"I agree that we need to lighten up a little, as Reader 2
so aptly conveys (Topic 16 at www.fms-help.com/090107.htm), and use
a little humor when we can. There is nothing wrong with
saying "fibromites," when it's just between us. I even thought that 'mites
was cute. I guess we could call ourselves FMers or fibromyalgians,
although the former sounds like some sort of a sports team and the latter sounds
like a species from outter space. Let's just leave it at fibromites and
enjoy ourselves just a little."
"I love the "mites" term! I think it's
cute! Go mites!! :)"
"I don't mind the term "Fibromites" at all if only used
between those of us who suffer from it, but it also reminds me of "Dust mites",
so it's kind of gross!!! LOL!!! I don't use the term
"Fibromite" at all around anyone who doesn't have Fibro, as I don't want it to
sound like it's "less than it is"...which is disabling!!!"
"I just had to speak up about the
term “fibromites.” I agree with Reader #1 (Topic 16 at www.fms-help.com/090107.htm) – it
is a demeaning term. It makes us sound like WE are the
bugs! And it makes me shudder. While it might be nice
to have a shorthand word among ourselves, it scares me that the term may get out
and be picked up (God forbid) by the media. Then it will never go
away. How ‘bout something simple like
“FMs” (plural of FM) as in “we FMs" or “FM-ers”?"
"We all
have our opinions but what could be worse than the Chronic
Fatigue being
used rather than Myalgic Encephalomyelitis.
Anyone who knows anything about
the media (God knows I worked for them
for 35 years) knows they blow things
out of proportion
and they exaggerate. We are known as a "lazy bunch of nit
wits anyway" I
think the original girl had the right idea of the word
"mite".
Mites may be small and ugly but they do not take a second seat to
anyone! Maybe if _*"it never goes away"*_ that is a good thing....we
want it to be "in their face anyway we can get it". BTW for the first
time on TV I saw an advertisement for pain. It was short and sweet and
it said, "Tired of suffering? Contact Fibro.org".
I doubt they will ever
say , "Do you know a Fibromite? Have them contact
us". I still say
we need to lighten up.
I have seen T-shirts
for people that have had chemo for cancer and lost
all their hair. These
poor people are usually on death row. But the
shirts say 'Bald is
beautiful,' or 'We may be bald but we're
brave'."
4. SLEEP
STUDY
From a
reader--
"I decided to go to a sleep clinic. I've
slept bad all my life (as you can obviously relate to) and think maybe it's the
cause, or at least part, of my FMS pain. My pain is much
worse when I sleep extra bad, even with 10mg Ambien. It took
seeing my husband sleepless though! We've had a stressful past few days
with moving and he hasn't slept well for the past couple nights.
Well, with me, that's bad, bad, bad....I have lots of pain, motor
difficulties, can't concentrate, just bad. So I said, "Oh do you
need to take a Tylenol PM??! Do you want one of my Ambiens???", really
worried about him! He looked at me funny and was like - "It's okay,
sweetheart, I'll just sleep good tonight, this kind of thing happens, I'll be
fine." And he IS fine today! It dawned on me that
healthy people CAN do that...they can not sleep well for a couple nights
and then get a good nights sleep and then everythings groovy. But not so
with people like you and me! For me it's gotten worse and
worse. A dr. gave me Xanax to help with my TMJ and I was hooked!
Switched from Xanax to Ambien and have been on it ever since. I finally
got tired of it being dismissed by my rheumatologist and just decided to
self-refer myself to a sleep doctor! I'm really excited!! Hey,
do they make you not take your sleep meds when you do a sleep study at a
clinic? I can't imagine!"
Anyone have the answer
to this? Write dombush@bellsouth.net. I never had a sleep study done...now I don't have the
insurance to cover it. My insomnia story is at
www.fms-help.com/insomnia.htm - I've had a sleep disorder since age 16. I will be 56
soon, so that's 40 years of experience. A list of things I've tried for
sleep is at www.fms-help.com/sleep.htm. Presently, my drug of choice is either Lunesta (too
expensive as a self-pay patient) or Ambien (a 10 mg tablet broken in half -
that's cheaper than getting a 5 mg prescription).
