DOM'S
NEWSLETTER
June 1, 2008
A
compassionate, informative newsletter for people with Fibromyalgia (FMS),
Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS), and Myalgic
Encephalomyelitis (ME).
TOPICS ARE IN
PURPLE. READERS COMMENTS ARE IN
BLACK. MY COMMENTS ARE IN
TEAL.
Don't miss: #9, 10, 15, 21, 22,
23, 25 & 32
Scroll down the page to read these articles:
1. READERS
WRITE
2.
ULTRAM
3.
THYROID
4. CHRONIC PAIN CAN ALTER THE
BRAIN
5. ELECTROMAGNETIC FIELDS, CLIMATE &
SLEEP
6. CHIROPRACTIC DANGER
7. EXERCISE &
FIBRO
8.
BRAIN WAVES & MENTAL CONDITION
9. SEVEN TYPES OF CFS/ME FOUND BY
GENETICISTS
10. WORK
FROM HOME - FOR PEOPLE WITH DISABILITIES
11. CHRONIC BACTERIAL & VIRAL
INFECTIONS IN NEURODGENERATIVE AND NEUROBEHAVIORAL
DISEASES
12. ASPARTAME (NUTRASWEET) DANGER
13. GOOD DOC & THE GRIEVING
PROCESS
14. UNSUPPORTIVE HUSBAND
15.
DISEASE MAKES DUBIOUS DOCTOR A BELIEVER IN CFS
16.
DISABILITY ENDS AT 65
17. DOM'S SUPPORT GROUP
18. WHITE
SUGAR & SMOKING - AVOID IT!
19.
COMMON COOKING INGREDIENTS THAT ACT LIKE MEDICINES
20.
SLEEP DEPRIVED BRAINS
21.
NERVOUS EXHAUSTION & DOG MAULING CAUSED WOMAN'S FIBRO
22. MEN
WITH FIBRO
23.
"MEDICALLY FRAGILE"
24.
INTERVIEW WITH DOMINIE
25. THIS FIBROMYALGIA VIDEO IRRITATES
ME!
26. ARE
YOUR COSMETICS SAFE?
27.
DIET COKE TO DROP ADDITIVE IN DNA DAMAGE FEAR
28.
SLEEPLESS
29.
DYING WOMAN WAKES AFTER TUBES PULLED
30.
MERCURY LEAKS FOUND AS NEW BULBS BREAK
31.
DRUG SIDE EFFECTS??
32.
DOM'S UPDATE
1. READERS
WRITE
"Your newsletter is the best I've found."
"Thank you for your newsletters. I don't like to hang around
on the fibro sites, because they make me sicker than I am
already. I usually finish going through a website, and I'm so down
and feeling sorry for myself that I don't go back on for a few
months. Your newsletters don't contain the
"wallowing" element and are usually filled with fresh
ideas."
"I avidly follow every scrap of info you send me and have
already benefitted greatly from your newsletters."
"To the lady who said you dwell on your problems, if she does
not like it, there are many non-supportive websites she can
look at. What you have been through, is you, and that is what you makes
you special, because not only have you been through it, but you share it,
and that makes us feel not alone out there. You don't just share in
scienfic terms, you share with your heart, and
that makes yours the best website ever."
"I'm glad I stumbled
upon your website."
"I cannot express enough how when I read your story
www.fms-help.com/fibro.htm it
sounds exactly like what I am and have been going through for
years."
"Thanks again for your wonderful website and
newsletter."
"I came across your website
www.fms-help.com and I must tell you how
informative and impressive I have found your pages.
I felt
like I came home as I read your pages. I have felt
so alone going down this path (my poor husband doesn't know what to do
with me)."
2.
ULTRAM
From a
reader--
"I think some readers are confused about the Tramadol
(Ultram). Ultram was combined with Tylenol and called Ultracet so
there is both medications on the market now. Ultram has no Tylenol and Ultracet
does have Tylenol.
ULTRACET® (tramadol hydrochloride/acetaminophen) Tablets
combines two analgesics, tramadol 37.5 mg and acetaminophen 325 mg.
