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Medical Forum / Diseases and Disorders / Lupus / April 2005

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any help for the fatigue out there?

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JQ - 14 Apr 2005 20:31 GMT
Hello, I have been trying to over come my fatigue for a few years now
and now that I have been told I mostly likely Lupus I'm wondering what
I can do to control this fatigue. Are there any medications out there
that would help? any suggestions? It's too hard trying to get 10-11
hours of sleep a night and even then I am exhausted by 2:00 which is
getting in the way of my career and life.
My Doctor suggested plaquenil  however reading some of the old posts
here people say it causes more fatigue so I'm at a loss.
Has anyone else here found any hope in curing or aiding the fatigue!?
Thank you, Jacquie
KCat - 14 Apr 2005 21:12 GMT
> Hello, I have been trying to over come my fatigue for a few years now
> and now that I have been told I mostly likely Lupus I'm wondering what
[quoted text clipped - 6 lines]
> Has anyone else here found any hope in curing or aiding the fatigue!?
> Thank you, Jacquie

I don't think Plaquenil causes fatigue.  Certainly not often.  It might
cause drowsiness when first taking it - but I've never experienced that. It
becomes very difficult to separate symptoms from the disease and side
effects with a disease like lupus.  So it may be that someone started taking
Plaquenil and just happened to develop the symptom of fatigue shortly
thereafter.

That said - I didn't find the plaquenil to alter my fatigue level much.  It
helped in many other ways but only time and remission really dealt with the
fatigue and even now I have days where all I want to do is sleep or I feel
so bone-weary nothing gets done.  Fatigue is probably the only symptom of
Lupus that occurs in 100% of lupus patients at one time or another. Very
darn near anyway.

I wish I had an answer - much of my fatigue improved when I quit working.
But that's not an option for you and I know it goes against what you want to
do.

I think it's worthwhile to try the Plaquenil if your doctor is willing to do
so.  Especially since it seems you don't have a full diagnosis?  It's a
fairly mild drug.  Just make sure you get a baseline eye exam either before
you start taking it or very soon after and keep up with eye exams every 6
months.  It's a rare risk, but a risk nonetheless.  I've been on plaquenil -
i think since 2000.  I credit it with a major role in keeping me out of the
hospital and reducing my joint pain greatly.  Used to be almost every day
was a day 7 or 8 (pain level of 0-10).  Now most days are 2s.  a few 4-5s
scattered in there during hormonal times.

it will take several weeks or months for you to properly guage your response
to plaquenil assuming you  have no side effects that force you to stop
taking it.  The most common side effect is probably nausea - taken with a
small amount of food (I drink half an Ensure) is enough to prevent this in
most people.

Give it serious though - the chance that it might help is, IMO, more
valuable than the risk that it won't.

Past that - the mantra has been for me - listen to what your body is telling
you when you can.  We're fatigued in part because our bodies require more
rest to heal and avoid flares.  I know this isn't convenient or desirable in
your situation.  But I know of little else that helps.  Exercise can help
for folks who are fatigued but inactive.  Obviously you are not inactive.

good luck - I hope someone here has some more helpful answers. :(

KCat
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KCat

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JQ - 14 Apr 2005 21:39 GMT
KCat, thank you so much for your input, it is a hard decision and what
to do. I'm so sick of being exhausted all the time! I am considering
plaquenil but I'm afraid of the side effects and afraid it might make
me worse off fatigued and of course the other problem of pregnancy. I
have yet to have any children and I don't want to have to take birth
control to avoid pregnancy as I'm still hoping someday and I heard
plaquenil is dangerous for the fetus so I hate to make that risk. Too
bad it just has to be so complicated. I was hoping there would be an
easy answer, alternative to help the fatigue or something. I do try to
get exercise and but I had to quit running because I also have chronic
urticaria, I break out in bad hives from exercise...it's so
frustrating!! I just want regular energy!
Thank you, Jacquie
KCat - 14 Apr 2005 22:31 GMT
> have yet to have any children and I don't want to have to take birth
> control to avoid pregnancy as I'm still hoping someday and I heard
> plaquenil is dangerous for the fetus so I hate to make that risk.

well - as far as I know it's only dangerous while you're pregnant.  That
would mean of course that you would have to come off of it if you began
actively trying to get pregnant.

