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.
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
day, I try to do stretching exercises with a tape called ďMorning ChiĒ.
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
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.
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.
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.
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.
www.vodderschool.com for more information
about their technique and where to find a therapist in your area.
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.
To check out the National Lymphedema association.
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
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 overĒ as my grandma would
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
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.
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 Iíve 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
I have also found recently the use of the electric
acupuncture machine from Emjoi has been wonderful. It has removed pain that
Iíve 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 thatís 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
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 didnít 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 wonít 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 Iíve learned,
discovered, experimented with have all sometimes been scary and risky, however
the success rate that Iíve experienced is all that I need to go forward
with the things Iíve done.