4.
NEUROTRANSMITTER PROTOCOL
From a
reader--
"I wanted to let you know that I stopped the
Neurotransmitter Treatment Protocol that I was doing for several months.
It was getting quite expensive, plus it didn’t seem to be working like I had
hoped. Maybe I didn’t give it enough time, but the finances were a concern
for me. I am now starting to have some difficulty with
sleeping!
5. FIBROMYALGIA, THE MISUNDERSTOOD DISEASE
Good article from a
reader--
6. YOUNGER PEOPLE WITH FMS
I asked a very dear "non-fibro"
friend who lives in the dry Southwest (U.S.) if
there is much incidence of fibro in her are of the country. This was her reply
(and later my comments)--
"I'm not in the circle of FMS, but I have to say I
don't hear of it that much. From my observation it appears that
the majority of FMS is from stressed out overachiever perfectionists,
type AAAAA people who end up with this form of debilitating
burn out. We have plenty of those."
Well, that describes me to a "T"
psychologically. However, although my FMS began at age 30 www.fms-help.com/fibro.htm, since
birth I had poor health, lots of upper respiratory infections, and then hormonal
weird stuff and a sleep disorder that began in my teens, so I wonder how much of
FMS/CFIDS is genetic (not caused by emotional or psychological factors)? I
do know that severe stress or abuse can bring it on.
I just heard from a reader
(age 60 female) whose FMS began in childhood. I have a page on my
site about children and teens with FMS www.fms-help.com/teens.htm. Understandably, parents get REALLY concerned when
their kids are disabled so much that they can't go to school or out with
friends!
I also hear from the
early-20-something crowd who have FMS/CFIDS. Their lives are
devastated! Instead of college, career, dating or marriage, they are
housebound, ridiculed and barely functioning. Awful!! No fun
at any age. Also, the moms with FMS/CFIDS who have young children to care
for - well, it's almost an impossiblity! This is where it is vital to have
an understanding, helpful spouse.
Check out my 100 Tips for
Coping with Fibromyalgia and Insomnia at www.fms-help.com/tips.htm. I
also have lots of helpful links on my homepage www.fms-help.com. Now that the human
gene code has been mapped, it will probably be just a few years before they can
pinpoint the gene that causes our illness. However, finding the gene and
finding a cure are two different things. Meanwhile, let's all stick
together and share our information. The only people who truly understand
FMS/CFIDS are those of us who have it.
7.
RELIEF FROM SYMPTOMS
From a male reader with
FMS/CFS--
"As an executive of a fortune 100 company, I
was diagnosed with Fibromyalgia and CFS and had to leave work.
After going to many doctors who only said it was in my head, lack of
nutrition or exercise, I finally had enough. Having been an
athlete in many sports from climbing to cycling, I was always
in the prime of health. I sought out the best doctors in the field of
Fibromyalgia and have now been able to manage the disease. Each
person’s metabolism is different, so increases or decreases in dosages may be
warranted. Check with your doctor. I was in extreme pain until I found the
correct doctors.
THIS MAY HELP SOMEONE GET BACK THEIR LIFE! THIS LIST BELOW IS
WHAT THE DOCTORS ARE PRESCRIBING FOR ME. THEY ARE RATED THE BEST IN THEIR FIELDS
FROM NEUROLOGY, INTERNAL MEDICINE, AND ENDOCRINOLOGY TO RHEUMATOLOGY. I
SPENT A CONSIDERABLE AMOUNT OF MONEY, TESTING AND TIME TO ACHIEVE THESE RESULTS
WITH THE HELP OF THESE LEADING DOCTORS IN THEIR FIELDS OF STUDY, ALL BOARD
CERTIFIED--
JOINT PAIN - THIS HAS ELIMINATED MY PAIN AS LONG AS I DO NOT ENGAGE IN PHYSICAL ACTIVITY - GABAPENTIN 300MG 2 CAPS MORNING, 2 CAPS AFTERNOON AND 2 CAPS EVENING; TRAMADOL HCL 50 MG 2 TABLETS 4 TIMES A DAY
MUSCLE PAIN - METHOCARBAMOL 500 MG TAKEN AT BEDTIME FOR MUSCLE PAIN; TIZANIDINE HCL 4MG 1 OR 2 TABLETS NIGHTLY FOR MUSCLE CONTRACTION AND KNOTTING OF MUSCLES
ENERGY - ADDERAL 20 MG WHICH CAN BE INCREASE UP 100MG. I FOUND THAT IT WAS THE ONLY DRUG THAT REALLY OVERCAME MY CHRONIC..I CALL IT EXHAUSTION NOT FATIFUGE…THROUGHOUT THE DAY. I TRIED PROVIGIL BUT IT WORKED SPORADICALLY IF NOT AT ALL.