ULTRAM® (tramadol hydrochloride tablets) is a centrally acting
analgesic. The chemical name for tramadol hydrochloride is
(±)cis-2-[(dimethylamino)methyl]-1-(3-methoxyphenyl) cyclohexanol
hydrochloride."
From the reader who originally
sent me the info--
"I wanted to say that I am so sorry about my error and the
resulting confusion about Tramadol and tylenol…blame it on fibro fog! The
prescription is for “Tramacet” (which may be the Canadian name); it has 37.5 mg
Tramadol hydrochloride and 325 mg acetominophen per
tablet."
3.
THYROID
From a
reader--
"Thank you so
much for the information concerning the Thyroid www.fms-help.com/050608.htm. I
have recently found out I am deficient in thyroid hormone and am now on
week 3 of taking Armour thyroid and have been feeling incredible the last 2
weeks!! I am addressing my adrenal issues at the same time."
4. CHRONIC PAIN CAN ALTER THE
BRAIN
From a reader--
"CHICAGO -
Brain scans of people in chronic pain show a state of constant
activity in
areas that should be at rest, U.S. Researchers said on
Tuesday, a finding
that could help explain why pain patients have higher
rates of depression,
anxiety and other disorders.
They said chronic pain seems to alter the way
people process information
that is unrelated to pain.....[read article at
http://www.msnbc.msn.com/id/23017866]"
5. ELECTROMAGNETIC FIELDS, CLIMATE &
SLEEP
These comments are in response to a reader's question about why
her husband's fibro goes away when he is in Cuba www.fms-help.com/050608.htm--
Reader 1--
"Especially
interesting: The mention of Cuba and electrical activity.
I live in
NYC. A few years ago, on the night of our citywide
blackout, I slept in a coma-deep sleep for 14 hours. I felt
as
though I was a healthy 12 year old when I woke up (I'm 40).
No
artificial light. No electrical charge in the air. Never
happened
before and it never happened again. Up until recently, I'd
been
averaging 4 hour of restless anxious sleep for 13
years.
Coincidence? I think not!"
Reader 2--
"I just
recently returned from a trip to Vegas that I was dreading,
dreading, dreading to take as I was feeling wretched and had zero energy.
Especially dreaded the flight. Amazed in less the 24 hours to find myself
feeling better than I had in weeks... TONS of electromagnet fields in Vegas...
My wheezing (chronic for 2 years, acute episodes twice in the past two months,
one ending in the ER, the other happening the few days before leaving for
Vegas)... cleared up within 24 hours (even with the smoky casinos which I
thought I'd never be able to be in)... my back pain went so minimal, I hardly
needed pain pills (even with all the walking). However, I did have a
curious side effect of bad ... how to describe... due to the ultra dry air and
all the skin rubbing during walking in the heat... it started with my thighs and
then seemed to quickly spread over my entire body except my face and hands... I
felt like my skin just went... almost raw."
Reader 3--
"Very
interesting - I had a similar experience when I went to Costa
Rica for 3 weeks for a mission trip. I was in such a bad flare prior I
almost didn't go. I figured I'd spend much of my time there lying down and it
was a very physically intense trip. We hiked through the rain forest 3 hours,
took a row boat for hours to get to the village, and lived in little huts,
cooking food over a fire. I taught vacation Bible School, on my feet most of the
day, helped w/ cooking, etc. It was hot, humid, and rained part of the time. I
swear ALL my pain went away, I had energy, felt great! 2 days after getting home
I got sick again. I also wondered if it was psychological or maybe God cured my
health for that time to serve Him. After hearing what you said I wonder if there
is more to the story. Would be interesting to check the percentage of
FMS/CFS in hot humid climates like Cuba, Central and South America,
etc. I normally feel WORSE in hot, humid climates. We lived
in Virginia for a year and I was miserable. So that's why I was so surprised I
felt better there too. All I can really think of is what Dominie said - the
electromagnetic activity. Or perhaps pollution/air quality?? Slower, laid back
pace of life?? There was so much less stress there with the people - they were
relaxed, happy, simple, and seemed to enjoy life so much more than we do here.
Maybe being around people like that I wasn't so stressed and that helped my FMS.
