DOM'S
FMS/CFIDS/ME NEWSLETTER
August 4,
2007
A compassionate,
informative newsletter for people with fibromyalgia, chronic fatigue syndrome and myalgic
encephalomyelitis
TOPICS ARE IN PURPLE. MY COMMENTS ARE IN
TEAL.
You will find lots of
interesting things in this issue! My personal update is Topic 30. I
have to admit that I feel like a "normal" person now - I've had nearly 9
great weeks in a row, and so far so good! But I remember only
too well the misery of struggling with fatigue, fog, pain and depression, so I
will keep the newsletter going for fibromites everywhere. (BTW, most - but
not all - of my readers are from the U.S., Canada, Australia, the U.K. and South
Africa.)
1. READERS
WRITE
"I really
love your newsletter and eagerly await each one of them. Thank
you for being so committed to us who suffer from fibromyalgia--'The
Invisible Nightmare.'"
"I love the
new format of your newsletter. The 'clip art' adds so much. The animation
brings a smile or two. Thank you and thank God for giving you the
where-with-all to continue writing your monthly newsletters. Each
newsletter is a joy to read and very
informative."
"Your website and newsletter are a
lifeline to so many!"
"Thank you all
for writing and telling your stories. Thanks for taking many hours constructing
this newsletter and printing all points of
view."
"If only you
could some how read my mind and see how just being able to read your writings
helps me, it would bring you great joy."
"I read all
your newsletters and am still amazed at how much you manage to find out for your
fibro friends. Thank you, Thank you, Thank
you."
"I just wanted to let you know how
much your site www.fms-help.com has
helped me!!!"
"I am a faithful, loyal, FMS sufferer, friend
and reader who very much loves your website
newsletter."
"Your website is very
helpful to me, so thank you for all the good
info."
2.
PASSIONFLOWER
From a
reader--
"I have suffered with
Fibromyalgia for too many years – taking one
scrip after the other. I started taking passionflower (available
at health food stores) for a year now and it has helped immensely. It helps at night to release tight sore
muscles and calm down the overactive mind.
Herbs were put on this earth
for a reason and I believe this is one that could help many fibro-sufferers!
I haven’t noticed any side affects
!!!!!!!!! I have to take Lyrica to
help me make it to work (but I worry about the side affects of that). Hope this information helps at least one
person, who is willing to try the herbal remedies……..again tincture is best by
far."
3. HUSBANDS
UNDERSTAND
Reader 1--
"We are a special group; nobody can
even begin to know the pain we suffer, but my husband at least
tries; He has not been sick in over 20 years... but last
year he got very sick with the flu and he told me if this is what I go through
on a daily basis, then I am to be highly admired and
respected.....he said he cannot understand how I get up and do
what I do in the pain I suffer. When he had exhaustion so bad, he again
was able to understand a bit more. and he thanks God for these times so
that he does not forget what I go through. I thank GOD for this
wonderful man. I love Him dearly. I ache at the thought that out
there we have precious people suffering all
alone."
Reader
2--
"My husband was not very understanding at
first - to him, I was superwoman. Since seeing all of the material that I have
seen and knowing that about 30 percent of people with fibromyalgia are
on disibility, and most work part time, he now understands. He is very
kind and helps me with whatever I need for him to do."
4. KEEP SINUSES
CLEAN
From a
reader--
"For the reader with the sinus
problems: I have been using a neti pot for years.
It helps to clean all of the "gunk" out of our sinuses, using a very mild
buffered saline solution. They're available in many health food stores,
and we actually found ours in a local pharmacy!"
[Sinus washing--or
irrigation--helps me too. I usually just "snuffle" some warm mildly salty
water up my nose and gag, spit and choke for awhile, but it really helps loosen
and get rid of congestion before it turns into a sinus infection. Maybe I
should look in to getting one of these neti pots!]
5. FMS/CFIDS SUFFERER IS CARETAKER
From a
reader--
"Just
quickly perusing your latest compilation (fantastic FM/CFS
newsletter!!!!!)
and as I read am struck by two things.
1) how many people with FM and CFS are
prescribed a plethora of drugs
to control or supposedly "cure" symptoms
and
2) being desperately ill and socially ostracized we who
have FM and
CFS are almost every time I read about treatment, told that
another
medication can make the difference or is the missing magic bullet
to
cure us.
