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Coping With EMS
By
Jinx Engstrom
My name is Jinx Engstrom, a board member of NEMSN and I have lived in
Minnesota all my life. I am the
mother of three adult children,
two of which were still living
with me when I became ill in the
summer of 1989. My doctor could
not figure out what was wrong
until in November on our local
news, there was a story about a
woman in New Mexico who was ill
from taking L-tryptophan. I saw
my doctor the next day and told
her I took l-tryptophan and was
still taking it. The mystery
was solved about what had
happened, but the solutions for
the problems caused by the
contaminated l-tryptophan have
never been clearly developed by
the medical community. I took
Prednisone for 9 years and it
caused a lot of new problems but
may also have saved my life. I
also have taken Immuran for
about 10 years and it does make
me feel somewhat better.
EMS
is a very difficult disease to
manage but I feel I am able to
do fairly well after many years
of trial and error. I have used
acupuncture, Chi Gung exercise,
Manual Lymph Drainage (type of
physical therapy), breathing
exercises, humor (I try to find
something that makes me laugh
very hard a few times a week,
which helps keep a more positive
brain chemistry), walking daily,
and weekly massage which
includes myofacial release,
manual lymph drainage,
myosequence, and cranial sacral
therapy. It is difficult when a
flare up occurs and I feel
really bad, but I try to get up
and about every day, even when I
do not feel well. (I have
discovered lying around makes my
muscles get worse very quickly.)
It helps me feel better
overall. I still work full
time, but some days are very
difficult. Some days the pain
gets so high, and the intestinal
distress so frequent, that I
just have to take part or all of
the day off as sick time. I
have learned that my well being
is up and down all the time. I
try not to focus on how awful
the down is, and try to
recognize even very small
improvements, so I can
appreciate the fact that getting
a little better is so much
better than getting a little
worse. I also try not to focus
on the fact that I have not felt
really well since 1989, it is
too depressing. However, on
days when I am worse, I pamper
myself and cope until it
passes. It has taken me a long
time to get to the point where,
each time it gets worse, I do
not freak out and think my life
is all down hill from here. May
and October are always worse for
me, possibly because we have
very extreme weather changes
that involve wildly fluctuating
barometric pressure. I now just
say "Oh, it is May, this too
will pass, June is right around
the corner."
Every day, I try to do stretching exercises with a tape called “Morning
Chi”. It is about 20 minutes of
gentle stretching and moving, to
kind of wake up the muscles and
stretch them out. It is calming
at the same time it moves all
the muscles. I have become more
flexible and limber by using it.
Next, I walk my little dog for 20 minutes. Then I eat and lay down to
wait for the morning intestinal
distress caused by Immuran, the
immuno-suppresant chemotherapy
that I have been on for 10
years. When it passes, I get
ready and go to work. I have a
flexible work schedule as a
social worker, which was granted
me due to the ADA law.
I have an ergonomic workstation and I wear wrist braces to sleep in at
night, which helps me be able to
do all the computer work I need
to do for my job. I can get up
and move around a lot at work
too. I had a job, which
required standing up all day in
1989. I have never been able to
do a job that requires standing
up all day again.
One day a week I receive manual lymph
drainage from a physical
therapist. Lymphedema is a
problem for me since I have had
EMS. I took steroids
(Prednisone) for 9 years.
During that time I began
retaining fluid which is a
pretty common side effect of
Prednisone. One day I was
comparing my badly swollen legs
to a friend who had several
lymph nodes removed as a result
of surgery for cervical cancer.
She was receiving Manual Lymph
Drainage to try to reduce the
swelling by redirecting the
drainage around her missing
nodes. Her Vodder trained lymph
therapist agreed to try to see
if it would help me. It was a
dramatic improvement. I
consequently had a
lymphocintagram to see if I had
missing, damaged, or
malfunctioning lymph nodes. I
did not, but they found my
system was very slow. It took 4
hours to travel from my feet to
the top of my body, when it
should have taken only 1 hour.
My HMO now pays (I pay a co-pay)
for one therapy treatment a
week. It has improved the
scleroderma areas and increased
circulation. I have ankles
again! I had 14 lymph nodes
removed last summer with a
hysterectomy for uterine cancer
so now I have the biggest
problem in my mid body. I am
now trying to regain my waist.
My therapist has now completed
Bruno Chickley manual lymph
drainage training and I find
that method even more helpful.
I also wear a compression garment in the day
and a legacy type quilted
garment at night to keep the
lymph system stimulated and
working better. I feel much
better when I do all this.
I also pay for massage therapy, once a week,
which has helped unstick the
sceleroderma. She uses several
different modalities such as
myofacial release, myosequence
(has improved muscle
functioning) and cranial sacral
massage (has improved joint and
nerve functioning) as well as
the Chickley lymph drainage.
Check out
www.vodderschool.com for more information
about their technique and where
to find a therapist in your
area. Also
http://www.susanmonkrmt.com/lymph.html
to learn more about lymph
drainage and how it helps the
immune system. See the
following site to learn more
about how muscles heal.
Http://www.bodyinbalance.com/muscular_injury_muscular_pain.htm
http://www.lymphnet.org/
To check out the National
Lymphedema association.
In Minnesota, our legislature
passed a law that HMOs and other
health insurers must cover
lympedema treatment for people
recovering from cancer. I asked
my rhumatologist to refer me.
He did not think the HMO would
cover it but they did. I have
been getting treatment for at
least 4 years now. I am
grateful for the treatments, as
I feel a lot better with them.