It is a hard decision.  the side effects are not terribly common and you'll
know with most of them within a few days if it's a problem.  So it's not a
big investment in risk there.  The visual problems are not that simple but
again, not that common.  And once the drug is stopped, the problem does not
worsen.  That's why it's important to keep up with semi-annual eye exams.
thus far, oddly enough, my vision has actually improved but I think that's
really just because I was straining them so much at work (many hours over a
microscope some days.)

I am starting to get short arms. :)

> get exercise and but I had to quit running because I also have chronic
> urticaria, I break out in bad hives from exercise...it's so
> frustrating!! I just want regular energy!

Ah... i developed this symptom a few months ago.  What a pain!  Mine look
like mosquito or flea bites.  Itch like mad.  I love my rheumatologist but
she said "well, you could take a benadryl before you work out."

uh huh. And how many of us want to work out after we've taken a benadryl?
:)

I did try it actually - it didn't help. What did help (and let's hope the
guys aren't reading this closely) was exercising "native".  (blush).  heh..
guess you can't do that jogging or running though.

one thing you might consider.  The thing I find the most invigorating is
yoga.  It's a strange contradiction because while it relaxes you
tremendously, when you're through you have a lot more pep.  And you don't
have to do the Twister poses either.  Just the basic breathing exercises and
a few of the gentle stretches is enough to get me up and moving.  For a
while I used this as my way of getting out fo bed in the morning. hmm.. i've
had trouble with that a lot lately - so maybe it's time to go back to my
"Bed Top Yoga" stretches. I got a tape for $12 by that name and for someone
who was in very poor condition it really was simple and enjoyable stretching
that.

just a thought.  And of course, it needn't be yoga.  I do a sort of gentle
Pilates right now.  But any good stretching/breathing sort of effort even
for only 15 mins can give you a quick boost.  It's no cure, just a coping
mechanism. And good for us too.

Just some thoughts.

Best wishes,
kcat
cloud - 15 Apr 2005 00:30 GMT
Can not think of much of anything that removes the fatigue.  Perhaps more
exercise.  I say that with a grin as wide as the Cheshire Cat.  One must
rest when one is tired.  Fatigue is the number one commonality among
autoimmune diseases.  Could use the good ol' cold wash cloth on the face
routine.  I know that helps me sometimes.  Eat fruit also seems to help, but
the natural sugar hike is only temporary at best.  There may be some foods
you could try and steer clear from eatting. For example, forget what
chemical but in turkey there is a natural depressant and is why often people
just coach potato themselves out after a bit meal on Turkey Day.  There are
other foods that cause people to react that way so might want to do a search
on Google or something to see if there is a list somewhere.  Otherwise, as
far as i go, i just give in to the fatigue as I have learned best not to
fight it.  Sometimes those power naps can go a long, long way.
Always,
..? ???)) -:?:-
?.?? .????))
((??.?? ..?? cloud -:?:-
-:?:- ((??.??*

> Hello, I have been trying to over come my fatigue for a few years now
> and now that I have been told I mostly likely Lupus I'm wondering what
[quoted text clipped - 6 lines]
> Has anyone else here found any hope in curing or aiding the fatigue!?
> Thank you, Jacquie
herbwormwood - 15 Apr 2005 10:09 GMT
> Can not think of much of anything that removes the fatigue.  Perhaps more
> exercise.  I say that with a grin as wide as the Cheshire Cat.  One must
[quoted text clipped - 25 lines]
>> Has anyone else here found any hope in curing or aiding the fatigue!?
>> Thank you, Jacquie