Although I myself was stressed dealing w/ huge spiders (I am terrified of
them!), little sleep, and being on my feet much of the day teaching kids and
adults in a language I struggled with. I was sore and tired at the end of
the day but in a normal "non FMS way" where I knew I could get up again and do
it over. All I could think of was God did a miracle so I could do the work He
had planned for that particular time. It certainly does seem we rarely hear of people in third
world countries w/ FMS - is it because we just don't have the capacity to
communicate w/ them, it doesn't exist there, or they are so busy just surviving
their minds aren't really on their health issues as much? Who knows but it's all
very interesting to me and I'd love to hear any other ideas on the
topic!! Also many FMS specialists believe that the "stress
trigger" has to be activated somehow to set off FMS. Even though they have
stress just surviving in many jungle or third world areas, perhaps they don't
have the variety and intensity of stressors we do??? Perhaps it's because
their brains aren't constantly bombarded with information, stimulation, noise,
advertisements, etc. Here in the U.S. our brains are so over
stimulated. I wonder if it has anything to do w/ diet also.
In Costa Rica their diet was so simple - rice, beans, chicken, bananas/plantains
mainly. It was all "clean food" they raised/grew/harvested themselves so no
chance of toxic chemicals in their food chain. Maybe that's part of it?? Also
they got tons of exercise there, but I was running a gym and teaching aerobics,
in great physical condition when I got my FMS so the exercise/low body fat
didn't help me there. "
From Dom--
Some of the best sleep I ever got was when I went camping in a
forest for a week. There was no electricity - it was in the middle of
nowhere. I was amazed that I was able to sleep so well. If the
subject of electromagnetic fields intrigues you, go to www.fms-help.com/newsletters.htm
and type in "electromagnetic" or "fields" or "electricity." (Then use
ALT-F when you get to the right page.) I have discussed this in previous
newsletters. There are shields you can buy to surround your bed to keep
these frequencies away from you. See Tip #64 in my 100 Tips for
Coping with FMS & Insomnia at www.fms-help.com/tips6.htm#64.
About climate and humidity, I live in Florida where it is miserably hot and
humid much of the year. There's a lot of fibro here. I always
thought a drier climate would be better, but I hear from a lot of folks in those
places who have fibro too. I have heard from people on
most continents of the world who have FMS/CFIDS and identical symptoms,
despite differences in diet, lifestyles, cultures, etc. I received an
interesting call at 7:30 one morning (I am barely functional at that time) from
a lady who had moved to the middle east and developed fibro trying to adjust to
the cultural practice there of sleeping 4 hours, working, then sleeping 4
more hours in the afternoon, working more and then eating dinner at 10
p.m. This disruption of her sleep pattern brought about the development of
her FMS. I know it has something to do with our brain function,
but what?? See "Drained by the Brain" at www.fms-help.com/yuppie.htm (from
Australia).
6. CHIROPRACTIC DANGER
From a reader--
"I address
this in chapter 10 in my book. You have nothing to worry about, this site
was put up by a VERY anti-chiropractic MD."
7. EXERCISE & FIBRO
Thank you, Dr. Murphree www.treatingandbeating.com, for
responding to an article about how fibro gets better with exercise. Here
are his wise words--
"This article and its authors demonstrate how little they know
and understand about fibromyalgia. While I agree that exercise is
helpful for patients with all sorts of ailments, those with fibromyalgia often
experience a worsening of their symptoms after exercising - especially if
involves strenuous exercise like fast paced walking or
running.
Exercise is a stress - a good stress but a stressor none
the less. Those with fibromyalgia have bankrupted their stress-coping chemicals
and can't handle any stress - changes in weather, travel, poor sleep, mental, or
emotional, and especially physical stressors all aggravate fibromyalgia
symptoms.
While pool therapy is great, I wouldn't recommend any
other exercise programs until a person has built up their stress-coping savings
account chemicals.
Stress Coping Savings
Account
We're all born with a
stress-coping savings account. Some of us are born with large stress-coping
savings accounts and some of us are born with small savings accounts.
These accounts are filled with stress-coping chemicals like the brain
chemicals serotonin, dopamine, and norepinephrine, and the hormones, cortisol,
DHEA, and thousands of other chemicals that allow us to handle stress.