Dominie, I have had this illness definitively diagnosed in
1996 but
had it for at least ten years before that so for over 20 years I
have
had it and have tried everything that I have come across to try to
get
better - all kinds of drugs, eating programs, sleeping
aids,
exercises, rest, relocations, etc. and after all of it this is what
I
have concluded. What really helps is being able to rest and sleep and
to
NOT have to be CONSTANTLY badgered by financial worries, social
stressors
(having always to explain why you can't work as much or at
all to family,
friends, co-workers, doctors!) environmental
toxins/extremes/noise,
etc.!!!!!
If we were allowed to recuperate with what we
really need, clean
water, clean air, fresh food, quiet, love and
understanding, no
familial demands and NO major stressors then yes, we WOULD
get better.
These things are required for our adrenals, our organs,
our nervous
system to recover more quickly. However, I find, in this society,
once
you get sick, you're done for. Only the most kind of friends
and
doctors who understand the reality of this illness stick around
and
don't make you feel like you did this to yourself or that somehow
you
are to blame. Yes there is a degree of blame for sure that we can
heap
on ourselves like working 80 hours a week day in day out
(overwork),
then coming home and taking care of a home and responsibilities
and
putting ourselves last, then add kids and family members (trying to
be
a good parent/sibling) and not to mention things out of our
control
like pesticides in our food that we didn't have 60 - 70 years
ago,
etc. etc. etc. However, society at large is not helpful in my
opinion.
It is the minority of society that has been somewhat helpful
and
usually is comprised of family or friends of those afflicted with
this
illness and those who bear it themselves who have risen up,
heroically
and against ridicule, to bring awareness and credibility to
the
reality of the suffering that is FM/CFS.
Right now because our
society doesn't respect or care for those who
have paved the way before them,
I have moved in to care for my aging
mother who has alzheimer's and another
chronic painful illness. I had
to quit university (I was hoping to re-train
myself for another career
that I could hopefully support myself with as
disability income is not
nearly enough to live on), move from another
province and leave all
that I had established to do what was needed. I have
other siblings
but they are too selfish to take ANY time out to help and this
is the
problem. Those who develop this illness are usually the ones who
don't
say no to responsibilities. They ARE the responsible ones and as
the
result of almost always having to pick up the ball when others
won't
or don't do their fare share they develop this and other
illnesses.
I completely resent that for a society for whom I have given
so much
(and continue to at my financial and physical detriment) that
in
return, they once again, try to exploit me to make a buck. We, the
ill
need to be given financial sustenance in order to recover,
not
continually having to pay it out. I think, as a society we truly
are
only as strong as our weakest citizens and, I have to say, that I
have
almost lost faith in the whole system. It is only because,
again,
because of the extraordinary people I have met through this
illness,
who not only try to but DO help that I don't completely walk away
from
society as a whole, and, it is precisely because of all of you,
out
there, who suffer in silence, who are attacked for being ill
and
swindled out of thousands and thousands of dollars in hope of a
cure,
that I continue to explore ways to returning to health in order
to
share any victories I may achieve with you.
I truly believe our society no longer follows true
Christian principles. Might
makes right, the dollar is virtue and he or she
who makes the most of
it is the most virtuous and most worthy of everything.
The man or
woman who sacrifices money for caring for his or her
fellow man or
woman is considered weak and naive and a bad business
person.
Maybe one day society as a whole may remember that
as we done unto others we do unto ourselves. I doubt it, but
it's a hope."
6. CHEST
TIGHTNESS & RESTLESS LEG SYNDROME (RLS)
"Yes I have
had and still do have at times chest tightness. As one reader said, "It is
like a squeezing sensation". I agree there is no set
pattern. I experienced this in August of 2000. I was diagnosed with Fibro
myalgia in January of 2000 along with Chronic Fatigue Syndrome, Chronic
Myofascial Pain Syndrome. When the tightness first started I thought I was
having a heart attack. Since my blood pressure was so high at the same time of
chest tightness I was sent to a cardiologist. Nothing was wrong with my heart.
They told me the chest tightness was coming from panic and or anxiety
attacks. I too, experience the "brain fog", "the dizziness," and don't seem
to have "proper balance." I know for a fact that Fibromyalgia and Chronic
Myofascial Pain Syndrome go hand in hand. I have Dr. Devin Starlanyl book
and would recommend it to everyone with Fibromyalgia and Chronic Myofascial Pain
Syndrome. I also have Restless Leg Syndrome. I would like to
know what other people use for this syndrome as I cannot take
Requip."