ANXIETY - ALPRAOLAM ONE MG TAKEN TWICE A DAY
DEPRESSION - WELLBUTRIN HCL 100 MG TWICE DAILY AS THIS EMOTIONAL ROLLCOASTER OF REMISSION AND RELAPSE IS EMOTIONALLY DRAINING AND THIS HELPS STABILIZE MY SEROTONIN LEVELS WITH FEW SIDE EFFECTS.
SO FAR THINGS ARE IMPROVING AS I GOT MY JOINT AND MUSCLE PAIN
UNDER CONTROL. THE EXHAUSTION IS SHOWING INCREDIBLE PROMISE AND I AM STILL
WORKING WITH MY DOCTOR ON THE CORRECT DOSAGE. FOR THE FIRST TIME IN 6
YEARS I SEE HOPE AND PROMISE AGAIN OF LIVING A NORMAL LIFE."
[A list of things I currently
use--both prescription meds and nutritional supplements--is at
www.fms-help.com/what.htm. Sure wish there was just one single "magic bullet"
that would help us all.]
8.
GENETICS & FMS
From a
reader--
"I noticed the question about gene research in the last
newsletter. I'm just a 2nd year graduate student in
neuroscience...I'm not an expert in genetics...but from what we learned
in our cellular/molecular classes during my first year, individual gene chip
assays that look for individual genes being abnormally upregulated or
downregulated (that would indicate a predisposition to a certain disease or
point directly to a specific disease like FMS), like doing this in your doctors
office, is still a few years away. The technology is definitely here at
this point....gene chips as they are called are routinely used in labs....my
genetics classmates do that stuff all the time in their labs....but from what I
understand, the holdup in doing it for all people in their doctors offices
is the expense. I recall the head of the NIH genome project
saying that in a few years the cost will be down to around $1000 per test
and then it will be feasible to do it for everybody.
And, yes, absolutely, that person is right
about looking for genes common to FMS
people! It's a very exciting prospect!
It's absolutely doable. In fact I wouldn't be surprised if a
group was out there doing that right now, either in industry or in
academia. They do that for all other kinds of diseases like
cancer for instance. A few years ago we did that exact thing for
idiopathic (unexplainable) lower back pain, except for proteins in spinal
fluid instead of DNA (genes), called proteomics.
(DNA/genes are converted to RNA, then RNA is converted to
protein)
If you want keep up with the research, just go to
Pubmed...you can just go to Google and type in Pubmed...that's
what I do. That's where all scientific biological papers
are published. Some things to search for in the search box are
"fibromyalgia, chronic pain, gene chips, assays" or "fibromyalgia,
differentally regulated genes" or "fibromyalgia, genetics"... things like
that. Most (almost all) of the papers have freely available
abstracts, but if you want the full text, you'll need to go to
a University that subscribes to the journal. (Subscriptions are very
expensive.)"
9.
PREGNANCY AND FMS
From a
reader--
"I've noticed that my FMS got better while I was pregnant
and it's gotten worse since having the miscarriage. (Mainly the
overall achiness/pain) Maybe it's something about the high levels of
progesterone and all the other pregnancy hormones? I think I
will mention it to my doctor."
[Look up Relaxin using the
Google search box at the end of this page. Relaxin is a hormone that
increases during pregnancy.]
10. VITAMIN C FOR VIRAL SYMPTOMS
From a
reader--
"I suffered with CFS for 17 years now.
