*** DOMINIE'S NEWSLETTER ***
JUNE 2005
DISCLAIMER: I am not a
medical doctor. I am a fibromyalgia/chronic fatigue syndrome survivor. The
purpose of this newsletter 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
newsletter.
Scroll down this page to read Topics
1-19:
1. LETTERS FROM READERS
2.
UPDATE ON THE MILLION LETTER CAMPAIGN
3.
KIRSTEN'S FIBROMYALGIA SURVEY
4. DR.
RODGER MURPHREE (revisited)
5.
LUNESTA FOR SLEEP
6.
COCCYX REMOVAL (revisited)
7.
PROVIGIL (revisited)
8.
CHECK YOUR MEDS!
9.
MILNACIPRAN (revisited)
10.
BREAST REDUCTION
(revisited)
11.
VULVODYNIA
12.
MORPHINE
13.
NATIONAL FIBROMYALGIA DATA BANK
14.
MULTIPLE CHEMICAL SENSITIVITIES (MCS)
15.
BEXTRA RECALL
16.
SLEEP TAPES
17.
WHEAT & DAIRY
18.
BREATHING & CFIDS
19.
BRAS
20.
NEW CFIDS BOOK BY DR. SHARON KIRK
21.
VITAMINS UNDER ATTACK
22.
RADON THERAPY
23.
FATAL INSOMNIA & MAD COW DISEASE
24.
FIBROMYALGIA - A DISEASE OF THE CENTRAL NERVOUS SYSTEM
25.
"ALL NATURAL" SLEEP PRODUCTS REVIEWED
26.
SAVE MONEY ON PRESCRIPTIONS
27.
UPDATE FROM SLEEPLESS MAN
28.
WORK FROM HOME?
29.
ADRENAL REBUILDER
30.
BETTER SLEEP
31.
GRANTS AVAILABLE FOR THE ILL
32.
HHV-6A VIRUS & CFIDS
33.
GOOD TV SHOW ABOUT FMS/CFIDS
34. COMPASSIONATE LETTER BY A DOCTOR
35.
NASTY PHARMACIST
36.
FREE MEDS LINKS
37.
PSYCHOLOGY TODAY???
38.
HISTAMINE
39. LAB TEST FOR FIBROMYALGIA
40.
LYME DISEASE OR FMS/CFIDS?
41.
BODY PILLOW
43.
SPIRITUAL UPLIFT CORNER
44. DOMINIE'S PERSONAL UPDATE
1.
LETTERS FROM READERS
"I've been literally
mesmerized by your web site www.fms-help.com and can't thank you enough
for all your hard work, efforts, lost energy and pain in getting so much
information out."
"You are really doing a great service by sharing your information with all
of us challenging an impaired autoimmune system."
"I wanted to thank you for the wonderful
resource you have provided via your website."
"I am amazed that I am still getting practical help
and spiritual inspiration from your wonderful website!!! I bless the day that I
so blindly stumbled upon your wonderful information. I have been able to
not feel so all alone in my struggles."
"Thank you so much for the obvious
time and research that you have invested into your
website."
"Thanks for
your blessed assistance in supplying and sharing information to so many of us in
the CFS suffering or coping or
surviving mode."
"I found you
originally when I was seeking marital help on the internet. I made a copy of
your marriage survival kit www.fms-help.com/marriage.htm
- it is wonderful. I did get many many words of wisdom from
this."
"I love the
immune balancer you recommended. I think I'll be on that for life! Also,
I've lost 8 lbs since taking it, I think because my digestion
works better!"
"I am so
thankful for the internet and all the information there. It also gives me
hope, because I can still connect with others even when I'm stuck at
home."
"I just love your web page(s) www.fms-help.com and am so happy to have
an actual resource that I can look at and know the person that has/is
writing it knows first hand what is going on--because
you are one of US."