[Type "restless
leg" or "RLS" in the Google search box at the end of this page. I have discussed RLS in previous newsletters. Also, there is
a powerful antioxidant that has helps some people with RLS. Write dombush@bellsouth.net for
info.]
7. HEALTH
CAN BE AN IDOL
From a
reader--
"I've
spent a fortune every month on supplements (which do help)
along with hormones that are made up for me as my endocrine system just seemed
to shut down. Menopause at an early age 39, really affected my brain, energy,
etc... I was never able to take an anti depressant as It would cause weird brain
sensations (electrical feeling, brain aches, etc... but have found 5-HTP and
L-Tyrosine along with St. John's Wort seems to work well. Like you sleep is a
problem, but Generic clonopin gives me 4-5 straight hours of sleep (I MG) and
then I usually take a .5 to sleep on and off. I'm now less wired than I was
before so that is an improvement. I am still not sleepy, but do feel so at
times late at night, which then throws off my sleep. I do think there is a brain
connection (virus or something). I have good energy most days, but take things
slower and emotional stress will wipe me out where I have a hard time doing
much. It also helps me to listen to Beth Moore on the internet. She is a baptist
and has some really good teachings. I've realized for some time that my
health has become an idol. This is in God's hands. He could totally
heal me, but this is his prerogative and not mine to
question."
8.
BROKE FROM MEDICAL BILLS
From a reader--
"It seems when it comes to insurance, we are
financially suffering one way or another; if we cannot get insurance
because it includes the entire body, then are we not better off NOT having a
diagnosis? I went to a doctor in the beginning of my fibro problems (when
I became aware of the name of it) and he did a wonderful thing for me; he
did not put down a diagnosis for me for the very reason you are having problems
with insurance. He told me since it has not yet been confirmed, he would put
down my symptoms and continue to give me tests. He did not want to give me
a diagnosis that would be difficult to live with - and that illness at
that time was scleroderma. It is almost impossible to get insurance with
this diagnosis. Well, now that I have more than several illnesses - all
stemming from auto immune problems caused by poisoning, I can get insurance as
long as I get it through my husband's group insurance (they cannot turn
anyone down); but we are in real trouble when my
husband retires in a few years. It CAN be frightening. since my
grandmother was Cherokee, I am trying to prove I have this blood running
in my veins in order to get free medical from the government. I am having
a problem proving it because I need to prove HOW I am related to my grandmother
and I cannot find the records of my father's birth NOR HERS.
What will we do -
those of us who just run out of money? We have used up all our funds and
ended up using plastic as well. We went into flipping houses, but that is
not doing well because in order to turn over enough houses to make money the
right way, you need a team of people; what can we do? What are
others doing? HOW are they affording these things?
I trust my God. I
don't fear the future, even if that future is without medication and that means
living in this horrible pain without the edge being taken off. I trust Him
to see me through it. He does that now. I don't know how I even make
it through NOW without Him. I don't know how anyone out there does it
without GOD'S help. I use to ask Him to take me...take my life; but
I see now that if He had done that, I would have missed out on so much - my
grandchildren, my children and hubby....but they would have missed out,
too....they love me - they enjoy me (believe that one - but it is true!)....and
I see now why He did not listen to my cries of
self-pity."
9. NEURONTIN HELPS
SLEEP
From a
reader--
"Just recently my doctor put me on Neurontin to both help
with my pain and to help me sleep. I'm not sure it has done a lot to help
with the pain (except for some RSD pain that I have in my foot), but it does
help me sleep. Most nights since I started taking it, I go to sleep and
stay asleep for 6 or 7 straight hours."
10. TEMPERATURE DURING
THE NIGHT
From a
reader--
"Do you know of others with FM like me that run a temp
each night of one degree or so. The temp breaks at night and then my temp
is normal in the morning. I thought maybe it was the pain. I take very
little meds--paxil, and flexeril for pain."
11. NATIONAL INVISIBLE CHRONIC
ILLNESS AWARENESS WEEK
From a reader--
"Have you heard about National Invisible Chronic Illness Awareness Week?
