DOM'S
NEWSLETTER
July 30, 2007
A
compassionate, informative newsletter for people with
FMS/CFIDS/M.E.
TOPICS ARE IN PURPLE. MY
COMMENTS ARE IN TEAL.
Don't miss:
#11 Fight or Flight
Response and Dopamine Depletion (sooo interesting!)
#13 Sounder Sleep (free audio sample)
#25 Dom's Update (8 weeks of feeling normal)
1. READERS
WRITE
"I always read your newsletter with
great interest."
"Thanks so much for your continued commitment
to this large population of people suffering from these cruel and life
altering disorders."
"Love love
love your site!!!!!!!!!!!!!!!!!!!!!!!"
"I have been reading your website www.fms-help.com now for many months and
find your newsletter so informative."
"FMS is not for
wimps."
"Thanks so very much for your newsletter and
faithful support to all those like myself who are
suffering."
"I am really gaining a lot of information
from your website www.fms-help.com.
I think what has been most helpful for me is realizing that all the crazy
symptoms I have are not all in my head but that other
people experience the same symptoms. I feel so alone
in this journey."
"Thank you for your website and all your
hard work."
"Your newsletters have been such a Godsend to
me. Just by reading how you balance your life with this disease and
working along with the family challenges you have been faced with have helped me
and given me hope."
"Love your newsletter and
thank you for your time and energy to send this."
"I was visiting your website on chronic
fatigue syndrome www.fms-help.com and found it
very helpful."
2. HAIR LOSS RESPONSES
Reader
1--
"A friend of mine (not a fibromite) was
starting to lose her hair and her doctor asked her if she had been
dieting. Of course she had and was not eating any foods
with oils. Our bodies need a small amount of oil in our diet and if we
deny it one of the things that happens is hair loss. If she is not dieting
she needs to check with a dermotologist."
Reader
2--
"I have the same problem as one of your
readers with my hair falling out its all over the place and i have long hair but
for months its been falling out. iam now taking (Biotin)
dont know if it works yet but if anyone had any problems with there nails
growing it helps i used to have really long nails until i got sick they wouldn't
grow for like two years they seem to be growing now dont know about my hair yet
still falling out."
Reader
3--
"I read in your current newsletter
about a person with hair loss. I too have suffered hair loss and found that
certain medications cause it, including Depakote and Lyrica,
which is used now for fibro pain. I am hoping that
since I have stopped these medications, my hair loss will decrease to a normal
level. Thank goodness I have a lot of hair anyway."
Reader
4--
"Ask the reader
whose hair is falling out if she has had her thyroid
checked. That was one of my complaints before we found out I had
become hypothyroid."
Reader
5--
"I too have had the type of hair
loss that your reader describes. I have very thick hair and the loss was
from my entire head, not in bunches like seen in alopecia. I had it
checked out by doctors, especially thyroid tests (low thyroid causes hair loss
and I have had low thyroid for years and my levels are normal with thyroid
supplementation so low thyroid was not the problem). Because I have thick
hair most doctors, hair professionals would say that I was imagining things but
I know I wasn't. I collected it and ended up with a bag full in just one
month. I know my hair volume has decreased because my ponytail holder goes
around three times now and not two (Not very scientific I know -and the hair
bands are new). I don't have an answer except that I
tried increasing my multi-vitamins and taking fish oil and have
been hair loss-free for about a year now…may not be
the answer but just my experience."
Reader
6--
"About six months after a
traumatic event hair will fall out. This is normal, according
to my doctor. This event can be anything that stresses the body, such as
anesthesia, medication, emotional crisis, etc. If the body is continually
stressed and not getting nutritional support, the hair will fall out more
constantly. If this is not a reaction to a specific event within the illness
itself, it may be that the body needs more nutritional support in general.
Blood flow to the scalp helps hair grow thicker, so more oxygen flow should help
(massage, nutrients, etc). It can be pretty scary, but remember hair is like
nails and skin--the part we see is dead except at the root where there is
nourishment, so there may be a need to slough off more than usual. There may be
some essential oils that could help also."
Reader 7--
"I find my hair has fallen out with some meds
I take. I was in a FMS Clinical Study using Lyrica and my
hair including eye brows got thinner. I am also blessed with plenty of
hair."