I also had the fatigue much more when I was in paid work. I  was exhausted
most of the time.  
OK you want/need to work so  thats not a option.
Cloud says food, I agree.  Foods that are high in refined sugars can cause
fatigue in a healthy  person.  They cause drops in blood sugar. Try cutting
out refined sugar and junk food. Eat more raw  and whole food. There are lots
of nice recipe books that deal with such things.
Also rest is necessary if you are ill.
I sleep from about 10.30 pm  till 7 or 8 am most days and sometimes a nap
during the day too.
I have survived lupus 26+ years.
Also gentle exercise helps. I would not recommend any particular one, just
try a few and see what works for you. For example walking, yoga, swimming,
but don't overdo it.
As far as plaquenil goes, I couldn't tolerate it. It made me spew! But it
might be ok for you, if you and your doctor think it necessary.

Please come back ad let us know how you get on.
JQ - 15 Apr 2005 14:32 GMT
Thank you all. Maybe I do eat more sugar than I probably should and
every day microwave dinners for lunch. I can't wait to get groceries
this weekend, I will try to change my diet and see how it helps, maybe
get a juicer. I sleep 10 hours a night usually or atleast 8 minimum so
can't really adjust that to any more. Will try your exercise
alternatives, walking and running isn't any good because I break out in
hives too much even when I take allergy medicine. I lift free weights
but I'll try yoga, that sounds good and relaxing! :-)
Just thought maybe someone had a miracle cure ou there ;-) alternative
medicine, accupuncture or something easy.  
Thank you, Jacquie
herbwormwood - 15 Apr 2005 17:04 GMT
> Thank you all. Maybe I do eat more sugar than I probably should and
> every day microwave dinners for lunch. I can't wait to get groceries
[quoted text clipped - 7 lines]
> medicine, accupuncture or something easy.  
> Thank you, Jacquie

I was thinking about you and the food issue and it led me on to a couple of
other possible causes of fatigue. Is there any chance you could be anemic?
Many women are and this can cause fatigue.  Heavy periods and poor diet  can
cause it. Secondly do you have any iodine in your diet? A deficiency can
cause thyroid problems which can manifest with fatigue.
JQ - 15 Apr 2005 18:50 GMT
Hmm.. what food has iodine in it? I was thinking of a thyroid issue but
I had my thyroid checked and the only problem was very high thyroid
antibodies which shouldn't be a problem as my TSH levels are normal.
How can one tell if they are anemic? All I know if my RBC are normal
and WBC are always low. I don't think I'm anemic I do try to eat
decent, even when I was a marathon runner eating good training good I
was still always exhausted! It's odd I'm clueless!
Jacquie
Andy - 15 Apr 2005 20:33 GMT
>Hmm.. what food has iodine in it?

Seaweed!

In our country you can get table/cooking salt with added iodine.
Signature

Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!

herbwormwood - 16 Apr 2005 10:30 GMT
> Hmm.. what food has iodine in it? I was thinking of a thyroid issue but

It depends where you live. Iodine mainly comes from the sea, believe it or
not, so if you live far from the sea food you eat will not have natural
iodine in.  Salt in the U.S. is fortified with iodine.  Sea products contain
iodine, seaweeds are particularly good but seafood in general contains it.
There is a discussion on the newsgroup sci.med.nutrition about it at the
moment if you want to learn more.

> I had my thyroid checked and the only problem was very high thyroid
> antibodies which shouldn't be a problem as my TSH levels are normal.

Sorry I don't know about that but it could be worth discussing this as a
possible cause of fatigue with your doc. Underactive thyroid is a cause of
fatigue.

> How can one tell if they are anemic? All I know if my RBC are normal

OK you are probably not anemic then. However women who  have heavy periods
and poor diet can have non clinically low levels of red blood cells, that is,
not low enough to show up as abnormal on a test but low enough to make you
feel tired and weak particularly during time of the month. Ask the doc what
your actual red blood count is and post it here, I expect someone will have
an opinion on it. There is more than one kind of anemia but the most common
cause in women is iron deficiency, because we lose iron regularly.

> and WBC are always low. I don't think I'm anemic I do try to eat
> decent, even when I was a marathon runner eating good training good I
> was still always exhausted! It's odd I'm clueless!