5. NATURAL HAIR
COLOR (revisited)
From a
reader--
"If anybody wants
another option for natural haircolor, I get totally natural
haircolor from Creative Airs Holistic Hair Salon. Lee Kassai is
the owner and she makes my color for me and mails it from California to New
York. She makes blonde color from plant sources, all natural, and it looks
great. Her address is 5210 Laurel Cyn. Blvd., North Hollywood, CA
91607, telephone (818) 769-3666. Check out her website at www.creativeairs.com. I had my
roots done today, brought my own natural haircolor, but still suffered
from the hairspray, color and nailpolish in the salon which I inhaled.
felt horrible when I left. Next time I'm going to make an
appointment first thing in the morning."
6. GETTING DISABILITY FOR FIBROMYALGIA
(revisited)
From a reader--
"We all know that
depression goes along with Fibro, but I was diagnosed with depression long
before I was diagnosed with Fibromyalgia. I had a major life changing event
happen to me in December 2001. Looking back, I have a hard time understanding
why I couldn't have handled the situation better then, but hindsight is always
20/20. I was on a job where my Supervisor was on my back for everything. I was a
whistleblower and no matter what I did or who I talked to, I was the "odd man
out". Even the union of which I was a member, fell under this woman's influence.
I tried to fight her, but I became an emotional wreck, my Fibro was totally out
of control and my depression took me to the bottom floor.
During this time I applied for Disability Social Security
Benefits and, to my surprise, I was approved the first time. Because I was age
55, I worked and paid into the Social Security system since I was 16 years
old, and my most recent job (before I took the part-time job that made me sick)
I held a responsible job for 30 years at one company, administrating their
medical, life and pension plans. Many people wondered how I got Disability
Social Security, especially the first time, but Social Security looks "at the
whole picture" when determining their decision. My age, education and
employability were factors.
I did not have an attorney when I applied for SSD
benefits and my claim was accepted. The problem that I had was that they did not
give me credit going back to the beginning of my illness, which prevented me
from getting six (6) months of benefits. That is when I retained an attorney who
I found on the Internet, Scott Davis, who works only with Fibromyalgia patients
and has a high success rate of getting benefits for his clients. As it turned
out, Social Security approved my appeal WITHOUT having to go to court. The role
that the attorney played was to put the whole picture together, including all of
my medical records, as well as to obtain letters and statements to support my
case. My claim was approved retroactively to the first week. I see
that many people write to you about not being able to get SSD benefits, so
I thought that I would share my story on how I got benefits in case that it
might help them. I am very fortunate to live in an area where we have excellent
health care professionals. My doctors worked together and with their
reports and the letters that the attorney wrote to Social Security, undoubtedly
helped my case."
See my tips for getting disability
page at www.fms-help.com/disability.htm. I have not had to apply (yet), but these are
things readers sent in about their experiences with SSD.
7. DEPRESSION OR
BIPOLAR?
From a
reader--
"Among my
medications, I was on three anti-depressants, including Amitryptyline,
Effexor XR and Remeron. I was on the maximum dosage of Effexor XR and
Remeron and I was still so depressed. My husband didn't know what to do for me
anymore. One day in July I stayed in bed all day and when I wasn't sleeping, I
was crying. It was horrible. My husband called my psychiatrist and he insisted
on talking to me. As I described how I felt and what I had been going through,
this was really troubling for him, as he was really concerned that he was
overlooking something. I have been seeing this psychiatrist since 1982 so
he knows me very well. He knew that something was very wrong, because this was
not at all like me. I only see him every 3 - 4 months to have my medications
monitored and when I need psychotherapy, I see someone else in his office. When
you see a psychiatrist to monitor meds for a half hour every 3 - 4 months, it's
easy to miss something. Often times, I looked and felt pretty good when I saw
him. There were a few times, I was "down".