3. FIBRO
IMPROVES IN FOREST
From a
reader--
"In my ongoing search for a cause and relief
from our fibro, it dawned on me that something in the house must be aggravating
it. Since I did not have it before moving in with Georgia and it's rarer among
men, I thought it might have something to do with our environment. Georgia has
tons and tons of artificial plants in the house and I'm hearing more and more
about toxic gases being emitted from various products. What I'm wondering is, if
there's an association. Here's another clue... whenever I take my boys up in the
Sierras and hike around in the forest, the pain and most of the
other symptoms go away in the fresh air. Plus, I sleep wonderfully that night.
So, I was wondering if you had heard similar stories from any of your other
friends."
[My reply was that this
could be due to the absence of electromagnetic fields out there in the
wilderness - see my tip #64 at http://www.fms-help.com/tips6.htm#64. BTW, I think this reader is very fortunate to
be able to hike! Many people with FMS/CFIDS are housebound or even
bedridden.]
The reader then
responded to my comment about electromagnetic fields with this
reply--
"No, definitely not EM fields. I've been
around emf my entire life (I'm an electronic tech) and only had the fibro a
couple of years (July 18 will be my two year anniversary). Plus, when I went to
the hills, this past Sunday, we were visiting a remote hydroelectric powerplant
where the em fields are as strong as they can be, and I felt fine. I've never
bought into the emf theory and never will. No, I think it's a complex combo of
things."
4. ACUPUNCTURE
FOR FIBRO
From a
reader--
"I have
battling fibro and chronic fatigue for 18 yrs or more............ I have been on
many medications............and now having accupuncture...........what a
relief. I am going twice a week and weaning myself off
medications."
5. COMMON
VARIABLE IMMUNE DEFICIENCY
Response from a
reader--
"On the issue of CVID (common variable immune
deficiency), I was diagnosed with this seven years ago. There are certain
markers that Drs. missed for 20 years. Prime among them is chronic sinus
infections. Drs. are being "encouraged" to test IGG sub class levels if patients
present with more than 6 infections a year. Being diagnosed after so many years
was encouraging. Here in Arkansas, the only place that patients are being
treated is at Arkansas Children's Hospital. This is one of the greatest
facilities in the U.S. with world class Doctors. I was started on IVIG
(intravenous immunoglobulin) at the hospital and went every three weeks for iv
infusion. Three years ago, I read about studies in Europe that encouraged Drs.
to allow patients to infuse themselves at home using subq methods 'instead of
having to start an i.v. There is a specific IVIG med recommended for
this procedure. I volunteered to be the guinea pig for this study at Children's.
I was taught at home to start my subq meds. This is has been miraculous as far
as taking this treatment in the comfort of your own home. I do this twice a week
and with more levelized doses, the side effects are quite minimal. Sinus
infections has been reduced dramatically!"
6.
COSTOCHONDRITIS
From a reader -
some people with FMS also have inflammation of the
sternum--
"On the subject of
costochondritis, I was also diagnosed with this four years ago.
After 5 visits to the ER thinking I was having a heart attack, I finally
persuaded a Dr. to actually stop talking and listen to my
symptoms!!!! As soon as he pressed the mid breast bone area, I was finally aware
of what I had been experiencing. The pain of the pressure was exactly what was
causing my symptoms. This pain can radiate in several directions from the front
to the back. When I feel this pain now, I don't panic. My treatment for this is
Tylenol and a warm moist buckwheat pillow placed on the painful spot. I usually
go to sleep "cuddling" my little pillow and always wake up feeling
better."
7. EFFEXOR AND
BRAIN "CLICKS" - RESPONSES
Reader
1--
"I weaned myself gradually from effexor and
amytriptyline, quitting entirely in March 2006. Yes, I also have clicks in my
brain, but very rarely now. At first they were every few
minutes. I think they were from withdrawal. I took amitryptile again
a few months back and the clicks came back more strongly and more frequently, so
I quit it again. Now I get one every few days. I think it is
part of the addiction. It's very hard to shake, worse than heroin, they
say. I was sleeping 17 hours a day and living like a zombie on the
antidepressants and knew I had to get off them, no choice, if I was to have a
life again. I didn't call them "clicks" I called them
"brain slams" but maybe that's because my dosage was
150mg, not 37.5. Now I sleep about 8-9 hours with no naps and am
functional and productive (self employed) again."
