Fibromyalgia (FMS), Chronic Fatigue & Immune
Dysfunction Syndrome (CFIDS) and Myalgic
I have heard from many men with FMS/CFIDS/ME since 1996 when I
first began my site at www.fms-help.com.
Below are the stories of 13 guys (Greg, Gerald, Eric, Bob, Ray, Joseph, Ken, Ed, Scott, Steve,
David, "R" and Wayne) who gave me permission to share their experiences
with you. Although 75% of reported cases are female, thousands - if
not millions - of males around the world are also suffering. FMS/CFIDS/ME
is obviously an "equal opportunity" illness. To read the occupations
of my readers when they became afflicted with this illness, visit www.fms-help.com/occupations.htm.
- Dominie Bush
It has a name.
I am 46 years of age and live in South Africa. I am
married and have two lovely normal sons ages 17 and 19.
Before I was diagnosed with this illness in 1996, my life
was a nightmarish maze of dead ends with no exit sign. After being diagnosed,
the maze turned into an obstacle course. Every day I learn more about overcoming
these obstacles; but, I just can't find the end.
You know about those nightmares that one gets, where you
cannot run fast enough and then suddenly you wake up in a sweat--only, in this
situation, I long for the moment that I will wake up in a sweat, realising that
Fibromyalgia and Chronic Myofascial Pain were just a bad dream.
How do you explain to someone that you hurt all over, are
exhausted and at times feel as if you are dying while you look as fit as a
fiddle--every day, week after week, year after year. Since the early 1980's, I
spent a fortune on medical bills, covering everything from surgery and
physiotherapy /(also known as Physical Therapy in the US)/, to all sorts of
medication, different diets, psychologists, alternative medicines, sleep
therapy, and eventually, my own research in the quest for healing and living a
I had a medical condition; but, it didn't have a name. In
1976, during one year of compulsory military training, I developed a hiatus
hernia and lower back ache. However, ending up in the "sick, lame and lazy"
squad was not for me. After all, those guys all had something to show for it--
like an arm in a sling, a leg in a cast, and crutches of course.
For the next eight years, I had to go through compulsory
one or three-month, military camps. Although I am not against military training
as such, these camps became something that I dreaded. I had no physical defects
or signs to show for the unexplained pain and exhaustion that grew worse year
after year. I literally learned to "duck and dive", made friends with the PT
instructors, took double shifts, etc., in order to avoid the painful physical
In 1982, as an electrician, I had a painful and annoying
wart under my foot and a mole on my stomach right where my overhaul's zipper
was, chafing against it making it bleed. The doctor said that these; and, some
other moles had to be removed. This was my first time in a hospital. After
surgery, waking up from anaesthetic, I discovered that my lips and mouth were
full of cuts and bruises, and my front tooth was chipped.
After enquiring, one of the nurses told me that I went
into some seizure or fit during surgery and ended up on the floor. I had bitten
a pipe that was in my mouth to pieces and the doctor had to use some sort of
surgical "crowbar" to open my mouth. At that stage of my life I didn't take
things seriously and thought this was quite cool.
Due to severe sinus problems, constant sore throat and ear
infections, I had a nose operation. This was done in 1987 and brought some
relief, but the sore throats continued. Another problem was that of the hernia.
I could no longer lie down after eating or taking fluids and had severe
heartburn. This resulted in a hiatus hernia operation in 1989. It was after this
operation that my health went on a downward spiral. I realised more and more
that I could no longer maintain my work pace.
I was very active in my church and I used to do building
alterations, welded window bars and gates, fix cars, etc. Eventually these tasks
became impossible. At that stage I did shift work doing electric locomotive
repairs and maintenance. There were days that I couldn't go to work and it was a
great concern--I did not want to lose my job. I gradually stopped playing my
trumpet, saxophone and guitars.
Eventually, I could no longer "rough and tumble" with my
two sons. Low blood sugar levels and chronic fatigue became really bad and I
displayed symptoms of various diseases, yet all tests came back negative.
One morning I found myself crawling on hands and knees and
couldn't get up due to severe pain in my lower back. During the next two years
(1991-1992), I received surgery to the lower back, which included a fusion and
fitting of screws, as well as two fusions in my neck. At the end of 1992, my
spine was pumped full of cortisone under x-ray.
Time passed and after some more blood tests, one doctor
diagnosed me with "yuppie flu". I had the dreaded Coxsackie */(Editor Note:
/**/Named after /**/Coxsackie/**/, /**/New York/**/, where they were discovered,
the coxsackie viruses are part of the enterovirus family. They live in the human
digestive tract. They can spread from person to person, usually on unwashed
hands and surfaces contaminated by feces, where they can live for several days.
In tropical parts of the world, they infect people year-round, but in cooler
climates, outbreaks of coxsackie virus most often/* */occur in the summer and
fall) /*and Epstein-Barr viruses.
The treatment for that was too expensive and I don't think
any of it worked anyway.
In 1993, I was off work for almost the whole year. I had
so much pain over my whole body, yet no x-ray or any other test could tell what
was wrong with me. After a failed application for medical disability pension, I
was given an ultimatum- report back for work in the first week of January 1994,
or you are fired. So I reported back for work.