It's
September 10-16, 2007, a week to share about the
challenges and prevalence of living with invisible illness or pain. I live with
FM, endometriosis, arthritis, and clinical depression and am so glad for the
opportunity to help others understand about invisible illness. If you'd like to
know more, I invite you to visit
www.invisibleillness.com. They have
banners and a web ring to join to help spread the news! There are also
lots of free articles on a variety of topics that I've been really impressed
with. I'm especially impressed with the free part. There are so few
who do anything for free anywhere--and you're one of them! Thank you so
much for all you do and for your great web site and newsletter."
[A catchy line on the site this reader refers
to says: "DO YOU FEEL LONELY IN YOUR INVISIBLE ILLNESS?
MISUNDERSTOOD? FRUSTRATED? MAYBE YOU JUST WANT 1 PERSON TO SAY,
'I GET IT!' YOU'VE COME TO THE RIGHT
PLACE!"]
12. EARS ITCH AND BURN
"Along with my
Fibromyalgia that I was diagnosed with 6 years ago I have now been newly
diagnosed with Rheumatoid Arthritis to add to the already pain stricken body I
live in. I developed a frozen shoulder on the
right side and have acquired tendonitis in my left elbow. I also have 2 bulged discs in my low back at the L4,L5,
S1 locations. Man is it hard to sleep at night. I can't seem to get
comfortable in any position. Needless to say I
sleep in my recliner alot with pillows under my arms to help support the weight,
this seems to help take off pressure on some of tender areas. I was reading 50 signs of FMS www.fms-help.com/signs.htm and noticed there are a few instances where the ears are
involved "32. low frequency, sensorineural hearing loss ," "34. ringing in
the ears." I have a question for you." I have an
itching and hot burning sensation inside my ear canal."
I have had my ears checked by my Otolaryngologist
and he says I have no ear infections and cleaned my ears of the ear wax
build up. But my ears continue to itch. I haven't
been able to pin point any certain reasons to connect the problem.
Have you heard of this frustrating
nuisance? Anything you may have to offer for
advise would be greatly appreciated."
13. ANXIETY
& SLEEP
From a
reader--
"Before I go to sleep I take: 300 mg
Neurontin, 25 mg Hydroxyzen, 2.5 mg Melatonin and an additional 2.5 mg Melatonin
sublingually (mint flavored by Source Naturals). This works really well for
me now and has for about 2 years, unless I am
anticipating a stressful day: having to get up really early, or a long
drive, or a really long busy day, etc. - then nothing I do works really
well, and some of those nights I never go into deep sleep or sleep more than 45
min-1hr in one stretch and feel 'beat up' and tired the next day. (Yesterday I
had a 130 mile drive before work, 2 hrs. work, and 130 miles home - this
was a wonderful assignment, I had a rental car with a/c, the people were really
nice and welcoming, but after never going into deep sleep the night before,
I was wiped out for the rest of the day, slept on the sofa for 2 hrs. and
really didn't get anything else done, just watched TV)."
[I have had a
problem with "anticipatory anxiety" before big events, trips, performances,
etc. Lorazepam (generic Ativan) sometimes helps. For a list of
things I've tried for sleep, see www.fms-help.com/sleep.htm. I
recently had to go back on Ambien, because it is now a cheap generic called
Zolpidem and affordable at $10. I prefer Lunesta, but a month's supply is
$92. I told my husband how much money he saves by being able to fall
asleep without meds!!!]
14. LYRICA
Reader
1--
"Wrote to my doc about hair loss and
Lyrica and this was his response: 'Thanks for the info, but this is the
first I have heard about it. the study w pos effects of neurontin in fibro used
about 4000mg/day.. many studies w lyrica have been done and did NOT show hair
loss as a side effect. I suspect the hair loss may be due to hormonal
changes from the fibro instead, rather than lyrica. this drug has been
used for over 2 years for nerve pain without this side effect showing up, why
suddenly now? doesn't make medical sense. - Doc
Steve'"
Reader
2--
"I've been on Lyrica for about 4 weeks
now. I take 50mg 3X/day. I still have uncomfortable days but overall
I feel that the medication is helping. I haven't had any
"really bad" days since I started taking it. I've been able to go to
school during the week and work both weekend days since starting it - I'd
had a spell where I could make it through about half of Saturday at work and
then had to call in sick on Sunday because I hurt so bad. For people considering it, please be aware that it can make you
really "spacey" (for lack of a better word) for a few hours
after taking it until your body starts to adjust to it."