Have you looked into chronic fatigue syndrome/M.E? Just an idea.
Keep us posted!
cloud - 17 Apr 2005 23:54 GMT
Becareful with the sugar, either way.  If limiting it from your diet and you
find out you are even more tired, there is a possibility you could be
hypoglycemic.  Not many people mention this but sometimes there can be a
reason for craving sugar and not being able to metabolize it.  Or somethin'
like that!
Any hypoglycemics here?
Always,
..· ´¨¨)) -:¦:-
¸.·´ .·´¨¨))
((¸¸.·´ ..·´ cloud -:¦:-
-:¦:- ((¸¸.·´*

>> Thank you all. Maybe I do eat more sugar than I probably should and
>> every day microwave dinners for lunch. I can't wait to get groceries
[quoted text clipped - 15 lines]
> cause it. Secondly do you have any iodine in your diet? A deficiency can
> cause thyroid problems which can manifest with fatigue.
herbwormwood - 18 Apr 2005 16:49 GMT
There is sugar in most food, fruit, vegetables, bread, you name it its
probably in it.
Our digestion breaks down food into sugars and starches and fats.  There is
a lot  of sugar in fruit and alcohol for example, but you won't see "sugar"
on the ingredient list!
Refined sugar foods like sweets and cakes can cause hypoglycemia. Sugars are
hidden in foods under labels like dextrose, maltose, fructose, sucrose, all
sugars. Refined sugars cause your body to produce more insulin, which causes
drops in blood sugar (hypoglycemia) and can eventually lead to diabetes.  
Unrefined foods release their sugars more slowly and so are less likely to
cause drops in blood sugar.
I have to be careful what I eat and have been tested for hypoglycemia as I
get very bad tempered when I am hungry!

> Becareful with the sugar, either way.  If limiting it from your diet and you
> find out you are even more tired, there is a possibility you could be
[quoted text clipped - 27 lines]
>> cause it. Secondly do you have any iodine in your diet? A deficiency can
>> cause thyroid problems which can manifest with fatigue.
cloud - 17 Apr 2005 23:52 GMT
Hey, that plaquenil would up ripping me a hole in my stomach too.
It was great going on an immunosupressant until I began to pick up every
infection known to mankind!
I didn't even know that yeast infections can grow on the outside too.
I'm sick, therefore I am.
Always,
..· ´¨¨)) -:¦:-
¸.·´ .·´¨¨))
((¸¸.·´ ..·´ cloud -:¦:-
-:¦:- ((¸¸.·´*

<snipped for brevity>

As far as plaquenil goes, I couldn't tolerate it. It made me spew! But it
> might be ok for you, if you and your doctor think it necessary.
>
> Please come back ad let us know how you get on.
BJ - 15 Apr 2005 20:20 GMT
Hi Jacquie,
I don't take plaquinil, so I can't offer any personal experience in regards
to that. I think almost all of people with lupus suffer from fatique. It has
always been one of my biggest problems, even when I am not really sick. I
think it might be worth trying plaquinil, if your doctor thinks it might
work.My understanding is that it is not one of the drugs that has
potentially dangerous side effects. You can easily discontinue it if it
isn't helping.
BJ-Sk. Canada

> Hello, I have been trying to over come my fatigue for a few years now
> and now that I have been told I mostly likely Lupus I'm wondering what
[quoted text clipped - 6 lines]
> Has anyone else here found any hope in curing or aiding the fatigue!?
> Thank you, Jacquie
Ruth Tay - 16 Apr 2005 01:01 GMT
> Hello, I have been trying to over come my fatigue for a few years now
> and now that I have been told I mostly likely Lupus I'm wondering what
[quoted text clipped - 6 lines]
> Has anyone else here found any hope in curing or aiding the fatigue!?
> Thank you, Jacquie

