DOM'S
NEWSLETTER
May 26,
2007
A compassionate,
informative newsletter for people with FMS/CFIDS/ME
(fibromyalgia,
chronic fatigue immune dysfunction syndrome and myalgic
encephalomyelitis)
There are
17 topics below in PURPLE. My
comments are in TEAL.
If you are a male with fibro,
see #17 below. My personal update is #20. -
Dominie
1. READERS
WRITE
"I have found your website www.fms-help.com - it is so
useful, I don't feel like I am the only one
anymore."
"Just wanted to thank you for your
newsletter. Such a great way to bring together the people from all
over the world who are struggling from the same darn
thing!"
[This illness affects people with different diets, cultures,
lifestyles and genetics, yet we have exactly the same symptoms! So I think
this illness is caused by a virus that affects the glands in the
brain. See my homepage www.fms-help.com - check out the links about viruses and mycoplasma
infection.]
"I found your site extremely
helpful."
"I was so very glad to stumble across your website www.fms-help.com/marriage.htm (Marital Harmony). I wanted to ask if
this was still available in a paper copy? Thank you so much for devoting so much
of your time and wisdom." [Glad you found my
marriage booklet page. It is not available in hard copy anymore, but you
are welcome to print it out from my site.]
"I am also a fibromyalgia survivor??? I was very interested reading
your web site www.fms-help.com. I
learned a lot and still want to know
more."
"The wealth of information you provide is beyond
helpful, but even more than that, knowing that there are women like you standing
tall for the rest of us suffering with Fibro, CFS/ME, and all the other
invisible illnesses, fills with me with pride and confidence that we will be
heard, and that one day, there will be treatments available, and hopefully
cures."
2. ALL IN YOUR
HEAD?
From a reader--
"My bloodwork came back 100% normal. (However, I was exposed to
Epstein Barr Virus at some point because I did have Mononucleosis) So, my doctor
wants a complete psychiatric evaluation. I told her my
therapist diagnosed me with "Panic Disorder," but after being diagnosed with
Asthma, she said it's possible I was just having severe asthma attacks.
So, now my doctor thinks I am nutcase because nothing is wrong with my
bloodwork and yet I am always getting sick and can't handle seem to handle
stress. I told her I was moving and she said, "well, maybe the doctors
up there will be able to find out what's going on with
you." Why do they make you feel like you're a
wacko? I've actually been exposed to Epstein-Barr, have all the
symptoms of CF/Fibro and even have a family member who has CF/Fibro and yet
they are still trying to convince me the problem is in my head.
It is so frustrating. I went for a massage yesterday and it "hurt" for the
first time. My calf muscles are so tender and my upper arms are the same
way. My fingers feel like they have arthritis. A 25 year-old woman
should not have all these ailments and I'm not making this up. Everyone in
my family notices how I'm always stressed and never have
energy. Whenever there is a family event, I usually get
so tired I need to lie down on the couch. My "older" relatives don't
understand this. It's not like I'm depressed either - I WANT to do the
things I once enjoyed, I just don't have the strength. That's
what my doctor doesn't understand. Grr. Sometimes I feel like saying to
her, "if you didn't have the energy to play golf anymore would you be HAPPY
about it?" She just doesn't get it."
[This really
gets my dander up! I have had the same experiences as this reader.
If you've had a bad visit with your doctor about your FMS/CFIDS/ME
symptoms, see my good doctors/bad doctors page at www.fms-help.com/doctors.htm. You have lots of
company.]
3. REMOVING TICKS
Reader 1--
"I had a pediatrician tell me what she believes is the best way to
remove a tick. This is great, because it works in those places where it's
sometimes difficult to get to with tweezers: between toes, in the middle of a
head full of dark hair, etc. Apply a glob of liquid soap to a cotton ball.
Cover the tick with the soap-soaked cotton ball And let it stay on the repulsive
insect for a few seconds (15-20), after Which the tick will come out on it's own
and be stuck to the cotton ball When you lift it away. This is a much less
traumatic method for the patient and easier for yourself. Unless someone is
allergic to soap, I cannot see that this would be damaging in any
way."