By then I was guilt-ridden. I did not know what to believe
anymore - I did not want to live anymore. I went to my union for support; and,
as a result, the company sent me for more tests. Reports included the following:
from a surgeon--"This patient is a hypochondriac" (this was actually said to my
face as well), Symptoms are psychosomatic and this patient is mimicking his
symptoms" (orthopaedic surgeon). A psychologist reported that my condition was
"all in the mind". My own report--*I think I'm crazy!***
For the last half of 1993 I had to apply for a salary and
they only covered my basic household expenses (for which I was grateful
.and so started 1994. Back at work, my former boss took me
under his wing. Our manager, however, told me that he was going to get rid of
me. At that stage, not being able to work with tools anymore, I developed some
skills on the computer. This became my "job security" so to speak, and the
manager and I soon became good friends.
For the next two years I managed to hide my problems well,
but eventually it was as if new symptoms kept surfacing. My stomach was
constantly burning and I thought I better have it looked at. I saw a specialist
and basically told him my whole story. He asked me to document everything that I
had told him and to come back again. I swallowed the camera and was told that I
had a stomach rash.
He then booked me for a colonoscopy. For those who don't
know what that is, instead of swallowing the camera, it goes up the other end
(no, not the nose). During the next visit, the doctor tried to insert the
camera, but it didn't go that far. While still under mild anaesthetic, my
muscles would contract and he couldn't continue the examination. He told me that
he had an idea of what was wrong with me and since he was not certain, he did
not tell me, but referred me to a professor who was a specialist in that area.
I was excited. Somebody may actually know what was wrong
with me. Back at the office I called to make an appointment. The receptionist
told me that the professor could only see me in about ten month's time. He was
also a lecturer and had a very busy schedule. I told the receptionist not to
bother. That left me despondent and I felt so hopeless and useless. It was the
middle of 1996.
A few weeks later I received a call. It was the professor
himself! The doctor who tried the colonoscopy on me had forwarded the document
that I had compiled for him, to the professor. Two weeks later, with a box full
of x-rays and medical reports, my wife and I sat in his waiting room. That was
the longest and most intense interview and examination I ever had. Then he got
physical! He pressed on some areas on my neck, back, arms and legs--the so
called tender points. I never realised that there was such pain hidden in my
body. Later he injected some solution right into those points. I thought that I
knew what pain was; wait until you get these injections. My "all in the mind"
condition had a name- Fibromyalgia and Chronic Myofascial Pain.
The professor had attended an overseas congress on
Fibromyalgia the week before and showed me some paragraphs in a book that he
brought back. It seemed as if I copied some paragraphs straight from that book
into my report. (This was the report that was forwarded to him by the previous
doctor). I also learned that there are millions of other people with the same
illness, but that the medical profession was still a few steps behind. Later
that day I sat crying with relief--it has a name.
This was a turning point in my life and the future looked
a bit brighter. There is limited treatment and unfortunately the treatment works
only for a small number of people with this condition. I am not one of these
fortunate ones. Fibromyalgia is not specific and does not target a certain group
of people. It affects the rich, the poor, the fat ones, lean ones and skinny
ones--saint and sinner alike.
I have tried so many remedies, machines that heal--with a
strap around the toe and one around the head (and vibrating water), pills that
caused me to wake up with a face on top of mine and a pig snout where my mouth
used to be. Funny, but it's true. In fact, some of these machines and remedies
made my symptoms worse. I now avoid these things.
I basically live my day in preparation for the next. If I
know I'm going to travel far, I have to go to bed much earlier and up the dosage
of medication that I use for sleep. I no longer use any form of medication
except for Trepiline */(Editor Note: This is a /**/tricyclic antidepressant used
in the treatment of patients with endogenous depression. It also possesses mild
tranquilizing and sedative properties which is helpful in alleviating anxiety or
agitation that often accompanies depression. It is not commonly used in the
/**/US/**/, but is more common in /**/South Africa/**/ and other parts of the
This helps me sleep, but it is not always effective. These
tablets cause my mouth to dry and my voice sounds like that of a frog begging
for rain. Among other side effects, it also increases my fatigue. One of the
most aggravating symptoms that I get from not resting well is tinnitus
(ringing in the ears) and restless leg syndrome. Sometimes it gets so bad
that it drives me crazy.
After 2 to 3 days without sleep, I get nauseous and drunk
in the head (similar to being car-sick), and my eyes won't focus. My skin gets
tender (like neuralgia) and irritated, and the body pain becomes unbearable. I
cannot use crutches or a walking stick, because of the pain in my wrists and
Something that I have learnt over the years is to keep my
mouth shut when in the company of strangers and busybodies. It is amazing how
many people (half-dead themselves), all of a sudden become experts when they
learn of my condition. "You must drink this", "do that", eat this", etc. "My
doctor is the best", "trust in the Lord for healing", "let me pray for you"--and
when they do and nothing happens, they blame me for a lack of faith. "Stretch
out your arms, breathe deep, and go ummm for as long as you can exhale" .ummm?
It freaks me out when people get like this and the thought of sitting under a
cactus in the desert, counting rattlers slithering by, becomes appealing.
I created a leaflet explaining my condition and would hand
it to a person if I knew we would be working together, or if there would be some
sort of a long-term relationship.
After my diagnosis, I also embarked on some research of my
own, but it was only in 2000 when I got private access to the Internet that I
discovered the vast amount of information available. I ordered and read the
survival manual by Devin Starlanyl */(Editor Note: She's a healer who has some
"interesting" ideas about FMS/CFS and related conditions. Her website is located
/*searched the Internet and studied many articles on Fibromyalgia, different
diets, nutrition, exercise, homeopathy and alternative medicines, etc.