Reader
2--
"In response to the person who is
experiencing 'clicks' in the brain from Effoxor. I did not react well at
all to Effexor when it was given to me back in 1995. It caused me feelings
of having some kind of neurological reaction to it and it
seemed to greatly weaken my neck. I began to need to lie down more often
for longer periods due to the inability to support my own head with my neck and
I think I remember a strange feeling in my shoulders and just feeling that
something was definately 'wrong'. I hope that the tapering off goes well
for them and that they then stay off Effexor permanently. I have heard
others complain about this drug on another web site, but they were not very
specific."
Reader
3--
"I haven't tried to withdraw from Effexor but
I know that many websites warn about that problem with Effexor. My daughter has
had some issues with withdrawal from several brain meds and there are all kinds
of physical responses. Brain clicks sound similar to some things she had. My
sister is on several brain meds, too, and she had something that sounds similar.
The key is: be sure a knowledgable doctor is working with you on this!! A GP or
family doc is probably not the best here. Be sure the doctor has had much
experience helping patients withdraw from antidepressants. Some psychiatrists
are better with the meds than others. Notify the doctor of all new symptoms
because it may be small seizures or something that needs to be addressed. My
daughter had a GP change her from Effexor to another drug abruptly and she ended
up in the psych ward because of that--it doesn't necessarily happen
suddenly--may take up to 10 days before the med is at the lower dose in the body
tissues. Also, Paxil is hard to withdraw from. Good psychs know which drugs are
hardest to withdraw from and Effexor is one of those. Sometimes they add
a small amount of an easier drug (or drugs) to withdraw from as you taper the
Effexor. They get you off the Effexor, having transferred you to
another drug or combo that is easier to taper off and then taper you off that
one. It's a tricky business and BE CAUTIOUS!"
Reader
4--
"About topic #14 on the July 19 newsletter www.fms-help.com/071907.htm
on Effexor... I'm about to start tapering off Effexor XR
(like in a couple days) because I want to try to get pregnant again in
September. I've tried 3 times to get off Effexor (75mg) but went back
everytime because my fibro pain got like 10X worse when I went below
37.5mg. Two times I tapered slowly and one time I tried to go cold
turkey from the 37.5... when I went cold turkey I experienced all the
typical horrible withdrawal symptoms - brain "zaps" (I wouldn't
describe mine as "clicks" like that person did)...for it was like an
electrical sensation that started at the top of my head and went down to my
toes...like a super quick 1 second zap..so weird... also it was like my eyes
couldn't keep up with where my head was going...and I had the extreme fatigue
and moodiness (would cry at anything). It was awful, awful, awful.
During the slow taper, i.e. taking the beads out about 10% at a time from
37.5mg, I did not have the brain zaps, I just felt more and more fibro
pain. So bad I had to go back up to 75mg. So, this time, my rheumatologist is having me
take 20mg Prozac to help withdraw from the Effexor. She has told
me told to take the 20mg Prozac once I get to 37.5mg
and until I can go without the Effexor. I'm really scared since it
was so horrible with the pain last time, but I'm going to give it
a try. I may or may not get off Prozac once I'm
completely switched to it. It's one of the safer ones
for pregnancy. It'll depend on how I feel at that point.
But anyway, maybe that person can take Prozac or Paxil to ease the
withdrawal. Effexor is like the hardest antidep. to get off of because of
it's long half life. Prozac and Paxil are easier to withdraw
from (supposedly)."
Reader
5--
"I have "clicks" in my brain
also. It is like a one second spasm in my brain and it sounds
like «chick». It happens when I am lying down. BUT I never took
Effexor!"
8. SLEEP NUMBER
BED
From a
reader--
"As far as sleep goes, 2 things
have really helped me. One was Cell Techs Stem Plex but I feel like the
main one was the Sleep Number Bed. I am glad you are doing better. I am
still able to sell real estate at the age of 72."
9. FMS AWARENESS
COMMERCIAL
Response from
reader--
"It's about time, but I am not happy with
[the commercial] because it doesn't explain much at all. People need to
understand more about it. Everyone looks at you like you're crazy when
you say you have fibromyaligia and it drives me crazy. Wish
people and doctors understood more. It's very frustrating. I show
people who ask the poems about it and it makes them understand much
more."
[See My Name is
Fibromyalgia at www.fms-help.com/mnif.htm and also
some poems by newsletter readers at www.fms-help.com/poems.htm. I
saw the fibro commercial on TV this week. It is sponsored by Pfizer.
When you go to the website, they are advertising a fibro drug, but at least the
illness is recognized publicly, and that's great!]
