fatigue

[Guest guest]

Hi Billie Jo,

Fatigue can be one of the first signs of a flare coming on as well as

the Pale skin. March is one of those fatigued months for .

Falling asleep while it is eventful around her. When she should be

doing something she was just saying I got to lay down or just sit down. She has

had more days in bed than out. She says her energy is zapped. Seems her

body needs to rest alot. Hot baths was another thing she would get up for and

go back to bed.

I also noticed her skin was rashing again and pale. During these times

she may feel extremely hot or extremely cold. It is about like the body is

in a whirlwind.

So far we have learned the pattern of a flare. Some flares go easy and

some with her have gone full blown. Just crossing my fingers this spring

she will pull out of this flare. Signs of a flare can come with or without

the severe pain.

was tested by Endo due to her Fatigue and also a Sleep Dr. She

was diagnosed with the Fatigue Syndrome related to the JA and was also

studied by the sleep Dr and was diagnosed with Sleep Apnea which is inherited or

related to JA. Those 2 Drs explained that JA flare can flare up the whole

body. Told her that she needed to listen to her body when it is Fatigued as

it is the way the body repairs itself. Rest is one way to help lessen the

impact of a flare.

She has told me that she wished she could take a pill to give her the

energy back she use to have. She was tested also through labs to see if

anything was going on. Low iron can cause this also but all labs came back

normal. Even with her low blood sugar this can cause this too but we keep that

monitored.

Together time is good though when is laying in bed she will be

checking her web sites and come across funny things and she hollers Ma come

here you gotta see this. Making her laugh is wheat I try to do and just

listen to her. I think with all the years she has dealt with this disease We

have been there for each other. This even though a dreaded disease we have a

special bond between us and that will never change.

I do not like this disease no more than any Mom having to see their

child struggle each day. We have learned to take it one day at a time and when

it gets tough we try and smile through it.

is 22 and is grown but she always leans on me when she needs

me. I take her load and carry it awhile and when I need her she returns the

favor. lololol. Look on the web for Foot Prints in The Sand.......

Those words sure can make you see a different light

Robbin

[Guest guest]

Sounds like as well...there are some days he comes home from school/after

care and falls asleep. We're talking home at 5:30, asleep by 6...not even eating

dinner. He is in general a very pale child so it's hard to tell when he's more

pale.

I did talk to the rheumy about his fatigue in November and he mentioned that

even though his bloodwork didn't show anything, the naproxen could possibily be

causing a small stomach bleed. We did stop the naproxen in November since the

enbrel/mtx/folic acid combo appreared to be controlling his disease. However he

still gets fatigued and does not have the endurance I think he should have.

Fir example two weeks ago we went to the beach for a few hours...he had a great

time, was very active...chased seagulls, was jumping off this 5 foot erosion

created sand ledge etc. Sunday he was exhaused and asked for some naproxen. My

daughter, who was even more active at the beach was fine.

Right now is growing, growing, growing and I have noticed he is much more

tired than normal as well. While this catch up growth is needed, he is much more

affected by it than his sister is.

It's so tough on them...and us mommies too.

& , 6, poly (04/09) plus a bunch of other 'stuff'

Sent from my iPhone

[Guest guest]

finds that the change of the seasons makes things worse for him. His

allergies, asthma and arthritis all seem to act up and he gets quite exhausted.

You can find him taking a nap on the weekends and also coming straight home from

work and going to sleep (he works 1 - 9p.m.) at this time of the year and again

in the fall.

We often see him with dark circles and pale skin too. Hope a is doing better

soon, Michele ( 22, spondy)

________________________________

From: [mailto: ] On Behalf Of

Billie-jo Jary

Sent: Saturday, March 27, 2010 7:52 AM

*JRA List

Subject: Fatigue

Hello all! So far this year has been full of flares for a. March started off

good for her, but this last week she has been exhausted! She said she's " a

little achy, but not bad " , but she's actually falling asleep on the couch at

8:00 every night. Last night we had company and we were all playing games in the

basement. a just wanted to sit on the couch and watch. It was very loud...

her sister was very wound up, and a fell asleep! This is very unlike her. It

seems that her fatigue is getting worse. Our Rheumy sent us to an

endocrinologist because of the extreme fatigue, but the endo said she thinks

it's all JIA related... although we have not received all of her bloodwork back

(it's all repeat bloodwork). I know there is nothing " normal " about this

disease, but are your kidos this tired during a flare? Also, noone other than

close family notices, but when she is flaring she gets very pale... it's usually

my first sign.

Thanks again for all your support! This list helps keep me sane!!