Unfortunately there is no cure for this condition yet and
I had endured a horde of operations and treatments that had made my condition
worse. On top of that, I also developed an incisional hernia, from my
breast-bone, down to my navel and it cannot be repaired successfully.
I was wondering....since conditions of "all in the mind"
became so pandemic, shouldn't all these "professional doctors" then classify the
"all in the mind" as a disease or something. It seems that the easiest way out
is to dismiss the patient with "it's all in the mind", and the stigma that goes
with it is devastating to the poor patient who is only trying to find some sort
of relief. A true medical professional will not belittle his/her patient in such
a way, but will attempt to treat the something that they can only call "all in
I have lost faith in most areas of the medical profession.
What I went through before being diagnosed cost me a fortune, financially an
emotionally, and it became clear that some doctors who saw me coming--saw a way
of making a quick buck. I have the greatest respect for the doctor who referred
me to the professor and for the professor, who diagnosed me. Wish there were
more like them.
Over the years I have lost many friends because they did
not understand or accept my condition. I have also become more solitary,
severing ties with those who make me feel uncomfortable and unwelcome. My
struggle goes on, trying to survive as a man in the work environment, as a
husband and father, and in society.
Being a male with this disease is not easy. Imagine not
being able to walk fast, run, or jump up and down--not being able to travel a
lot, or for far distances. Sometimes when I kneel down or squat, I need help to
get up again. Can you imagine what it feels like walking down the street,
looking fit and healthy outwardly, with my wife carrying all the parcels?
These are but a few simple examples of the struggles of a
male with this disease. Sitting down while a lady has to stand, standing while
everyone else is sitting down--how embarrassing. What people don't realise is
that with the physical pain and the awkwardness of this condition, comes a lot
of emotional pain, self-denial, insecurity, feelings of guilt...and then there
were the moments when I wanted to end it all, how glad I am that I never did
such a thing, because there is always something worth living for--even if it is
simply saying a prayer for someone else. There are also my wife and sons, who
lovingly put up with me everyday.
During all of this, I was also a Minister and the
Principal of a Bible Institute (since 1991), but I stepped down from these
positions in 2003, since I could no longer cope. My greatest comfort comes from
the Lord, knowing that my pain cannot compare to the pain of His cross and that
He has a plan and purpose for all of us.
To my Fibro-friends, maintain a good diet and exercise
routine, take one day at a time, never give up, because you are stronger than
you realise, and it has a name. Fibromyalgia!
I was diagnosed in 1987 with FMS/CFS. As I can recall, I started having
symptoms after a car accident when I was in junior high. The pain, fatigue and
cognitive problems started to take severe effect in my years of high
school. I thought I was mentally slow. No matter what I was doing,
mentially, physically, and emotionally was never easy for me--I felt
stupid. I had to really work hard to remember things. I was even
harder on myself than my peers were. I had to resign my position as a
Medical Lab Assistant Tech. of 14+ years. It was getting harder in keeping up my
yearly CEU's and qualifications. Today I am a Licensed & Ordained Christian
Minister. I perform weddings. This is about the only thing I can do that doesn't
require me to stand for too long or give a lengthy sermon. So I am blessed with
a wonderful family who support me on all levels. My wife especially, she my
soulmate. We have been married for 23 years.
I am a 59 year old man living in the United Kingdom. I have had, I believe,
Fibromyalgia for many years. Reading your website www.fms-help.com/fibro.htm
, I can
totally relate to everything you have experienced. My quality of life has been
taken away from me for over 25 years, and no one I have ever seen in the medical
profession has the least insight into this "syndrome" which is extremely
I’ve battled with several ‘syndromes’ and other tough to
cure illnesses over the past 15 years. Many of the syndromes were a) hard to
diagnose and b) even harder to treat. I’ve gone through years of suffering with
Chronic Fatigue Syndrome (CFS), Irritable Bowel Syndrome (IBS), A distended
bladder combined with insomnia, headaches, Leaky Gut Syndrome, tonsillitis,
I could write a full book on all the doctors that I’ve visited and all the
prescriptions that I’ve taken, but I want to keep this as short as possible. I
remember reading the title of a book, ‘Sick and Tired of Feeling Sick and Tired’
that would describe exactly how I felt a few years into what I now know to be
CFS, IBS and a distended bladder. I remember reading about people who had
suffered with CFS and who were now feeling better and thinking – there is no way
that I am going to get over this. I am not going to feel better. I may as well
kill myself now. I cried myself to bed many a night wondering ‘why me?’
Thankfully I had the love of a strong family and just that thought alone
prevented me from taking thoughts of offing myself any further than just
thinking about it.
OK – the short of it is that I got sick a lot growing
up. Seemed like I had Strep throat or bronchitis once a month. Unfortunately I
also had a doctor who loved antibiotics. You may even need antis for certain
ailments like Strep (unless you have a strong background in Natural Healing) but
I have faint recollection of going for a check up and walking out with a shot of
penicillin! Shots, pills, that great tasting pink antibiotic – I was always on
one or the other. It is only now that I can hypothesize that that was a major
contributor to my later suffering.
It was November 1987 when I first
developed the symptoms that combined to form my CFS. I came down with the ‘flu’
the first week of November – exactly one week before my family and I were
heading to Florida for a week of fun in the sun. I was actually happy to be sick
because I knew that I’d take some anti-biotic and that I’d be great to go to
Florida. Unfortunately that didn’t work out so well. I got the anti-biotic but
the ‘flu’ was still there one week later. It was still there 2 months later. It
was still there 2 years later. Remnants of it were still around 15 years later.
