Fatigue

[Guest guest]

Hi all,

It's been a while since I've posted, but have a question.

When the AP finally kicks in and you are at a point where you rarely

take anti-inflammatories and are taking only the antibiotic otherwise,

should your energy level increase?

Even when I was in remission in the past, I still seemed not to have the

energy I felt I should. Now that the AP seems to be working for me, I

still feel like I have no energy until very late in the day. Is there

something else I should check or some vitaming supplement I should be

taking?

Thanks and God Bless, Debra

[Guest guest]

How's your diet Debra, my energy levels improved by about 85% when I changed

mine !! I've given up on the other 15% and put it down to old age <grin>

hugs,

lisbeth

Re: rheumatic Fatigue

>From: " D. King " <dking@...>

>

>Hi all,

>

>It's been a while since I've posted, but have a question.

>

>When the AP finally kicks in and you are at a point where you rarely

>take anti-inflammatories and are taking only the antibiotic otherwise,

>should your energy level increase?

>

>Even when I was in remission in the past, I still seemed not to have the

>energy I felt I should. Now that the AP seems to be working for me, I

>still feel like I have no energy until very late in the day. Is there

>something else I should check or some vitaming supplement I should be

>taking?

>

>Thanks and God Bless, Debra

>

>------------------------------------------------------------------------

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>

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>

[Guest guest]

My doctor told me to take brewer's yeast for fatigue, 3 tablets three times

a day, and it helped tremendously. You take it for the B vitamins, it has

them in the right proportion for them to work together. It took about a

month or two to kick in. I was fatigued to the point that I nearly couldn't

function, and they made me feel nearly back to normal.When I started taking

the tetracycline a month later it improved even more. I think I still get

tired more easily than most people, but not to the point of tears like

before. Getting off the anti-inflammatories helped a little too, I feel.

Liz G

[Guest guest]

Liz,

You can buy nutritional yeast (brewer's yeast) at a lot

of supermarkets now, in the bulk food section. That's

how I buy it. This may be better than taking tablets.

From what I've read, nutritional yeast is supposed to

promote healing and act as a good antidepressant too.

It has a natural combination of B vitamins and many

trace minerals too. You might want to read up on

the trace mineral part. I have a book here " Prescription

for Nutritional Healing " that mentions different sources

for different minerals and nutrients and nutritional yeast

comes up very often in here.

Also, nutritional yeast has an easily digestable high

grade protein. So it has a lot of pretty good things

going for it.

Re: rheumatic Fatigue

> From: " Liz G. " <pioneer@...>

>

> My doctor told me to take brewer's yeast for fatigue, 3 tablets three

times

> a day, and it helped tremendously. You take it for the B vitamins, it has

> them in the right proportion for them to work together. It took about a

> month or two to kick in. I was fatigued to the point that I nearly

couldn't

> function, and they made me feel nearly back to normal.When I started

taking

> the tetracycline a month later it improved even more. I think I still get

> tired more easily than most people, but not to the point of tears like

> before. Getting off the anti-inflammatories helped a little too, I feel.

> Liz G

>

>

> ------------------------------------------------------------------------

> Wanting to get back in touch with old friends?

>

> Reunite through a ONElist community.

[Guest guest]

I am still not started on the AP. The doctor just moves so slowly. She forgot

to order the cryoglobulin test, and she would still be waiting for the results

if I hadn't told her that she didn't order it yet. So I went for that test and

she also ordered C3 and C4. I don't know what any of these are but I think she

is trying to establish a baseline of some kind so we can check on the results

of the AP. If you know what these tests are for please let me know.

Anyway, I was very energetic Wed. and Thurs, but since then I have slept

almost all of Friday and Sat.

I tried soaking in the hydrogen peroxide and especially my hands in warm

washcloths with HP on them. My hands are better today.