10. SLEEP
FORMULAS
From a
reader--
"Yes, I tried From Fatigued to Fantastic's
Revitalizing Sleep Formula and it made me
hyper and actually kept me awake. I
switched to Source Naturals Night Rest which I take along with
my sleep meds and it helps. It has GABA and melatonin in it both of which
help me with sleep. I am also thinking of trying a product my chiropractor
sells that has 5HTP and tryptophan in it as they rebuild serotonin levels.
I have also read about Pro Health's new FibroSleep which sounds
very interesting as well. You can read more about it at www.immunesupport.com."
11. FIGHT OR
FLIGHT RESPONSE & DOPAMINE DEPLETION
From a
reader--
"I am the group researcher for an online
Christian chronic pain group so I buy about every book that comes out on chronic
pain or fibromyalgia. I have just finished a fascinating one called
"The Fibromyalgia Solution" by Dr. David Dryland, a well know
rheumatologist who has fibromyalgia himself, well actually had it but is now
symptoms free. His theory is people with fibro have an overactive
fight or flight response that causes severe depletion of dopamine
levels and goes into detail of how to deal with this fight or flight
response and meds he has used to help patients. The two drugs he
uses to rebuild dopamine is Mirapex and Requip, both of which must be
started at very small doses and titrated up very gradually as these drugs can
have severe side effects. My fibro is under pretty good control so I am
not willing to try either medication, but am very interested in learning
to stop the fight or flight response in natural ways. He has a
website with a forum on it if you are interested in reading more about his
theories. His books is a fascinating read and I highly recommend people
read it. It is in paper back form and not expensive and you can order it
from his website as well. The website is www.drdryland.com. My
doctor, Dr. Mark Pellegrino , has also had articles out about dopamine
depletion in the Health Notes bulletin from To Your Health. What
I am reading in his book certainly makes sense!"
[Go to Dr. Dryland's
site and you can download a free chapter from his book. WOW! Is this
an eye-opener or what?! He thinks the cause of fibromyalgia is that
our autonomic nervous system gets stuck producing adrenaline while our dopamine
levels decline. Dopamine keeps us from feeling pain in times of great
stress. But after the stress is gone, the adrenaline doesn't shut
off. My good doc has me on 12.5 mg of atenolol
in the evening. This is a blood pressure med, but he says I need it
because I have too much adrenaline! I was
having almost constant, drenching sweats because of my nervous system staying in
"high-alert" mode. It really does help. To get more info on this
subject, use the Google search box at the end of this
page. Type in "dopamine" or "autonomic" to search my site and
newsletters for info on this fascinating topic. Also, be sure to see #13
below about "Sounder Sleep"-- something really helpful that a reader told me
about!]
12.
QUESTION FROM A READER
"I was diagnosed with Fibro 7 years ago - I
have a very mild form; I'm being treated with Effexor and
Ativan and I also take 3 Advil twice a day for
the pain. Every once in a while I have a day where I can not get out of
bed when I am just completely exhausted, but with a couple of days in bed I
feel much better. I feel like most of my problems stem from
stress. Today is one of my bad days. For the last 2 months I have
been fighting this mysterious rash. I
have had 2 rounds of cortisone cream and also 2 steroid shots (one fast
acting and one slow acting). The rash seemed to get better, but now I am
starting to have the symptoms again. I have been to two drs and they say
that it is allergies - I have an appointment to see a
dermatologist the end of August (I could not get an appointment any
sooner). I scratch myself sometimes so hard that I have bruises on top of
the rash. If anyone of your readers have any suggestions, I would
appreciate their advice."
13.
SOUNDER SLEEP
Got this link from a
reader--
[There's a FREE audio sample on this site. I tried this gentle
relaxation technique and it works great! I bought the downloadable CD set
- tried it last night and it helps a lot!& According to Dr. Dryland's site
(see #11 above) the parasymathetic nervous system helps our
autonomic nervous system relax. These kind of
relaxation tapes are sure better for us than drugs--or they can be used along
with meds. The SECRETS OF SOUNDER SLEEP technique consists of making extremely slight movements - not like regular exercise at
all. I tried the daytime exercise and went from being very annoyed with
someone to being extremely calm and relaxed in just a few minutes.
Pretty amazing! Sleep trainer Michael Krugman's voice is
very soothing also. At the end of the exercise he says to enjoy the pleasure of being alive. Pleasure??? How
long has it been since most fibromites have felt pleasure in life??! We
tend to ignore our body's cries for what it needs and we take care of others'
needs instead. Seems that's how we're made, but carried to an extreme,
this is a recipe for self-destruction. We must also love and take care of
ourselves!]