I won’t mention every doctor that I went to looking for a diagnosis. I
also will leave out the tedious details of the trek as much as possible. For
what it’s worth – I wound up at an internist a bit past Christmas – no fever,
all blood work normal. Put me on Pamelor because it had to be depression – after
all I was negative for EBV and Lyme.
I felt like I had the flu every
single day for the next 2 years. Weakness permeated everything. It wasn’t
tiredness, where one needed to sleep, it was ‘sapped’ weakness, the kind you get
with the flu. Missed lots of school and had to get a tutor. I then developed
burning urination. Severe burning and an aching in my bladder area. My urine was
clear but I wound up on Cipro ‘Just in case’. The first of many that my
urologist prescribed. Antis and sulfas. Over and over again – adding to my
systems already torn down condition. At age 18 I had had my prostate examined
more times that I should have had to endure in a lifetime! And the only thing
that brought relief was a numbing med, Pyridium Plus, that dyed your urine red.
I continued seeking all kinds of doctors to try and track down why I
felt weak all the time. Internists, allergists (did test positive for several
allergies and started on allergy shots and medications), endocrinologists.
Everything came back fine. Even saw a counselor and went through Prozac,
amitryptiline, etc etc etc. I knew it wasn’t depression causing me to feel like
crap. It was feeling like crap making me depressed! But the docs just didn’t get
it – all those different anti-depressants not doing squat logically meant that
depression wasn’t my issue, but sometimes logic and medical just don’t mix. As a
matter of fact the only thing that ever came back ‘out of range’ was my
temperature. I was always running low, 97.5 or so, but that never concerned
I headed to Johns Hopkins to see the best of the best. I waited
2 months for the appointment and then 8 hours in the office. My dad took off
from work and drove me down. We met with a doc for about 45 minutes who thought
that I may have had meningitis back in November and that I was probably
suffering from a post viral syndrome that would correct itself by the prom in
May. It didn’t.
So – still trotting along with no diagnosis, feeling
like crap, and with no answers whatsoever, my urologist performed a prostate
biopsy and it came up clear. I don’t need to emphasize that an 18 year old
getting a needle anywhere near the prostate is not all that pleasant. He did
find a varicose vein ‘in that area’ that he wanted to remove. I went under the
knife and had the varicocele taken out. The burning did not subside. After we
came up empty with this expedition I had no clue where to turn next.
few months went by. Basically spending all day in my home, every minute of which
I felt weak. Every minute – not one day passed that I didn’t feel crappy.
Weakness and frequent burning urination. What a pair!
It was a few
months after the prostate biopsy that someone recommended a urologist a few
towns over. We set up an appointment and my father and I headed over. He did a
basic urological exam and tested urine. He then said, “It’s not your prostate.
You have a distended bladder.” He prescribed the high blood pressure medication
Hytrin to relax the bladder. I picked it up that night and started it the next
My burning urination started to fade. I couldn’t believe that this
doctor was able to find in 2 minutes what my first doctor was unable to find in
2 years and with several thousand dollars worth of tests as well as a surgery
‘under my belt’. My burning was completely gone within 2 weeks. This was my
I was now into my second year of weakness. I tried to
call on the knowledge that the burning was cured after a long hard road – so
possibly could everything else. But it was tough. Depression was also growing.
Sick and tired, sick and tired…….
I wound up at an Ear, Nose and Throat
specialist. Surprise surprise, I had a deviated septum that was causing sinus
infections. Surgery. The most painful surgery I have ever undergone to date (and
I’ve had a hernia as well as a second and third sinus surgery). The septum was
rebroken and reset. Within three months it had begun to pull back ‘out of
place’. The surgery didn’t take. I later found out that this locally famous
doctor had been suspended for crack use. What a joke.
Found myself at a
second ENT. Guess what? I had chronic tonsillitis and they had to come out. I
was hoping that this chronic infection was the cause of all my suffering – the
Merck Manual’s list of symptoms absolutely mirrored my own. I had the tonsils
out (something I now regret but who knew) and after 3 weeks of pain – no relief.
Well, that’s not completely true. I started to get far less sore throats and I
did have a day or two in a few months where my weakness subsided. I actually
knew what it felt like to feel good again. The only problem was that the day or
two that I started to feel better actually served as a horrible ‘tease’ as I
would slip back into weakness. I would have a day or two of relief and then
weeks of relapse.
My ENT saw me a few times for subsequent sinus
infections. He wanted to go in there now and clear out my passages as well as
take a shot at the septum. Sure! Why not?
He did the surgery and on my
one week follow up he said that scar tissue was forming. He shoved a needle into
my nose and numbed it up. He then stitched plastic into both my nostrils to keep
the scar tissue from being able to join together. I later found out that most
surgeons do this while you are in surgery! 2 days after this rather pleasant
experience I cut the stitches out myself and removed the plastic. It was driving
me nuts. I never went back to him.