During many of those office
visits, I told him that I felt my "meds stopped
working". He told me that I was on the maximum I could be on and that I
needed to take care of some personal issues and the depression would
lift. I followed his advice, but the depression didn't go
away. When we talked on the telephone in July, something clicked with
him. He sent me a questionnaire to fill out. It only had about six or eight
questions, but from that he could get a pretty good idea if I was really
suffering from depression. Because he was going to be on vacation for a
week, he asked me to fill out the questionnaire and return it to his office and
then go to this website and read the information on it. It is: www.psycheducation.com. Dr. David Phelps has been one of many psychiatrists
studying depression as it may be related to bipolar. I must admit
that when I first heard the word "bipolar", I got quite upset because the
term is associated with manic depressive, which has a negative tone to it.
Dr. Phelps writes in a very clear, no nonsense way, and it didn't take very
long for me to figure out that I was one of the people he was talking
about.
For years, psychiatrists believed that a
person who is depressed has either "Depression" or is "Bipolar". For the past
ten years, many psychiatrist have come to believe that this is no longer
a white or black area, but rather that "Bipolar" is a spectrum of
gray areas. The lowest form of bipolar is "Unipolar".... this is what I
have. If you drew a straight line on a piece of paper and considered
that "normal"; then draw up and now loops across the straight line, with
small loops above and large loops at the bottom... that would indicate that this
person has low "highs", but the "lows" are very, very low. That is me. That is
why the psychiatrist couldn't tell that I was manic. I didn't have any of the
symptoms of a person in a manic state. All we could see were my lows. Every once
in a while I didn't feel depressed, so that was my "high" but to others it would
be "normal".
Dr. David Phelps has written
an excellent book entitled "So Why Am I Still Depressed"? He does
an excellent job of explaining that antidepressants are over
prescribed and that instead, most people who shows signs of depression may need
to be on a mood stabilizer...I am on Lamictal
(lamotrigine) tablets now. I am going through a 10-week period
of decreasing my anti-depressants gradually as I am increasing the mood
stabilizer. I could tell the difference already the second week, as could
my husband. I feel like I have a whole new lease on life, even though I have a
long way to go and I am still going through withdrawal symptoms from the meds I
was on. I am also still dealing with the pains of Fibro and more recently
bilateral knee replacement surgery. I wish that someone would have talked me out
of having replacement knee surgery, because I don't think that patients with
Fibro heal as well or as fast as those without it. The surgery set me way back.
I had it done in December 2006, thinking I'd be feeling good for summer. Wrong!
I have so much difficulty walking and getting up out of chairs and I feel much
older than my age! But I try to think positive... this, too, shall
pass.
I just had to share with you my story on
depression. I thought I had it for over twenty years and while on one or a
combination of meds, they always seemed to stop working at some
point. I feel like a ton of bricks has been lifted off my shoulders. You
may want to share this information with your readers. Of course, you can shorten
my novel; but I felt I needed to explain the whole story, so you would
understand where I am coming from. One more thing... I strongly believe that
General Practioners should not prescribe anti-depressants.
Psychiatrists study these drugs and follow the studies, etc. This is their
work... this is what they do. I would never have a GP or PCP prescribe mental
health medications for me, because there is simply no way they have the same
knowledge that a psychiatrist does. And given that, within the psychiatry field
there are always those who are better than others. I feel very fortunate that my
condition was finally "caught" and now I am on a new course of treatment. Having
said that, I have one of the best psychiatrists in our area and even HE missed
it; but as Dr. Phelps explains, the patient has to become more educated so
he/she can discuss their health and treatment options with their doctor and it
helps to have supporting documentation. Still some psychiatrists will continue
to resist!"
Just a thought here....see Serenity (natural
lithium available without a prescription) at www.feelserenity.com. We have a family member using this for the past 5 years
and it worked wonders - stabilizes mood swings and helps with depression,
unexplainable emotional outbursts and sad feelings. Sometimes people with
alcoholism in their family tree have chemical imbalances that can be helped by
this. There are no side effects. (Prescription lithium is dangerous
with lots of side effects and you have to have your blood monitored every few
months for safety.)