All day long we're making withdrawals from our stress-coping accounts.
Rush hour traffic, disturbing TV news, work deadlines, financial pressures, loud
noises, morning carpool (for those of you without kids, trust me morning carpool
is every bit as stressful as a biochemistry final), and other daily stressors
cause us to make withdrawals from our stress coping accounts.
The more
stress the more serotonin we use up. If we're not careful we can make more
withdrawals than deposits. When this happens, poor health starts to rear its
ugly head; depression, pain, anxiety, fatigue, lowered immune function,
headaches, allergies, etc.
One of the ways we make deposits into our
stress coping accounts is by going into deep restorative sleep. When we go into
deep restorative sleep we increase our serotonin levels. The deeper the sleep,
the more serotonin is deposited. I've written at length (in my books and
newsletters) about the importance of deep sleep and serotonin.
Serotonin, a
neurotransmitter, helps regulate sleep, digestion, pain, mood, and mental
clarity.
Normal serotonin levels
helps:
to raise the pain threshold (have less
pain).
you to fall asleep and stay asleep through the night.
regulate
moods, it is known as "the happy hormone."
reduce sugar cravings and
over-eating.
increase a person's mental abilities.
regulate normal gut
motility (transportation of food-stuff) and irritable bowel_syndrome
(IBS)
5HTP which boosts Serotonin, boosts melatonin levels by 200%.
Melatonin is the primary hormone of the pineal gland and acts to regulate the
body's circadian rhythm, especially the sleep/wake cycle. Serotonin turns into
melatonin, which then promotes deep restorative sleep.
Serotonin levels
can easily be raised by supplementing with the essential amino a
5-hydroxytryptophan (5HTP), a form of tryptophan. 5HTP is available
over-the-counter and works extremely well for most patients. Studies (including
double-blind) comparing SSRI and tricyclic antidepressants to 5HTP have
consistently shown that 5HTP is as good if not better than prescription
medications in treating mood disorders. Furthermore, 5HTP doesn't have some of
the more troubling side effects associated with prescription
medications."
I personally have not
had good results with 5HTP, but I hope it works for other fibromites.
Melatonin helped me sleep for 3 years, then suddenly stopped working when I
turned 47 - maybe because of hormones shifting.
8. BRAIN
WAVES & MENTAL CONDITION
I was reading about
L-Theanine for anxiety reduction and found this interesting
chart--
9. SEVEN TYPES OF CFS/ME FOUND BY
GENETICISTS
From a
reader--
'Seven
genetic types of ME' found - Geneticists have identified a biological basis for seven different
subtypes of chronic fatigue syndrome. The researchers from St George's Hospital,
University of London, hope the work could lead to a blood test to distinguish
between the forms. Campaigners hope it will help counter the opinion, which
remains in some quarters of the medical profession, that it is a psychological
condition. See article from BBC news at http://news.bbc.co.uk/2/hi/health/7378440.stm.
Wow! This is VERY
IMPORTANT AND GOOD NEWS for all of us with CFS/ME!!!!!
10. WORK
FROM HOME - FOR PEOPLE WITH DISABILITIES
Got
this from my wonderful stepdaughter who has been telecommuting for
years--
"I found this website that is specifically for people with
disabilities that want to work from home:
I thought it might help
some of your readers if they are looking to work from home. Not sure if you have
to prove your disability; however."
11. CHRONIC
BACTERIAL & VIRAL INFECTIONS IN NEURODGENERATIVE AND NEUROBEHAVIORAL
DISEASES
Article by Garth L. Nicolson, PhD
(Department of Molecular Pathology, The Institute for Molecular
Medicine, Huntington Beach, CA) published in the
MAY 2008 ISSUE OF LAB
MEDICINE. This article mentions Lyme Disease, CFS, etc. I have it in
a PDF file on my computer. If you are interested, write dombush@bellsouth.net and I can forward it to you. (It's highly
scientific.)
