Fatigue

[Guest guest]

I am not a doctor nor pretend to be one.  However, you described me to a T, not

only do I have P and PsA but I have fibromyalgia.  Naturally do not take what I

have said as medical advice but something worth asking your doctor about.

 

Luv,

 

[Guest guest]

:  I had symptoms like this and they were diagnosed as fibromyalgia - my

doc even said the inability to concentrate that I was experiencing was

" fibromyalgia fog " .  The tiredness was so overwhelming that the sleepiness was

close to being narcolepsy.  I became afraid to drive anywhere but around town

because driving was where it became  the worst.  Men do get fibro so talk to

your rheumy and see if it's a possibility.  Fibro tends to be more of an

all-over achiness/pain because it's primarily associated with incorrect messages

from our brain to our nerve endings, making them experience pain more acutely. 

Nobody knows why. 

Also, watch that numbness because that can be a side effect of the TNF blockers

which can turn into MS type symptoms - which go away if you stop taking the drug

but can be very problematic if they're not dealt with.  I'm glad you have a

rheumy appointment soon.  Both of these are things that you don't want to let

drag on. 

 Joanna Hoelscher

[Guest guest]

If you are walking 15 miles a day 1200 calories is not enough. You must have at

least 200 calories a day with that much exercise.

That is why you are so tired. Good Luck

Harold

[Guest guest]

Hi

I have a similar situation and have been trying to do a 30 to 45 minute work out

'no matter what'. I thought that would pep me up and also help build muscles

around my joints.

Well I feel 'healthier' but I have no real change in fatigue nor in pain. Kind

of neutral impact which really surprises me.

So the things that seem to help me with fatigue are:

- getting a good nights sleep-- enough said

- downing one of those 5 hour energy mini bottles--I know it seems hokie but it

certainly makes me feel great!

Otherwise, my regular doc found that my thyroid levels were low so I am on 125

mg of synthroid a day. That helped less than I expected. But you might want to

get yours checked

Lastly, my doc put me on a mix of Lexapro (10mg) and Wellbutrin. The Wellbutrin

has made me feel really great! Much more energetic. So I guess mine is related

to depression... Might want to consider that too

Hang in there. Rest, exercise and happy pills seem to help me.

[Guest guest]

Hi ,

I have had problems with being tired too.

After a blood test I found my answers were B 12, and iron pills. When all else

fails go back to the simple things, you may just get lucky like I did.

Take care.

SD

[Guest guest]

RA :

Just wanted to say thank you for the links! Definitely new ones I have not

visited before and each had additional insight. Each " gem " seems to lighten the

load as we share with one another.

Thank You!

Cheryl (AK)

<<I too suffer from fatigue --I think we all do to one extent or another. I've

done some research on the subject, and here are three websites I've found

useful:>>

http://arthritis.webmd.com/psoriatic-arthritis/psoriatic-arthritis-10-tips-to-fi\

ght-fatigue> or

http://tinyurl.com/pv5sha

http://arthritisinsight.com/living/fatigue/

or

http://tinyurl.com/pfqtg5

http://arthritis.ygoy.com/2008/11/14/psoriatic-arthritis-fatigue/

or

http://tinyurl.com/r58u3b

> Cheers,

> RA

> North Jersey

>

[Guest guest]

How many people get tired during the day and what times of the day do you get

tired. For m I get tired in the afternoon .In the morning I take a B-complex 50

pill and it gives me energy.Also taking naps during the day works too.I love to

work out and it helps me out alot.what other stuff can you use to give you

energy!!!

[Guest guest]

I would never take that.does too much damage to people with CUT..OH Not right

away.but down the road it does.Don't you know how bad it is for B6 is for CUT?It

might give you energy now.until it does the damage and becomes toxic and builds

up in your system.Don't take someone's word CMTERS look it up!Never promote

something that's bad for CMT. Been there!

Geri

How many people get tired during the day and what times of the day do you get

tired. For m I get tired in the afternoon .In the morning I take a B-complex 50

pill and it gives me energy.Also taking naps during the day works too.I love to

work out and it helps me out alot.what other stuff can you use to give you

energy!!!

[Guest guest]

Geri,

Good for you!!! I did not know how bad B-6 is for you. What is good for you?

Please tell me.

> I would never take that.does too much damage to people with CUT..OH Not right

away.but down the road it does.Don't you know how bad it is for B6 is for CUT?It

might give you energy now.until it does the damage and becomes toxic and builds

up in your system.Don't take someone's word CMTERS look it up!Never promote

something that's bad for CMT. Been there!