8. POWER
NAP
9. HORRID FIBROMYALGIA
ARTICLE
A reader sent this link--outrageous!!! And by a
doctor??
Here's part of what he said:
"If you think you have Fibromyalgia,
get over it. Do not get trapped, or medicalized, into thinking
you have a chronic health condition. Reduce stress, focus on your purpose
in life, be positive, get restful sleep and regular exercise. You too can
be well!"
Good grief!!! There is a place for
posting responses at the end of this article. He says he's been
treating fibromyalgia patients for 20 years. Oh yeah? Those poor
people!
10. GABA & VITAMIN
D3
From a reader--
"I have tried "GABA" which has helped
me, and other supplements, like vitamin D3, taken with Calcium as well as
getting out in the sunshine for about a half hour each day without sunscreen,
since I seem to "crave" sunshine!!! I live in Southern
California and I used to get very depressed when I lived in Ohio during
the winter, when I couldn't get any sun. So, I do think Vitamin D3 does
help!! As for the GABA, it is one of the 'natural' ingredients that is in
"gabapentin" which is the generic form of "Neurontin" which a lot of people take
for Fibro."
11. GENERICS
(revisited)
From a reader--
"I found an article on www.americanheart.org about the
regulations for the generic drugs. To be approved, the drug must have the same
amount of active ingredient as the patented drug. It may not look exactly like
the patented drug. The shortened drug trials that must be done must show
bioequivalence of between -25% to +25% of the patented drug. The binders and
other "inert" ingredients cause the difference. This particular article
was on drugs for heart arrhythmia. Not only can there be one generic that
performs from 75% to 125% of the original patented drug, there may be a
number of generics that perform at different levels. My daughter says
the generic form of one drug works better for her than the patented
form. I guess because a generic is allowed to perform at up
to 125% of the patented version. This article said that the doctor
should be aware of the binders and other inert ingredients of the drugs in order
to be sure the patient doesn't have a problem with them (lactose, etc) and that
the doctor should know whether there is more than one version of generic. If
there is more than one version of the generic, a pharmacy can use whatever
version they wish, changing without notifiying the doctor or the patient. In
this case, it might be better to prescribe the brand name so that there will
never be a change in the form being given. The doctor can then do the paperwork
to the insurance company (if there is one) so that the company will know why the
generic is not being prescribed. My daughter's doctor does this for her Medicare
Part D carrier each year and so far, they have approved the brand name
for her each year. I hope this information helps
someone."
12. L-TRYPTOPHAN
(revisited)
From a reader--
"L-tryptophan (that the lady wrote about)
was taken off the market at one time, but NOT because it was shown to be
dangerous. There was a tainted batch that made its way into the
marketplace and people got sick. Some died. The FDA just took it
totally off the market as a safety measure until it was sure what the
problem was. It was the tainted-ness, not the supplement
itself. It was a limited supply that was tainted. It has
recently become available again. Sadly, the supplement itself got a bad rap because of it, but that
would be like saying spinach is dangerous because some of it is tainted with
bacteria. The spinach itself is not the problem. Ya know what I
mean? I swear, it seems of late that NOTHING is safe. Every time I
turn around, something is being recalled. Very scary."
13. VITAMIN D
(revisited)
From a reader--
"The vitamin D you mentioned in your latest
newsletter www.fms-help.com/090107.htm ....my
doctor recently recommended I take a high dose each day (2000 iu). I am
taking 1200 instead and I must say, it has helped me feel noticeably
better. In addition to giving me more energy, it even helps with
constipation, although my doc swears that isn't one of the "side effects."
I had always heard you only take 400 iu per day, period, but he showed me
literature that said it often helps with pain and fatigue and that it is safe in
higher amounts. I would definitely say it is worth a
try."
