA & Fibro. I literally want to go on a

trip and stop in every State to see where I feel the best!

Thanks to all of you for the support without even knowing it, just reading post

and hearing all that I go through is also felt accross the world has been such a

tremendous help! I would like to also share 2 things that are life savers for me

and hope can bring some releif to all of you as well!

1. Epson Salt baths or just soaking your hands and feet in a tub with Epson and

warm water. Amen to water feels so great!

2. Theracane is a can that helps me with all the knotts that took over my kneck

and shoulders. My Physical Therapist had one and it was a treat after each

session. You can go to theracane..com or Amazon sales them as well. Mine goes

everywhere with me and even has a name !

I want to say thanks again to everyone and RA Support Group is on my prayer list

and I pray that everyone finds comfort and gets some quality of life. God Bless

all of you!

Skyleigh- Taking it one day at a tme :-)

Skyleigh Heinen

[Guest guest]

My naps are rarely that solid and restful. I always have an alert ear since im a

single mom of a rowdy 7 year old!

It is nice having 1 person around who understands. She lived with me for a while

when I was seeing dr after dr and she drove me to the ER numerous times.

I think it really clicked when a Dr prescribed me adderall to help me function

before anyone had pinpointed what was wrong. I took a 30mg pill when my alarm

went off and fell back asleep for 6 more hours.

My best friend cried, she thought I was gonna die because that SHOULD be

physically impossible.

No one else gets it. Why can't you go on the bike ride? Why don't you want to go

water skiing? Why don't you take your son to the zoo?

I'm getting tired of REPEATEDLY explaining I can't. And why. To the same

people!!!!!!!! I'm too tired. I'm too tired. I'm too tired.

~throws hands up in frustration~

Candace

Sent from my iPhone

On Jul 8, 2010, at 1:22 PM, Barbara Creedon <bcreedon@...> wrote:

Hi Candace. I so agree with you and what your friend said. She is a true

friend who see's what so many don't. I find being tired awful and llike you, I

nap each day. I don't feel guilty anymore.

I realy listen to my body.

I hope resting helps ease your tiredness.

Hugs,

Barbara

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..

[Guest guest]

>

> My naps are rarely that solid and restful. I always have an alert ear since im

a single mom of a rowdy 7 year old!

I have an 8 yr old and 4 yr old, and the only time that I actually sleep really

well is if I take a day off, take the kids to daycare/school, and then go home

and sleep! For some reason I sleep a lot better in the daytime than at night. I

think back to my pre-kid days when I could take afternoon naps every weekend and

think ahh, that was the life.

J.

[Guest guest]

I wonder if that's an RA thing. I'm seeing more and more people mention not

sleeping well at night...

Candace

Sent from my iPhone

On Jul 9, 2010, at 10:03 AM, " oogiejonz " <bajones@...> wrote:

>

> My naps are rarely that solid and restful. I always have an alert ear since im

a single mom of a rowdy 7 year old!

I have an 8 yr old and 4 yr old, and the only time that I actually sleep really

well is if I take a day off, take the kids to daycare/school, and then go home

and sleep! For some reason I sleep a lot better in the daytime than at night. I

think back to my pre-kid days when I could take afternoon naps every weekend and

think ahh, that was the life.

J.

[Guest guest]

> >

> > Good afternoon, RA family! Have yall been noticing that your fatigue level

is worse than normal this summer (whatever normal is for us)?

>

> yes. I'm trying to recover from what would normally have just been a stoopid

cold, except that it was a cold that turned into bronchitis. Then on top of that

I had a migraine headache. In days past (before RA), if I had a cold, I just

blew my nose for 3 day and was fine. If I had a migraine, I just toughed it out.

But the combination of cold/migraine/RA has stopped me in my tracks. It is so

irritating, because a cold and a migraine headache are so stinking

*insignificant*!!! You can't call into work and say " I can't come in all the

rest of this week because I have a cold " . And especially can't top that off with

" now I really can't come in, because my head aches!! " The bosses just won't buy

either as an excuse.

>

> J.

>