HI   Have taken plaquenil for over 18 years and at my routine eye
exam on Tuesday the Opthomoligist told me to stop taking it for
awhile.  For the past three days fatigue is unbelievable.  Really
wonder if it is the worry of the upcoming eye surgery in 2 weeks
or trying to cope with lupus without plaquinil.  Haven't had a flare
for almost a year and been able to do most anything except go out
side during the day.   Just some thoughts     rutb
KCat - 16 Apr 2005 03:36 GMT
> HI   Have taken plaquenil for over 18 years and at my routine eye
> exam on Tuesday the Opthomoligist told me to stop taking it for
[quoted text clipped - 3 lines]
> for almost a year and been able to do most anything except go out
> side during the day.   Just some thoughts     rutb

Ruth makes an important observation here - Plaquenil relief tends to creep
up on you and you often don't realize just how much it's doing for you until
you don't have it.  One day I was sitting and working and thought "hey... i
haven't had that hip pain in a long time!"  it was a pain I'd been living
with for several years.  Weird disease, weird drug.

Ruth, I imagine you're experiencing both the stress and the lack of the med.
I was once told that it stayed in your bloodstream for several weeks after
quitting it and therefore you wouldn't feel bad so soon.... but that's bull.
It may be there, but not in the doseage our bodies are accustomed to and in
need of.

18 years is a long time without major side effects.  I hope that ultimately
it isn't to blame and that you can go back on it and get relief.

Best wishes on the upcoming surgery.  You will be in my thoughts.
janers - 16 Apr 2005 17:45 GMT
Ah Ruthie Ruthie,

You made my day, not that you are having problems but you are posting and I
know you are still kicking  that lovely hubby of yours LOL.

I am sorry about the plaquenil problems and your eyes but the anticipation
of the surgery and stopping of the drug, sometimes makes for an emotion of
problems for some. Been there done that one LOL.
After your eye surgery and I wish you loads of luck and love with that, you
will feel much better and maybe you will have adapted to being with out the
plaq and another medication will help you.  But who's to say that you may
not get to go back on it either.  It's been done.

Again, so happy to see you but sad my dear friend is having problems.  We
think of you often and wish someday, someway, we will head west and meet
you...
Love you
janers
Nicole H - 19 Apr 2005 01:20 GMT
Fatigue is the most difficult for me to deal with.  I'm taking Provigil
twice a day... one in the morning and another at lunch.

Of course, trying to fix the sleep problem is the first approach but for
> Hello, I have been trying to over come my fatigue for a few years now
> and now that I have been told I mostly likely Lupus I'm wondering what
[quoted text clipped - 6 lines]
> Has anyone else here found any hope in curing or aiding the fatigue!?
> Thank you, Jacquie
herbwormwood - 19 Apr 2005 10:21 GMT
> Fatigue is the most difficult for me to deal with.  I'm taking Provigil
> twice a day... one in the morning and another at lunch.
>
> Of course, trying to fix the sleep problem is the first approach but for
> most of us, it doesn't work.  

Why do  you say for most of us it doesn't work Nicole?
Getting enough rest and sleep are really important and usually helpful,  Its
true it needs to be handled carefully but done properly it will really
benefit. We could even start a new thread on sleep and rest!
Personally I had a big revelation on sleep a few years back. I found that
smoking cigarettes kept me awake!  It really did, and the more I smoked, the
more I had insomnia! I did try after that to stop smoking in the evening, but
it was very hard to do. Eventually I gave up smoking and my sleep improved. I
also found any caffienated drinks kept me awake, so now I don't drink them
after mid afternoon. I also found that if my brain was stimulated too near
bedtime, I would be awake worrying about whatever. So I banned anything
stimulating to my brain after 7 pm. Conversations with people needing help
were particularly banned so I had to screen my phone calls and so on.
I also found an optimal time for falling asleep. If I went to bed too early
or too late, too late in particular, I wouldn't be able to sleep. I also had
to have a proper meal a few hours before bedtime. If I had low blood sugar at
bedtime I wouldn't be able to sleep. If I was too hot or cold I wouldn't be
able to sleep. If I had indigestion I wouldn't be able to sleep.
I need about 9 hours each night to function properly.
We all have our triggers for insomnia and the trick is to find them, this can
be quite difficult as they are often not obvious or we may resist the idea of
them being triggers (like me and the cigarettes).
Best wishes and good sleep to all,
Lynne