14. CHEST
TIGHTNESS
From a
reader--
"I was very interested reading your latest
newsletter especially when you wrote about the chest tightness [www.fms-help.com/071907.htm - Dom's Update]. It
is my belief from researching various websites that Myofascial Pain Syndrome
(MPS) tends to go hand in hand with FMS in a lot of cases. I actually think that
I suffer with the MPS more than the FMS so I am VERY familiar with the
tight squeezing in the chest. It brings on a feeling of gloom
and impending doom! There is a very good website: http://www.sover.net/~devstar/define.htm [Dr. Devin Starlanyl's site]. It explains the differences between
Fibro tender points and MPS trigger points. Don’t know if you have discovered
this website already but it gave me a great insight into why I feel the way I
do. Still don’t really know what causes it but I do know that my chest tightness
it “triggered off” by deep massage or repetitive tasks such as ironing, vacuum
cleaning, writing or even just having my head down reading a book. Can’t do that
for more than a couple of minutes! It’s as though the muscles
and/or the fascia covering the muscles becomes taut or over excitable, then just
remains in this hyperactive state and doesn’t relax for ages; days or sometimes
months, resulting in this squeezing sensation. It’s at these times that
I get my worst brain fog. There are a hell of a lot of balance receptors in the
neck sending signals of our position to our brain. These receptors get
disturbed. When these muscles and their overlying fascia start to tighten, then
the referred tightness (and pain) travel up the neck and into the head and jaw.
I feel like it squeezes so much on the arteries feeding oxygen to the brain and
inhibiting the flow. The outcome is dizziness and brain
fog. Sometimes this can happen
immediately (as in your chiro treatment) or a day or two later after say ironing
for example. I have found that the longer (and more rigorous the exercise) then
the longer the symptoms last. I did some bench press-ups 3 years ago and I had
constant brain fog, dizziness and chest tightness for 4+1/2 months without let
up! Also, when I was at University studying and writing, I was virtually ill
with these symptoms for the whole year until I had to give up my degree in
Radiography. Also, sometimes, do you feel like
your lungs are too big for your rib cage? Such a weird feeling!
Can’t say I notice mine worse at night but
bending head down to read does trigger it off. I never like reading in bed,
maybe that’s why! It could be anything I do in the day that starts
it but sometimes my symptoms don’t come on straight away. Sometimes symptoms can
come on in the evening or the next day. There’s no proper pattern that I have
noticed."
[I really appreciate this reader's
input. I'm still not sure what is causing my chest tightness and
cough ever since working in toxic mold for a year in 2005. I even
researched hiatal hernia recently, which can cause chest tightness and coughing,
but I don't have any burping symptoms. 10 years ago, someone gave me Dr.
Devin Starlanyl's book, FIBROMYALGIA & CHRONIC MYOFASCIAL PAIN SYNDROME, A
SURVIVAL MANUAL. It's a very comprehensive book. You might be able
to find it in the library or at a bookstore like Barnes and Noble
where you can sit down and look through it. My chest tightness usually
begins when I lie down or am really tired at night, but not always.
There's no set pattern to it. Does anyone else have this problem?
Please write me at dombush@bellsouth.net.]
15. SOMA - MUSCLE RELAXANT
From a reader--
"Soma is a muscle relaxant that makes you
sleepy. It is one that can be addictive, but my doctor said it was the
best for fibro at night and I do not take it every night. I get the
generic which is not very expensive."