This is so sudden. I was " normal " last year and then only had the excruciating

hip pain starting in January til April when I finally got a cortizone shot in

the hip. While I had the hip pain all the other stuff snuck up on me and I

have chronic pain in all my fingers and my left wrist, sometimes the right

wrist, also the right ankle and foot sometimes. An old back injury sometimes

flares up if everything is hurting, plus some of the anti-inflammatories have

been making the back base of my head hurt. I don't know what that is, but it

is not like a headache - it is pain in the tissue of the head there above the

top of my neck. Alleve made it happen and the doctor told me not to take

Alleve anymore because of it. The ibuprofen made it happen the other day, but

generally works ok. Stopped the celebrex because it made me SO tired. But

maybe it wasn't the celebrex, maybe I am just so tired...

Anyway, it is so sudden and I am having trouble redefining myself as this

pain-ridden person who is always complaining about this pain and that pain.

Hope the AP will fix it.

Thats all for now,

[Guest guest]

,

What you are describing sounds almost like a carbon

copy of what I go through sometimes. All the same

symptoms basically, but I'm not on any medication

now.

Re: rheumatic Fatigue

> From: Tate <valtate@...>

>

> I am still not started on the AP. The doctor just moves so slowly. She

forgot

> to order the cryoglobulin test, and she would still be waiting for the

results

> if I hadn't told her that she didn't order it yet. So I went for that test

and

> she also ordered C3 and C4. I don't know what any of these are but I think

she

> is trying to establish a baseline of some kind so we can check on the

results

> of the AP. If you know what these tests are for please let me know.

>

> Anyway, I was very energetic Wed. and Thurs, but since then I have slept

> almost all of Friday and Sat.

>

> I tried soaking in the hydrogen peroxide and especially my hands in warm

> washcloths with HP on them. My hands are better today.

>

> This is so sudden. I was " normal " last year and then only had the

excruciating

> hip pain starting in January til April when I finally got a cortizone shot

in

> the hip. While I had the hip pain all the other stuff snuck up on me and I

> have chronic pain in all my fingers and my left wrist, sometimes the right

> wrist, also the right ankle and foot sometimes. An old back injury

sometimes

> flares up if everything is hurting, plus some of the anti-inflammatories

have

> been making the back base of my head hurt. I don't know what that is, but

it

> is not like a headache - it is pain in the tissue of the head there above

the

> top of my neck. Alleve made it happen and the doctor told me not to take

> Alleve anymore because of it. The ibuprofen made it happen the other day,

but

> generally works ok. Stopped the celebrex because it made me SO tired. But

> maybe it wasn't the celebrex, maybe I am just so tired...

>

> Anyway, it is so sudden and I am having trouble redefining myself as this

> pain-ridden person who is always complaining about this pain and that

pain.

>

> Hope the AP will fix it.

>

> Thats all for now,

>

>

>

> ------------------------------------------------------------------------

> Want to learn more about your list users?

>

> Now you can with our new User Survey Tool - see homepage for details

[Guest guest]

Dear Debra,

I have been wondering a lot about fatigue lately. I am certainly in a

different place than you, starting AP tomorrow(!). but I've been thinking

about other possible causes for fatigue.

For example, I am perimenopausal (still menstruating but certainly closer to

menopause then puberty!) and perimenopausal friends of mine without RA are

very fatigued. This is a common symptom. Also, depression causes fatigue,

and when tiredness is due to depression there is a diurnal pattern, with

fatigue worse in the AM and better in the PM.

I don't know if any of this is applicable to you, but I wanted to share these

ideas.

[Guest guest]

I can relate to your fatigue and to the pain right where your skull connects to

your spine. I experience the same things. Before AP and even the first 3-4

months I usually dragged myself through the work-week and slept most of the

weekends. Sometimes, I'd even come home on my lunch hour and take a nap.

Sometimes I still do. (Fortunately, I live close to work.) That 3-4 months was

when that place in my neck was really bad. It still bothers me while I sleep

and

in the mornings but not like it did. I know it has to be the arthritis. Before

I

got on anti-inflammatories I couldn't raise my head off the pillow in the

morning. I think you'll find that you'll feel better after you've been on AP

for

4-6 months. I'm going on 7 months and I generally feel better although I still

have pain that moves from joint to joint, cold wet weather makes me hurt a lot,

and sometimes I get very depressed. I think all of this is part of arthritis.