"JQ" <jpotvin77@hotmail.com> wrote in message
> news:1113507112.884037.122950@l41g2000cwc.googlegroups.com...
>> Hello, I have been trying to over come my fatigue for a few years now
[quoted text clipped - 7 lines]
>> Has anyone else here found any hope in curing or aiding the fatigue!?
>> Thank you, Jacquie
JQ - 19 Apr 2005 14:59 GMT
Hi Lynne, I think what Nicole was referring to was the fact that we are
all fatigued so often through out the day from Lupus not insomnia.
Therefore it's merely impossible to find a job that will allow for naps
in the day etc. Often people with Lupus need 10 hours of sleep a night
and we're still in need of a nap in the day which is nearly impossible
when we have careers lives etc. And at the same time it's almost
impossible to function without all the extra sleep.
Nicole mentioned provigil which is often used for narcolepsy, helps
keep people awake throughout the day. Not sure what the side effects on
it are but I'm gonna look into it. This may be something to help me out
- Exhaustion is painful and I'm so sick of being tired and having no
life. Only 24 hours in the day and I don't want to spend my whole life
sleeping or in pain trying to stay awake like normal people.
Thanks, Jacquie
Nicole H - 21 Apr 2005 02:25 GMT
For many of us, we don't cycle thru the sleep stages properly, thus we don't
get "refreshed".  So for me, I can sleep 20 hrs and still wake up tired
because I never got stage 4, don't cycle thru REM right, etc- a mess.
Then like JQ said, the lupus affects us and wears us out daily.

Nicole

> > Fatigue is the most difficult for me to deal with.  I'm taking Provigil
> > twice a day... one in the morning and another at lunch.
[quoted text clipped - 39 lines]
> >> Has anyone else here found any hope in curing or aiding the fatigue!?
> >> Thank you, Jacquie
itsyimhere@aol.com - 19 Apr 2005 15:23 GMT
Hi Jacquie
I've been on plaquenil for two years and it has helped with the pain
and fatigue.  I still have these symptoms, but I have more days out of
bed than before.  One doc I went to suggested an anti-narcolepsy drug
which I didn't try because it is very expensive.  Other than that, I
haven't heard of anything that can help.  I simply try not to overdo
anything (yeh, right) or else I'm down for the count for days.  I'm on
disability now due to having antiphospholipid syndrome.  BTW, my name
is Jacquie also (spelled the same way which is unusual.  Take care.
JQ - 19 Apr 2005 17:26 GMT
Hi thanks your your reply. I heard of plaquenil and I've been
questioning it, everyone on here has been very helpful but I'm leaning
towards provigil from my research online but I have to ask the
specialist first. I think in my case I'm afraid of plaquenil because I
want healthy babies if I ever get pregnant.
May I ask what antiphospholipid syndrome is? Because I heard something
like that in Lupus people and it may cause infertility, I'm wondering
if I have something like that as I dont' seem to be very fertile, just
waiting to see the fertility clinic.
Anti-narcolepsy drugs may be expensive but the cost of time in sleeping
so much for me is way more expensive and ya just can't put a price on
life and time with family :-)
Thanks, Jacquie
Andy - 19 Apr 2005 18:53 GMT
[]
>May I ask what antiphospholipid syndrome is?

Hughes' syndrome (antiphospholipid syndrome)

This is often called “sticky blood” in that the patients have a
tendency to clots both in the veins and arteries. The thrombosis may
present either dramatically or over a period of time with clots in major
vessels, even including the brain. It is vital that this diagnosis is
made (a simple blood test for antiphospholipid antibodies is available
in most major hospitals). Pregnant women who have antiphospholipid
antibodies have a tendency to clot the placenta and develop recurrent
miscarriages and these can be prevented by diagnosis and treatment.
Although this syndrome was first discovered in lupus patients it is now
recognised that many, if not the majority, of patients with Hughes’
syndrome have no other features of lupus nor will they develop lupus in
the future.