Billie-jo and a (12 poly)

[Guest guest]

I find this to be a huge part of my life as well. from the time I was very young

with JA until now. Weather changing seems to be a huge culprit. I have always

said March/ April and September/ october are my worst times of the year. Along

with mild flares I tend to face alot of fatigue and need 10 minute cat naps to

get through my days. But sometimes those cat naps are rare and hard to find but

oh so worth it!

hang tight!

Donna

[Guest guest]

I don't know where the person concerned lives - I've sent Dr Hertoghe's contact address in case they're in Europe (they're on our RA-ldn group.MargaretFrom: zahavi <zahavi100@...>low dose naltrexone Sent: Sun, April 4, 2010 8:47:58 PMSubject: [low dose naltrexone]

Fatigue

i know also a french doctor who does the same and lives in the netherlands.

some patients he treats in paris.if he has interest let me know then i can give you his e-mail

[Guest guest]

How about Vit D...I had some significant relief with fatigue once my D levels were optimized. I've been taking 5K of D3 daily for over 3 yrs now. joyce

Oh and also thyroid function. So many are not on the right thyroid med or the right dose for their thyroid function.

[low dose naltrexone] Fatigue

Can anyone explain why a man (67 years) on LDN for 6 months for RA and has pain relief, is still badly fatigued. He's been checked for Lyme. Someone's suggested heavy metals could be checked. The doctor prescribing the LDN knows little about it.Thanks for any help.Margaret

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.800 / Virus Database: 271.1.1/2790 - Release Date: 04/04/10 06:31:00

[Guest guest]

Thanks Joyce.They're waiting for the results of Vit D3 tests. I'll pass the question about the thyroid.MargaretFrom: JOYCE MARTINO <jam2006@...>low dose naltrexone ; Margaret Schooling <mschooling@...>Sent: Sun, April 4, 2010 8:58:58 PMSubject: Re:

[low dose naltrexone] Fatigue

How about Vit D...I had some significant relief with fatigue once my D levels were optimized. I've been taking 5K of D3 daily for over 3 yrs now. joyce

Oh and also thyroid function. So many are not on the right thyroid med or the right dose for their thyroid function.

[low dose naltrexone] Fatigue

Can anyone explain why a man (67 years) on LDN for 6 months for RA and has pain relief, is still badly fatigued. He's been checked for Lyme. Someone's suggested heavy metals could be checked. The doctor prescribing the LDN knows little about it.Thanks for any help.Margaret

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.800 / Virus Database: 271.1.1/2790 - Release Date: 04/04/10 06:31:00

[Guest guest]

NONE of the Lyme tests are accurate !! Especially the standard test used by our

physicians. After my optic neuritis, I had my family doc test me for Lyme

disease. The test indicated I did not have Lyme. Mentally and emotionally,

this freed me to pursue an MS diagnosis.

I was able to hire a MS clinical trial doc for my first diagnosis. assumed that

if I did not have MS, he would say so and sent me on my way. Well, I got an MS

diagnosis and started Rebif. My first neurologist would not prescribe LDN.

Eventually I hired a holistic doc for my LDN script.

Out of all of the MS drugs I took (Rebif, Copaxone, LDN, and EAP) my LDN was the

kindest one, yet I was still losing strength.

with my holistic physician, I was tested for heavy metals with a DMPS challenge.

The DMPS challenge indicated many metals in me, which drove another four (4)

DMPS IVs to clean out the metals. My intravenous chelation did not provide

noticeable benefit to my health.

A CRITICAL part of the Lyme diagnosis is the selection of a Lyme Literate

Medical Doctor (LLMD). It took me four (4) months to find and hire my LLMD.

Once I hired him, it was a three month wait for my first appointment.

My Lyme diagnosis was a clinical diagnosis based on history, failure of multiple

MS drugs, a physical exam. The diagnosis was confirmed by my herxheimer

reaction to doxycycline.

This Vimeo link has a news Expose' on Lyme disease and highlights a gal that has

a nearly exactly the same story I do of transitioning from MS to Lyme. The Vimeo

link also has a good presentation on LDN.

http://vimeo.com/2354218

>

> Can anyone explain why a man (67 years) on LDN for 6 months for RA and has

pain relief, is still badly fatigued. He's been checked for Lyme. Someone's

suggested heavy metals could be checked. The doctor prescribing the LDN knows

little about it.

> Thanks for any help.

> Margaret

>

[Guest guest]

Hi All,

To anyone who will answer. I have found that my daughter seems tired all the

time. It has gone on for a year and a half now. It is so hard to wake her up for

school in the morning. She seems to be good in the afternoon, but when I get hr

up for school she looks as though she has been up all night. Her eyes look weak

and she can fall asleep on the toilet. The school is harassing me about her

missing and being tardy. I don't know what to do about it.