12. ASPARTAME (NUTRASWEET) DANGER
From the husband of a lady with
fibro--
"I found an article
that makes me wonder of the causation of FMS.... http://tinyurl.com/3t37cz (the
use of Aspartame) Of particular note is the section that talks of CFS and
Fibromyalgia: 'Because of its ability to pass into the brain, aspartame
exacerbates or can cause the following medical conditions: Epilepsy,
Parkinson's, Alzheimer's, Multiple Sclerosis, Chronic Fatigue Syndrome,
Lymphoma, Fibromyalgia / Eosinophilia Myalgia, Mental
Retardation / Birth Defects, Diabetes / Hypoglycemia, Graves Disease, Heart
Disease, Lung Disease, Liver Disease, Kidney Disease, Brain Tumors [astrocytoma/
glioblastoma] , Pancreatic Disease, Kidney / Adrenal Disease, Arthritis,
Blindness, Tinnitus, PMS, Carpal Tunnel, Lyme Disease, Muniere's Disease, Other:
Rare / Hard to diagnose disorders.'"
13. GOOD DOC & THE GRIEVING
PROCESS
From a reader--
"My
doctor ended up just letting me chat for 50 minutes, considering that our
appointments are for 20. He said he is doing all he can for me. I
read him a list of the supplements I am taking, and he approved of them
all. But, the big thing is he spoke to me about the grieving
process we go through with a chronic illness, the same as if someone had died,
and we are part of that someone we have lost., and it takes 2 years for
acceptance and I am getting there. Funny, after I came out, even
though I felt sad when I spoke to him, I felt emotionally so much
better. He is a fantastic Christian, and his son drowned at the
age of 4, and he pulled him from the pool, and gave him CPR, but knew how brain
damaged he would be if he survived, and his death was a greater gift than if he
had lived. I told him that my medical aid wont pay for my painkillers, or
for any treatment relating to CFS. He said they say it does not
exist. He said, Let one of them sit opposite a patient, and tell
them that their pain or tiredness does not exist, they would never be able to do
it I gave him a big hug when I left. Up to then, I thought that my
fibro would be cured somehow or other, but he says it is like being diabetic,
you can control it, but it never goes away, you can go into remission, and
anything can trigger you into going into remission, but it is always
there in the background. Tis so funny, that the "bad
news" gave me hope, that instead of fighting it, I would just learn to live with
it, and I am well on my way to doing that, and the acceptance.
The fibro has an effect on my bladder, and in this condition, I dont want to
cough!!!! I am terrified of sitting in the waiting room, and I am not
"sick" and dont want to pick up the germs of those spluttering around
me!!!! It's ironic, but as I
told him all my symptoms, he looked at me as if to say, but that's the way it
is, that is the illness, that is what you have...with all the compassion on his
face, but no "shame", and his attitude brought the acceptance I needed to come
to terms with it."
14. UNSUPPORTIVE HUSBAND
From a reader--
"I have to accept the
fact that I don't have a supportive husband. If the shoe were on the other
foot, I wonder how supportive I would manage to be the whole time? I would
also get sick of it."
To
read more about relationships and fibro, see
www.fms-help.com/relationships.htm - be sure to see the link at the top about the letter from a husband whose wife had fibro. If
I were healthy and did not have FMS/CFIDS, I would not understand those who
had it. It makes me feel ashamed to think I might even have considered
them "weak" or "lazy." So I can't judge those healthy folks who don't "get
it." But thank God He allowed me to have this affliction so I could
have a more compassionate and understanding heart. My husband is
supportive 99% of the time, but there are times when he gets fed up with the
limitations of my illness (can't travel more than 30 miles without utter
fatigue). I can only agree with him and remind him that what I have is a
physical illness and not something under my
control...........unfortunately. My will says yes, and my brain says
no.
15.
DISEASE MAKES DUBIOUS DOCTOR A BELIEVER IN CFS
16.
DISABILITY ENDS AT 65
From a
reader on disability--
"I just found out some shocking
news--if any of your readers are on SSD
they only get to collect that amount
until their retirement age.
Once they reach that age (65) their SSD gets cut
down to what they would
have made the year they became disabled.
I will
lose about $250 a month."
PLEASE NOTE THIS CORRECTION I RECEIVED--
"I just read a letter from one of your readers [ www.fms-
help.com/060108.htm, Topic 16] about Social Security Disability
benefits payments changing and as she mentioned becoming lower when
she turns 65. I realized immediately that whoever gave her that
information made a mistake…so here is the information from the Social
Security web site under SSD. Here is the link
www.ssa.gov/pubs/10153.html#2. Below is the text reference.