The past 2 years I have been doing considerably better. I took
Vitamin C for all of the viral symptoms (about 3 grams a day in divided
doses of 500 mg.every hour or two). I also return to this regimen
when I feel under the weather. My daughters have learned to take at
least a couple of tablets a day when they start to feel like they are coming
down with something. It either stops the infection in its tracks, or
shortens the duration. If there are other symptoms of infection, my
children take Echinacea and I take Golden Seal. As a result, we take very
few trips to the doctor's office. I found it to be very helpful and
Vitamin C tablets are pretty cheap at Walmart. It helped with my
allergy symptoms considerably and I haven't been plagued with
them much at all lately. (This has been a bad pollen year in
Pennsylvania.)"
11.
HYPOTHYROIDISM & FMS
From a
reader--
"I have noticed recently that most, if not all of the CFS
symptoms are also found in hypothyroidism. We seldom get
treated for such because our bloodwork does not reveal a thyroid
problem. However, the Fibromyalgia and Fatigue Centers
routinely do a trial of thyroid medication with most of their patients and state
that most CFS patients are low thyroid. (Check out their website
for more information on this). I have been doing well on the thyroid
medication. I find myself active up until about an hour before bedtime and
I only take 15 mg. 2x a day. I keep a regular sleep schedule,
even when I don't sleep well, and miraculously haven't been feeling the
usual effects of interrupted sleep. I think my hormones
are finally correcting themselves. I handle work stress much better, have
less brain fog, feel less chilly, and the achiness has disappeared almost
entirely. I think it is well worth a try if you can find a doctor
to give you a trial of thyroid medication. Again, this medication is quite
inexpensive-$16 a month at most if you pay full price. Diet-wise, I eat several
small meals a day focusing on protein, fruit, whole grains and
vegetables. I still cheat with the junk food, but I usually feel
worse afterwards. (You would think that would discourage me from doing it,
wouldn't you?!!.. Yeah, right.) I take a multi-vitamin and a
flaxseed oil tablet and seem to do well with just these, even though I tried
many others in the past. The only other thing I do is try to get some
fresh air everyday and do as much light exercise as I can, which is probably a
total of about 4 hours a week. (All these years of fatigue have left me a
little lazy.) As I show more improvement, I plan to increase my activity
very gradually. Everything I have suggested has been easy, with the
exception of finding a doctor who will treat me
for hypothyroidism. There are two good books that might give you some
guidance in finding a doctor, if your doctor won't go along with it. They
are Living Well with Hypothyroidism and Thyroid
Power. Each book contains actual patients whose symptoms will
sound very familiar to you!"
12. THE BATTLE GOING ON BEHIND THE
SCENES
From a
reader--
[This was greatly encouraging to
me!]
13. PROVIGIL
From a
reader--
"I know that I read something on one of your newsletters about
Provigil. Do you remember which one it may have been? My doctor gave
me this over a year ago. I put it aside and really only tried one or two.
I had it refilled a couple of months ago because I did not have
the energy to get off of the couch. My family and I were moving
into a new home and I had to get up and get going. For the past few weeks
after starting on the Provigil I have gotten a lot more energy
and a lot of things done in our new home. I even get outside and
walk!! I have done things with my 13 year old daughter that before I could
not do. Anyway I called for a refill on the provigil (I had 2 refills
left). Out of the blue my insurance denied the refill. Their reason was
that provigil is not an FDA approved drug for the treatment of FMS. I know
that! I was not taking it to treat my FMS. I was taking it so I
could stay awake in the daytime and have the energy to get up and help my
family. My husband and daughter said that I was like I used to be.
But now I am back to barely having the energy to get out of
bed. I thought I read something about this."
[You can find information
from past newsletters and my entire FMS/CFIDS/ME site by using the Google
search box below.]
14. WEATHER & FMS
From a
reader--
"This muggy hot weather has really been
taking a toll on me. I find myself having even less energy than usual and
I am battling a terrible cold. People have asked: 'How come you keep
getting sick in this beautiful warm weather?' Aw, the perks of having a
damaged immune system!"
[Know what you
mean! I live in Florida, it's muggy and hot most of the year.