Reader 2--
"I just watched Dr. Oz on Oprah today and this was one of the
questions. He says to remove it with a tweezers by lifting the body
slightly and pulling straight out BECAUSE if you tick off the tick (HA) by
smothering, burning, or whatever, it releases all the bad stuff into your
system from it's body area - not the mouth - SO, the most important thing is to
get the body. If the head breaks off, not to worry. It will come out
eventually....nothing in the head is infectious."
[Ticks spread Lyme
disease which has symptoms like FMS/CFIDS/ME, and it might even be the same
virus.]
4. USING A CPAP
MACHINE FOR SLEEP
[revisited - search
topic by using the Google box at the bottom of this page]
Good suggestions from a
reader--
"I had the same diagnosis of sleep
hypopnea and I would caution your reader a few things about the
CPAP that took me a year to learn. First off, make sure to get a mask
that covers both nose and MOUTH. I got the nose only one and woke up
feeling worse and worse each a.m. That's because like your reader I was gasping
for air w/ my mouth during the hypopneas. Second, make sure to get one with a
humidifier in it. Otherwise the pressure of the air blowing
down your throat dries your membranes so bad you wake up often feeling your
throat is stuck together. Thirdly, which I am still working on myself, I don't
think the CPAP does a lot of good without having oxygen in it
because it's just blowing air down your throat. To me it just irritates my
allergies and asthma. So now I'm going back AGAIN to try to get oxygen added to
mine. Finally, she may want to have a CT scan of her sinuses. I had one and
found lots of genetic abnormalities in my sinuses which keeps me from breathing
throuth them properly - again why I needed the mouth mask. Also be prepared that
the mask itself is quite uncomfortable, causing pressure points on your
forehead, cheekbones, and around your nose. So I'd always wake up w/ lots of
pain in my face and a headache where it was on my forehead. Finally I read
somewhere that you can take moleskin and cut pieces where the
mask hurts and place that on your skin between the mask. For me that really
helped! And you don't need to have the mask real tight, which they did not tell
me. It doesn't have to be a perfect seal and a little leakage is OK.
Hope this helps your reader! It took me a year to learn
all this so I figured I'd share in case I could save her the
frustration!"
5. WHAT IS
M.E.? WHAT IS CFS?
Got this excellent link
from a reader--
INFORMATION FOR CLINICIANS AND LAWYERS
Description, Symptoms, Precipitating Factors for
M.E./CFS
[Just want to mention
that CFIDS (chronic fatigue & immune dysfunction syndrome) is a
term used in the U.S. Other countries use the term M.E. (myalgic
encephalomyelitis). There is a movement now in the U.S. to use M.E. also,
since the word "fatigue" is vague and can be a symptoms of any number of
illnesses.]
6. DOC WON'T
PRESCRIBE PAIN MEDS
From a
reader--
"Today I had to phone my doctor for something
for pain, whom I had give some FMS info to, among others, and now he tells
me there is no more he can do for me as far as FMS!!?? Not to burst our bubble
or anything, but I felt a major set back! Maybe I shouldn't have tried to make
him more aware of FMS? Not that he has helped me in the 1st place, to be quite
honest with you. He won't give any pain meds for FMS, only
anti-inflammatories? And our local pain management office
doesn't take people with FMS???? I just don't know what to do when
I have a really bad flare up? Suffer,Suffer,Suffer! I guess that's all I
can do?!"
[I feel for
you! Anti-inflammatories can help some with the pain. I made a list
of things that helped me with pain at www.fms-help.com/what.htm - scroll toward the bottom of the page and look for the RED words. I had severe FMS pain for over 14
years www.fms-help.com/fibro.htm. I
mostly battle fatigue now. If you need emotional support after a "bad"
doctor's visit or encounter, I invite you to visit my page at www.fms-help.com/doctors.htm.
Most of us with FMS/CFIDS/M.E. have to educate our doctors about this
illness....strange but true--despite this illness being almost at epidemic
proportions now. Many doctors still are not sympathetic with our
plight!!!]