When you reach full retirement age
If you are receiving Social Security disability benefits, your
disability benefits automatically convert to retirement benefits, but
the amount remains the same.
If you also receive a reduced widow(er)'s benefit, be sure to contact
Social Security when you reach full retirement age so that we can
make any necessary adjustment in your benefits.
NOTE: For more information about full retirement age, ask for
Retirement Benefits (Publication No. 05-10035)."
18.
WHITE SUGAR & SMOKING - AVOID IT!
From a
doctor--
"I have had numerous fibro patients present to
my office over the years and they refuse to change their junk food diet
and/or quit smoking. That is also another reason why I say that
there are some fibro patients that don't want to get better because they don't
want to meet me half way. One other thing with
insomnia that would REALLY help you, you have to eliminate all white sugar from
your diet."
I got off all
white sugar 20 years ago. It helped greatly with pain reduction, but did
nothing to help my inability to sleep. The sugar/smoking ideas are in my 100 Tips for Coping at
www.fms-help.com/tips.htm. Since I have been 99% pain free since 1996 - www.fms-help.com/painrelief.htm,
I do allow some sugar into my diet and I eat a very balanced and healthy
diet. But as puny as I am, I think that taking up smoking or drinking
would be suicidal! I have to guard my health VERY carefully so I can keep
on working, functioning and enjoying life at least a little
bit. I am still unable to travel more than 25 miles without
debilitating fatigue (it's a brain thing). A list of meds, supplements,
and other helps I use now is at www.fms-help.com/what.htm.
19.
COMMON COOKING INGREDIENTS THAT ACT LIKE MEDICINES
From a
reader--
Article made me
hungry....ha!
20.
SLEEP DEPRIVED BRAINS
From a
reader--
"Sleep deprived brains alternate between
normal activity and 'power failure'"
21.
NERVOUS EXHAUSTION & DOG MAULING CAUSED WOMAN'S FIBRO
From a reader who
is a pianist--
"My fibro began in earnest in 1979,
like you, after the extreme stress of practising 7 hrs a day (and several
hours over and above that strictly 'visualizing' the music and the physical
playing - even with a metronome going). And being a newlywed, trying to be
a 'good wife', and also teaching, and other family stresses.... My brain
also went into overdrive, and couldn't stop the 'electrical activity' - I had
severe adrenaline rushes every few minutes, and really didn't sleep more than a
few minutes at a time between these rushes. I had what back then
they would call 'nervous exhaustion'. Ever since then,
I have 'screams' during my sleep - thankfully now infrequently, but back then
and for several years, I would awake shortly after falling asleep with a
blood-curdling scream. Then my system would 're-boot' or
something. Anyway, although I felt like I was about to die during these
episodes, I was more concerned for my poor husband having a heart
attack! Since we are "Type A" achievers, everything I did
I tried to excel in, even if it went 'against the grain'. A recipe
for fibromyalgia.
What then drove me over the edge was a bicycle
accident (I was mauled by a 120 lb. dog) about 8 years ago. My
husband is an avid road cyclist, and of course, I tried to keep up with cycling
- pushing way too hard, and injuring manny muscles and tendons along the way (not
unlike practising scales for too long... ) Then the accident, which was quite
serious. Since then, the list was endless - lots of
"itis" tendinits (shoulder, achilles, plantar fasciitis), widespread muscle and
tendon pain, severe IBS, urinary problems, eye inflammation, ear pain
(bouts of tinnitus), sinusitis, extreme stiffness, lower back, hip, neck pain,
etc. etc. It seemed that EVERYTHING I did had a painful consequence.
And I'm still having a hard time coming to terms with my limitations.
Needless to say, there has been depression from all the
pain.
I have found that a lot of my peripheral
problems (e.g. IBS, feeling of inflammation) have greatly improved in the last
year, as I radically changed my diet. I followed a nutrient-dense,
vegan diet for a year and a half (lots of veggies, fruits, beans,
lentils, whole grains but not wheat). I have since added back some
fish, but stay away from dairy, and all processed foods, or white
flour. But I still am struggling with pain, and I'm looking
forward to finding out what has worked for people like yourself."
