DOM'S
NEWSLETTER
"Bear ye one
another's burdens and so fulfill the law of Christ." Galatians
6:2
November 12,
2007
A
compassionate, informative newsletter for people with
FMS/CFIDS/M.E.
TOPICS ARE IN PURPLE. MY COMMENTS
ARE IN TEAL.
Don't
miss:
#2 GETTING SSD FOR
FIBRO - on my mind
lately
#9 FREE BOOKS OFFERED BY READER -
excellent inspirational books
#11 SEVERE INSOMNIA - oh, the
misery!
#17
DOM'S UPDATE
- recovering or losing the battle?<
1. READERS
WRITE
"I have CFS, so I am always looking for
something to make me feel better. I loved your
ideas!"
"I found your website very
informative."
"I feel as if you have been an answer from
God for me today. I am a fellow sister in Christ walking the path
that you have walked."
"I think I've found my
'home' in your site www.fms-help.com and feel
welcomed already."
"I love your web site - your
information is helpful."
2. GETTING
SOCIAL SECURITY DISABILITY FOR FIBRO
From a
reader--
"I CANNOT give in to this illness. I
have got to keep my job and keep working for at least 3 more years until I can
retire, preferably 5 more and even then, the drugs I am on are so darned
expensive I don't know if I will ever be able to really retire. On my bad
days, I struggle to get up and get to work, I take ibuprofin all day long until
I can get home at 5:30 and crawl back into my bed only to try and fight my way
to sleep once again. I am single and I, in no way, can go without a
paycheck for 2 years trying to fight for disability."
Check out these "how to
get disability" sites--
3. HEARTBURN
FROM CAPSULES
From a
reader--
"I DO get heartburn now and then after
Lyrica! That reader is not alone. However I think it is due more to how my body
responds to anything capsulated. I went off of Prozac many years ago
because of the heartburn. Now and again I get the same thing from Lyrica and
Cymbalta. As I said, I don't think it's the medication itself, it's the
way we do or don't dissolve the capsule. That's my theory anyway!"
4. PITUITARY
ADENOMA (TUMOR)
From a
reader--
"One of the remedies
I am taking from healerswhoshare.com is for Pituitary Adenoma!
And guess what? After a month, my energy is getting better- alot better!"
She is
referring to this article in a recent newsletter:
A reader wrote:
"Though you posted the link to hazards of Cortef, I feel
compelled to shout again. The writer of #9 in the newsletter obviously is
not aware that 15-20 mg Cortef IS FULL DOSE, not low-dose. Those with
Addison's are encouraged to keep the dose at 15 mg or below due to the
treacherous side effects. I, too, saw a "progressive" doctor before being
properly diagnosed with Addison's. I've little doubt that complementary
physicians mean well & help many. BUT, (big word) had I not seen an
endo at the insistence of our PC, the pituitary adenoma would
not have been revealed along with other serious illnesses. Further, it's
difficult to undergo an ACTH stim test once on steroids. That test
officially DXes Addison's, & Cortef will certainly skew results. Trust
me, it's a nightmare. One more caveat is even at low dose, taking any amount of steroids CAN -- & often
does --shut down one's own adrenal function. Several years ago, I may have
applauded the author of #9, www.fms-help.com/101907.htm. Today, I humbly beg her/him to at least visit a
reputable endocrinologist."
5. SLEEP
AROUSALS
"Your letter from a
reader on sleep arousals, made me realize that this reader needs to get a sleep
apnea test performed. She probably needs to be sleeping with a mask at
night to push air through her airway."
6. LIFE WITH FIBRO
From a reader--
"I too, like the
reader in one of the topics at
www.fms-help.com/110307.htm,
try to keep a smile on my face in public and lighten things
up. When company is gone, then I'm in bed for a week. My husband,
God bless him, is a very understanding man. He is the one who is making me
rest and say to heck with everything else (housecleaning, cooking and no more
mowing the yard - that was my exercise in the summer and I loved it)."
7. FIND ANOTHER DOCTOR
From a reader--
"If your doctor
gives you any type of drugs, and you start reacting to them, call your doctor
and tell him. If your doctor says stay on them for another few days, do
that, but if after those few days you are still sick from them, call the doctor
back. If they want to keep you on them, or increase them, FIND ANOTHER
DOCTOR. Of course you will get withdrawals after being on any drugs for an
amount of time. You can not just go cold turkey off of them. Because
if you do, you will wind up being really sick. Go do your doctor and talk
about a way you can come off of these drugs. Usually, you will have to
take smaller amounts of the drug, or take one and skip a day, then take one and
skip two days, etc. But coming off of any drugs will be a very painful
experience. Please start reading more about the drugs you take, and
become an expert on your disease. If you do not trust your doctor
find a new one. But don't trust one that goes along with everything you
say too. You should have a two way conversation with your doctors, to make
sure you both understand the issues."
8. EMOTIONAL STRESS & TENSE MUSCLES
From a reader--
"I had a tense
situation with my husband yesterday morning and I felt the muscles in my
shoulder (on top and on the shoulder blade) start cramping and the pain and
soreness is still with me 24 hrs later. Other than avoiding this situation
(which I already do when ever I can) what would you suggest? Potassium??? Just
thought I would ask and if you if you know of others who had their muscles react
in this manner."