[For more reader's
comments on Lyrica, use the Google search box at the end of this page - type in
Lyrica. Then, click on one of the search results (pages). Then, hit
ALT-F (find), type in Lyrica, and it will take you to the exact place on the
page where Lyrica is mentioned. I've been pain free for many years, after
14 years of battling severe FMS pain. See my pain suggestions at www.fms-help.com/what.htm -
scroll toward the end of the page and look for RED
writing.]
15. TRAVEL &
BRAIN FOG
From a
reader--
"I just
read www.fms-help.com/070907.htm
and www.fms-help.com/071907.htm -
I have had trouble driving and riding in the car (and as a teenager on a
motorcycle!) since I was 18, and have never heard of anyone else talking about
it. My car trip yesterday was the most I have driven by myself in five years. I
don't know how to explain to people about my problems driving and that I avoid
driving long distances by myself. When I have to drive somewhere beyond
45 minutes, I allow one extra hour so that I can stop and take a nap
if I start fogging out."
[For years I
couldn't travel more than about 20 miles without severe debilitating brain fog
that caused physical collapse. It was worse when riding in a car as a
passenger than when driving. I attributed it to flickering light and
images affecting the brain and the constant adjustments to equilibrium that have
to be made when traveling. It was horribly fatiguing and exhausting.
However, when I started using my new protocol in June, this went away in a
few days. I am able to travel like a normal person again. It is
great not to have this hindrance anymore. If you want info, write me at
dombush@bellsouth.net.]
16. HOW
TOXIC IS YOUR LAUNDRY DETERGENT?
From a
reader--
17.
ADRENALS & THYROID
From a
reader--
"Went to an endroconoligist to try to get
anwers about adrenal insufficiency and thyroid
all to no avail. The tests all came back fine so I am back to square
one."
[Most of us with
FMS/CFIDS have tests that come back just fine. It's frustrating for both
patients and doctors (except they're getting paid...ha!) Hope more medical
research will turn up answers soon for FMS/CFIDS.]
18. I DON'T DO
MORNINGS
One of my personal
strategies for coping with FMS/CFIDS is that I don't schedule any
appointments or students in the mornings. I teach and work in the
afternoons and evenings only. My earliest morning is a 10 a.m. music
rehearsal on Sunday before the worship service.
I have also learned to
not "jump" out of bed in the morning right after I wake up, but to lie still for
about an hour and doze, pray, think and gently wake up. Then
I slowly get up and take
my supplements, work on the newsletter, answer email, webmaster my site www.fms-help.com, empty the dishwasher, do
laundry and other peaceful chores and activities. Then around 11 a.m.
I cook dinner for my husband for when he comes home from work and then I leave
for my own work. (I'm a piano teacher at a school of music www.fms-help.com/students.htm.)
I could
never have a 9-5 job again with this sleep disorder - see www.fms-help.com/insomnia.htm.
We have a relative who has a great job for fibro folks! She works flex
hours - any 8 hours that she wants to during a 24 hour period writing technical
manuals. Wow! Now that's a dream job for someone with
fibromyalgia!
Anyway, I just wanted
my readers to know that I don't do mornings, and it works great for me. I
am fortunate that the kids are grown and gone. If you have little ones,
you have to get up early and go to bed early.
Since I began my new
regimen on June 5, I have been doing better than ever, but sure wish I could get
rid of the sleep disorder. However, after 40 years of insomnia, it
looks doubtful, so I manage it the best I can with meds, supplements and
lifestyle changes. See www.fms-help.com/what.htm and
www.fms-help.com/sleep.htm for
more details.
I just love that my
readers have sent me ideas to try - some have worked for me and some haven't,
but hey, we are all different, and I appreciate all the wonderful info that
readers send in. Please write me anytime at dombush@bellsouth.net. I may not
be able to send a personal answer, but I do read all of my
email.
19.
DOPAMINE & DR. DRYLAND
From a reader (about
the dopamine article in the last newsletter www.fms-help.com/073107.htm)--
"I e-mailed Dr Dryland's office to find out
if they had a way to test if your dopamine level is normal or not. There is no
test yet.My concern is that taking these two meds can be dangerous and if you
are not sure if the dopamine level is not proper why do it? There is a
natural supplement called Mucuna which is for Parkinson's patients. Again this
could be dangerous as well. I would rather wait until they have a test which is
being worked on. Just wanted to pass this info on to you. I am not discounting
what the doctor thinks but I am always cautious about taking meds if I do not
know they are warranted."