14. PRAYER HEALS TEEN
WITH CFIDS
I got a very interesting article from a reader
about a teen in Tennessee who was healed of severe CFIDS through prayer by his
church youth group! Before his healing, he had been severely incapacitated
- could barely stand. It
remains a mystery why God chooses to heal at one time, but not another. He
is sovereign. This teen's story made me recall my healing from
endometriosis 15 years ago after surgery did not cure this painful problem
and additional surgery could not be done since the endometrial cells had
migrated to my intestines. The pain was excruciating 6 days a month.
This particular healing happened in a small church where I was visiting.
An elderly lady prayed for me, although she did even not know I was
sick! The pain left 1 hour later and never returned. I don't know
why I suffered all of my life with this problem, then God in His soverignty
chose to heal me on that particular day and in that particular way. All I
can say, is "THANK YOU, God!"
Whether we are healed of our afflictions or
not, we can still maintain our faith in God. As Job said, "Though He slay me, yet will I trust Him." (Job 13:15)
As far as my tremendous health improvement that began June 5, 2007 as a result
of prayer at my church (see my newsletters from June and July 2007 at www.fms-help.com/newsletters.htm),
I don't know whether this was a healing or whether God just showed my
husband what supplements I needed to take, but I have had no pain, fatigue or
fog since then. I still have not "pushed the envelope" with my activities,
such as taking a lengthy trip, etc., but working and my other
responsibilities are very easy for me now, whereas before they were like rolling
a boulder up a hill (and sometimes that boulder would roll back on me and crush
me! I know my fibromite friends understand!) So, once again, I am
living a normal life. My only bugaboo is the sleep disorder (for the past
40 years - www.fms-help.com/insomnia.htm).
15. A "TYPICAL"
CASE
From a reader--
"I was in health care myself for many
years, and here I am studying herbology. I am trying to "tough it out" on no
meds at all, as the ones I took didn't help
anyway...neither did chiropractics...I use alot of mind over matter and
try to stay to busy to forget the pain. I am just worn out. My 64 year old
husband is in great form and just runs circles around my energy level, even
though he is 7 years my senior. I feel like an old woman, and I
was always a type A athletic person...I cried alot the first
couple of years. I had mononucleosis as a 17 year old,
and I still believe that it is related, too. I began getting occasional
leg pains at 18. The real thing onset very suddenly about
6 years ago, right after menopause. I think that has
something to do with it, too."
This
reader has lots of company!
16. COMMON VARIABLE IMMUNE DEFICIENCY (CVID) -
revisited
From a
reader--
"I too
was diagnosed with Common Variable Immune Deficiency, and was
getting immunoglobulin injections and infusion therapy, neither of which I get
anymore because I cannot afford it nor can I travel to the doctor who is in
another state because the travel takes too much out of me and is too expensive.
All I know about about CVID is that I have likely had it all my
life, and my blood tests show that I have below normal levels of IgA,
IgE, IgG and IgM, which seem to get lower the longer I go without immunoglobulin
injections. I have done quite a bit of reading and research on it, and
have found that, like in my case and the person who asked you about it, it's
usually not diagnosed until a person is in his/her 30s or 40s. Other than that,
I understand there is no cure. If you'd like me to share the links with you to
information about it, I'll be happy to do so.
By the way, mine was diagnosed not only based on my low Ig levels but also
on my medical history; for example, from infancy, I had chronic
ear infections, almost one a month, had chicken pox twice, mono twice, etc.
Although my parents knew I got sick a lot more than other
children, the doctors in the small town in which we live continued to
tell my mother that my illnesses were "normal childhood sicknesses". It wasn't
until recently I asked her why she didn't ask the doctors why, if I was
normal, no one else, including my two younger sisters, was as sick as often, and
usually didn't get a lot of things twice that most kids get only once.
Apparently, this question never occurred to her.
As someone with fibro and CFIDS,
along with CVID, I have tried everything possible, going through all of my
savings, to get a handle on my symptoms and functioning, and I want to let you
know that although I would love to go without the Cymbalta,
which helps with pain and depression, and the Adderall XR I
take to give me a bit of energy and help with A.D.D. (although I am on such a
low dose, I still have all my symptoms although not as extreme), were it not for
these two medications, as well as my thyroid (for my
hypothyroid, which is inherited), I wouldn't be able to get out of my bed and
would be completely bedridden and debilitated.