>

> Geri

>

>

>

> How many people get tired during the day and what times of the day do you get

tired. For m I get tired in the afternoon .In the morning I take a B-complex 50

pill and it gives me energy.Also taking naps during the day works too.I love to

work out and it helps me out alot.what other stuff can you use to give you

energy!!!

>

>

>

>

>

>

>

>

[Guest guest]

Geri,

Thanks for the information.I was taking to much B-6 and I threw those vitamins

away. I called the CMT association to ask. Please tell me what do you take.

> Geri,

>

> Good for you!!! I did not know how bad B-6 is for you. What is good for you?

Please tell me.

>

>

>

> > I would never take that.does too much damage to people with CUT..OH Not

right away.but down the road it does.Don't you know how bad it is for B6 is for

CUT?It might give you energy now.until it does the damage and becomes toxic and

builds up in your system.Don't take someone's word CMTERS look it up!Never

promote something that's bad for CMT. Been there!

> >

> > Geri

> >

> >

> >

> > How many people get tired during the day and what times of the day do you

get tired. For m I get tired in the afternoon .In the morning I take a B-complex

50 pill and it gives me energy.Also taking naps during the day works too.I love

to work out and it helps me out alot.what other stuff can you use to give you

energy!!!

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hello Traci this is ;i know exactly what you our going through,the way i

combat

this situation,is to not let it get the best of me.I make myself get up and do

thing's

that other's without this Disease wouldn't do anyway:Don't depend on

Pharmaceutical

drug's for everything;they will Kill you,don't give up,make yourself get

up,through time

it well dissipate that day,some day's are worse then other's.Good luck and Pray.

From: Traci <lucydes29@...>

Subject: [ ] Fatigue

Date: Tuesday, August 3, 2010, 3:54 AM

 

Hi everyone

I was just wondering if anyone else has trouble with fatigue? I cannot seem to

stop being so tired all of the time. I cant even stand up for 5 mins without

feeling the need to sit downrig ht away. It is so awful. If anyone has any

advice please let me know

Thanks

Traci

[Guest guest]

I've been dealing with it since I was diagnosed. The only thing that has made it

moderately better for me is staying on a sleep schedule and not getting too far

off track. Even then it is very difficult. I don't remember the last time I felt

really good.

Stan

Seattle, Blue Angels.

[ ] Fatigue

Hi everyone

  I was just wondering if anyone else has trouble with fatigue?  I cannot

seem to stop being so tired all of the time.  I cant even stand up for 5 mins

without feeling the need to sit downrig ht away.  It is so awful.  If anyone

has any advice please let me know

 Thanks

Traci

[Guest guest]

Just rest.....I sleep a lot.

Vitamins help but I often sleep 15 plus hours.

Like a bear hibernating....

Raniolo

From: Traci <lucydes29@...>

Subject: [ ] Fatigue

Date: Tuesday, August 3, 2010, 3:54 AM

 

Hi everyone

I was just wondering if anyone else has trouble with fatigue? I cannot seem to

stop being so tired all of the time. I cant even stand up for 5 mins without

feeling the need to sit downrig ht away. It is so awful. If anyone has any

advice please let me know

Thanks

Traci

[Guest guest]

After I was given drugs so that I could walk, fatigue was the biggest

problem. I never know which days I'll have energy and which ones I'll barely be

able to get out of bed.

I know some people are given Provigil -- I haven't tried it yet.

I can't stand. I can walk and I can sit (and dance). But I can't just

stand.

When shopping, I get a cart as soon as I can find one -often in the parking

lot - I can lean on the cart if I have stop or wait for anything.

dd

[Guest guest]

>

>

> From: Traci <lucydes29@...>

> Subject: [ ] Fatigue

>

> Date: Tuesday, August 3, 2010, 3:54 AM

>

>

>

>

>

>

> Hi everyone

> I was just wondering if anyone else has trouble with fatigue? I cannot seem to

stop being so tired all of the time. I cant even stand up for 5 mins without

feeling the need to sit downrig ht away. It is so awful. If anyone has any

advice please let me know

> Thanks

> Traci

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Fellow Tired RA People,

     I was wondering if Vit.B-12 shots would help any of us? I've asked my

Dr. but she said

" no-take take the oral supplements " ( which I do-but don't help) I think my

health insurance

probably discourages her from offering it. Any thoughts?