The Hytrin was still doing its thing
but as with all meds I did develop side effects. My mouth was constantly dry. I
had odd nightmares. (Later research through the Life Extension Foundation (www.LEF.org
) revealed that it could affect
melatonin and other brain chemicals so I started taking it at night instead of
in the A.M. as it is normally directed. This helped with the nightmares.) I also
had this enjoyable urge to faint when I got up quickly. Once I even fell through
a glass coffee table after getting up from reading the comics…Joy Joy.
went to see a local internist. I was now approaching 3 years of sickness. . He
diagnosed me with CFS. Finally. I felt a little better just hearing that. I had
a name for this demon. I also underwent a scope because I had now been
experiencing severe stomach pains and bouts of diarrhea over the last year. He
diagnosed my IBS. A second prescription med, Bentyl, was added. It also worked
well. My stomach pains subsided. However the thought of being 20 years old and
taking two prescription meds with their side effects (I was chewing Advil to
fight off almost daily headaches) didn’t sit well. And I still was weak 90% of
my days. I knew that I had to do something myself. But I also was lucky to have
this guy as my doctor. He put names on 2 things that no one else could. Plus he
recommended that after I used the Bentyl for a few weeks to get through the
current acute stage that I try taking Metamucil at night. People mistakenly
think that Metamucil is a laxative. It is not. It is a bulking agent. Fiber. It
binds water together with the fiber which means paradoxically it can help with
constipation AND diarrhea.
I used Bentyl for two weeks and then switched
to Metamucil. It worked. My IBS was lessened tremendously, probably around 80%.
Most importantly the pain was really lessened and inadvertently my doctor had
turned me on to Natural Healing. If a simple product containing psyllium could
almost cure something as well as a drug could – what else was out there?
I won’t go through every single thing that I researched or every single
product or technique that I tried. I probably couldn’t remember them anyway –
even with the Ginkgo that I take…but I will touch on some of them.
a lot of research on CFS. Theories of the cause of this syndrome changed a lot.
Blood pressure abnormality (I had a tilt table test and tried the drug Florinef.
I increased my water and salt intake too, but it didn’t help), viruses, brain
stem issues. Nothing I tried helped very much. I had read Durk Pearson and Sandy
Shaw’s book ‘Life Extensions’
a few years back and
that drew me to nutrition. I read and reread that book. I wore the cover off and
had to track down a second copy at a used bookstore. I tried Hydergine, but it
did not help. But because of that book I found myself searching for the Life
Extension Foundation on the Internet. I joined their buyers club and started to
get their excellent magazine. Here is what I have done directly because of Durk
and Sandy...[Read the rest of the story at http://mywebpages.comcast.net/gnxfan/bio.html
My name is Ray. I'm 29 years old. In 1998 I started
developing strange symptoms in my body. It began with severe pain in my neck and shoulders, pain and stiffness in
my arms, hands, fingers, legs and feet, severe
headaches, not being able to sleep at night and just total exhaustion.
All this started after years of extreme
stress, including working as a aircraft mechanic with the Air Force and being sent to Turkey in 1995 (Operation
Northern Watch), then returning to a
sudden divorce and becoming an instant single parent of two children (ages 1 and
After a long period of time fighting to get out of the Air Force to
care for my children, I finally got a hardship discharge and moved to
Florida in 1997, where the stress continued to grow as I tried to raise two
young children by myself and work several jobs to support us. Then in 1998 I got
remarried, which was a great thing. However, at the same time I had to take over
the care of my 80-year-old grandmother, who was beginning to have dementia and
also had many physical problems. We moved her into a house with us and began
caring for her 24 hours a day. I also became her power of attorney and had to
take charge of and maintain a very large trust account for her. All this was
just overwhelming, especially with her having dementia and a lot of hate and
anger stored up inside of her from her past, which all came out towards me for
some reason. This marked the beginning of my major health problems. I guess you
could say that after all I'd been through, this was the straw that broke the
In 1998 when my bizarre symptoms started, I began the
journey to find an answer and ended up going to many different doctors who did
every kind of test there was including MRIs, x-rays, nerve conduction tests,
many different blood tests, psychological tests, and may other tests. But the
doctors' conclusion was that I was a healthy person and had nothing wrong with
me, that this was just all in my head. The pain started getting worse and I knew
this could not be in my head, and then finally a rheumatologist diagnosed me
with fibromyalgia and chronic fatigue syndrome. So I finally had a name for the
problem--all I had to do now was treat it. But this turned out to be a bigger
problem than I thought!
I tried many things with no results, including
drugs like clonazepam, celebrex, norflex, pamelor, and flexeril, as well as
physical therapy, chiropractors, massage therapy, acupuncture, and many kinds of
herbs and natural products--all with little to no results and the pain just kept
getting worse. There were days that I could barely move to get out of bed, and I
was just sleeping a few hours every night and it was a very light sleep at that.
I was a photographer but could no longer do that because I could not lift things
any more, like the equipment and the children. My hands were getting so bad that
I could not hold things anymore for a long period of time--like holding a
camera. Even regular things, like holding a phone to my ear, holding a fork to
eat, or holding a pen to write were very painful and sometimes impossible. It
also became harder to remember things and to concentrate clearly and to just
function in a normal daily routine....
[Long story short, Ray took a turn
for the better in 2001, thanks to a recommendation from his
March 2002 - Spoke to Ray and he is going back to work full time next
week. He took his kids to a theme park last weekend and they rode 5 upside
down roller coasters! Ray is doing fine in every way.
Spring 2004: Ray is a busy young father who is working full
time and going to school full time to be a paramedic.
In 1976, I had a dental crown for one tooth, two wisdom teeth
filled and a partial denture plate replaced with a permanent bridge affixed by
way of caps on both eyeteeth. This was a procedure that lasted for several
hours. Yes, it was all done in one session.