My

energy level is back now and I'm really thankful for that. My husband says he

sees

an improvement in my health even though I have highs and lows. This definitely

is

a very slow process. I know that the AP is the best choice with the greatest

opportunity for the best results that anything else out there. Hang in there!!!

Tate wrote:

> From: Tate <valtate@...>

>

> I am still not started on the AP. The doctor just moves so slowly. She forgot

> to order the cryoglobulin test, and she would still be waiting for the results

> if I hadn't told her that she didn't order it yet. So I went for that test and

> she also ordered C3 and C4. I don't know what any of these are but I think she

> is trying to establish a baseline of some kind so we can check on the results

> of the AP. If you know what these tests are for please let me know.

>

> Anyway, I was very energetic Wed. and Thurs, but since then I have slept

> almost all of Friday and Sat.

>

> I tried soaking in the hydrogen peroxide and especially my hands in warm

> washcloths with HP on them. My hands are better today.

>

> This is so sudden. I was " normal " last year and then only had the excruciating

> hip pain starting in January til April when I finally got a cortizone shot in

> the hip. While I had the hip pain all the other stuff snuck up on me and I

> have chronic pain in all my fingers and my left wrist, sometimes the right

> wrist, also the right ankle and foot sometimes. An old back injury sometimes

> flares up if everything is hurting, plus some of the anti-inflammatories have

> been making the back base of my head hurt. I don't know what that is, but it

> is not like a headache - it is pain in the tissue of the head there above the

> top of my neck. Alleve made it happen and the doctor told me not to take

> Alleve anymore because of it. The ibuprofen made it happen the other day, but

> generally works ok. Stopped the celebrex because it made me SO tired. But

> maybe it wasn't the celebrex, maybe I am just so tired...

>

> Anyway, it is so sudden and I am having trouble redefining myself as this

> pain-ridden person who is always complaining about this pain and that pain.

>

> Hope the AP will fix it.

>

> Thats all for now,

>

>

> ------------------------------------------------------------------------

> Want to learn more about your list users?

>

> Now you can with our new User Survey Tool - see homepage for details

[Guest guest]

My rheumatologist described it this way:

When we are having a flare, our immune system is on over drive producing lots

of extra white cells to attack our joints, tendons, ligaments, hair follicles

(for those of us who get alopecia too), extra skin layers (the psoriasis).

Of course, our body gets tired of this constant stress of being on over drive

all the time.

Similarly, when you get the flu, your body mounts its natural immune response

to fight it off - and you feel exhausted because your normal every day energy

is being used to fight the flu.

[Guest guest]

>Sandy

>

>ps. what is stage 4?

>

http://www.geocities.com/HotSprings/6028/drugs.htm

Here is a link that tells a little about stage 4 sleep, and drugs that can

interfere with it. Note all the nsaids there! I wonder if that is why some

people, like myself, feel less pain without them? This page is focused on

fibromyalgia, but the sleep disturbance/pain connection applies to anyone,

as far as I know. If you follow the links down at the bottom there is more

on the subject. HTH Liz G

[Guest guest]

Margaretha...Donna here...I have been on EPO since Tuesday this week and have

had tons of energy...we even went to Grand Rapids to dinner and I wasn't even

the least bit tired. Usually I would be beat when we'd get home...who knows

about tomorrow. I'm wondering if when we feel great we don't just over do it and

then pay for it down the road...BUT THE BEST PART IS MY FEET AREN'T SWOLLEN

TODAY AND I'M NOT HAVING ALL THE PAIN IN MY JOINTS AND IT IS TO RAIN...Glory

Be...Is it really me????

I think fatique is real, and so is the pain...we just get little reprieves from

it. Later...

[Guest guest]

Have to agree w/ the comments on fatigue. Some days I feel like Superwoman

and some days I feel like I can't even get up off of the couch. Very tough as

my son - 9 1/2 yrs old - doesn't always understand that it's not that Mom

doesn't want to go out in the yard .......... anyone have any suggestions?

Usually I feel so guilty that I will sit out in a lawn chair so I don't

disappoint. Much easier to disappoint husband.