"DEPRESSION IS NOT THE CAUSE OF FIBRO, BUT A SYMPTOM OF
IT. NOT EVERYONE WITH FIBRO HAS THIS SYMPTOM, SO THAT BLOWS THE DOCTORS'
THEORIES OUT OF THE WATER. SAME GOES FOR THE DOCTORS WHO SAY YOU ARE FAT
THEREFORE IF YOU LOSE WEIGHT YOU WILL BE FREE OF ALL THE PAIN. NOT ALL OF THOSE
WITH FIBRO ARE OVERWEIGHT, SO HOW DO THEY EXPLAIN THOSE WHO ARE THIN IN
PAIN?"
"I just discovered your website this week and have read it
repeatedly. I am overwhelmed to learn that what I am going through is
not in my head."
"I was so sorry to hear about your
father. I lost my dad 26 years ago and quite often it
still feels like he will walk in the door or be on the other end of the phone
when it rings. I have seen the beautiful tribute that you put together for
your dad www.fms-help.com/eulogy.htm Your
love shows through lke a beacon. I'm sure he woud be very proud of you.
It is a wonderful honor to his life."
2. UPDATE ON THE MILLION LETTER
CAMPAIGN
On May 1, 2005 many thousands
of letters were sent to government and media outlets in an attempt to create
awareness of fibromyalgia and chronic fatigue syndrome in our society. A
HUGE THANKS TO ALL WHO PARTICIPATED AND WORKED SO HARD TO GET THEIR LETTERS OUT
DESPITE ILLNESS!!! Pattie Caprio, the MLC founder, has been receiving
feedback from some of the places that we wrote to. Please visit www.fms-help.com/letter.htm for
the most current update on what's happening!
3. KIRSTEN'S
FIBROMYALGIA SURVEY
I received this appeal for help with a
fibromyalgia thesis--
"I'm Kirsten, I was diagnosed with Fibro
about 4years ago, but believe I've had it for much longer. I am doing
a thesis on Fibromyalgia and the effects of 'nutritional supplements' &
'alternative therapies' (e.g., vitamins, homeopathic remedies, exercise,
massage, etc.) I need a minimum of 100 people to survey. The survey
includes questions like, gender, age, country, when you were diagnosed, what
medications/supplements you take and what other alternative therapies you
use, etc. Everything will be kept strictly confidential. If you or
anyone you know would like to take part in my survey, please ask them to email
me & I will email the survey to them. My email address is: Rugergirl8539@hotmail.com Thank
you! - Kirsten Lee"
4. DR. RODGER MURPHREE
(revisited)
From a newsletter
reader--
"I AM
TAKING A FIBRO-FOG SUPPLEMENT THAT CAN BE ORDERED ON DR. RODGER MURPHREE'S WEB SITE THAT HAS REALLY,
REALLY HELPED ME!! I AM FINALLY
ABLE TO GET MORE THINGS DONE, HAVE BETTER CONCENTRATION, BETTER ORGANIZATION, ETC. SINCE I STARTED TAKING IT ABOUT
A MONTH AGO. IT CAN BE ORDERED AT
www.Dr.Rodger.com or www.fibromyalgiacfsstore.com FOR $48.00 FOR SIXTY TABLETS.
ALSO, FOR MORE
INFORMATION, HIS PHONE NUMBERS ARE:
1-888-884-9577 AND 1-205-879-2383. I ALSO TAKE HIS CFS/FIBRO FORMULA DIETARY SUPPLEMENT AS WELL AS HIS
ADRENAL CORTEX (250 MG) DIETARY
SUPPLEMENT HAVE ALSO HELPED ME A WHOLE LOT. I AM ALSO STILL TAKING YOUR IMMUNE SUPPORT PLUS "MUCINEX"
TABLETS (OTC), THE GUAIFENESEN
SUPPLEMENT THAT IS ALSO RECOMMENDED FOR FIBRO PATIENTS. IT HAS HELPED MY IBS PROBLEM A WHOLE LOT! IT REALLY
FIRMED UP MY BOWEL MOVEMENTS AS
NOTHING ELSE HAS." [NOTE
FROM DOMINIE: I am presently reading Dr. Murphree's books and I'm
fascinated! He discusses in detail many of the same ideas that are on my
website www.fms-help.com
-- these are things I learned by trial and error since 1982, when I developed
FMS/CFIDS. Dr. Murphree is a very compassionate person. How
refreshing since so many of us have been blown off by doctors as "head
cases!" See my Good Doctors/Bad Doctors page at
www.fms-help.com/doctors.htm.]
