Hi there! I am co-facilitator for a
support group/Branch in NC! We are always
looking for ideas for our meetings. Is
there anyone else out there who does this
as well and would like to trade ideas?
LadyBrannon
|
invisiblesoldier
New User, Becoming EHEALTHy
Joined: 15 Jul 2003 Posts: 6 Location: Pomona, California
Fibromyalgia Posted: 07-18-03 21:06pm
Hi,
If had bad experinces when my lupus and
fibromyalgia flared at the same time. Has
anyone gone throug that? If so, how did
you del with it?
Deborah
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Flare... Posted: 07-19-03 21:31pm
Hi there! I have had flares that are so
painful and joint involved that I was not
able to walk for days; could not even feed
myself.
At first, I would end up spending about a
week or so in the hospital; but now I can
usually head them off. I have learned what
to watch for when I begin flaring.
I am very big on trying to understand the
path my flares take. My doctor is very
happy with my being able to catch them as
they begin. She now has set up a plan with
me that I use to keep myself out of the
hospital.
The best thing for me has been hot soaks
(bath or hot tub). They allow enough
relaxation for me to have a few minutes of
peace when things are really bad.
I also took some fairly potent drugs for a
while...Percocet, Darvocet, Oxycontin,
Morphine...a few others only available in
IV form. I now try not to do that unless I
am in severe (8 or higher) pain. Mainly
because coming off the Oxycontin was a
nightmare.
Also, I have an incredible support system.
My husband, many times, took off work to
help me through the days. Or, if he was
unable, my mother or mother-in-law would
travel into town to help out. They really
helped me.
One of the best things I have learned is,
as soon as I am able, I begin walking. It
really works out the joints and muscles
and actually helps me pull out of a flare
quicker. I'm not going to lie...it hurts,
but in the long run it helps me more.
As always, you should run things by your
doctor first...
LadyBrannon
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rocky61
New User, Becoming EHEALTHy
Joined: 24 Jul 2003 Posts: 2 Location: LaPlace LA
learn to identify triggers Posted: 07-25-03 00:45am
The best thing to do is to learn what may
trigger your flare-ups. It could be poor
sleep, stress, weather, sunlight, foods
such as chocolate or caffienated
beverages. I have heard trying to cut the
carbs out of your diet and stick mainly
with protien and fiber rich foods. I
personally have not tried it yet. Also do
not sit still too long, stretch your
muscles, walk until your hips feel more
free flowing, try some deep breathing
exercises for about a minute to help you
relax. Believe me you sort of get used to
the consistent pain but those flares are
something else. If you work, try laying
down when you come home for about 20 to 30
minutes, not to necessarily sleep, just to
rest your body. Do some of the deep
breathing too. My mother-in-law has
Raynauds disease but says it is
practically non-existient now since she
had moved to the San Juan King area from
Illinios. Good Luck!
|
rocky61
New User, Becoming EHEALTHy
Joined: 24 Jul 2003 Posts: 2 Location: LaPlace LA
learn to identify triggers Posted: 07-25-03 00:46am
The best thing to do is to learn what may
trigger your flare-ups. It could be poor
sleep, stress, weather, sunlight, foods
such as chocolate or caffienated
beverages. I have heard trying to cut the
carbs out of your diet and stick mainly
with protien and fiber rich foods. I
personally have not tried it yet. Also do
not sit still too long, stretch your
muscles, walk until your hips feel more
free flowing, try some deep breathing
exercises for about a minute to help you
relax. Believe me you sort of get used to
the consistent pain but those flares are
something else. If you work, try laying
down when you come home for about 20 to 30
minutes, not to necessarily sleep, just to
rest your body. Do some of the deep
breathing too. My mother-in-law has
Raynauds disease but says it is
practically non-existient now since she
had moved to the San Juan King area from
Illinios. Good Luck!
|
PattiT
New User, Becoming EHEALTHy
Joined: 11 Nov 2003 Posts: 5 Location: Oregon
Support Groups Posted: 11-16-03 21:36pm
I am the newsletter editor for our
willamette valley support group in eugene,
or. We have had a rheumatologist, he
asked for 3 questions to discuss, an
acupuncturist on acupuncture and
relaxation, a red cross water instructor
on water exercises, a walking group
leader, a grief counselor, northwest lupus
chapter board member showed the lupus
video and spoke about what the chapter is
doing. Thes ideas are probably what have
already had but I hope one will help.
|
LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Posted: 11-17-03 22:04pm
Hi patti! Thanks!
We are in the middle of a huge change. We
are talking to doctors, counselors and
even had a mini-health fair.
I would love to see your newsletter!
Hugs,
ladybrannon
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