                                        \

                                        \

                        Fiona

[Guest guest]

I don't know about you but it did nothing for me. I injected 1cc every week

for a while and kept track of it during that time. Nothing happened, so I

quit taking it. Now I'm only taking the B comlex tablet every day with my

other supplements.

Dennis in eastexas

On Thu, Aug 5, 2010 at 1:07 PM, Fiona Vallejo <fionavallejo@...>wrote:

>

>

> Hi Fellow Tired RA People,

> I was wondering if Vit.B-12 shots would help any of us? I've asked my

> Dr. but she said

> " no-take take the oral supplements " ( which I do-but don't help) I think my

> health insurance

> probably discourages her from offering it. Any thoughts?

>

> Fiona

>

>

[Guest guest]

Yes, I have been. Taking cyanobalam ijections which is vitamin b 12 complex not

only does it help your energy levels it also adds as a lubricant for your

joints. I have been taking it since the age of 8 years old.

Randy...

Sent via DROID on Verizon Wireless

Re: [ ] Fatigue

Hi Fellow Tired RA People,

     I was wondering if Vit.B-12 shots would help any of us? I've asked my

Dr. but she said

" no-take take the oral supplements " ( which I do-but don't help) I think my

health insurance

probably discourages her from offering it. Any thoughts?

                                        \

                                        \

                        Fiona

[Guest guest]

Hello.Some day's are worse than other's,make yourself workout and

walk/run,stretch,do

anything you can to avoid Pharmaceuticals,if your able and not bed ridden,good

luck.

.

From: Fiona Vallejo <fionavallejo@...>

Subject: Re: [ ] Fatigue

Date: Thursday, August 5, 2010, 2:07 PM

 

Hi Fellow Tired RA People,

     I was wondering if Vit.B-12 shots would help any of us? I've asked my

Dr. but she said

" no-take take the oral supplements " ( which I do-but don't help) I think my

health insurance

probably discourages her from offering it. Any thoughts?

                                        \

                                        \

                        Fiona

[Guest guest]

I've been diagnosed with RA for about 3.5 years now. Fatigue is something that

I've battled for over 5 so, that being said, one must experiment and find what

works best for them. I can sleep 12 hours a day if I'm left alone but I only

allow myself 7-8 at night. I get up and go to work (I drive a 10-wheeler dump

truck) and that pretty well trashes me, too. When I get home I have written " in

blood " that I get a one hour nap when I get home. If I don't then I reserve the

right to bite your head off and cook it for supper. The kids and hubby have

pretty well learned their hair better be on fire if they wake me up before my

nap is over. (See bottom half of next paragraph- I don't always need the nap but

I'm gonna milk it for all it's worth!)

Personally, I'm unable to do any excercize due to other physical situations. One

thing I will mention is that some, NOT ALL, but SOME people are low

seratonin-producers. I am one of them. I bought a " light box " a couple of years

ago for Seasonal Affective Disorder, which is Dr speak for severe winter

depression. I use this 10,000 lux light box for 20 minutes while eating my

breakfast at the computer desk. Using this in the winter dropped my Paxil dosage

in half. Due to the RA fatigue I'm now using it year round and it has really

helped me. I don't need the daily nap now. It may be a placebo effect but I'm

gonna stick with it.

Dalanne

in Fabulous 80 degree sunny East Central Illinois

>

> Hi Fellow Tired RA People,

> I was wondering if Vit.B-12 shots would help any of us? I've asked my Dr. but

she said " no-take take the oral supplements " ( which I do-but don't help) I think

my health insurance probably discourages her from offering it. Any thoughts?

Fiona

>

[Guest guest]

Hi...At this point in time, 12 years after DX of RA/PsA, and in my 7th year of

Humira & Mtx, fatigue is the hardest symptom I deal with.  Pain and stiffness

come and go...sometimes it is much worse, but seems to resolve.  But, there are

times when I have the kind of fatigue that literally makes me nauseous...it is a

'sickening' type of fatigue, my arms and legs feel heavy and just drained, and

sleep does not always resolve it.  It isn't anything like the 'good' tired of

physical work, or just being busy.  I have tried to explain it to people, and

some seem to 'get it', but many don't.

Gentle hugs...

Cheryle (aka Tess)

[Guest guest]

Some AS kids tire easily when doing physical exercise due

to poor muscle tone or poor coordination. Anxiety

will wear a person out too.