16. L-TRYPTOPHAN
From a reader--
"About
my neurological problems, like numbing in my face (which will
stay for a long time before leaving and returning again) – we have traced it
back to around 1989 when I was taking an OTC supplement,
L-tryptophan. When it was banned after
many people dying, I figured I was “safe” since I was still walking around and
breathing (another thing I no longer do well). Well, little by little,
without my connecting any of the symptoms to the L-T, I became more and more
ill. It began with a horrible rash that would not go away…..and then
I felt fine after the year on prednisone for the rash, but did not notice I was
not “quite” myself. I no longer had energy, but attributed it to the
weight gain from the steroids. I also thought the breathing problem was
from the weight gain. A year would pass and I would notice another small
symptom and ignore it. In 1996 I got terribly ill. It was a “virus”
but worse. I really was SICK! I never did get over that flu – when I
was “better” and good enough to get back to work, I forced myself there
everyday. One day, my legs went out and I went down the steps and broke a
foot. And I was still sick. It was then I went to a doctor and
received fibro and cfs – and then on to the rheumy to confirm it. BUT, I
keep getting more and more symptoms (to this day, they keep finding more and
more. These symptoms – the zapping in the jaw – the
electrical pain that goes on and on and keeps one from opening the mouth and
keeps a person jumping from the uncontrollable electricity in her face – are
enough to cause a lot of suicides….and it DOES. I have considered
removal of the 5th cranial nerve (I had thought of removing all
my teeth but my dentist would not do it….to find out, that would have done
NOTHING for the pain) – but I have to be a candidate for the brain surgery, and
even if I were accepted, my insurance will not cover this expensive and a bit
riskly surgery. L-tryptophan was used all over America. A Chinese
company “cut corners” when it neglected to clean the coal it used (removing the
toxins) as well as INTRODUCING a biological ingredient to make the process
shorter…thereby POISIONING US! There was a class-action
suit and many won lots of money to take care of future medical and
their eventual deaths. This has shortened many lives and continues to do
so, because it has affected our organs through the scleroderma and has affected
our breathing."
[I
took L-tryptophan many years ago because it was supposed to help with
sleep.]
17.
FMS IS A NEUROLOGICAL DISEASE
From a reader--
"I am
joining a research here in Phoenix that recognizes that fibromyalgia IS a
neurological disease and has PROOF of it. What they are doing is asking
the patients to allow them to take their brains (or parts of the brain tissue)
and whatever else is needed upon our death for their research; research
for cures, helps, more knowledge. There is an annual exam that includes a
memory exam."
18. NEURONTIN FOR
SLEEP
From a
reader--
"I started taking
Neurontin a few years ago to help with pain. It does help me a small
amount with that problem, but not completely, as I will only take a very small
dose, and I don't want to increase it. (400 MGs once a day at
bedtime). It has some side affects --vision, concentration, etc., so I
always take it at night so that it doesn't affect my ability to drive during the
daytime. However, it does a wonderful job of helping my
sleep. I have read that this is a drug that is becoming commonly
used by Fibromyalgia patients, and that it does help greatly with sleep.
I switched to Pregablin a couple of
weeks ago, and it helped tremendously with my pain, but my sleeping ability
disappeared, so I switched back to the Neurontin. It has
been a lifesaver!
I have
two problems with my sleeping pattern. First of all, without meds it takes
me hours to fall asleep. Once I do, I sleep for short periods, but wake up
constantly during the night. Like about every half hour to 45
minutes. I am able to get back to sleep fairly quickly, but is a disrupted
sleep, and that has a lot to do with my pain problems, I think. My pain is
not as severe as it used to be, but even with good sleep, I still have
problems. I have no idea what it is that "pops" me awake at night. I
decided against a sleep study, because then they would want to stick me with a
bunch of new meds, and I am content with the ones I am taking and don't want to
change. If it's not broken, don't fix it. My meds work good, so I am
satisfied. I also take
Ativan at night, .05 mg, and Flexeril, 5
mgs. But it is the Neurontin that I miss the most
if I don't take it at night. I looked it up on the Internet and read that
it is being used to help sleep."
[Has anyone else had
success with Neurontin for sleep? Write dombush@bellsouth.net. I have been an insomniac for 40 years. My sleep
story is at www.fms-help.com/insomnia.htm. For a list of things I've tried for sleep, see
www.fms-help.com/sleep.htm. We fibromites have an overactive autonomic nervous
system. There are ways to help the parasympathetic nervous system take
over and settle us down - I am just beginning to learn ways to do this.
See #11 above and also the relaxation CD with free online sample at #13
above. I am intrigued by this information!]
19. NATIONAL FIBROMYALGIA
ASSOCIATION
From a
reader--
20. NO ONE'S FAMILY IS
NORMAL
21. STRUGGLING WITH
SLEEP
From a reader--
"When I spoke to you last I was off to see my naturopath for a
consultation. Well nothing new came out of it, she said thought I was
already on the best antioxidants available. She suggested I try 5HTP and
mixed up a homeopathic medicine to help with my insomnia. That was 2 weeks
ago and no real improvement to date although I take the drops
if I wake up during the night and they seem to get me off to sleep for another
hour or so. For the last 2 weeks I have been making myself take 1/2 7.5tab
of immovane every night regardless and seem to get a reasonable sleep on that
although I still wake feeling exhausted in the morning. I
just have to get my head around taking sleeping medication every night, I am so
worried about getting dependant and then having to increase the
dosage. I am back on my original antidepressants as the
amitriptyline gave me such a dry mouth."