Humidity bothers me more than temperature (hot or cold). Dampness--and
also darkness (like dreary overcast days)--make me feel worse....also
depressed. How are my readers doing in the sunny Southwest, such as
Arizona? Wondering if we all need to move to that area of the
country! I was in the UK for 4 months many many years ago and didn't see
but one or two sunny days the whole time! I noticed that many of my
newsletter readers live in the UK. I'm not surprised....I think weather
has a lot to do with our symptoms, maybe because of the effect on our pineal
gland (?) See my 100 Tips for Coping with FMS at www.fms-help.com/tips.htm -
this is from the perspective of a fellow sufferer, not a medical
expert.]
15.
EPSOM SALT BATHS
From a
reader--
"I met someone last Sunday in church who has
had M.E. and we had a really great chat. It has served as an encouragement for
me as she could identify with so much of what I said and she gave me advice
she'd received from an M.E. specialist. One of the interesting things is taking
a bath 2 or 3 times a week and putting Epsom Salts in the water. It eases muscle
aches and pains. I've tried it and it actually seems to work!"
16.
HYPOTHALAMUS
From a
reader--
"I recently had my doctors test my thyroid
(again) and the tests came back contradicting one another; they did more
tests and some study and research and found that my hypothalamus is
abnormal....also that I had inflammation of the
heart. Together, they feel this will lead to something else.....I
BELIEVE it will just point to M.E. I do have a
thyroid nodule and I am on armour thyroid after having tried
synthetic thyroid and am doing better on the REAL thing; however, my tests
always come out questionable because of the hypothalamus."
[See my page at
www.fms-help.com/hypothalamus.htm.]
17.
EFFEXOR VS. CYMBALTA
From a
reader--
"I've been taking Effexor for
years. My shrink says it's basically the same as Cymbalta but the
manufacturers haven't spent the money to do the studies that would enable them
to advertise that it helps with FM. So I haven't bothered to change
meds."
18. ABUSE & FMS/CFIDS
From Dr. Murphree's latest
newsletter--
"Retrospective studies show that the stress of
emotional, physical, or sexual abuse during childhood
increases the future risk of developing certain symptoms or illnesses. These
illnesses include many of the same symptoms associated with fibromyalgia
, including chronic
pain , chronic viral infections, anxiety,
and depression . Apparently, for some children and adolescents, too
many traumatic or stressful events decondition their normal homeostatic
stress-coping abilities. Thus, stress and particularly
traumatic stress, early in life, may alter the set point of the
stress response system, rendering these individuals prone to stressful events
later in life. This most likely occurs from over-stimulation and depletion of
certain stress-coping hormones including serotonin, norepinephrine, cortisol,
and DHEA.
Research shows that patients with fibromyalgia or CFS may have genetic tendencies that cause them to be more sensitive to the ups-and-downs of stress. Fibromyalgia patients are also more likely to report a history of emotional, physical, or sexual abuse during childhood and adulthood, compared to other patient subgroups. Sadly, I do find that many of my fibromyalgia and CFS patients have experienced physical, emotional or sexual abuse as a child."
[Comments, anyone? Please
write me at dombush@bellsouth.net.]
19.
NEW "INVISIBLE CHRONIC ILLNESS" BLOG
From a
reader--
"I'm blogging at www.theiciexperience.blogspot.com.
Check it out. Sign up for the RSS feed if you want to get
the blog "The ICI Experience" [ICI stands for
Invisible Chronic Illness] every time it gets
updated."
20. MULTIPLE CHEMICAL SENSITIVITIES (MCS)
From a
reader--
"My tale of
woes started with a surgery. Then I was
poisoned with formaldehyde, mercury from fillings, and DMPS (a chemical mercury
chelator). My endocrine system and liver practically stopped
functioning so had pain in every part of my body, MCS really bad, and
almost died. The main problems are the toxins which cause
candida and parasites in various glands and
organs (and brain too probably). I juiced twice a day
(Green Star juicer), and then rubbed the oils on the bottom of
my feet. It took 2 years, but I am healed."
[I have info on essential
oils. Gotta admit they are amazing! Write me at dombush@bellsouth.net for info.]