If she has anxiety and it is treated with an SSRI and fatigue

still persists you can have your doctor test her for

various issues like lyme disease, B12 vitamin deficency etc.

A pediatric rhematologist would be able to help in this area

to rule out issues that cause fatigue.

Pam

>

> I just read a post where a mom mentioned that AS kids fatigue more quickly

than others. Why is that? Is it the sensory overload? I have been so

concerned about my 15 year old daughter because it seems like she sleeps ALL the

time. And I know teenagers sleep more than other ages but her twin sister does

not sleep nearly as much as she does. She will take a 2 or 3 hour nap after

school and still be able to go to bed at 10:00. Then on the weekends if we

don't get her up and keep her busy she'll sleep all day Saturday. She does have

heart issues so I was beginning to get concerned it might be her heart (we have

a check up with her cardiologist in 2 weeks) but maybe its the AS and I never

thought of it.

>

> Thanks,

>

>

>

[Guest guest]

My daughter fatigues very easily because she has low muscle tone, which translates into more effort to keep up with similar age children. She requires 11 hours of sleep per night or she is unbearable to live with. Meanwhile my NT child gets 8-9 hours of sleep and she is 2 yrs younger.

Good luck with the cardiologist,

Becky

From: lmoorhead4 <lmoorhead4@...> Sent: Fri, September 17, 2010 7:53:39 AMSubject: ( ) Fatigue

I just read a post where a mom mentioned that AS kids fatigue more quickly than others. Why is that? Is it the sensory overload? I have been so concerned about my 15 year old daughter because it seems like she sleeps ALL the time. And I know teenagers sleep more than other ages but her twin sister does not sleep nearly as much as she does. She will take a 2 or 3 hour nap after school and still be able to go to bed at 10:00. Then on the weekends if we don't get her up and keep her busy she'll sleep all day Saturday. She does have heart issues so I was beginning to get concerned it might be her heart (we have a check up with her cardiologist in 2 weeks) but maybe its the AS and I never thought of it.Thanks,

[Guest guest]

Barb,

The " fatigue issue " was once explained to me as our muscles have to work twice

as hard to do half the work.

I had extreme fatigue when in Jr.High and High School. It took awhile to

understand that I needed more sleep and I also had to learn to pace myself and

not pack 'everything' into one day. Trial and error, but it taught me well. I

also learned some things about avoiding fatigue in a 12 step program that helped

me and still do.

" HALT " - don't get too hungry, angry, lonely or tired.

One of my first jobs was working as Curator at an art museum. I worked closely

with exhibits staff and construction. One of my co-workers from the shop said

" look, my philosophy is to make something look good and make it work, with the

least amount of effort " . Good Old Boy Homer Hames, in Wichita Falls, TX. I'll

never forget what he said and how that impacted me in years to come.

I do not have any fatigue problems now. Sure, after a long day, I'm tired, but

so is the rest of the world.

Gretchen

[Guest guest]

Hello Barb,

Is there a chance you could tell me your age? I hope you don't feel offended by

my question. The reason I'd like to know is because you mentioned you still

don't have any trouble walking. I am 37 years old and this year I have

experienced a significant decline. I used to work on the floor (in a hospital)

all day like nothing. Suddenly, one day I was walking down the hallway and I

had the sensation both my feet were made out of wood and kind of attached to

each other (like when someone's pants fall and they can't bent to pull then back

on and have to walk like that, fast)

I hope you can understand, I don't have a better choice of words since English

is my second language. To make it short, now, even to go to the supermarket I

need braces. It has been so fast, my family have trouble accepting the new me,

specially my husband. He is very supportive but sometimes, I feel he doesn't

believe me and " that " , my dear, is very hurtful but, I understand.

I have been listening to the interviews on Lenka's blog where she

interviews 3 people with CMT. Quite a bit was shared about fatigue.

So I am wondering what causes the fatigue. Is it just a general

tiredness such as is experienced by people with fibromyalgia or

similar illnesses. Or is it tied to the fact that so much energy is

used up in using arm and leg muscles that aren't as efficient due to

the nerve damage which then affects the muscles. I have absolutely

no fatigue- but at this point I also have no problems with walking or

using my hands (its mostly sensory at this point). So I'm wondering

if all people with CMT experience extreme fatigue (like was talked

about in the interviews), and if so, at what point it occurs in the

progression of the disease.

Blessings,

Barb