I can say I know how you feel. I feel like that right before or at the start
of a flare. it also includes brain fog. I am so sorry that you feel as if
you are dragging your body around, that is no fun at all.
One day they will have a cure for Lupus and we will be free of the brain
fog, the fatigue and all the yucky stuff that comes with Lupus.
Just let yourself rest. Listen to your body and let it rest. Remember that
there is a battle going on inside and your body is fighting a war and its
telling you that it is tired and needs to rest.
As far as hubby goes just do the best that you can. I know that some men can
be whiny and childlike when they are sick (this doesn't include the men on
here because men with Lupus and similar illness' are far more easy to deal
with)
Remember also that you can't take care of others until you take care of
yourself.

Take care,
RhondaM

Hi Ethyl, it's me!

I have had problems that I have attibuted to "gravity" as well.  I simply
have to lie flat on my back, or every cell in my body feels like it is
dying!

For me it was a thyroid problem.  I had blood tests... a TSH, and
anti-thyroid peroxidase and anti thyroglobulin, and it revealed
hypothyroidism.  A thyroid supplement pill really helped me a lot.

Mair

Hugs Paulette,
Take your thyroid med every day please. It's only a tiny pill.
Yes I was thin just before I was diagnosed for thyroid (for about 8 months).
The pill settles us "hypothyroid", so it's degrees of. Check your labwork later
after you've been back steady on your pill for a bit. The doc's likely to give
you "waht for" for not taking your pills.

I was hoping to start a "grazing" thread once BJ feels up to being back on the
newsgroup on a regular basis.
I was reading the other day that grazing through food is better for weight than
eating 2 or 3 larger meals.
Sounds like fun ! Where's the restaurant? <rhetorical> I'd graze a bit all day
instead of eating big meals and let someone else do the dishes and prep and
cleanup. <smile>

Best wishes with "new Morris". Speaking of markings, if it's male....
If it's female, beware pregnant cats looking for moms for their kits or a home
to birth in.
Moonlighting is great, it's like grand-parenting, someone else can have the
day-day.
Hugs
J

The good news ia that you don't have to drag MY behind, THAT would be
quite a job.
I am trying to make light of it because I feel the same way and Clara
(my wife) feels the same way about me as a patient.  I guess that means
that you should also be glad the your husband does not have lupus.
Right now I have been going all day and have run out of spoons.  I wish
that I could borrow tomorrow's and sleep all day tomorrow.

In any case I hope that you get lots of rest soon

David
"You can't depend on your eyes when your imagination is out of focus"

...Mark Twain

Hello, I'm new to this group.

I found out I have SLE just this week.

Have had chronic fatigue/mono for 16 years (waxing/waning pattern), and
don't know if the two are the same, one developing into the other, or if I
now have both. What I have now seems to me to be a continuation of the same.

The chronic mono has become less severe over the years, and I have learned
to live with it pretty well.

I have had so many symptoms over these years.

Initially I had extreme fatigue (that felt like muscle weakness) with muscle
soreness and burning (especially in the upper body and extremities, much
less noticeable in my legs),  and very painful pleurisy with trouble
breathing.  In addition, my heart would race at around 120 beats per minute
for hours at a time. Early on, the exhaustion allowed me sleep, but that did
not last.

After a couple years, the symptoms began to lessen in severity, and the
heart racing stopped, as did the pleurisy finally also, and eventually the
exacerbations lessened in length, and frequency; though I never could always
explain or predict why I'd have a relapse. In addition to the above, I also
experienced a mental fog, some headaches(possibly for a variety of reasons,
including a very mild pattern of vascular migraines, and allergies), and a
strange visual change that would start sometimes at the beginning of a
flare - similar to the color glow of photographs -  an enhancement of the
color which is very hard to describe.
All of this, and in the stronger episodes, there was also a feeling of heat
in the muscles, and sometimes a sensation of a tremor, though not visible
shaking. I'm not sure when it started, but I began to notice my right eyelid
would feel like it was sagging when my muscles became tired, though it was
just a sensation, and not a visible sagging.