7. QUESTION FROM
READER
"Has anyone tried
and/or had success with (univera life science products):
ageless
xtra & regenicare for joint care? I've tried the re-liv
products
with no substantial results so I'm a bit leery, however this
product is
gifted for the first 2 week trial. I suffer with
myofascial pain and am
recovery from a spinal
fusion so I don't have the fibro diagnosis, but I
certainly
have great pain in my body."
8. EXERCISE
LEADS TO EXHAUSTION
From a
reader--
"On number 8, where a reader says her doctor
just has signed her out for 10 weeks. Please tell her to either change her
doctor, or go to an Immune Specialist. They will run
tests on her to see if she has Fibro, or eliminate numerous other diseases, and
she might have CFS. Don't stay at with a doctor who refuses to
face the facts that she has a patient with a serious illness.
And I have a problem with exercise
and exhaustion myself. I joined Curves back in
August 2006. There are times, that I can go, exercise and come home, and I
am able to do some things around the house or yard. But most of the time,
I am exhausted when I come home from a 30-40 minute exercise routine.
There have been some times, when I come home, take off my exercise clothes, put
my nightgown on, and crash for several hours. During the months of
January-March, I was so exhausted, that if I could get to Curves once a week, I
was doing good. Exercise does set off CFS flare ups, and takes
away whatever I have gained through the workout.
I spoke to my doctors about my going to
Curves, and they thought it would be a great idea, to help me lose weight.
I am seeing them next week to tell them, that I love going there, but having CFS
really does effect me when I exercise. It is depressing, where I want to
lose weight, and would hope that exercise would help with the CFS, but
it doesn't. But I am not going to give up on it. I want to
lose, so I can feel better, and I hope to return to work someday!"
9. FLIES
SHOW LINK BETWEEN SLEEP & THE IMMUNE SYSTEM
From a
reader--
10. M.E.
OUTRAGE
From a
reader--
"I am outraged that M.E. has not been ‘exposed’ prior to this
time. (newsletter May 15
www.fms-help.com/051507.htm). CFS is the ‘original’ name for
Americans, but M.E. has always been the “original”….from the
beginning of the entire disease. I have all but two or three of the
symptoms of this thing and have been to all of the different specialists (one
for each organ and/or disease) – each of them wondering what is going on. I have been diagnosed with M.S. and
Scleroderma as well as CFS and FMS and arthritis – so many I cannot
recall each one. When ALL of them
equals M.E. – and each time I
receive another doctor’s opinion, I look and feel a bit more foolish – after
all, WHAT is going on with me? I
keep getting more and more symptoms – and keep getting worse and worse,
sicker and sicker…..and to be told to EXERCISE makes me BURN because
I cannot DESCRIBE the pain I have for WEEKS following even SLIGHT
exercise. And all the time, THIS information has been available. I am angry. Why is this not FRONT PAGE
news?"
[GOOD QUESTION! I'm not into
conspiracy theories, but it almost seems like something prevents this illness
from coming into the forefront of society's consciousness! Sufferers
need to continue to talk with our doctors, family and friends - anyone who will
listen - about this illness. I have taken great risks lately to expose the
nature of my health situation to people I work with and other significant people
in my life. At this point, I feel I have nothing to lose. I feel
that I MUST get the word out. You never know.....they may meet another
person with FMS/CFIDS/ME, and at least they may understand a lot better from
having known me and my struggles. I just printed out the article at
http://www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm#History (see Topic #5 above) to take to my doctor later this
week.]
11. A
HUMAN BEING - NOT A HUMAN DOING
From a reader about her experience with
FMS/CFIDS/ME--
"I realise that I
should have said NO more often but we're always so clever with
hindsight!! Having been brought to a halt, I realise that it's
helping me to grasp more and more that our success in life is less about what we
do and more about discovering who God is and who He has designed us to be. I
lived life many times giving in to expectations from those around
me and in having to stop and take stock of my life, I've learned
that I lived life alot as a human-doing instead of a
human-being and that God wants me to learn to just BE and I am actually
thankful for the opportunity to do so, strange though it is that sickness has
brought this about. I'm excited about this journey. Even though I'm
restricted physically, I'm learning to be thankful to the Lord
for the simple things in life. I'm learning who the true
friends in my life are and learning to be grateful for the people God has given
me. I want to make my life count and I've prayed that God would use this journey
that I'm on to give me more compassion for people and I believe
that already I have a different approach and understanding of chronic
illness."