20.
IMMUNESUPPORT.COM
From a
reader--
[Most fibromites are
familiar with this HUGE online resource for FMS/CFIDS patients. If not,
take a look! They have tons of interesting articles and research and a
free newsletter too.]
21. BE
YOUR OWN ADVOCATE
From a
reader--
"I am a
survivor of this dreaded thing I hate even giving it a name. Two Neurontin,
elavil and klonopin at bedtime help me sleep. I take 2 neurontin in the
morning with wellbutrin. I for the most part I am pain free sometimes I
can go for a number of days of being pain free, then something will kick in
and I'll have either burning pain up the shoulders to the back of my head.
Sometimes my hand or foot will burn, I have an SI joint injury and I will get
burning pain there. I was once a hopeless bedridden case, I ended
up in a psych ward and the doctor was the one who tried the neurontin, elavil,
and klonopin. I slept for the first time in 10 months. The chronic
fatigue and brain fog went away, I am pleased about that. I think
neurontin has been my life saver. Two years ago I was bedridden, hopeless,
in pain, brainfogged and had prayed for death. Now I'm better. I'll
take the burning pain when it comes. I hate this thing that we all have
and I really should be an organ donor so after I die, the scientists can try to
figure what went wrong with me at age 39. I'm 42 now. To my fellow sufferers, you have to become your
own advocate. You have to fight and never give up. I still
struggle with pain, my handwriting has become a mess and I don't have carpal
tunnel. Fibro plain sucks is all I can say. I hate when people say
you look fine, I feel fine most days, I get upset but I wouldn't wish it on
anyone, not even my sister-in-law whom I say is Satan's daughter.
LOL. What really stinks is that what might work for one person
might not work for another - check with your doctor, or find one who believes
this scourge exists. Right now, my jaw is burning, my left hand,
arm and shoulders are burning. I feel like my jaw is going to lock up
again. Shoot, I hate it when that happens. Anyway,
don't give up. It's a fight. Best to all my fibro
friends."
22. DISABILITY
WON
From a
reader--
"In pain can't write much this time. At
last after almost 10 years I won my case for SSD & SSI. I
followed the advice from your site. Thank you soo
much."
23. READER
NEEDS FEEDBACK
"Hopefully, I'm beginning to be at the end
of another of those killer fibro crashes which lasts a minimum
of one week. It has been so bad, I wanted to jump out the window from my
eleventh story condo building. Do you know if any of your readers have had
experience with the drug Lyrica or Medicinal
Marijuana? If so I would like to hear from them."
[I got a call several years ago from a man who wanted
his wife with fibro to try marijuana. He sounded a little stoned himself,
so I wasn't surprised she was balking. Has anyone tried this? For a
list of things I use, see www.fms-help.com/what.htm -
about halfway down this page, there are some pain suggestions in
RED.]
24. NEWLY
DIAGNOSED
From a reader--
"I am 26 and was diagnosed with
Fibromyalgia and CFS last August.. This goes along with
hypothyroidism that I have had since I was 12.
I knew that
throughout my teenage years something was wrong with me. I was depressed, tired,
and I ached all over. Nothing ever really helped me as far as otc pain meds. I
got to where I just accepted what was happening to me... I thought that I would
always have to live with the pain. No one understood how bad I hurt and I still
don't think they do. I feel, at times, like I have been beat with a
baseball bat! I began to look into the symptoms of
different illnesses. I came across a website about fibromyalgia. I was stunned.
I sat and tried not to cry. As the tears flowed, I felt a
relief. For the first time, I knew what was wrong with me. I made an
appointment with a new doctor - I had been going to a nurse practitioner for 5
years and she did nothing except prescribe me pain pills. My new family doctor
referred me to a Rheumatologist. He tried me on Lyrica. I took it for
about 8 months and had no relief. I have tried many other medicines, most didn't
work. I go for chiropractic care once a week and also get an hour
massage. I currently take thyroid medicine, a muscle relaxer (Norflex), an NSAID
(Mobic), and something to help me sleep!!! I see my family doctor every 3
months. I think that I finally have the meds that I need to help me function
everyday."
[I was diagnosed in 1982 www.fms-help.com/fibro.htm - I am glad
there is sooo much more information and support for fibromites now, thanks to
the internet!]