5. LUNESTA FOR
SLEEP
Has anyone tried Lunesta yet? It's
being advertised widely for people whose minds are racing and they can't fall
asleep. Please write me at dombush@bellsouth.net if you have had experience
with this new sleep med. Here are some links about
Lunesta--
6. COCCYX REMOVAL (revisited)
"Guess it is true
different strokes for different folks, as the removal of my coccyx was a big
jump ahead in my FM getting worse."
7.
PROVIGIL (revisited)
In the last newsletter www.fms-help.com/May2005.htm I
asked for readers to write to me with their experiences (good or bad) with
Provigil. Below are some comments I received--
1. "I have just started on Provigil,
about 2 weeks now. The first day I felt
nothing. The second day I thought
well maybe I feel a little more energy.
The third day I was on fire, never
had such a great day in my life, it was
like I was cured, I never felt that
good in a very long time. The 4th day, I
crashed. I took like a
million steps backwards both pain and fatigue wise. I
think what
happened is the med made me feel I could do more, but I pushed
too hard, I
overdid it, I got carried away. I really didn't do that much
compared to a
regular life, but for me, I did way more than I can usually,
but I felt I
could do it, and so I did, But really I couldn't do all I chose
to. And the
remainder of that weekend continued to be a great challenge on
my body. Now,
as I evaluate the situation, I feel the med has definitely a
benefit.
It is not a miracle though. It does not make you all better. But it
does
give you some extra energy so that you can perhaps do a few more things
easier, the key a few more. What I have tried to explain to people is how
kind of surreal it is being on the medication, cause you it does have the
ability to give you less fatigue/more energy, but you still got the same
body, you still got the same pains, the med does not seem to affect those
issues. So you are like a very old crippled person like thing, with energy,
and you are like even sometimes, hey, why don't I go for a walk,lol, heck
even go for a jog, but then you stand up and walk to the bathroom and
realize your body can barely do that, let alone jog. The energy is trapped
in this disabled body, and has
nowhere to go. I find myself not knowing what
to do with myself.
Though, I have also realized that over time, my body has
adjusted more to
the med, and I feel more comfortable on it, and am learning
how to adjust to
it and adapt to it and allow it to positively improve my
quality of life
despite these conditions. I definitely think it is worth a
try for people.
The only thing is it is very expensive and many insurance
companies require
prior authorization and many insurance will not cover it
because of the off
label use of it. Mine refuses to cover it. So I am
taking samples from
my doc for now. This week has been a rough week.
My pain level has been extremely intense
and my fatigue has been downright debilitating. I just am holding on.
I
suffer from Fibromyalgia. Unfortunately, I also, even more so, struggle
with
Systemic Lupus (SLE), and then the Fibro too."
2. "I
had to go back to work after my husband took a HUGE pay cut and after being
denied for disability twice. I knew it was something I HAD to do
regardless of how I felt (just to help our family not to become homeless).
Provigil has allowed me to be somewhat alert for my job (4 days
per week). I usually can still fall asleep when I get home (for a
nap)--but during the day I don't know how I would function without
it. The ONLY side effect I have seen is that my blood
pressure went up a bit. I believe it's a
Godsend!"
3. "My
Neurologist has just put me on Provigil for fatigue. So far it's
helped somewhat."
4.
"I've been taking Provigil for 2 weeks and let me tell you it
makes a huge difference on my fatigue! What I like is that it doesn't
make me jittery, "speedy", or alter my mood/personality in any way.
I'm still me, just more alert. It does not, however, take away the body
fatigue feelings, that "heaviness" in our limbs we often talk about.
But with my mind alert I can now tell my body what I want it to do and I don't
focus on how tired my body is. Before I took it I had to nap 2-3 hrs every
afternoon and it was all I could do to stay awake in the morning and care for my
kids.I didn't leave the house after noon as I feared falling asleep at the
wheel. Now I go all day with an even energy level and no naps! It feels
strange being out grocery shopping at 4 in the afternoon because I haven't
been able to do that for years! I only take 1/2 a pill -
it's very potent. Also I'm not sure if I'd build a tolerance taking it
long term so have a few days every week that I don't take it. So far I haven't
found it to be addictive. If I'm really tired and have a chance to nap I'd
prefer that over taking the drugs, but for the times I can't nap I take it,
especially when I'm driving!"