>

>

> I find this to be a huge part of my life as well. from the time I was very

young with JA until now. Weather changing seems to be a huge culprit. I have

always said March/ April and September/ october are my worst times of the year.

Along with mild flares I tend to face alot of fatigue and need 10 minute cat

naps to get through my days. But sometimes those cat naps are rare and hard to

find but oh so worth it!

> hang tight!

> Donna

>

>

>

>

>

>

[Guest guest]

Poor kid! We've dealt with extreme fatique issues as well. Our rhuemy checked

for thyroid issues and I've read several kids are dealing with Vitamin D

deficiencies. We've been told several of the meds can cause fatigue. We've

also had Kat involved in theraputic activities to build endurance. I'd make

sure she's tested for everything and then look for ways to help manage the

exhaustion. As for school, if you haven't already set up a 504 plan, it sounds

like now is the time. Good luck!

Kirsten

mom to , age 6, spondy

> >

> >

> > I find this to be a huge part of my life as well. from the time I was very

young with JA until now. Weather changing seems to be a huge culprit. I have

always said March/ April and September/ october are my worst times of the year.

Along with mild flares I tend to face alot of fatigue and need 10 minute cat

naps to get through my days. But sometimes those cat naps are rare and hard to

find but oh so worth it!

> > hang tight!

> > Donna

> >

> >

> >

> >

> >

> >

[Guest guest]

Well- personally I have fought with the school system, and realized that Isabel

would never fit into their mold because of the fatigue and missed school for all

the things we have to go to for her health.

In addition, it is still hard for her to speak up and say to her teachers that

she is just too tired. So she doesn't and is the silent one in the corner not

getting what she needs because she does not want to draw attention to herself.

Well, then she zones out, and she misses what was taught and then she is behind-

ALWAYS! So we do hours of homework after the hours of work that they were to be

doing at school. She would come home so tired and crying and a being a bear,

that something had to change-and fast!

So, after trying to deal with JRA and the school, and them not willing to do

anything for her in the way of a 504 or IEP because she was not failing (which

by the way, failing at the school system is 25% or less), I decided to home

school her and truly meet her needs.

She is going to have it bad enough when her body will not work right for her, I

could not put her future of her mind in a school system that was allowing her to

be functionally illiterate.

Widdis, Isabel 10- poly, uveitis, TMJ, possible ADHD (that is a new dx)

[Guest guest]

Thanks Kirsten,

She has hypothyroidism and her ped said that as long as her meds are correct she

shouldn't have an issue with that. She isn't on any meds she only has naprosyn

for pain. She has an IEP for her learning disabilities from other health issues.

What would a 504 do that an IEP won't?

> > >

> > >

> > > I find this to be a huge part of my life as well. from the time I was very

young with JA until now. Weather changing seems to be a huge culprit. I have

always said March/ April and September/ october are my worst times of the year.

Along with mild flares I tend to face alot of fatigue and need 10 minute cat

naps to get through my days. But sometimes those cat naps are rare and hard to

find but oh so worth it!

> > > hang tight!

> > > Donna

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

The fatigue will come from the flaring of the disease. Her immune system is in a

constant battle with her body. It is an exhausting process. Getting the disease

under control with the use of DMARD's may be necessary at this point. Setting up

her 504 or iep plan is a step in the right direction as well. My son would come

home from school (high school) and take naps, sometimes now comes home from work

and does the same. Michele ( 23, spondy)

________________________________

From: [mailto: ] On Behalf Of

Sent: Monday, May 10, 2010 8:34 AM

Subject: Re: Fatigue

Hi All,

To anyone who will answer. I have found that my daughter seems tired all the

time. It has gone on for a year and a half now. It is so hard to wake her up for

school in the morning. She seems to be good in the afternoon, but when I get hr

up for school she looks as though she has been up all night. Her eyes look weak

and she can fall asleep on the toilet. The school is harassing me about her

missing and being tardy. I don't know what to do about it.

>

>

> I find this to be a huge part of my life as well. from the time I was very

young with JA until now. Weather changing seems to be a huge culprit. I have

always said March/ April and September/ october are my worst times of the year.

Along with mild flares I tend to face alot of fatigue and need 10 minute cat

naps to get through my days. But sometimes those cat naps are rare and hard to

find but oh so worth it!

> hang tight!

> Donna

>

>

>

>

>

>

[Guest guest]

Hmm... my understanding is that most things a 504 plan can do and IEP can do.