Minus the
dog mauling, this reader's story is eerily like my own
www.fms-help.com/fibro.htm. "Hard work" WILL hurt you, if you exceed your innate
capabilities. We fibromites are usually like the Avis motto, "We try
harder." About dietary considerations, sometimes it helps, sometimes not.
However, I do avoid caffeine, excessive sugar, aspartame and milk. See my
100 Tips for Coping at www.fms-help.com/tips.htm.
22. MEN WITH FIBRO
Here's a
compassionate response for men with fibro from a female newsletter
reader--
"I just read
your page about men with fibro and had to write. Often when I tell people about
fibro, I mention that mostly women have it, but I always add that men can get it
too, and when they do, it seems to be especially bad. Your writers’ stories
reminded me of just how bad, debilitating and demoralizing fibro can be for
everyone, male and female. Hang in there,
guys!"
And
these poignant comments from a male reader with
fibro--
"It is nice to actually hear and read from men
www.fms-help.com/men.htm who have
this horrible disorder. Most people feel that men are not supposed to have
something which by nature resemble psychosomatic symptoms. Society does not
accept such weakness in men and easily condemn us who have Fibro and label us
malingerers. This disease has
ruined my life. I have lost every
romantic rellationship I was ever involved in and
cannot make any type of plans because
whenever I do; they get disintegrated by off the wall and sudden flaring bizarre
symptoms. At times I almost feel that this Fibro has a conniving and
wicked ability to interfere and act out in an intelligent mannner at
inapropriate times, as if it has a mind of its own.
I have to design my life and everyday activity around this awful
disease. I do not feel that I'm in control of my
environment. Having lost God-given natural abilities which
all men possess such as" The ability to sleep naturally and the ability to have
a bowel movement every day" is enough to rob one of any quality of life. These
are just the chronic symptoms and do not include the multitude of other weird
symptoms who decide to manifest anytime they feel. Upon reflecting on 20
years of dealing with
this repugnant
plague, I have realizeed that I have become stronger as time
passed and that I have also learned a lot about the disorder. I continue
to maintain faith despite all the frequent setbacks and thanks all those
who contribute in promoting the awareness of what it is like to live with Fibro.
I want to thank you for the moral support that you have been able to convey
through your website
www.fms-help.com."
23.
"MEDICALLY FRAGILE"
From a reader
about how to get others to understand fibro--
"Have you ever found a way to convey or
communicate to people what you struggle or struggled with, healthwise. For
example, just one thing that I deal with is body
temp dysregulation. I always have, to one degree or
another. I was recently (9 months ago) bumped [from one job to
another]. In my new job, for many months, on a daily basis, sometimes on
an hourly basis, people would comment on how I was "always dressed for
summer." After a while, in spite of the fact that I knew that these people
did not have bad intentions, it really gets on my nerves. There are other
things as well, such as medical fragility or a need
for vigilance in order to maintain some semblance of wellness or ability to
function from day to day. People don't understand, as you
well know...that one is not being 'anti-social' etc, but assume this to be the
case. Communication is important to most people, and I find that I am
always wishing there was a way to convey my experience in a few words or
less."
Wow. Wish I
had an answer to this....especially when it comes to your job, you don't want to
tell people you are sick, especially bosses who might find someone "healthy" to
replace you. If you have feedback, write dombush@bellsouth.net. I think we all face the problem of lack of understanding
and how hard it is to explain our illness to others because it is just soooo
weird!
24. INTERVIEW WITH DOMINIE
About my early
FMS experiences - uncensored
25. THIS FIBROMYALGIA VIDEO IRRITATES
ME!
26. ARE YOUR
COSMETICS SAFE?
27. DIET COKE TO
DROP ADDITIVE IN DNA DAMAGE FEAR
From a
reader--
28.
SLEEPLESS
From a
reader--
"I don't sleep, I do sleep but all at the
wrong times!!!!!!!! Broken circadian
rhythm. I am looking for a specialist in this area. The BEST. Do
you know of any or any published reliable research?"