5. "I currently take Provigil on
a PRN basis. If I need to go to an appointment, be up with my
children or have an early morning meeting at work, I take the
Provigil. When I originally tried
it, I was on a Methadone which was giving me terrible side
affects including the inability to stay awake. My doctor prescribed
Provigil. I took one pill with no affect, so my doctor upped it to two
pills. Apparently, Provigil is based on ones body weight. I did find that it
helped me stay awake, but if I needed a nap I could still easily take a short
one. Since, I stopped the Methadone and
I have started controlling my own dosage on most of my PRN meds (i.e...
Provigil, Loratab and Ambien) I have found, if I take 1/2 a Provigil
around 5 am and go back to bed that I awake much easier when it is time to get
up. Then I take the other 1/2 after I am awake. This sustains me throughout the
day. I am able to stay awake as long as I need, yet still take a nap if I have
the need or opportunity. I have no side
effects from the Provigil. Not anxious, no 'speedy' feeling,
nothing. I am just able to be awake when I need to be. My GP also told me that
if I wanted to try taking the Provigil on a daily basis, it might
actually improve my night-time sleep. Provigil is suppose to give you a
more restful or fulfilling night's sleep. Just not sure that I want to add
another pill to my daytime routine. Right now, the PRN basis works for
me."
6. "I have been on provigil for
several months now. Before my new doctor placed me on provigil I had no energy
at all. I was sleeping day and night, consequently very depressed. Once I
started taking only 100 mg of provigil it was a wonder prescription for me. I
had so much more energy. I am suppose to be taking 200 mg, but my health
insurance company, BlueShield of Northeastern NY, apparently doesn't believe in
CFS. They have denied me payment for this very expensive prescription. Now I
find that after taking Sonata for insomnia, that I can get only 12 tablets per
month through my health insurance. I wonder what I do for the remaining insomnia
nights of the month. I cannot imagine how good I might feel if I
could take the whole tablet. The only side effect with provigil is, be careful
how much you do physically because of the energy level you will have, because by
overdoing, it will throw you into fibro flareups...Once you learn that your body
does not like the energy level that you have from provigil, then you learn to
try to pace yourself."
7. "My neurologist gave me free samples
of Provigil for two weeks. He thinks I have ADD, I am not sure about that but
Provigil didn't give me any side effects. Now I am trying Straterra. The
Provigil is not covered by my insurance company, it would be $125 a month! First
I was put on a very small dose of Ritalin but I hated it. I kept having horrible
nightmares. As soon as I would calm down enough to go back to sleep I would
wake up with another one. The same doctor
told me that I have major depression. I didn't even realize it! I'm taking Paxil
for that and think it is great. No side effects for me and no crying
jags."
8. "I
have been on Provigil for about 9 months now. It's been a real
blessing. I used to take one in the morning. The fatigue still
'plagued' me, and my doctor said to go ahead and take 2 in the
morning. To make a long story
short, I'm back to one in the morning, because it just didn't seem like 2 made
any difference. My P.A. told me to keep a diary for the first 3
months. I did that, and it seems that the one pill (200mg) did it for
me! Ihave been much more awake lately and seem to be a little more
'energetic.' I take a 200 mg. once every morning, and I must say, it has
really helped. I find I don't need my 'daily' nap like I used to have to
take either. So, in closing,
yes...Provigil has helped me be more alert. I don't ever
get that 'speedy' feeling either. It just helps me to get through most
days without my eyeballs starting to droop and feel heavy. I can actually
have a full conversation, without 'nodding' out on someone! I haven't had
any kind of adverse effects from taking Provigil. 200mg. is the right dose
for me. If I take 400mg, it doesn't seem to make me any more awake and
refreshed than the 200mg. Well,
that's my experience with Provigil. Everyone is
different, of course, so it is highly recommended that they talk to
their Doctors about taking this med."