For muscle spasms: Dr. Daniel Clauw did
research on using magnesium to
mitigate muscle spasms. I
believe his article is on the
NEMSN web site. I went from
having many spasms a day in
various muscles, including my
tongue, to having only an
occasional spasm in a week,
usually in my back. I get one
gram mag. sulf. intramuscularly
twice a week. There is an over
the counter product called slow
mag that I used first to see if
it helped, it did but if I took
enough to stop the spasms, it
messed up my intestinal tract.
So by putting it into the muscle
system, it bypasses the
stomach. My understanding is
that muscle spasms occur when
the muscle is trying to get
magnesium out of the blood
stream.
I have suffered with terribly
dry skin all my life but since
EMS it has gotten even worse. I
do not know if others have this
problem but I have found a
wonderful solution. I call it
Mary's Magic Potion Lotion
because I obtained the recipe
from my friend Mary. You can
get all of the ingredients at a
coop food store most likely.
2 Parts almond oil
2 Parts aloe vera
3/4 of 1 part glycerin
a few drops of a fragrance oil
if you want a fragrance. (I use
lavender oil, which is one of
the few I am not allergic to)
It does not stay in suspension
so each time you want to use
some you need to shake the
bottle a couple of times. I
just love it! I was having some
serious skin problems with open
sores that were not healing and
within a couple of days I
"healed up and haired over” as
my grandma would say.
I find it particularly effective
on the hard scleroderma skin. It
softens it up.
I was worried that I was
becoming allergic to allot of
the chemical additives that all
the commercial products have in
them because I would try a new
one and it would be good for a
week and then I would get a rash
so I had to quit. This has no
mineral oil either which I
decided is not working for me
anymore.
I put it on after my morning
bath and before I go to sleep
for problem areas. I need to
let it soak in and dry before
dressing but it only takes a
couple of minutes.
It does not keep forever because
it has no preservatives so make
in small batches and refrigerate
the aloe vera gel when not
using. I keep it for a month or
so before using it up.
Since August of 2003 I have had
two different kinds of cancer;
endometrial (uterine) and
breast. I had surgery to remove
both and am doing well now. I
have been taking immuran for
several years and it may be
making it difficult for my body
to fight the cancer cells and
allows them to proliferate.
I hope others of you will share
your stories and or the things
that help you cope with EMS for
future newsletters.
Jinx
Just a few
things that I found that have
worked
by Julie Ann Allender, Ed.D.
One of things that we talked
about on the Board is sharing
some of the things that we have
found that have been successful
in helping reduce pain or
symptoms of EMS. Any of things
that I am suggesting have been
slowly learned and developed
through a lot of good support
people that I have and work for
me. Whether other people choose
to try them or not is entirely
up to you and hopefully if you
try these, you will have the
same success rate that I’ve had.
One of the most important
things I find is exercise.
Swimming is one of the only ones
I can do and keeps my arthritis
at bay as well as the swelling
in my feet and legs to a
minimum. I swim 1.5 miles twice
a week religiously. If I miss
one of my swims, I pay for it
dearly. I also walk four
15-minute walks every day and do
yoga at night before I go to
bed. I find that all three of
these things are critical in
keeping myself functioning pain
free.
I also find that taking
certain supplements such as milk
thistle, magnesium and vitamin
B-complex 100, vitamin C and
gingko are critical. I take the
milk thistle to keep my liver
strong. I take magnesium to
reduce and eliminate
neurological pain and muscle
spasms. The B-complex reduces
anxiety and keeps my system
strong. The gingko helps with
memory impairment and the
vitamin C keeps my immune system
working well.
I have also found recently
the use of the electric
acupuncture machine from Emjoi
has been wonderful. It has
removed pain that I’ve had in my
hip for the last ten years and
has given me some real hope that
maybe I can keep that pain away.
It also works for other areas
such as the headaches.
Another small tool that I use
that’s a little wonder machine
is the Zapper, which is a radio
frequency machine that you hold
the elements in both hands. I
have found that since I have
become a strep B carrier, that
instead of having to take
antibiotics on a daily basis, I
can control it with the Zapper.
The Zapper rids the body of
certain bacteria & bugs.
Bio-energetic testing also
known as Phazics are treatments
generated from a computerized
biofeedback mechanism performed
by Dr. Jeffery Marrongelle, a
chiropractor/nutritionist, in
Schuylkill Haven, PA. It has
increased my energy levels back
to almost a normal level. I
thought I would have to live
with chronic fatigue for the
rest of my life, but after 2.5
years of Bio-energetic testing I
now feel almost normal when it
comes to my energy levels.
I am at present starting to
work with a Family Eye Clinic
with Dr. Eric Singman and Dr.
Donald Blackburn in Lancaster PA
in getting treatment for
strengthening the eye muscles.
Reading and driving became
difficult to impossible which
professionally has been
disastrous. Just recently &
after ten years of searching,
seeing double, prisms that
didn’t help, etc. I have found a
group of neuro-opthomologists
that do rehab therapy. They
claim it is a lack of eye
convergence by each eye. The
results I won’t know for another
6 months.
I personally want to thank
people like Mary Ann Ashcroft
and Lee Garwood for all their
suggestions and help in my
constant search for new things
that has helped decrease and for
some eliminate the EMS horrific
symptoms and pain.
I consider myself very
lucking in that I know that in
1989 I almost died from EMS and
feel that the things that I’ve
learned, discovered,
experimented with have all
sometimes been scary and risky,
however the success rate that
I’ve experienced is all that I
need to go forward with the
things I’ve done.
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