I'm not a doctor, but I would suggest magnesium for the muscle
tension and also there are specific essential oils that help me through tense
emotional times -- they can be inhaled or topically applied to shoulders and
neck area. Write me dombush@bellsouth.net for more info about those. I also occasionally use an
anti-stress formula that is very effective for times of emotional distress or
nervous upset. Those of us with fibro have muscles that tense up when
under stress, probably more than other people's do.
9. FREE BOOKS OFFERED BY READER
“I have several inspirational books
that were kindly given me by a faith-based organization.
365 Days of
Hope - by Joni Eareckson Tada
When You Can't Come Back - by Dave
Dravecky
Changes That Heal - by Dr. Henry
Cloud
Since they are based on
Christianity, and I am
not Christian, I would like to donate them to someone who would
find them more compatible with their own religion. You can see descriptions of these
books at www.outreachofhope.org. They are all hardbacks that
cost around $15 each.
(For those that can afford it and are interested, you can buy these books
there and/or give a donation to provide some spiritual hope for someone
else.) I will happily mail them and
ask only for the shipping to be covered. I think the shipping cost would be
minimal. If I were
not on SSD, I would pay the
shipping myself. If anyone is interested, please email me
directly at b5231@sbcglobal.net. Please tell
me why I should give you the books—not lots of intimate
details, but why you think they might help you and why you cannot purchase them
yourself. I much prefer to give these to
someone who cannot afford to buy them, such as another person who is on
SSD or SSI due to Fibromyalgia or
another illness. I
hope they will give hope to someone else out there, as the very gesture of the
outreach group sending them to me gave me more hope just when I needed
it.”
Wow! These look like great books! I am familiar with
these authors.
10. GENETICALLY MODIFIED
FOODS
From a reader--
"I am
beginning to see a few foods at the store marked "No GMO".......for a complete
list of foods that are free of GMO there is a list on this site you
can print out and take to the store or make your grocery list from. You
will be mad.....some of my favorite brands are listed on there.
11.
SEVERE INSOMNIA
From a
reader--
"I am a forty-seven year old woman with FM x
11 years and severe chronic insomnia since age 30. Until recently I have
been managing okay with anti-depressants, OTC sleep aids and supplements but am
now experiencing much more severe insomnia and require more
assistance with falling asleep. I am currently take Doxepin and one
of the following Lunesta, Valerian Root, and 5HTP. I cycle through
them to help prevent resistance/dependance on any one of them. This
doesn't always work and they do not always help me fall asleep quickly or keep
me asleep. I presume that I'm probably starting the menopause
process and will be seeing my Gyn-MD shortly. The biggest issue with all
these sleep aids is that I have to be up for my job by 5:30 and it's
been pure torture getting up and trying to function with all these drugs on
board."
If you have any
info that might help fibro-related insomnia, please write me dombush@bellsouth.net. I have personally struggled with insomnia for 40 years -
my story about my sleep disorder is at www.fms-help.com/insomnia.htm. It has wrecked my life. Although it was bad since I was a
teenager, it definitely got worse when I turned 47 nine years
ago. I believe hormone shifts has something to do with it. A list of
things I've tried for sleep is at www.fms-help.com/sleep.htm. Without restorative sleep, life is slow
torture. Sometimes no matter what I do or take, sleep is erratic - I,
like many other people with FMS, seem to have a broken sleep clock. I
wonder if it is a virus that attacks the portion of the brain that regulates
sleep?
12.
LOVE THIS!
From a
relative--
There is
so much good in the worst of us,
and so much bad in the best of us,
That
it hardly behooves any of us,
To talk about the rest of us.
13. FMS PAIN
CAUSED BY NEURON MISMATCH
From a
reader--
14. YOGA ALTERNATIVE
From a
reader--
"A wonderful website
www.praisenmoves.com Praise
Moves that is taking the Christian world by storm at the moment - I did
not feel comfortable doing yoga, as I know the background of where it came
from."
15.
STRESS, MAGNETIC FIELDS & SLEEP
From a
reader--
"I think that stress is too easy a
label. There must be some chemical imbalance, same as how a
chemical imbalance can cause chronic depression. My next door neighbour is
a psychologist, and she said many people who have fibro, are just too
overactive, and involved in many things, and the body just shuts down, and says
I have had enough. Me, I am as lazy as anything, and am
not the "typical" personality type to develop fibro. I am convinced they
are still going to find a virus, or chemical, or hormonal imbalance, that causes
it. If it was stress, half of the world who had war situations
would have had fibromyalgia. I knew an old
German watchmaker and his wife. My one watch kept on stopping and losing
time and no amount of their work, or batteries, could make it function.