The syndrome began with what was called mononucleosis, though the monospot
was negative. I had a high epstein-barr titer and a specked ANA, negative
CMV, and no one ever explained the compliment testing that was done then.

Now, I have a homogenous pattern ANA, with low compliment testing, a low
white cell count, and  a positive anti-DNA. That is all I know right now.
More testing is being done, and more results are yet to come in from what
was already done.

I had non-hodgkins lymphoma about 5 years after the chronic mono started,
and  went through chemo and radiation, actually feeling better during and
immediately after the treatment.

My heart beat stopped the racing it did 14-16 years ago, as I mentioned
before, but when my lymphoma was diagnosed, I experienced instead a
fluttering in my chest one night, and the sensations of a flip-flop, and
momentary fullness in my chest and throat. I'm able to palpate the
irregularity at times, when I feel the fullness and flip-flop sensation, but
I never have any other complaints with it. I can go for long periods and not
feel a thing, and then one day, I'll notice it again. I've tried to pay
attention to medications and to caffeine, but can't relate the changes to
either.  When I'm at the doctor's office, or on the rare occasions I've had
an EKG, the irregularity wasn't present, and I haven't made an issue of it,
fearful of the consequences that might come of a diagnosis (I need to have a
job), as well as the fact that I am asymptomatic when it happens, and I'd
rather not be on medication if I don't absolutely have to do it.

I have developed chest  wall complaints, sometimes quite painful, in the
last several years, and pleurisy has been my companion most of the last
year. The fatigue, muscle aches and burning, and eyelid sagging sensation
make up the primary recurring symptoms now, though I do also get the visual
glow, and tremor sometimes, too.

In the last several years, my joints have become problematic (apparently
more bursitis and tendonitis, with some osteoarthritis, and not easily
attributed to SLE (more related to "over use" says the rheumatologist)).

I've had a nasal septal ulcer for 10 years, and don't know if that's lupus
related or not.

I also get small circular, red, raised, and scaling spots occasionally, too.
I've had them on my arms and legs (not elbows or knees), one at  a  time;
but I've always thought them to be mild psoriasis, though I only began to
see them in the last 10 years, after recovery from radiation and chemo.

My eyes have been dry, requiring artificial tears for ten years, and in
recent months my mouth has become dry on the upper palate, mostly noticeable
when I try to eat a sandwich. My eyes have been extremely sensitive to light
for many years. My face turns red hot easily for various reasons, including
room temperature, exertion, and embarrassment, and my muscles burn when
exposed to even warm inside lighting. Yet I don't believe I've ever had a
butterfly or malar rash like I've seen in  the  SLE literature. I have had
moderately severe seborrheic dermatitis in my scalp most of my adult life,
and atopic dermatitis around my nose for many years - but it is scaly, and
easily controlled with gentle, liquid facial soap washing twice a day
((steroid cream would probably make it disappear (at least with consistent
use), but I haven't made a habit of using it)).

Parts of my abdomen and back have become partially numb, in the last year.
The abdominal area started about a year ago and seems to extend down from
where the chest wall soreness stays so often, but the  numbness in my back
is further up, mid-back.

I don't know what to think about what I've been told. I don't know what to
think of all my body aches and complaints, either. The rheumatologist is not
easy to talk with, not a conversationalist, and doesn't explain what she
does say. I don't know what I'm going  to do, or be able to do to help
myself or change my lifestyle .
If there is risk to various organ deterioration (I know nothing of the
extent of things as they are), I will need to try to avoid things that might
trigger relapses, but I can't imagine giving up work that I must do to pay
my bills.

Your comment here about gravity not being your friend sounds like what I
call "mud in my blood". I feel heavy, like if I could just lay down, I would
feel such relief, and if  I can, I do feel relief. Sometimes, just 15
minutes lying down can make such a difference, but when one is at work, or
otherwise involved, it isn't possible, so I've learned just to suffer
through, because I felt I had no choice. For me, the extreme feelings do
pass in time too, when I am forced to work through them, so I've learned to
hold on to that hope, and not to allow myself to give in to the moment.

Please respond with any insight or guidance, given your experience.
Thanks, JB

"JB" <apreis@pokynet.com> wrote in message news:...

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