29. DYING WOMAN WAKES
AFTER TUBES PULLED
Link from a
reader--
Yipes! Thank God they didn't
start harvesting her organs for donation too quickly!!!
30. MERCURY LEAKS
FOUND AS NEW BULBS BREAK
31. DRUG SIDE
EFFECTS??
"I have really been sick for weeks , I had chills, fever, not
sleeping well, headaches. so I went to the doctor and they took blood,and
x-rays. the results showed everything was a-OK but I had these systoms the doc
asked me how much of my one drug was I taking which is fentanyl he said I was
going through drug withdrawal cause I was not getting the correct amount, need
to up my dose. so I will tell my pain doc, but I just wanted to know have you
ever went through this or know anything about it??? - Darlene"
This doesn't sound right to
me. Seems that an overdose of a drug might cause these problems, but
an under-dose?? I wonder if this could be a virus??
32. DOM'S
UPDATE
MEGA THANKS to all
of my caring readers who prayed with me as we awaited word about the
fate of my uncle (age 90), his wife, and family who were near the epicenter of
the earthquake in China. We finally got news that they were alive and well
- thank God!!!! But our prayeerss continue for the victims - more
everyday - as thousands of violent aftershocks continue to destroy people and
their homes. We contributed to China relief through Samaritan's Purse http://www.samaritanspurse.org.
There was little or no media coverage, so I watched China earthquake
videos online and broke down in tears at the tremendous
suffering! I've been reading Matthew 24 and the book of
Revelation that tell about earthquakes, famines, disease, etc. that happen in
the end times. Thought-provoking reading.
Well, many things
happened this month....despite the stress involved (a fibromite's worst enemy),
I was thankful for opportunities to serve my community. I sang at the
funeral of a 14 year old girl who passed away, learned a lot of challenging
piano music for a fantastic cantata at church, helped my students prepare for
the Spring Recital at our School of Music, had several sets of company at our
house, and was also very worried and prayed mightily for our family and
everyone in China. I felt carried along by God's grace and His will....I'm
sure sustained by the prayers of many, and grateful for meds and
supplements www.fms-help.com/what.htm that
help me function.
Having spent many
years as an invalid and semi-invalid - www.fms-help.com/fibro.htm
and www.fms-help.com/fatigue.htm,
I don't take my health for granted. I've learned ways to manage my
illness, but FMS/CFIDS is always "running in the background" ready to ruin my plans! I
have to pay careful attention to my health and "zap" any little problems right
away, or they render me non-functional very quickly. Like most
of us with FMS/CFIDS, I am prone to viral illnesses, infections of all
kinds, sleep problems, depression, anxiety, fatigue, cognitive difficulties,
etc. But my absolute worst enemy is STRESS! I have been
trying to retrain my amygdala to not over-react to stress (ha!) I
tell myself a lot of encouraging things and try not to focus on problems (ha
again!) Seriously, I try to trust God more and more and yield my will to
His plans for me, even when I don't think I'm adequate or
able.
Strangely....ever
since my exposure to toxic mold in 2005 www.fms-help.com/mold.htm, I have
not been able to travel more than 30 miles without debilitating fatigue.
It's not physical, but some kind of mental thing happens to me - I
just can't take in all the sights and sounds and the jostling of
travel. My body can't maintain homeostasis....and
forget any kind of circadian rhythm! See "Drained by the Brain" at
www.fms-help.com/yuppie.htm.
FMS/CFIDS makes my
life less than it could be, but just when I start to get depressed about having
fragile health (see #23 above), I meet people who have a LOT worse problems than
I do, and I gain perspective once again. Anyway, I am on a short leash
these days - it extends about 30 miles....ha!
Your fibro
friend,
Dominie Soo Bush
II Corinthians
1: 4 - "[God] Who comforteth us in all our tribulation, that we may be able to comfort
them which are in any trouble, by the comfort wherewith we ourselves are
comforted of God." Visit Dominie's FMS/CFIDS Homepage at
www.fms-help.com for Fibromyalgia and Chronic Fatigue Syndrome sufferers and their
families.
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DOMINIE'S FIBROMYALGIA & CHRONIC FATIGUE SYNDROME
HOMEPAGE