Not positive though! 504 is specific to making school " doable " for a kid that

does not have issues with learning. 's 504 allows for physical

accomodations like using a chair and having assistance carrying her backpack as

well as things like not being marked tardy for lateness due to health, being

allowed to rest in the nurses office whenever, staying in her classroom for

quiet play while others are at gym, etc. Not sure if you can build these things

into the IEP or not.

As for the hypothyroidism - yikes! My mother, who lives with us, had her

thyroid removed and has really struggled to get the meds under control. She

tests as hyper everytime when she is on the proper dosage for her symptoms. If

she reduces the meds to reflect " normal " on her blood tests, her symptoms are

severly hypo. So they leave her on the higher meds and monitor her more

closely. My understanding is that this isn't uncommon. If you are seeing a

pediatric endo then totally ignore me, but if it's just your ped, you might want

to look into the thyroid stuff further. Just an idea! Hope you get it sorted

out soon!

Kirsten

> > > >

> > > >

> > > > I find this to be a huge part of my life as well. from the time I was

very young with JA until now. Weather changing seems to be a huge culprit. I

have always said March/ April and September/ october are my worst times of the

year. Along with mild flares I tend to face alot of fatigue and need 10 minute

cat naps to get through my days. But sometimes those cat naps are rare and hard

to find but oh so worth it!

> > > > hang tight!

> > > > Donna

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

My mom had similar issues and what helped her is drinking a lot of green tea extract.. She is doing very well now.On Mon, May 10, 2010 at 10:29 AM, Ruth Snider <rsnider@...> wrote:

 

I have been dealing with fatigue for several months. I feel like my life consist of naps! I went to MDA last week and all my counts were in normal ranges, except my platelets which were 112. These are the best numbers I have had in a long time. I was diagnosed in 5/08. I started treatment 9/08 with Revlimid. I hit a few bumps in the road, but for the most part it has been a positive treatment with excellent results. Now if I could find some way to address this fatigue, I think I could get my life back on track. Does anyone have any ideas that I could suggest to my doctor. Ruth

-- Thanks & Regards,Pradeep Kumar C.

[Guest guest]

would you mind me asking you about who you saw at MDA and how your counts and symtoms were when you first went there. I'm curious why they started you on revlimid and not FCR

Thank you

Fatigue

I have been dealing with fatigue for several months. I feel like my life consist of naps! I went to MDA last week and all my counts were in normal ranges, except my platelets which were 112. These are the best numbers I have had in a long time. I was diagnosed in 5/08. I started treatment 9/08 with Revlimid. I hit a few bumps in the road, but for the most part it has been a positive treatment with excellent results. Now if I could find some way to address this fatigue, I think I could get my life back on track. Does anyone have any ideas that I could suggest to my doctor. Ruth

[Guest guest]

When I first went to MDA, within a three month period, my wbc doubled. I was experiencing the kind of fatigue I have now. Dr. O'Brien is my doctor. We discussed FCR and the clinical trial for Revlimid. They were having good results for the Revlimid trial and it had been successful in treatment of other cancers. I choose revlimid with Dr; O'Brien blessing. I have had overall, a good experience with Revlimid, even though in the first six months I experienced every side effect that went along with that treatment. I stayed with it, and the most troublesome side effect I have now is bruising on my arms and legs. Ruth

[Guest guest]

RuthSome CLL patients have taken Provigil or one of the medications for ADHD for fatigue and found it to be helpful. This would not be advisable if you have certain heart conditions. I would check with your GP as well as your oncologist if you are considering trying something like this.

PatOn Mon, May 10, 2010 at 9:16 AM, Ruth Snider <rsnider@...> wrote:

 

When I first went to MDA, within a three month period, my wbc doubled. I was experiencing the kind of fatigue I have now.  Dr. O'Brien is my doctor. We discussed FCR and the clinical trial for Revlimid. They were having good results for the Revlimid trial and it had been successful in treatment of other cancers. I choose revlimid with Dr; O'Brien blessing. I have had overall, a good experience with Revlimid, even though in the first six months I experienced every side effect that went along with that treatment. I stayed with it, and the most troublesome side effect I have now is bruising on my arms and legs. Ruth

[Guest guest]

This fatigue may be the lenalidomide. While it is important to consider all

possibilities, we do have to stop treating patients with lenalidomide sometimes

because the fatigue is so severe.

As mention, Provigil or Ritalin are often helpful in these situations.