I would not be able to
do anything at all, and being that I have no one to help me, I likely would die
of dehydration, because without these medications, I don’t have strength,
stamina, the life force, whatever you want to call it, to even get up and get a
glass of water or make my way to the bathroom. In fact, even on these
medications, that I take such low doses of, I have many days where I am
bedridden and although I am very thirsty, I cannot get up to get a glass of
water."
I wonder if the immune-balancing powder could help this
reader? I too was a sickly child with frequent colds, viruses and
respiratory illnesses. I missed a lot of school because of it and was
given gamma globulin shots. I don't know if they helped or not. See
my CFIDS story at www.fms-help.com/fatigue.htm.
17. A COMMON VIRUS MAY
CONTRIBUTE TO OBESITY
18. "NO ARMS, NO LEGS, NO
WORRIES"
19. THANKS FROM A
READER
From Teresa, who asked for help in a
previous newsletter--
"Please let everyone on your site know I got my test back and the
blood work was all fine but the x-rays were screaming with
arthritis. It was all in the areas that I have been complaining.
I remember looking at them as they were checking them and thought they looked a
bit odd. She said it is bad in my hands and wrist, feet and ankles. I also have
not one but two herniated disc with arthritis around them which
is causing constant pain. She gave me 6 injections with a low dose of
steroids and numbing agent that she said would do wonders. I am also taking a
muscle relaxers in the evening and am to see her in a month. I am just so
relieved even though this is not something that can be ignored it will have to
be treated but it has a name and the other specialist did not even
bother to do one test but label me with fibromyalgia. Don't give
up with one Doctor. Keep searching til you find one that will do x-rays to
check for arthritis. It is in my family and I even have osteo
arthritis in my left hip just like my Brother who was diagnosed just two weeks
ago. Thanks so much for all your guidance and kinds words
- all of you were such a help when II felt so lost."
20. NATIONAL CHRONIC
INVISIBLE ILLNESS AWARENESS WEEK
September 10-16, 2007
From a reader--
"A week to share about the challenges and prevalence of living
with invisible illness or pain. I live with [fill in your illness] and am so
glad for the opportunity to help others understand about invisible illness. If
you'd like to know more, visit
www.invisibleillness.com."
21. NOTHING HAS
HELPED (YET)
From a
reader--
"Thanks for all the
information you sent me; I have been looking through it, a little at a time, as
I've had some narcoleptic-type periods over the past few days. In fact, I have
already twice fallen asleep just while writing this to you.
I had told you
before about all the things I have tried, which includes items
still on and others taken off the market, from supplements that it was proven
later were nothing more than multi-vitamins (like Focus Factor) to things made
especially for fibro, which still didn't work. I have tried all of Dr.
Teitelbaum's supplements and what not, his "diet" (for lack of a better word)
for two years, as well as Dr. St. Amand's Guaifenesin
protocol and diet, to no avail. I spent more than $10,000 and a year traveling
to the Fibro & Fatigue Center in Las Vegas, Nev. I've tried essential oils,
the product 024, bee sting therapy, herbs, different types of exercises,
massage, Reiki, acupuncture, physical therapy, psychotherapy, different types of
counseling, having my mercury fillings removed, blessings, cleansing baths, mud
packs, exorcisms (of me and my house), growth hormone, DHEA, and D-Ribose, which
I've been using since February.
A
reader wrote in saying that since she/he has been using D-Ribose, she has had
more mental clarity and focus. I wish I could say it has made that difference
for me, but it hasn't. In fact, every day I take it, I wonder why I'm still
doing so. It is as though I am taking nothing. I hope eventually it will make a
difference, but at this point, I have seen no sign of
anything.