=======================

Anti-Phospholipid (Hughes') Syndrome

Anti-phospholipid Syndrome, (APS) also known as Hughes' syndrome or
"sticky blood syndrome" is an autoimmune disease that can manifest as a
primary illness or as a secondary condition along with other autoimmune
diseases like Lupus. It is characterized by thrombosis in both the veins
and arteries. The mechanism by which APS hypercoagulation is not fully
understood.

APS thrombosis by its very nature poses risks to various organs. This
can result in strokes, transient ischemic attacks (TIA), major organ
damage, and other serious complications. APS poses a special risk to
pregnancy and a patient is often discovered and diagnosed as a result of
multiple miscarriages.

Tests used to diagnosis APS are the ACA (anti-cardiolipid antibody) test
and the LA (lupus anti-coagulant) test.

Treatment of APS can range from a daily aspirin dose to strong
anti-coagulants such as coumadin and heparin.

>Because I heard something
>like that in Lupus people and it may cause infertility, I'm wondering
>if I have something like that as I dont' seem to be very fertile, just
>waiting to see the fertility clinic.

Worth checking for, but most reports say it produces miscarriage rather
than infertility.
Signature

Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!

JQ - 19 Apr 2005 20:23 GMT
Very informative. Thank you Andy!
Jacquie
herbwormwood - 22 Apr 2005 10:57 GMT
Hi Jacquie,
I also have antiphospholipid syndrome!
It was diagnosed about 15 years after my lupus diagnosis, I have both. I am
on warfarin and aspirin for the antiphospholipid syndrome.
I am often on a yahoo group specifically for  antiphospholipid syndrome  I
can post the address if you wish although  as you know its fine to talk about
it here too! Mine mostly affects my brain, I also cannot work in a paid job
because of it. I coped with work with the lupus   but the antiphospholipid
syndrome caused me to have major trouble concentrating and doing almost any
mental task under pressure, particularly with background noise . About all I
would have been fit for would have been routine physical work in a non
stressful environment, but with lupus affecting my joints so much, physical
work is out of the question! I would love to do gardening or outdoor cleaning
work because I love tidying things up, particularly in natural  places like
gardens, but I get exhausted after 20 minutes or less of such work! I do
voluntary work in adult literacy once a week.  As I am not a paid worker
there is no pressure there.
And occasionally I help my mum with her small garden.  I don't have my own
garden.  I try to be active as much as possible because I have early onset
osteoporosis and I don't want to get my bones any thinner. I am very scared
of having a fracture.
No one lives with me so even tho I don't have the responsibility of looking
after others, I have to do everything myself. If I couldn't look after
myself, I would have to go in a "home"!

> Hi Jacquie
> I've been on plaquenil for two years and it has helped with the pain
[quoted text clipped - 5 lines]
> disability now due to having antiphospholipid syndrome.  BTW, my name
> is Jacquie also (spelled the same way which is unusual.  Take care.
Stephanie Townsend - 20 Apr 2005 02:35 GMT
I have been on Plaquenil and found it extremely helpful as well with my
fatigue.  However, simultaneously I also took a number of months of
work/grad school -- I was exhausted still for the first few months but
gradually it improved.  I couldn't get enough sleep for the first few months
and then I noticed I slowly started to sleep less.

Also, my pain medication Tramadol seems to give me a burst of energy the
first couple hours after I take it.  It has been helpful not only in
alleviating my pain, but also it's like a shot of caffeine.  I have heard
this medication affects others this way as well.  Just a thought!

Steph

> Hello, I have been trying to over come my fatigue for a few years now
> and now that I have been told I mostly likely Lupus I'm wondering what
[quoted text clipped - 6 lines]
> Has anyone else here found any hope in curing or aiding the fatigue!?
> Thank you, Jacquie
 
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