9. "Yesterday, I received a letter from
the health insurance company explaining why they won't pay for Provigil. They
said that the diagnosis was not consistent for what they authorize. They only
pay for it if a person has narcolepsy."
10. "I have been taking Dexedrine
Spansules for the severe fatigue for several years. Last year I asked my doctor
if I could try Provigil for awhile, I had heard about it on a message board I
belong to and quite a few people had posted that it really helped them. Plus I
don't think it's an amphetamine like Dexedrine. I tried it for several weeks,
but it didn't do anything to relieve my fatigue, so I went back
on the Dexedrine. I have also tried Ritalin, and that too didn't do anything for
my fatigue. While most people with CFIDS/FM are med sensitive, I'm the total
opposite, I'm med resistant, so that could be the problem."
8.
CHECK YOUR MEDS!
Drug interactions could be a matter of
life and death. A young mother I knew when she was a high school
student died coming off of anti-depressants last month. See www.fms-help.com/meds.htm and check
your meds!
9.
MILNACIPRAN (revisited)
In the May newsletter www.fms-help.com/May2005Page2.htm
(Topic #16) several readers gave their comments on Milnacipran. I asked for more
feedback and this is what I received--
1. "I must be on a 'drug' kick this
week! I used to be 100% against taking anything that wasn't 'natural' but now
I'm desperate for anything that helps! I would really caution anyone not to
take Milnacipran if they were taking any other anti-depressants
or natural seratonin enhancers, and if possible work with their Dr. on it.
I've read online that several people order it from Europe but their Dr. helps
with the dose/monitoring of it."
2. "I'd like to share my
Milnacipran experience with you. I have been in a Phase lll
study on this drug since February 28th. My doctor is one of the research
physicians. He put me in this study when he noticed
what-ever-was-chronically-wrong-with me always flared up when my husband's
conditions worsened. I had suffered with this 'what-ever' since the early
1980's and was told by many doctors that I was a 'highly functional depressant'
among other negative things that is a result of a stressful life
style. I knew what I had without the doctor's diagnosis but the
problem was; without proper medication, treatment and patient
education there was no relief for me or my family. So many years of ignorance
cost more in jobs, money, family management and self-esteem than I care to
admit.. Who would not be depressed under those conditions? I hung onto my
sanity by changing the word Depressed to
Oppressed!...A very long story that all Fibros
know so well that I need not detail it now. I just want to say that
before I started seeing my present doctor (a D.O.) I could not walk without
a cane; did not sleep nor even rest. Muscle cramps became total body
cramps and I was on heavy duty anti-depressants, pain pills and Vioxx for my
very obvious Arthritis. Since I am over 65 I have other health issues and was
taking 13 different pills a day. The only thing that I had going for me
was to be blest with medical and drug coverage. My heart goes out to those who
cannot get any medication or treatment without medical and drug coverage.
However, my husband of 36 years has been in bad health for the last ten years
and I have to stay on my feet pain or no pain, stiff or not, as I am his
sole caregiver and support. When I entered the Milnacipran Study I was on
a gradual dose increase until I reached the dosage under study. I could
feel the relief from the very beginning and I have had no side
effects! I have relief - not a cure, but much relief. I must
also get regular exercise, eat right and keep my attitude up. I am
able to manage my Fibro so I am able to manage my life. I do water
exercise 3 times a week when I am able to leave up. husband. I do my heavy duty
yard work, clean my own house, putter with my hobbies and most of all care for
my husband. Right now I am in a Fibro flare triggered by my husband's
increasing failing health and hospitalizations but it is manageable. How long
Milnacipran will work for me is still a question because I know my stress will
increase soon. I am just so very grateful that I feel as strong as I do
and have gotten patient education to help me with self care, sleep (oh
blessed restorative sleep), the benefits are many. I say this to you in
hopes that through your contact with others that are suffering but are so
opposed to the label anti-depressant attached to this medication.
I have taken so many anti-depressants over the years and understand why many
suffers say 'no more.' All I can say is that this category of
anti-depressant has (if it is in fact an anti-depressant) given me
encouragement for the future but most of all the strength to deal with the daily
dilemmas we all face.