[Guest guest]

I think I posted earlier that for the last few days I'd had tons of

energy...well, I had my four year old grandson all day today and I may eat my

words tomorrow. I'll let you know. Ha! I started taking EPO on Tuesday and since

then I have felt really great. I don't know if I just think I have energy or I

really do. But I have felt better than I have in years. Like I said though I may

eat my words tomorrow. I do know now why God give babies and young children to

younger parents. And Josh was really good, but man, I'm sleepy tonight at 9:30.

Donna

[Guest guest]

I too suffer from being tired all of the time. I need a nap everyday, just

to be human. I finally have decent blood work, the best in three years! How

did it happen? A hysterectomy, a six hour iron IV and tons of rest. I have

come to the conclusion that this working thing is getting the best of me. I

think it's time for SSI. My only concern is that although I have an elevated

CRP, the rest of my blood work looks good. I am so upset, because in order

to improve things, I have to rest a lot! After my surgery, I rested a ton,

and the result is great blood work. I hope I can still qualify for SSI,

because, I've hired someone to be me at work, so that I can get more rest.

But, I'm not making much money as a result, and would do better to just stay

home. I am such a much better mom to my three young children still at home

and would like to have quality time with my grandaughter too. This is very

frustrating!

Amy

[Guest guest]

Talking of Fatigue , I used to have it all during my bad days (Even while I

used to take antibiotics) but the situation dramatically changed after I

started taking Sulfasalazine , most of my problems disappeared ( except

perhaps the enthesitis but the pain definitely cam down )The SED rate came

down from 32 to 21 in a matter of fifteen days .

Regarding Enthesitis my rheuma tells me that there is no special treatment ,

except I can select to have a cast (like people have when folks break their

leg) on my left ankle and even that is not a permanent solution.

Does anybody know how to 'do away ' with the inflamed left ankle

(enthesitis) .This is the only visible symptom from the reiters attack I

encountered a few months back.I can walk but cannot turn real fast

Thank You,

Suranjan

(28 years - Reiters/AS 6 months AP 2 months (now stopped) now on

sulphasalazine- 1.5 months)

rheumatic Fatigue

Any help would be appreciated.

How do you folks cope with the fatigue, just bone numbing weakness and

fatigue. I have it quite a bit and am going on automatic pilot most of the

time. I have Connective Tissue disease and am not on any meds but waiting

to see Dr. Armstrong in Ottawa who has a waiting list of two years.

I

don't know how I can keep this up. I need my job and lucky for me it is

part time. I'm taking folic acid one a day and that's it. My gp won't

give me Minocin anymore now that I don't have RA or PA according to the new

RD. I try to get a good nights sleep but wake up a lot. My sinuses feel

plugged but the tightness in the head has eased a lot although I still get

it.

On top of everything my van quit on me on the way to work and it is the

one

day I didn't take my cell phone and had to walk a quarter of a mile in the

freezing cold. I didn't have a problem at all with the walking but at work

later had periods of weakness and fatigue. I am saving my money and

contemplating going to the U.S. to see a doctor there, if they haven't got

the terrible long waiting list like us. Six months to see an ENT or any

specialist in Canada or at least from my doctors office.

Any suggestions would sure be appreciated.

Bev

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Please I am not interesting in any E-mail with you guys.

Plese be kind to take me away from your E-mail list.

Thanks- Rosie

[Guest guest]

In a message dated 12/07/2000 7:07:21 AM Eastern Standard Time, PASTOROCA

writes:

<< Please I am not interesting in any E-mail with you guys.

Plese be kind to take me away from your E-mail list.

Thanks- Rosie >>

I received this post from PASTOROCA.

[Guest guest]

Bev, sorry to hear you are feeling so bad. If I were you, I

would send a blood sample to Dr

Linder at Texas A & M University.

The report he did for me was a

turning point. Now that I'am using the antibiotics he recommended and in

sufficient amounts, I'am seeing progress.

The enclosed URL contains my

detailed posting which is now on

the AP bulletin board:

http://209.207.141.196/bbs1/signpunk/messages/301.sht

REGARDS,

ray

..