Eventually she said, do you have anything digital next to where you sleep - yes
a digital alarm clock/radio. Move it, she said, the magnetic
field interrupts your sleeping pattern and the waves of your watch. I
moved the clock and the watch. The watch has been working ever since, and
it has been 2 years now!!!!! Funnily enough, I started having fibro
symptoms when I stopped working four years ago, which coincides with having the
clock on my side of the bed. She said nothing digital should be in
your room, and we have too many electric currents around us when we
sleep. I am peering down at my plugs while telling you this, and
have 6 things plugged in. Interestingly enough, the touchpad of my laptop
makes my hands worse and they tingle I have to use a mouse, which does not
effect me so badly. Also, many of our people live in townships without
electricity, and none of them have fibro and they are under constant
stress. I also have friend with fibro, who finds that when she is closer
to overhead electric cables, she gets worse Yet, if I am really bad, I
darken the room, put on the electric blanket and try and sleep it off.
Makes one think."
16. SCOLIOSIS &
FIBRO
From a reader--
"Could not believe it when you said in latest email, you
have scoliosis. I also have and wore a Milwaukee back
brace from age 13-16. It does not matter what I read, I still
think the constant pain from my back, triggered a "short" to the brain and
caused Fibromyalgia. I have been taking
1000 mg magnesium chloride, which provides elemental magnesium 64
mg, and can't believe how well it is making me sleep and feel relaxed
at night. Nothing I have taken previously has given me such relief, not
even my painkillers. Should be getting my
magnetic mattress pad this week. I am really getting
severe tingling during and pain after using my laptop, and as I
write for the local paper, it is a real bummer."
17. DOM'S UPDATE
Recovering or losing
the battle? That is the question.
Well, our recital in
Jacksonville with our school of music students went very well last Saturday
night. I am extremely grateful to my husband for helping me with the
preliminary stresses and for always being supportive, taking pictures at these
events, etc. The stress is over, but somehow I am not
bouncing back. I am just drained, or more explicitly, my nervous system is
drained.
I sure wish I always felt as
wonderful as I did during the 4 months of June, July, August and September this
year when I was on my new supplement regimen - see Dom's Updates at www.fms-help.com/newsletters.htm.
Teaching was a joy, life was a breeze, chores were easily accomplished,
music rehearsals were no problem. I was normal. How simple life
was! It was easy to see how a normal person can achieve so much in
life and not understand the daily uphill battle of an ill person. All was
rosy until some major stresses ganged up on me at once - emotional and mental,
and it looks like I am going down the tubes again. I
hate to admit this!
It is nearly 4 a.m. and I have
not slept yet. I do not get sleepy - even with meds sometimes. After
tossing and turning, reading the paper, and balancing the checkbook, I finally
decided to write to you guys, because you understand.
Someone said
to me today when I said I wasn't feeling well, "Well, you look
fine." It is impossible to explain chronic invisible
illness to someone - even a kind soul. Also, when I had to step back from
commitments I made when I was feeling well it was a bad move socially and easily
lead to misunderstanding. (People must think I'm
crazy.....sometimes I think I'm crazy!) This FMS/CFIDS is some kind of
brain problem.
My theory is
that FMS/CFIDS is caused by a virus that affects the regulatory glands of
the brain and nothing works right after that. My onset was June of
1982. It is now November of 2007 and I have HAD IT!!!!
I am just
soooo close to filing for disability at this point. The 25 year long
battle with FMS/CFIDS has worn me down in every way. My husband has told
me for years that I'm disabled and won't admit it. I am
occupationally undependable. Music teaching, which I love and only do
part-time, is almost torturous when I feel this bad, yet I never let my students
know how I feel, because it would serve no positive
purpose.
I plan to
research SSD to see how much I can continue to make and still draw some
disability. I don't want to stop teaching altogether. Does anyone
know the new rules of SSD? I would sure appreciate some pointers.
Please write me at dombush@bellsouth.net. One
of my former student's husbands is an SSD attorney. Is it
better to get an attorney or do the paperwork yourself? Of course,
I have lots of disability tips from readers at www.fms-help.com/disability.htm
which I plan to review. However, I understand that some new changes have
been made in the laws lately.
My husband is
hopeful that as I get the stresses in my life reduced that the great
supplements I was taking will kick in again and help me feel normal. I
have had all kinds of interpersonal stress and bad news
lately on top of planning the recital, and he thinks that is what has
pulled me down. Well, I'm ready to rise to the top again, if such a
thing is possible. It's incredible how debilitating
this illness can be. The good news is that I can still ride
in a car and go shopping, so that is still a remarkable improvement from the
last few years. However, there are days now where even
doing that is becoming difficult again. I just feel so weak.
I suppose it doesn't
help to be 56 years old and having hot flashes all the time. That is
draining also.
Well, enough of my whining and
complaining. Thank you for attending my "pity
party." I have an easy life compared to many people I
know. It's just that I would so like to be able to enjoy my
life more and achieve more. And I am so tired of the social misunderstandings my illness causes, not to mention the
actual misery of the illness itself. My husband says, "Quit
apologizing to everyone for being sick." I didn't realize I was
doing that, but I guess I was.
In happier news,
tonight Donnie and I are doing a musical program for senior citizens at
our church. It will be so much fun! We enjoy doing things like
this! But first, I need to sleep. It's almost time for my husband to
get up and go to work already! Grrrrr! I hate sleepless
nights!
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.