10. BREAST
REDUCTION (revisited)
"I had a breast
reduction in June of 2003 with the hopes that my back pain would be eased, after
20 years. Sadly, there was no change in the pain, but it was still one of
the best things I've ever done for myself. How wonderful not to have 10
excess pounds of saggy breasts lying on my stomach, pulling my bra down, and
causing awful rashes! Even if the pain is no less, it is a great surgery,
and at least I do not continue to wonder if it might
help!"
11.
VULVODYNIA
From a reader--
"I was thinking of
another issue associated with fibromyalgia which doesn't get alot of
discussion...vulvodynia. I know it's kind of personal but it is
often associated with fibromyalgia and since I experience it- I know how
stressful it can be. These sites had some info about it:
www.diagnose-me.com/cond/C510175.html Dr. St. Amand, MD,
specializing in fibromyalgia and author of 'What Your Doctor May Not Tell You
About Fibromyalgia' believes that all women with chronic vulvodynia have a
form of fibromyalgia. He discovered that at least 11% of his female
patients with fibromyalgia also have vulvodynia (painful genitals).
The guaifenesin therapy for chronic fatigue enhances oxalate crystal excretion
which has been shown to be beneficial in vulvodynia also. (I tried
guaifenesin but it didn't work for me. I did it on my own but I
was pretty careful. I couldn't stand not using any products with
salycilic acid after awhile.) www.vulvarpainfoundation.org/index.html"
12.
MORPHINE
I got this from a reader who had been on
morphine for severe fibro that started after a car accident. Her withdrawal from
the morphine was horrible, but she wanted desperately to get off of it.
This is what she wrote--
"Ladies and Gentlemen: Below please
read this blurb I found on the www!!! Be careful with your meds. I know
they give you relief but is it worth permanent damage. We need to get help. We
are slowly killing ourselves...
'Another use for morphine is to help with
of chronic pain. A friend of mine was prescribed a form of Morphine
to handle her Fibromyalgia pain. Even
though she took it as prescribed she ended up hospitalized with Toxic
Encephalopathy (a chemical poisoning of the brain.) It was caused by the
Morphine. Her brain could not tolerate the Morphine. According to her doctor she
was lucky that she did not end up with permanent brain damage. All
medications have the potential of serious side effects yet most people do not
realize that over the counter medications can be just as harmful.'"
13. NATIONAL
FIBROMYALGIA DATA BANK
From a reader--
"This is the site for
the National Fibromyalgia Data Bank. They will
send you a questionaire
to fill out and when they do studies they
contact you and ask more
questions. It's pretty interesting. I joined
last year.
It's a good, easy way to fight the fight by helping with
research. http://www.arthritis-research.org/fibro.htm"
14.
MULTIPLE CHEMICAL SENSITIVITIES
A newsletter reader sent this link to Jacki's story about
toxins, MCS and CFIDS--
15. BEXTRA
RECALL
From a reader--
"They found Bextra had a high risk
for heart attacks and strokes. They sent
me a shipping package and UPS picked it up at home at no cost to me. I used it
because it worked for me but not worth the risk. My pharmacy would not
refill the medication."
16. SLEEP
TAPES
From a reader--
"I have real problems sleeping and lately have been going
to sleep using paraliminal CDs from Paul Scheele (www.learningstrategies.com)
There are a lot of them and I have several from which I
pick and choose. He recently got together with Bill Harris from
centerpointe and put Holosync onto them. I swear by them for getting to
sleep. I also have a walking meditation CD
from www.brainsync.com which gives me a
load of energy. She does a couple for sleeping too and they have the
binaural beats on them like holosync."
17. WHEAT & DAIRY
From a reader--
"I was interested in your site as I have a long history of
illness - in fact it is mental health issues. Recently I went to a
nutritionalist and she told me to cut out wheat and dairy - 8
weeks on I am floating on air - I cant believe my symptoms have gone - I have
even been able to cut down my medication and am hoping to cut it out altogether
eventually."
18. BREATHING &
CFIDS
From a reader--
"Chronic Fatigue Syndrome is one of the things the Buteyko
Breathing Technique can help with."
19.