____________________________________________________________________

Get free email and a permanent address at http://www.netaddress.com/?N=1

[Guest guest]

Yes, I do find that others apologize for complaining and that also makes me feel bad. Most people do understand that there is a great deal of pain that comes with these diseases, they just can't understand how bad it is. They know enough to believe that they aren't in as much pain as us so they are embarrassed when they complain. I always sympathize with others minor aches and pains because before I knew "Arthur" I too complained. I know I am still in more pain than most people I associate with, but you wouldn't know it. I am ecstatic that I feel so much better! I get up every day looking forward to life and I pray that I don't regress. I think also that people who live with chronic pain eventually build up a tolerance to it over time. I often wonder with how I feel at this moment would I feel this way 4 years ago before I got RA or would I think I was in a lot of pain? My guess is that I would probably be complaining about my aches and pains.

Kimmie

rheumatic fatigue

"..........This is probably why those close to us do not fully understand what we are going through because we are not only dealing with a lot, but we are also trying to spare them from feeling bad or uncomfortable when they are around us......Kimmie"

I am so fortunate and grateful that I have a few close friends and family members that I don't have to "pretend" around. One of the reasons for this is that I allow them their aches and pains.......do you find that some people appologize for their pain, because it must be "minor compaired yours"??? If I had a nickle for every time I've said "it's ok for others to hurt around me", I'd be able to afford my Vioxx without any problem!

Glad to hear you're doing better, Kimmie........be well, To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

In a message dated 21/04/01 04:38:35 GMT Daylight Time, catwoman10uk@... writes:

sorry i am moaning i have never been able to moan so much since my first hubby left me....hahahah. sorry j/k but can i come here and moan as much as i like without u guys complaining?

Hi Karin,

You can moan all you want !!!!! just don't get depressed :-)

In many ways, it is what the group is for, 'a shoulder to lean on'....(and sometimes, cry on !!)....

With regards to your fatigue. I think we all suffer with this one. My remedy, (sometimes!), is to go out for a long walk, dependant on the weather of course! and surprisingly, it sometimes cures it! I handle the pain in the same way, if it gets really bad, (which is every day!!), a walk just seems to take my mind from it.

But, as been said on many occassions, we are all different and handle this in our own way. What is good for one, is not necessarily good for another...think I have said that before !! <BG>

Mike (from the UK)

[Guest guest]

Hi Catwoman. You are not alone...I know what you mean about the

fatigue...I find a lot of afternoons I have to lay down because I am so

tired I can't go anymore. I try not to give in, but sometimes it is

impossible. Until the doctors finally sorted out what was going on, they

had me thinking I was crazy.

[Guest guest]

> Until the doctors finally sorted out what was going on, they

> had me thinking I was crazy.

I wish my doctors would sort it out - I think they think I'm just a

whiner :-(

Do you have any advice as to what to tell them to get them to take my

fatigue seriously?

-- Ron

[Guest guest]

In a message dated 21/04/01 05:46:05 GMT Daylight Time, rkba@... writes:

Do you have any advice as to what to tell them to get them to take my fatigue seriously?

Ron,

Yes !! when you go into your Doctor's surgery, and he/she starts to talk to you, keep 'nodding' off, and ask him/her to repeat what they had said to you !!!!! :-) you could then 'slip' into the conversation, the word, Fatigue. They usually start listening then !!

Mike (from the UK)

[Guest guest]

Hi Ron

What I would suggest is to notice any patterns to the fatigue so that

you can report it to the doctor. Fatigue is quite common in PA...I am

sorry you are having a hard time getting this across to them. My PA

started with headaches, fever and joint pain and of course, the fatigue.

I went through many tests and the doctor thinking that it was

psychosomatic before it occurred to the him that it might be PA since I

have had psoriasis since age 17 and sent me to the rheumy. Just know it

is not in your mind.

[Guest guest]

Your moaning is refreshing. I call them my "pity me" moods. Yes, sometimes I wake up exhausted - my eyes feel heavy and get worse as the day goes on.

But, job, children and life just push me on. I have never tried a chat room.