[So many of us have discovered a
bright lining to a very dark cloud, much like this reader has. I know that
I have become a much more compassionate person from having an affliction in my
life. Suffering has made me more understanding of others and their
struggles - whatever form they may take. This is one good thing that has
come out of my illness, and also the privilege of writing this newsletter for
the past 11 years and getting to know my wonderful
readers!]
12. "I'D RATHER BE
WORKING"
Book suggestion from a reader--
"The author has
FMS.... I'd Rather Be
Working: A Step-by-step Guide - by Gayle Backstrom - 2002 - 224
pages Offers self-assessment exercises, real-life stories, legal
information, job hints, and practical advice to help
the disabled and chronically ill... www.books.google.com/books?isbn=0814471153."
13. GENETICS &
FIBRO
[revisited - use Google Search box at the bottom of this
newsletter]
From a reader--
"There are auto
immune disorders on both sides of my family, but especially my
father's. I believe that my grandmother who had pain and constant fatigue
had Fibromyalgia and perhaps CFIDS. On my mother's side a great aunt was
accused of being a hypochondriac because she had to be
bedridden much of the time and doctors could not figure
out her problem.(does that sound familar!)"
[Oh, yes! Back in the "olden days"
those folks were called "invalids."]
14. CORTISOL &
SERIPHOS
From a
reader--
"I just wanted
to drop you a note telling you about something that I found to be helpful
for sleep. Maybe others could benefit from it as well. It is called
Seriphos. When taken around 4-5p.m., it lowers
your cortisol, resulting in a feeling of "winding down" for the
evening. I had forgotten what that was like because I was always
tired. I FINALLY found a doctor who is willing to work with me.
Although he dismisses the concept of CFS, he feels there are many people
who are hypothyroid, but it isn't showing up on the typical blood
tests. He said I had all the classic signs of hypothyroidism and
put me on a natural thyroid replacement (even though the last twenty-some
doctors I saw were convinced I had CFS since they couldn't find any other
explanation for my constant fatigue.) We are still working on getting the
perfect dosage for me, but between the Seriphos and the Westhroid, I am
beginning to have a lot more energy. After only 2 weeks on
the Seriphos, I was able to cut my sleep med's in half. After 3 1/2
weeks, I am able to sleep without taking anything! I still wake up tired,
but this is the first time in many years I have been able to sleep without
meds. It makes sense to me that many who develop
CFS/FMS after undergoing stress, may be suffering from adrenal exhaustion.
It seems to put the adrenals in overdrive and then they just can't
continue. It seemed I kept pushing myself to get through the day and then
I couldn't wind down at night. It was as though it took all day for my
adrenals to get going and then it was time to sleep, so the adrenals are like,
"huh?" and didn't know how to slow back down during the night. With
adrenal exhaustion, so many things slow down, including the thyroid. This
is what I think happened to me. I had so much on my shoulders, was
under a lot of stress, which put pressure on my adrenals until my body
just broke down in exhaustion. So perhaps other
people could also benefit from the combination of adnenal and
thyroid support. I honestly hope
so."
15. AMBIEN - GENERIC
NOW AVAILABLE
16. CORVALEN & ENERGY
From a reader--
"I have been on Corvalen for
two months now and my energy levels are better. I ordered first from Corvalen
Labs but have found that Swanson carries the same EXACT product and is half the
price. I even called tech support at Swanson to confirm this and found out that
Corvalen makes the product for Swanson!"
17. MEN WITH
FIBROMYALGIA
Ladies, if we
thought it was bad to suffer the social stigma of a chronic invisible illness,
consider the plight of men with FMS/CFIDS/ME. They are
generally misunderstood and criticized by everyone. They are
perceived as lazy and letting their families down by not being providers and
breadwinners. See www.fms-help.com/men.htm - some of my male readers with fibro have submitted
their stories. Also see
www.menwithfibro.com/home.html - here's a great quote from
this site: "Someone asked me once what it is like to be a
man with fibro, and I said, it is just like Samson, with his hair cut off.