25. EFFEXOR (VENLAXAFINE)
WITHDRAWAL
From a reader in South
Africa--
"I found your site www.fms-help.com really interesting. I was
diagnosed with
Fibro in about September last year (06) and was immediately
given
Venlaxafine [Effexor] by my doctor. I took it for about four
months in total and
he had doubled the dosage because it did not seem to
help much. I came
off the drug in January this year and discovered that it
had been
working to an extent, as my pain really increased exponentially
after
that. I came off it because I still had pain and there were so many
side-effects that I could not tolerate - weight gain, cold sweats, bad
constipation and headaches.
Since I came off the drug (it took 4 or 5
months coming off it slowly,
with horrible side-effects from the
withdrawal - please warn people on
your site to be very careful with
Venlaxafine - it is very difficult to
come off the drug) I have
lost 4 kg and the rest has normalised. However
my pain has been really bad.
I don't think I have Fibro as badly as you
do; your symptoms sound horrible
[www.fms-help.com/fibro.htm] and I
am sorry that you have had to
endure so much. My symptoms are (all those
ever mentioned on any site)
generalised pain, in all my joints (but it is
not arthritis) and
shooting pains constantly in my legs and wrists. I have
horrendous pain
in my lower back and my left hip. I am
forty years old and have had back
pain for the past 21 years, since shortly
after an accident where I fell
off a chair I was standing on, onto my
head...
I have tried so many things - everything except acupuncture which
everyone recommends, but which I really am very chicken to try.
I have
started seeing a homeopath and after a brief introductory session
he has
given me Bryonia. Can't say I have felt much improvement in the
past 2 weeks
since I started taking it, but on 14th August I will see
him for a long
session to try to come to the root of things.
I follow a very healthy diet
and try to eat only whole foods, fresh
vegetables, salads and fruit every
day.
I haven't read the whole of your website
as there sure is a lot of it,
but I hope to work my way through it. I feel
constantly exhausted even
though I go to bed early every
evening (I am usually in bed by 8pm and
read until I fall asleep, any time
between 8.45 and 9.30pm.) I do have
to get up at 5.30 every day so maybe
this is why I am always exhausted,
but I simply cannot fall asleep
early in the evening.
Anyway keep up the good work with the website
and let's hope they find a
solution soon for fibro, for everyone who suffers
from it! and for that
matter, for all the other horrible
diseases!"
26. INDOORS VS.
OUTDOORS
From a
reader--
"I have Fibromyalgia & live in Phoenix, Arizona and it
seems also whenever I go out of town ( which isn't very often) I feel so much
better. It seems like the pain & weakness are decreased enough so that I can
at least function to do some normal activities.This summer I went to
Prescott & Flagstaff and both times I seemed to feel pretty
decent. I did spend most of my time outside while I was at both of
those places while at home I spend much more time inside. The day after I returned from both of those trips I totally crashed
and was in my normal horrible pain & even weaker than when I left.
I also notice that I do a little better if I force
myself to get up early in the morning and just get out of the house.. I have a
friend that has simular symptoms. She is still able to work and says that
she feels a whole lot better when she goes to work than when she stays
home. She is a nurse and works in the hospital!! I also notice that I
have to sleep between 7-8 hours every night. If I sleep
any more than or less than that I feel worse. Wow, I don't know if any of this
makes sense, but this disease is just so COMPLEX. I cant figure out if all this
would be because of some sort of allergen in our homes that we
are now sensitive to or if It has to do with our hormones not
being correctly regulated!"
[I have tried the "force yourself
to get up early" routine many times, but it has always backfired for me....we
are all different. I say, do whatever works best for
you!]
27.
COSTOCHONDRITIS
Reader 1--
"I am experiencing chest pain that makes me
feel as though I'm having a heart attack when I lay down at night. My one doctor
thought that I had pericarditis but I saw another doctor that thinks that it is
probably costochondritis! He says that if the chest pain contiues that he will
try lidocaine injections for it. Has anyone noticed improvement for
coctochondritis after lidocaine injections?"
Reader 2--
"Re: costochrondritis - was in the hospital a couple of weeks
ago with chest pain - thought maybe it was the heart but didnt really think
so. Sure enough it was the costochondritis. Lack of
sleep/fatigue seems to make it worse for me. Usually though
stress brings it on much of the time. I also am on Neurontin (Gabapentin)
for restless legs syndrome. It has really helped the pain but finding now
having to take more because when I wake up at the wee hours of the a.m. need to
take it to get back to sleep along with 3 Advil. Getting concerned
now with taking too many drugs. Dr. Teitelbaum put me on Soma
many years ago at first diagnosis. Sure would like to find something
natural to help me with my sleep."