[I can sure relate to
this reader's struggles. My insomnia story is at www.fms-help.com/insomnia.htm. My sleep disorder began when I was 15 or 16. I
finally began taking sleep meds at age 30. I am now 55. A list of
things I've tried for sleep is at www.fms-help.com/sleep.htm. I am always interested in hearing how others manage their
sleep disorder, so please write me at dombush@bellsouth.net.]
22.
BLEPHARITIS (EYE DISORDER)
This subject isn't
about fibro, but a reader asks if anyone has information about this
condition which afflicts her son. Please respond directly to Vera
folgers@nefcom.net--
"My son has anterior and
posterior blepharitis. This is an eye disease.The drs. have told him there is no
cure. The first one affects the outside front of the eyelids and the other
affects the inner eyelid {most part that makes contact with the eye} and is
caused by problems with the oil glands in this part of the eyelids. They will
turn red in one eye and jump over to the other eye. Some call it pink eye, but
the drs, have ruled this out. When the eye starts running sticking stuff
that is the most contajust time. He says they hurt him really bad. The drs
and specialist tell him to cleanse them with baby oil, etc. he does. The one
thing that gets me is this really only happens at night. During the day they are
fine. If you or any of your readers have any suggestions I would surely be
thankful. He is only 36yrs old married has 3 kids. It is hard for him to try and
work."
23. PANIC
ATTACKS
Many people with fibro also suffer with
anxiety and panic attacks. Here's an interesting article called "Is panic hard-wired?" http://www.revolutionhealth.com/conditions/mental-behavioral-health/anxiety/causes/panic-hardwired?
msc=A62687. My first panic attack
occured at age 14 while singing in a choir concert at my
high school. I was two years younger than my classmates and beginning
to develop acute feelings of inferiority. I developed agoraphobia
during my 20's, and it didn't go away until I was 36. I no longer have
acute problems with panic, but I do have anxiety once in awhile. A small
dose of Lorazepam (generic Ativan) helps me during those times and also helps
me with sleep.
24. SINUS PROBLEMS
HELPED
From a
reader--
"I am trying
something now which is helping with my sinus condition: "Germ Slayer" or colloidal
silver. I use saline solution (a previous doc from years ago suggested this for my
nose rather than other inhalants) and place about a teaspoon of this "germ
slayer" in it. Since
beginning this, my ears have become unblocked (a prior daily nuisance and only
cleared by evening after constanting blowing my nose all day).
My eyes have also cleared up and
aren't as blocked by discharge (allergies) as before either! My sinus have not required as much benedryl
either to keep clear! I
wasn't prepared to take it 3 x's/day under the tongue but felt trying it in this
manner might be beneficial. It recommends using straight but I've not
needed to. I suffer from
molds/mildew and such...more so now that I've fibro than before."
25. DOM'S
UPDATE
I am continuing to do
great on 3 supplements I began taking in early
June. I have felt almost NORMAL for 8 weeks
now!! (See my updates at www.fms-help.com/070907.htm
and www.fms-help.com/071907.htm for
details of this amazing transformation!)
A reader recently wrote this to
me: "2 Corinthians 1:1-7 should be YOUR MOTTO,
because YOU have been our comfort–and how could you have been
so without FIRST having been afflicted?"
It's interesting that when I was a college student at UCLA in 1970,
God strongly impressed verse 4 of this very passage on my heart, which
says, "
[God] Who
comforts us in all our tribulation, that we may be able to comfort them
which are in any trouble, by the comfort wherewith we ourselves are
comforted of God."
At the time I
first read this verse, I was going through a very difficult
personal time, not knowing how much more suffering lay ahead in my life!
So I have long considered this verse my "motto" (like it or
not.....ha...)
I was soooo encouraged to hear from another reader
who is trying the same supplements I've been using since June 5 and is getting
good results too. She wrote:
"I have tried
your recommendations as to supplements. I have lots of energy and
almost feel like my old self."
If you want info on the 3 things
that brought me back to life on June 5 and a link to my online store, please
write me at dombush@bellsouth.net. I am now able to leap tall buildings in a single
bound......well, not quite! But compared to how I had been suffering with
debilitating fatigue and brain fog for
so many years, I am amazed and delighted at the return of my physical energy and
mental focus. I am getting soooo much done
now! I no longer have to move slowly and portion out my energy in a
miserly way to try to struggle through the day. I have energy (both mental
and physical) to spend with abandon and have been running around these days like
a normal person. What a difference!!!!!!