Rick Furman

>

> I have been dealing with fatigue for several months. I feel like my life

consist of naps! I went to MDA last week and all my counts were in normal

ranges, except my platelets which were 112. These are the best numbers I have

had in a long time. I was diagnosed in 5/08. I started treatment 9/08 with

Revlimid. I hit a few bumps in the road, but for the most part it has been a

positive treatment with excellent results. Now if I could find some way to

address this fatigue, I think I could get my life back on track. Does anyone

have any ideas that I could suggest to my doctor. Ruth

>

[Guest guest]

I am currently using Provigil. It works wonders for me on the days I need a boost. The downside is the expense with each pill costing around 10 dollars so I reserve usage on days when I really need some help . I would recommend only taking them early in the morning because I have found difficulty sleeping if I take them later in the day. Re: Fatigue

This fatigue may be the lenalidomide. While it is important to consider all possibilities, we do have to stop treating patients with lenalidomide sometimes because the fatigue is so severe.

As mention, Provigil or Ritalin are often helpful in these situations.

Rick Furman

>

> I have been dealing with fatigue for several months. I feel like my life consist of naps! I went to MDA last week and all my counts were in normal ranges, except my platelets which were 112. These are the best numbers I have had in a long time. I was diagnosed in 5/08. I started treatment 9/08 with Revlimid. I hit a few bumps in the road, but for the most part it has been a positive treatment with excellent results. Now if I could find some way to address this fatigue, I think I could get my life back on track. Does anyone have any ideas that I could suggest to my doctor. Ruth

>

[Guest guest]

Hello Ruth,

Fatigue is my only major concern of the disease at this point and I take Provigil (I believe 200 mg). It's helps quite a bit and makes a near-normal life possible.

Chris

From: Ruth Snider <rsnider@...>Subject: Fatigue Date: Monday, May 10, 2010, 11:29 AM

I have been dealing with fatigue for several months. I feel like my life consist of naps! I went to MDA last week and all my counts were in normal ranges, except my platelets which were 112. These are the best numbers I have had in a long time. I was diagnosed in 5/08. I started treatment 9/08 with Revlimid. I hit a few bumps in the road, but for the most part it has been a positive treatment with excellent results. Now if I could find some way to address this fatigue, I think I could get my life back on track. Does anyone have any ideas that I could suggest to my doctor. Ruth

[Guest guest]



Thanks for all the suggestions. I will speak with my family doctor. I have an appointment Thursday, and then get in contact with Dr. O'Brien. I must do something. I find myself going back to bed most mornings.If I must get out during the day, I must rest up to manage it. I then come in and immediately rest for a couple of hours. Ruth

[Guest guest]



has the revlimid improved your cll other than fatigue and have you ever had other treatment. Did you have enlarged nodes as well.

Thank you

Re: Fatigue

 Thanks for all the suggestions. I will speak with my family doctor. I have an appointment Thursday, and then get in contact with Dr. O'Brien. I must do something. I find myself going back to bed most mornings.If I must get out during the day, I must rest up to manage it. I then come in and immediately rest for a couple of hours. Ruth

[Guest guest]

Hi,

Anemia may also contribute to the tiredness and there is such thing as anemia of

chronic disease, which worsens when the disease is active.

Just a thought. It's something my son dealt with several times.

Aloha,

Georgina

Re: Fatigue

Hi All,

To anyone who will answer. I have found that my daughter seems tired all the

time. It has gone on for a year and a half now. It is so hard to wake her up for

school in the morning. She seems to be good in the afternoon, but when I get hr

up for school she looks as though she has been up all night. Her eyes look weak

and she can fall asleep on the toilet. The school is harassing me about her

missing and being tardy. I don't know what to do about it.

>

>

> I find this to be a huge part of my life as well. from the time I was very

young with JA until now. Weather changing seems to be a huge culprit. I have

always said March/ April and September/ october are my worst times of the year.

Along with mild flares I tend to face alot of fatigue and need 10 minute cat

naps to get through my days. But sometimes those cat naps are rare and hard to

find but oh so worth it!

> hang tight!

> Donna

>

>

>

>

>

>

[Guest guest]

My 6 year old son battles fatigue as well. He was on naproxen, mtx and

Enbrel until November...I mentioned to the rheumy (again) about the fatigue and

he stated that perhaps the naproxen was causing a small belly bleed. Since

was showing no signs of active disease we took him off the naproxen at that

point. Amazingly, the fatigue has improved...and he has no pain. He still gets

very tired the day after his mtx injection...but overall there is improvement.

Does he have the stamina his 8 year old sister has? No...but for a kid with

JIA, I think he's doing great. If your daughter is in pain and needs the

naproxen...maybe it's time to move to the next level of drugs?

As for the school...homeschooling is not always an option (like for us...I must

work)...so it's probably time to fight for a 504 or IEP. My has an

extensive IEP...has since he was 4 and in a special needs pre-k. Originally

itcwas for significant developmental delays and severe speech impairment

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