As far as I have been able to remember, this was the beginning
of my FMS path. I was subsequently treated for several disorder/symptoms—ulcers,
spastic colon, irritable bowel syndrome, arthritis, gout, depression,
hypertension, allergies, sinusitis, tinitis and more that I do not recall.
(Perhaps that is the ‘brain fog’ of FMS or just the result of all those
ineffective meds doctors had previously prescribed.)
I had just been through two six-week sessions of physical
therapy to no avail. The cat scan showed my rheumatoid specialist that I had
arthritis in my thumbs—about the only place that did not hurt! I told him what
my personal opinion was and never set foot in that office again. Approaching
despair, I looked forward to the day I would be eligible for early retirement.
At least I would no longer have that stress added to not knowing why I hurt all
the time in most places.
My general practitioner doctor had been of no help and I had
little faith in neither chiropractic treatment nor osteopathy. An osteopathic
doctor friend suggested trying chiropractic. He admitted he had taken only what
was required in his schooling and never used manipulation in his practice. (A
frank doctor? Yes, there is at least one, though he no longer has a private
practice. He could not tolerate the insurance companies control on what he felt
was needed for his patients.)
A physical therapy assistant had advised me that she had known
several patients who had found some relief of pain by using acupressure. She
recommended a tennis ball in a sock. The sock was to allow one to get the tennis
ball between you and a solid surface. Find the sorest spot and lean on it for
ten seconds or so. She said there were a number of spots that frequently sore
and acupressure on these often brought relief, if only temporary.
So, seven years + ago, I began a search via the internet for a
name or names to put to my aches and pains. In searching for information about
pressure points and hopefully a diagram to guide me, I ran across articles,
postings, etc. discussing FMS. WOW, could this be it?
My doctor, bless his soul, knew next to nothing about FMS but
said I could not have that. Only women had it and it was usually not the real
answer. Something else was the cause. So, with little left to loose I followed
the advice of one of the articles I had read. I went to a chiropractor. After a
couple of weeks I did feel better for a couple of days following each
adjustment. Then I brought up FMS with him. He sidestepped the issue for a while
but I kept bringing him printouts about FMS and chiropractic treatment. He
finally said that, if he had to put a name to my problems, it would be
fibromyalgia syndrome. He did not want to be accused of practicing medicine
without a license by making a medical diagnosis.
So back to my GP, I went with my printouts.. He said,
ultimately, that I might have FMS since none of the other tests showed anything
else. About a year later, it became a definite diagnosis. So, drugs of various
types were tried over the next two years or so until I reached the magic date
whereby I could take full retirement. I jumped at it and soon moved to Mexico
where it was warm almost year round. I continued my internet searching and
ultimately decided that I would try another pill. Generic cyclobenzaprin was
available and my search had lead me to believe this to be the least
addictive/least detrimental/least side effect potential of all the pills on the
Cyclobenzaprin is known generally by the trade name of Flexoril.
It is used as a muscle relaxant for most people. For FMS sufferers, it seems to
help that but also acts as a seratonin re-uptake inhibitor. In other words, as I
understand it, the natural seratonin created by the body is reabsorbed too
rapidly to be of full use to the FMS sufferer. So, REM sleep is difficult to
maintain, if achieved. Well, I did sleep better. I only woke about three times
per night instead of ten or more times. Returning to sleep was also easier.
I hate taking PILLS. I just have never trusted the
chemical/pharmaceutical industry. So, I have returned to the internet in an
attempt to find an alternative. I found much more information available on the
web and a few newer options that were natural or semi-natural origin. OPC was
one of the buzzwords. Immune Balancing Formulas, Glyconutrient products, super
antioxidants, and on. So much of it was not available to me because the
companies would not ship to Mexico. But in truth, it all sounded like the spiel
of the fabled snake oil salesman.
So, I try a modest exercise program, walk two miles or more per
day, and at bedtime take acetaminophen (Ibuprophan makes the ringing in my ears
worse and will keep me awake) and cyclobenzaprin, both in as modest amounts as I
have found I can get along with. What to try next?
A new but dear friend tells of the life she had until eight
years ago. She was processing a disability claim from her wheel chair. Her house
was being retrofitted for the handicapped with ramps, rails, and a new bath. She
thought she would have to live the rest of her FMS life from a wheel chair. Then
she was guided into trying one of the natural supplement regimens. For her it
worked. She continues with the maintenance level of the supplements and now
leads a full and active life without any of the FMS symptoms. Hmmm, maybe this
is not the snake oil salesman’s patter. I am still searching the web for info
and results achieved by others. Maybe I’ll try this one. No decision on this
I'm a 44 yr
old firefighter who felt run down most of last year and was sleeping better than
I ever had in my life but all I wanted to do was sleep. In February of
this year, I had something like the flu in which I ached and had swollen throat
and bad headache and neckache and went to my family doc who said I had all signs
of viral meningitis but didn't confirm with a lumbar puncture and he said since
it was viral, it should go away in 3 days and did but left me with vertigo that
continued to worsen to the point where I couldn't do anything.