However, I am
thinking of asking my MD for an RX for Rozerem since the others give me
"hangovers", meaning I'm half-asleep all the next day. For someone like me who
tends toward narcoleptic type episodes (since the major auto accident in 1988
that the docs attribute my fibro to), anything that causes a
"hangover" effect is worse.
I'm at
the point where I would eat live scorpions if I were told they would help
relieve my symptoms.
I have been told
that the reason much of these things don't work for me is because I have been
unable to reduce stress in my life. Except for work outside the home, I have to
keep "proving" my incurable illnesses by filling out reams of paperwork from
Social Security and from the long term disability administrator through my
former employer. In addition, except for one doctor, a chiropractor who, as I'm
sure you know, Social Security doesn't deem acceptable, other doctors I have
seen, although they say I shouldn't work, do not want to complete the paperwork
for me. People advise me to "get another doctor", but I have been through so
many, and I'm sure you know how difficult it is to keep re-establishing new
doctor/patient relationships.
In addition, I
have very noisy neighbors, and earplugs, etc., only "muffle" the noise, which
causes my house to vibrate. The city in which I live doesn't enforce its laws,
so my only recourse is to 1. move; 2. sue the neighbors and/or the city; and/or
3. spend money I don't have on sound proofing my home. I also have no support
from family or former friends, because 1. I am of no use to them as I cannot
spend money on them or make firm plans and 2. they work all the time and, like
most women, use their "leisure" time to do household chores, pay bills, shop for
food, etc.
My mother and I
are somewhat close, but she has M.S., so it's hard for her to help me., and she
relies on me to help her.
The one other
thing is that, due to the age of my home, a lot of things have been breaking
down and/or going wrong, and I have to fix them myself usually, which takes a
lot out of me. This is because I have been unable to find one good handyman.
Whether an independent contractor or part of a national chain, none of them seem
to know what they're doing and have actually, on many occasions, made things
worse, requiring me to hire someone else (who makes it worse another way) or
just do it myself or wait until I feel well enough to do it
myself.
On top of all
this, I seem to have not the best of luck with appliances and computer
peripherals like printers or other electronics like DVD players, CD players,
etc., in that everything I buy, new, 90 percent of the time is broken or
defective in some way, requiring that I return or exchange it. As you can
imagine, this is frustrating, disheartening and, for someone already
exhausted, tiring. I also have the same problems with vending machines and ATMs.
I know you wouldn't believe this, nor would I or anyone else who hasn't seen it
for themselves, but I can go up to a vending machine and put in change, and the
machine will not work for me. However, if someone else goes up to the machine
and puts in the money that I had tried (bills or change) to use, they have no
problem getting the item they/I want/wanted.
So that's that,
in a large nutshell. I'm so sorry to go on so long, and I know that
you can't help me with any of this except by praying (which I welcome and thank
you for), but at least it's obvious that, in my case, I believe that
stress has caused and continues to be a huge factor in my
fibromyalgia and CFIDS. Wouldn't you agree?
Thanks for
letting me "vent". Feel free to use this. My life is an open
book (boring, but open). I was raised to not discuss any private matters,
especially anything that could be perceived as being a sign of weakness, like
illness, with anyone, but I no longer care. In fact, I've told the
people at Social Security before that they are welcome to come to my home, live
with me and help me out if there is any doubt at all in their mind that I am
disabled."
22. EXERCISE FOR PEOPLE OVER
50
From a
friend--
"Begin by
standing on a comfortable surface, where you have plenty of room at each side.
With a 5-lb potato sack in each hand, extend your arms straight out from your
sides and hold them there as long as you can. Try to reach a full minute, and
then relax. Each day you'll find that you can hold this position for just a bit
longer. After a couple of weeks, move up to 10-lb potato sacks. Then try 50-lb
potato sacks and then eventually try to get to where you can lift a 100-lb
potato sack in each hand and hold your arms straight f or more than a full
minute. (I'm at this level.) After you feel confident at that level, put a
potato in each of the sacks."
Oh, hoo,
haha!! I can relate to this!