Weak, getting weaker, tired all the time, can't do anything you used to
do..."
19. MUSCLE NOISE COULD REVEAL
DISEASES
From a
reader--
20. DOM'S
UPDATE
Well, an
interesting thing happened this week. During a medical appointment, I met
an employee in the health field who has severe fibro. She can't work a
full week and has to stay in bed all weekend recuperating. She often has
flares that keep her out of work for a day or two. If she has to go to a
seminar, it takes her 3 weeks to recover. This lady
got fibro from a car accident several years ago. It was sure
great to talk to a medical professional who actually understands our
condition. I get sooooo tired of having to explain FMS/CFIDS/ME to
people who don't get it. (A good non-technical article on my
site is www.fms-help.com/mnif.htm.)
This lady said
she always thought people with fibro were kind of weird until she got it
too. She describes herself as "high maintenance" (a good
description)! Some people have bodies like 4 wheel drive pick up
trucks. Mine is like a fancy little sports car....looks good in the
driveway, but there's always something wrong with
it.....ha.
Last week my main
doctor said I have many symptoms that point to heart problems, so I had a stress
test (treadmill) this week. I doubt it will show anything. A friend
tells me that the test I should get is the VIVID 7 recommended by Dr. Paul
Cheney, a famous CFIDS researcher. This test measures the heart at the
fill stage. His theory is that low blood volume causes most of our
suffering.
My problem is
that I am a self-pay patient. My insurance only covers
hospitalization (and that's after a hefty deductible is met). I am
basically uninsurable. I used to think that socialized medicine would be a
great thing, but after reading about the woes of people who have this system, I
realize this is not the ultimate answer. I shudder to think that patients
have to wait 2-3 months to see a doctor - imagine if you need sleep meds and had
to wait that long! Yikes! Also, the system can't handle
complex medical situations, such as FMS/CFIDS/ME and once you get an
appointment, the docs know little if anything about
fibro.
Many years ago, I
corresponded frequently with a very nice young man in Ireland who had M.E.
He was caught in this kind of medical system and suffered intensely (and
horribly, I might add....) while waiting many months to get coveted
appointments with specialists. He was always so disappointed when
they couldn't help him! (This young man suddenly stopped writing, and
I sure hope the worst didn't happen!)
On a
positive note, a reader sent me an e-book recently with dozens of stories of
people who recovered from FMS/CFIDS/ME and how they did it. I will
ask him if I can make this book available for my readers. I am about
halfway through right now, and it's very interesting
to see what
helped people (there was no single magic
bullet). I actually made an almost complete recovery myself until 2 years
ago when I was exposed to toxic mold in my workplace www.fms-help.com/mold.htm.
I have been
spiraling downwards ever since. My 100 Tips for Coping are at www.fms-help.com/tips.htm. For
a list of things I use/do to make my life more functional and comfortable, see
www.fms-help.com/what.htm.
I thank God for my
remaining health. I have many blessings each and every
day--hearing the birds sing, seeing the moon at night, having an understanding
husband, teaching many enthusiastic piano students www.fms-help.com/students.htm,
and playing the piano for my church www.fms-help.com/church.htm.
Another huge blessing
in my life is writing this newsletter (for 11 years
now). You, my faithful readers, are my fibro team. I am sooo thankful to
not be alone anymore on this journey! There are over 1,500 newsletter
readers now. Although I can't answer email personally, I do read
everything you send and try to address issues of common interest in my
newsletters.
Yours
truly,
Dominie Soo Bush
Return to
Dominie's FMS/CFIDS Home Page
DISCLAIMER: I am not a medical doctor. I
am a fibromyalgia/chronic fatigue syndrome survivor. The purpose of this website
is not to diagnose or cure any disease or malady, but is presented as food for
thought. This information cannot take the place of professional medical
advice. Any attempt to diagnose and treat an illness should come under the
direction of a physician. No guarantees are made regarding any of the
information in this
website.