I went to a
local ENT who put ear tubes in both ears and I immediately developed a chronic
ear infection in both ears and went almost 2 weeks for daily suctioning of my
ears that were never cultured to find out exactly what the germ was. I
went to a world renowned ear clinic in Memphis, and was told the infection had
spread to the mastoid bones in both sides and was givien a quinolone drug called
Levaquin that I had a really bad reaction to. I was put in the hospital
for the mastoiditis and given IV drugs and sent home and continued to
unbelievable anxiety and was almost completely out of it night and day for 3
months, and had neurological problems including tremors and weakness and fatigue
and also lost almost 40 lbs. but I was never in any physical pain. I also
had memory and brain process problems.
I was also
given close to 5 weeks of IV rocephin for the mastoiditis and had a
mastoidectomy and typanoplasty on side of head and ear and have lost hearing on
About 4 weeks
ago, my brain function and sleep began to get better, but I've developed extreme
fatigue and aches and pains all over my body as if a bad case of flu multiplied
10x. I try to exercise but it's as if my muscles won't build up especially
upper body arms.
been diagnosed with CFS or fibro but have an appt. to see my neurologist, who
doesn't know what is wrong with me, Oct 6 to see and ask him if he thinks it
could be either since I didn't have pain when I last saw him. I haven't been
able to work since the end of April and want nothing more than to go back to
work doing the job I love most, firefighting and your website has given me hope
that I can get better.
I also forgot
to mention that during the first 3 months when I was so bad, I didn't sleep
night or day even with a multitude of sleeping pills, all of which had the
opposite effect of what they were suppose to. Before this illness, a
Benedryl would put me out 10 hrs or more and now wires me. It's as if
my whole metabolism has changed and doesn't work correctly. I
am sleeping better but the fatigue and pain are almost unbearable at
A fever would change my life forever and how could one imagine
that a fever could do that? Over the course of a mid-June weekend I noticed
myself getting sick. By Monday morning, I woke –up feeling like my head was
going to explode; I could hardly swallow; my throat felt like sand paper; and I
was dizzy and disoriented. I asked my mother to check my temperature and it came
up a tad below 106 degrees. She brought me immediately to the doctor. I was
diagnosed with mononucleosis. I spent that summer in bed and in a personal
painful wasteland of brutal fatigue, muscle pain, sore throats, swollen glands,
sleep disorders, memory problems, brain fog, word usage problems, and a feeling
that I had lost my brain. As the fall semester would approach for college, for
this 25 year old male, I would painfully come to realize that I was not the same
Ed that I was before I left school in May, and that something was very different
about my body and my brain. I would struggle for the next five years to finish
both undergraduate and graduate studies, and go from doctor to doctor searching
for a cure and help. By the time my studies where all over, I was left
completely physically empty and there was nothing left to work in the field that
I had studied and worked so hard to get into to. In March of 1996, I finally
meet a great doctor who finally diagnosed me with Chronic Fatigue Syndrome
(CFS). At this point I was so sick that work was out of the question and
disability looked like the only option for me. Severe and overwhelming physical
and muscle pain was now becoming bad, where as it was not before, and I was soon
to be diagnosed with Fibromyalgia (FM). My doctor had said that many people with
CFS develop FM too.
After five years of depression and emotional pain with coping with my own
demons and battles with CFS, FM, The Social Security Administration, and The
Housing and Urban Development Agency, I finally found peace, serenity,
happiness, love, faith, and a higher power. Also, my disability monies came and
I got my own subsided federal apartment. So, by 2001 I felt like my life was
feeling normal again. I was still symptomatic but I had changed despite the CFS
and FM had not changed at all. I went back to church and to spiritual retreats
and through that I was able to match the calamity of my own CFS and FM with
serenity. A higher power made this possible for me. The first time in years
depression began to elude me and felt happy and serene because I was tired of
being negative and depressed and it also began to bring my body and mind down. I
wanted to find a better way to cope and live. I met a beautiful woman and we
fell in love about two years ago and she has made me a better man and a better
person. I had been alone for twelve years and I had lost all hope that I would
ever meet anyone again. But, through faith and patience my higher power put her
in my path and I was able to ask her out and hence began our process of being
This beautiful and lovely woman encouraged me to continue writing my book,
Fibro-man (with CFS). I began to give-up on it because I
figured that no one wanted to read a book from the male perspective or the male
point-of-view. But, I continued to press and type on and the book was completed
in September of 2004. The book has received wonderful reviews from both male and
female along with CFS and FM magazines. If would like to read more about my book
you can visit my website at http://fibromancfs.tripod.com.
Sometime during my mid teen years I began to have great difficulty sleeping.
It would take me 1-2 hours or more to fall asleep. Waking up in the morning I
felt as if I had not slept at all. I hated mornings. However, I was still able
to function normally albeit I was ready to take a nap at any given moment. I
finished high school a half-year early because I had already fulfilled the
required number of credits for graduation. I enrolled in college and began my
first semester in the spring of 1981. At this time I also took a job with a
landscaping company to help pay for my college tuition. It was very hard manual
labor. I would often go home too exhausted to eat and would simply plop down in
bed, dirty clothes and all, and fall asleep. Mornings brought no relief from the
fatigue yet I kept pressing on. Getting through college was extremely hard. Not
because the academics were more difficult than they were for anyone else. It was
the simple fact that I had great difficulty staying awake during class and while
studying. I thought what I was experiencing was normal. I was to find out in
later years that it was not.
With the Lord's help and the strength that youth brings I was able to
graduate from college. However, the fatigue would continue to plague me as I
entered the workforce. I found I had the same problem at a corporate desk that I
did at a classroom desk. I was becoming deeply depressed and it was at this
point in my life that I began to entertain suicidal thoughts.