21. CAN'T TAKE STRESS - TRY MANUAL LYMPH DRAINAGE
(MLD)
This was an incredibly insightful response I received from an
Australian reader about my chest tightness and inability to travel. Thank
you! Thank you!--
"I
think people with CFS & fibro have an extreme problem dealing
with any stress. The attendance at a function and the body having
to deal with extremes (or even slight differences) seems to push us over
the edge, being border line and not being able to cope with life in
general. These conditions are only mild to an ordinary healthy
person but to a fibro sufferer they are extreme. It has taken me a while
to admit to the fact that I am not operating with a full deck of
cards, it was alway they can do it, why can't I? I am now
more accepting, and am aware of the
toll different things take on my body. Heat and cold sometimes
place more stress on your body than it can handle and can cause me a
relapse.
I think all parts of the body are affected in
fibro via the central nervous system, hypothalimus just one of
them. Adrenals, thyroid, hormones etc. The list goes on and it can
be different for each individual.
With regards to your chest tightness, I
too had extremely tight chest, pain when deep breathing but no cough. I
had my heart tested each time these episodes came but nothing showed up.
It was very distressing. These symptoms I attributed to the
tightening of all the muscles in upper body and surrounding the
chest. On episodes of fibro these would tighten up so much they
obstructed normal movement and were very painful. I helped my
symptoms by having Myofascial trigger point injections
(pioneered my Dr Janet Travell). This involves injecting into the
trigger point of offending muscles a mild anaesthetic to help the muscle regain
its original elasticity. This helped enormously but didn't cure and as it
was quite expensive you may find if it is muscular even massage may help.
(If you havent already tried this).
The most I have been helped so far though has been the
Manual Lymph Drainage that I originally read about on
your website. This has been amazing. The difference in me is
amazing. It is so simple but so
effective. I no longer feel like I have been
"poisoned" and slowly my symptoms are continuing to
improve. I don't feel I can no longer cope with life and
feel like maybe Im going to get a second chance. I was able to travel 2500
kilometres on holiday without nearly dying with pain, which is a miracle, never
thought I would be able to travel again. A good pair of polaroid
sunglasses was essential for this though, light and glare
can cause devastating symptoms while travelling. Its
not a miracle cure and you have to work at it, you do 10 minutes of
MLD 4 times daily but this drains the toxins out of
your system, helps repair tissue and slowly improve
central nervous system.
When I first started this the lymph drainage site at the
top of nose on the brow line was so sore I could hardly touch it. This
could be a good way to identify if your lymph wasnt draining properly.
Just apply pressure there and see if its tender."
[Check out this link http://www.positivehealth.com/permit/Articles/Bodywork/eidelson71_p.htm - and there are many others online about MLD
too. Here's a quote from this site: "MLD involves light, rhythmical massage
that aids the body in collecting and moving lymphatic fluid, which plays a key
role in delivering nutrients, antibodies and other immune constituents to the
tissue cells of the body and removing debris such as toxins, cell waste and dead
particles which are then cleansed by clusters of lymph nodes. MLD
also works on the nervous system, lowering blood pressure,
reducing stress and improving sleep patterns."
That sure sounds good
to me!]
22.
DOM'S UPDATE
Hurray! I had 4 good
days last week! I've gone back to using something I've tried many years
ago and it seems to be helping again! Ever notice how this illness jumps around a lot? You can use
something successfully for 3 months or even 3 years and it works great, then for
some strange reason it stops helping and you have to try something else, then
something else, and then maybe return to the first thing again.
Whew! FMS/CFIDS/ME bodies can't maintain homeostasis.
Have you noticed that sometimes
exercise makes things worse instead of better? I think it stirs up the
dormant virus. (Just guessing - I'm not a doc.) Sometimes we have
chronic infections that our immune systems are battling and that causes the
abysmal fatigue. Who knows?! FMS/CFIDS/ME is such a complicated
illness!
Getting over my recent
"flare/crash" and enjoying 4 good days has been wonderful!! Life
would be so easy if every day were like those! Now I know how normal
people feel and how they can go to work every day and achieve so much.
I hope to write a new page soon
for my site at www.fms-help.com about
managing flares. Lots of readers who are writing in have been flaring and
crashing lately. Of course, there
are 100 Tips for Coping with
Fibromyalgia and Insomnia at www.fms-help.com/tips.htm, but I do
hope to write the "emergency" page soon. Will keep you
posted!
Dominie Soo Bush
DOMINIE'S FIBROMYALGIA & CHRONIC FATIGUE SYNDROME HOMEPAGE
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.