Even though I am
feeling well now, I can never forget that my loyal readers who have stood with
me for 11 years may still be suffering and need the info in this
newsletter, so I want to keep writing it for everyone. I love writing this newsletter! I mean, where else could we
talk about things like "brain clicks," chest tightness, strange side effects
from meds, panic attacks, sleep problems, weird neurological symptoms, and why
fibro improves in a forest??? Docs just don't have time for
this! (Most of them think we are crazy anyway!) You guys have been
there for me when I was lower than low. How can I ever thank you for all
the advice, consolation, information, encouragement and understanding I have
received from my wonderful readers?! You have been a Godsend in my
life! When I was first
diagnosed in 1982 (www.fms-help.com/fibro.htm),
there was no internet and almost no information about FMS/CFIDS, even at
the library except for a few paragraphs in a dusty Merck Manual which said to
give the patient antidepressants. What a LONELY, FRIGHTENING, PAINFUL TIME
that was in my life! I endured losses of every kind - my marriage, my job,
my identity - not to mention enduring the horrible suffering
itself.
Well, times have sure
changed!! Those of us with fibro are not alone
anymore! We have a worldwide network of friends who
understand! Long ago I came to the realization that the only people who understand fibro are those of us who have
it. We have all heard
comments from well-meaning people that just grate on us, like "eat right,
go to bed earlier, exercise more, think positive, take an aspirin, you don't
look sick, etc." AARGGHH!!!!!
I hope you find lots
of help, support, ideas and encouragement on my site at www.fms-help.com! It's a compassionate
place to hang
out.
BTW,
my chest tightness and
coughing comes and goes, but I don't worry about it anymore.
Everything checked out fine ($$$$$$), so
it's either a weird unsolveable lung problem from working in toxic mold 2 years
ago, or it's myofascial tissue tightness. It is a lot less frequent and
annoying than before, so maybe over time it will go away too! I continue
to take the lung supplement that I mentioned a few newsletters ago, because even
though the pulmonologist told me (very rudely BTW), that there's nothing wrong
with my lungs, but at times I cough up hard green things (sorry for the graphic
description), but it makes me really mad that this rude doc won't check to see
if this problem is in my bronchial tubes or what! Frankly, we
are out of money. More truthfully, my recent medical tests went on
"plastic money." I guess I could continue to chase this thing for many
more thousands of dollars, but we just can't afford it. Our house is up
for sale--we just have to find a way to make ends meet.
I am just so sorry that my health
problems have pulled our family finances down so badly - I have not been able to
work to maximum capacity for years, and I have incurred all kinds of medical
expenses (prescriptions, doctors, tests, lab work, etc.) I have a
hospitalization policy, but it doesn't pay for things I actually need (and thank
God I haven't been in a hospital in 20 years). My long-time readers know of my
struggle to get health insurance because of fibromyalgia being on my
records. I was turned down repeatedly and was actually told by a Blue
Cross rep that since fibromyalgia affects you from head to foot, they would have
to exclude my entire body. (Ha!)
No wonder we turn to other FMS/CFIDS sufferers
to get advice and find out what's helping them. We can pool our knowledge,
and that's what this newsletter is all about. To visit the newsletter
archives, go to www.fms-help.com/newsletters.htm
and use the Google search box there to look for specific
topics.
On a cheerier note, I really like the Sounder Sleep CD that I downloaded this week. See Topic 13
above. It helps my sleep a LOT! Sleep is my
last frontier! I've had a sleep disorder since I was 16 years old -
see www.fms-help.com/insomnia.htm.
I am now 55, so to survive, I have had to manage it with sleep meds and
just do the best I can with life despite this huge hindrance to good
health. Unless some brilliant scientist learns how to fix a broken sleep
clock--or unless God chooses to heal me sovereignly--I think I'm just stuck with
this. Well, it could be a LOT worse, and it's not fatal......
For a list of things I've tried for sleep, see
www.fms-help.com/sleep.htm.
If you have any sleep suggestions, please write me at dombush@bellsouth.net. I'm all
ears!
Til next time,
Dominie
Acne
Treatment
Candida Treatment
Cold
Sore Treatment
Essential Oils
Immune Balancing Shakes
Never an Outbreak
Shingles Treatment
Supplements That Work
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.