[Please write me dombush@bellsouth.net with any
comments about costochondritis, which is inflammation of the sternum and common
in fibro patients. Also, write with any sleep tips! We can all use
those! Presently I'm using Lunesta and 3 teaspoons of Nyquil generic for
help with sleep. A list of things I've tried for my (40 year duration)
sleep disorder is at www.fms-help.com/sleep.htm.]
28. SLEEP NUMBER
BED
From a
reader--
"I have had a sleep number bed for 3 years and I love it!
I had so much trouble with sleeping before I had the bed and now I sleep so much
better! I have it on the setting 25 which is really
soft."
[I tried out one of these beds at
the mall recently and must say it was great to have control over the hardness or
softness of the mattress. I think I picked #25 too! One day, when my
ship comes in, I'd like to get a Sleep Number bed!]
29. CONSTIPATION AS A
CAUSE OF FIBRO
From a
reader--
"I can add one to the list of possible causes [of
fibro]. I've been seeing a naturopath who "had"
fibromyalgia. She suggests that most people she's seen with it experienced
constipation for a large period of their lives.
This was true of me. I was constipated for probably 45 years at
least. I thought it was normal to have a movement only three times a
week. She spoke of the toxins that constipation poured into my
system. I thought I was doing good having one movement a day, but she said
we're supposed to have one after every meal. My adrenal gland is stressed
too, of course, and my blood is toxic; minerals have ended up stuck in my
kidneys and liver. According to the computer tests she ran with saliva,
urine, and blood test results I'm in pretty bad shape. Based on oxidative
stress: biological age 100 two months ago--91 this week. What she
said has made sense to me. She had me on lots of stuff, of course, but I'm
going to try it. She said it took her 1 1/2 years to get right. I
have been successfully using Sleep Link from the Pain and Stress Center online
for sleep; she gave me some homopathic pellets called hypothalmus that she says
works for sleep."
[That's interesting! I too
was constipated for 7 years just before the onset of my fibro in
1982. Strangely, when I got off birth control pills, constipation
was no longer a problem. I have never figured that
out.]
30. DOM'S
UPDATE
I'm still doing great since I
began taking the 3 new supplements in June. Life
is pretty much back to normal - or maybe I should say "abnormal" (for
me!) I drove 51 miles today to take my mother out for
her 86th birthday and to take flowers to my father's grave www.fms-help.com/eulogy.htm.
It's amazing to me that I don't have
to battle debilitating fatigue, fog or travel problems anymore.
This is my 9th week of feeling
good. If you missed my July
newsletters, see "Dom's Updates" - the last topic in each issue - at
www.fms-help.com/070907.htm, www.fms-help.com/071907.htm, and www.fms-help.com/073007.htm.
If you want info about the 3 things I'm using and a link to my online store,
please write me at dombush@bellsouth.net.
My only wish now is that the sleep
disorder I've had for 40 years www.fms-help.com/insomnia.htm would
go away. I would LOVE to be able to sleep naturally like I did as a
kid, but I doubt this will ever happen. (I developed the sleep disorder at
age 16 while in college, and I'm almost 56, so that's a lifetime of struggling
with sleep issues.) I'm grateful to be sleeping at all with Lunesta and 1
T of generic Nyquil at bedtime. Also, the Sounder Sleep CD's that I
downloaded from the net last week must be working because someone asked me how
long they were, and I really couldn't say because I fall asleep before the CD
stops!
One more hurray - the chest
tightness and coughing I had from working in toxic mold in 2005 rarely
flares up anymore - if it does, it is late at night when I am tired. I've
been taking a very good lung supplement that was probably designed for
smokers, but it has helped my situation greatly.
Well, that's all for
now. Gotta get my music ready for Sunday morning service
tomorrow. I am very blessed to be a church pianist. I love
worshipping the Lord with music - I'm getting prepared for heaven!!!
(You can read my salvation testimony "Religious But Lost" at www.fms-help.com/salvation.htm.
I was 36 years old when I accepted Jesus as my Savior!)
Bye for now,
Dominie
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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.