BRAS
At the end of the Million Letter Campaign www.fms-help.com/letter.htm, our
team of dedicated volunteers who all have fibromyalgia took a much-needed
break from work and allowed ourselves to be a little silly. Below are
comments (both serious and funny) about fibromyalgia and bras!!
Sorry, male readers, this section
does NOT apply to you. (Aren't you
lucky?!!)--
"Welcome to the more symptoms of
fibromyalgia club. I am short of breath, chest hurts so bad I can
no longer wear a bra - not that there is much to work with there anyway but if I
put one on it immediately flares up my chest wall pain. And then of course
there is the old heart racing like a car revving its engine out of the
blue. Sometimes it lasts for awhile and sometimes it is just a short time.
I did ask my neurologist if the lack of world peace was because of fibromyalgia
several months ago. My reason for that question - no matter what medical
problem I asked about it was always because of the fibro."
(ha!)
"Glad to
hear I'm not the only one who can't wear a bra because of the chest wall
pain. The weight of 'the girls' hanging down unsupported is painful too
though but not as bad. I always feel a little uncomfortable when people drop by
unexpectedly to vist as I never have one on. Lots of crossed arms and huge baggy
dark colored T-Shirts!! I do force myself to wear a bra when I go out
in public but often take it off in the car while I'm driving home because
it hurts sooo bad. I can even do it while driving down the freeway in
traffic - I'm pretty good at it. May have flashed a few people in the process
but when I'm in that much pain I don't really care. And after nursing two babies
I'm pretty used to exposing myself anyway (and no - I did not nurse my
babies while driving down the freeway!). My husband's asked a few times why my
bra's in the front seat because I often forget to bring it in the house.
Hey, maybe that's how we could get some great publicity for the MLC and
get the media to notice us!! Just tell them none of us wear
bras!"
"This just might be the attention getter we
need. It is too funny just visualizing all of us marching in Washington
waving our bras in the air all in the name of
'fibramyalgia'. Maybe we should also
change the spelling of the disease as well!"
"Such a topic...but we all relate. I
can take that bra off in a heart beat. Bra and shoes, always
the first things to go. And don't forget, long car rides
too. We leave for vacation and we are not an hour from home and that thing
comes off. I think some how we need to use this in our campaign. We
will get attention!"
"Shall we start a new campaign? We will all
mail our bras to the same list and we will get
attention!!"
"Thanks ladies for all the funny bra remarks! You are
soooo funny!! I will now laugh everytime I see, say, hear, or think
of the word "fibramyalgia"! And I have such a visual of us marching around
D.C. together waving our white flags. You should be a stand up comic, or maybe a
bra-less couch comic or something--I swear you could publish this stuff and make
a fortune! The next time my neighbor drops by in her form fitted
T-Shirt and her padded Victoria's Secret push up, I will stand
on the porch with my arms crossed thinking of all of you and I
will laugh so hard inside, knowing I'm not alone!!! I've never discussed my "bra
issue" before with anyone but my husband. I think it's so funny how none of
us can stand to have our chests confined!! Another symptom that I haven't
seen listed before!"
"I hate to fly and will never fly
again without tranquilizers. I was on a plane from Altanta, GA to New
Orleans and had a panic attack. When I have a panic
attack I feel like everything is too tight. I took off my shoes
and socks, watch, earrings and unfastened my bra. I am not sure what the
guy next to me thought. I didn't care at that moment."
"I have found an undershirt called Cuddle
Duds that are very comfortable and they are supposed to keep you warm
in the winter and cool in the summer. Since I have just discovered them, I
cannot vouch for how it is going to work in the summer. They are a bit
pricy - 16.00 each but they are worth it. They are like one big giant
t-shirt bra that is comfortable with NO elastic! I bought mine at
Dillard's."
"I have a suggestion for the breast greeting the ankle
syndrome--go to Wal-Mart and get yourselves
a sleeveless shirt with the shelf built in it. I wear
it all the time. And I have enough to work with. I sleep in them and wear
them under everything. The cost is about 8.00 or less. Nylon or cotton
material."
CONTINUE READING NEWSLETTER (Topics
21-44):
Dominie's FMS/CFIDS Homepage (lots of helpful
articles and ideas) www.fms-help.com