23. SYMPTOMS OF
TMJ
by Stacy Stone, ChronicPainConnection
Expert
It should be considered that there are many symptoms of TMJ disorder. Everyone is different, therefore
the disorder can and does manifest itself in a variety of ways. Although
this is by no means an exclusive list, the following are symptoms a patient with
TMJ disorder might experience.
Eye Pain and Eye Problems:
- Bloodshot eyes
- Blurring of vision
- Eye pain above, below and behind eye
- Pressure behind eyes
- Light sensitivity
- Watering of the eyes
Head Pain, Headache Problems, Facial Pain:
- Migraines
- Forehead pain
- Cluster headaches
- "Sinus Type" headache
- Hair and/or scalp painful or sensitive to touch
- Headaches at the back of the head, with or without
shooting pain
- Clenching during the day or at night
- Grinding teeth at night (bruxism)
- Tooth pain
- Sensitive teeth
Mouth, Face, Cheek, and Chin Problems:
- Discomfort or pain to any of these areas
- Pain in cheek muscles
- Uncontrollable tongue movements
- Jaw and Jaw Joint Problems
- Limited opening
- Inability to open the jaw smoothly or evenly
- Jaw deviates to one side when opening
- Inability to find the correct bite with teeth
- Clicking or popping jaw joints
- Uncontrollable jaw movements
Ear Pain, Ear Problems:
- Hissing, buzzing, ringing, or roaring sounds
- Diminished hearing
- Clogged, "stuffy", itchy ears
- Feeling of fullness
- Ear pain without infection
- Balance problems, vertigo, dizziness
Throat Problems:
- Swallowing difficulties
- Tightness of throat
- Sore throat with no infection
- Voice fluctuations
- Laryngitis
- Tongue Pain
Neck and Shoulder Problems:
- Neck pain
- Tired, sore neck problems
- Shoulder aches
- Back pain (upper and lower)
- Arm and finger tingling, numbness, and/or pain
- Stiffness
It is very important to keep in mind that everyone is different. Please
see a physician to receive a thorough examination and diagnosis before jumping
to any conclusions about your health.
24.
DOM'S UPDATE
I have had
no pain, fatigue or fog since June 5, 2007. I began
using some things my husband suggested. (See Dom's Updates during
June, July and August 2007 at www.fms-help.com/newsletters.htm or write dombush@bellsouth.net.) I still
have to take sleep meds at night, though. My sleep disorder began when I
was 16 years old www.fms-help.com/insomnia.htm.
I will be 56 soon, so that's 40 years of having a broken sleep
clock.
Several
years ago, I heard from a man (age 72) who lost his ability to
sleep at age 18 while he was in the military. (I have often
wondered if the vaccinations he was given altered his immune system?!)
He said, "If you think boot camp is rough, try it without
sleep!" (Shudder!!!!!) He went on to have a life of
suffering from many health problems (no surprise). At age 72, he
finally found a supplement that helped him sleep! He called me in tears
one day to tell me this good news.
For those of us facing grueling health challenges, the moral of
the story is to never give up. Keep trying things that might help -
preferably products with guarantees, so you can avoid a
cashectomy and have funds to start your next experiment, if things don't
work out. About cashectomies, I told my
husband a few days ago how much better off we
would have been financially if our money hadn't been drained away by my health
problems. When I start worrying about these things, my husband always
says, "It's only money." (Bless him!) And then
there's the bumper sticker that says, "You
will never see a hearse pulling a U-Haul." Fortunately, Donnie and I
are blessed in things that matter most - love, faith, family and
friends. Money can't buy these
blessings...
Well, I
continue to be extremely thankful for my new lease on
life. I thank God for relief from the terrible suffering
and debilitation I had been going through for so long. It
was due to prayer at my church in May which led to my husband to get this
idea for me to try. Even though I wasn't
totally "healed," God did send me a life raft so I could keep
paddling!
Hang in there,
Mighty Mites! There is always hope for us!
Dominie
DOMINIE'S FIBROMYALGIA & CHRONIC
FATIGUE SYNDROME HOMEPAGE