FROM DOMINIE: Please continue reading Scott's
story at www.skblades.net/fibro/fibro.html. Scott's experience with insomnia is similar to mine - beginning
in the mid-teen years. See www.fms-help.com/insomnia.htm. I once heard from a man in his 70's who had not slept since he
was 18 in boot camp! He said, "If you think boot camp is rough, try it without
sleep!" He went on to have a life filled with bad health, physical suffering,
surgeries, etc. Years later, he called to report that he had finally slept after
he began taking an immune balancing powder. I have often wondered if the
vaccinations he was given in boot camp damaged his immune function and the part
of the brain that controls sleep. Or perhaps the stress of boot camp itself
changed his brain function or chemicals. I hear from many more teens now who are
developing insomnia, FMS and CFIDS. Wonder what's going on? Could it be a virus,
a mycoplasma infection, or too much modern day stress? More comments about kids
and teens with FMS/CFIDS is at www.fms-help.com/teens.htm. After much stress in my life, my health collapsed in June of
1982 (literally overnight) when I was 30. I was diagnosed shortly thereafter
with fibromyalgia (then called "fibrositis"). My story is at www.fms-help.com/fibro.htm. Fibromyalgia is an epidemic now - hindering and hurting people
at every stage of life - all over the world! Still, doctors can't seem to help
us much. Many don't "believe" in fibromyalgia, and the ones who do don't
understand it unless they have it themselves (assuming they can still practice
while battling this disabling condition!) See my 100 Tips for Coping with
Fibromyalgia and Insomnia at www.fms-help.com/tips.htm for some things I've learned as a fellow
Here is some of what I have learned as
a man from my own
experience with CFIDS/FMS, life, suffering and
Who can know the pain and suffering one must endure?
When misunderstood by those who have no time,
to account for their own
infirmity and lack of understanding.
There was One who bore all of
our diseases, faults, shortcomings
and weaknesses. He understands. The One
who was rejected,
so that we might know acceptance. Hated that we may be
Reviled so we could be blessed. Had compassion for those who
Pray for Mercy upon all those who would judge,
having so far
been spared the pain themselves, knowing not what they
So fulfiling our own calling, that we might use that which was
meant for evil, rather to be turned back and used for good
One has already done for us in loving kindness.
This is why my loud
cry is always for Grace!
I was born with vision problems. I never thought of
it as a tragedy really. I had usable vision during my early years and was
just trying to do what was expected of me by teachers and parents. I
developed glaucoma while very young, and I lost my remaining vision within
several years. That was horrible for me because I did not adjust well to
not seeing anything. I got easily dizzy, confused, and even upset.
Several stressful surgeries did not help matters. I missed quite a bit of
school, 81 days in fifth grade alone. I was able to get my braille books
and study on my own and be promoted to sixth grade.
In high school, I noticed I had sleep problems at times
and got my days and nights mixed up in the summer. I didn't worry overmuch
about it. Just thought maybe I was a little bored or just lazy or lacking
in will power and discipline.
Sleep matters only worsened in college. I spent one
entire semester going to bed about 6:30 pm and getting up at about 4:30
am. I had no roommate and really had few friends. I was too
serious trying hard to maintain a 4.0 average and to take some advanced
placement tests to place out of several courses so as not to be delayed in
graduating. I kept that 4.0 throughout my first three semesters and had
over 60 hours going into my 4th semester, beginning my junior year. Not
that all that matters now. Getting good grades is such a hoax and a
myth. It's networking and being sociable and doing decently well unless
you are a scientist or doctor, perhaps.
I looked for work and found a typing job but had so much
trouble with sleep that I had an EEG trying to rule out narcolepsy or sleep
athnea. Both were ruled out, and I left my typing job. I later
taught for several years but found the work very stressful. I knew even
then something was not quite right with me. I thought if I could
find the right supplement, and I sure tried many, I would be ok.
Several years ago, I was diagnosed with FMS. I
remember feeling relieved that I actually had a real condition. Now, I
hate the very word FMS or anything with fibro in it. Though I did manage
to get a Masters Degree prior to any diagnosis, I have never been able to use
it. I have felt like this past decade was wasted. Last year, I had a
severe reaction to steroid medication, suffered a dangerous fall either down
several flights of stairs or off an upper story balcony. I suffered
fractures to my back and pelvis which are still painful. I hurt more now
than I ever did. I also have been waiting for recommendations concerning
FMS treatments, but as of this writing, 09-11-09, I have received nothing.
I feel so lost and overloaded by this FMS. I could just about handle being
blind. Granted it was no holiday, but this combination of FMS and
blindness is just ghastly.
It's tricky, too; because I'll have a good day and then
think I'm normal. I'll then have a bad day (where I collapse to sleep
about 8:30 pm, wake up about 12:30 am anxious and worried, then take something
and go to sleep for another four hours) and have to start canceling plans to
visit people or to shop for groceries (cooking is a trial) or even to visit the
chiropractor. It usually takes me planning ahead over a week--even two--to
get rides to places, so when I have to cancel, I can't just go the following
day. I have looked for a supportive church group and am continuing to do
so, also, a hobby, and things to do to keep my mind ok. I love to learn
new trivia type facts and such. I just feel if I disappeared, no one would
really notice. Food has gotten to the point where I always feel guilty:
guilty if I have a Coke, a hamburger, or I worry that I will never be able to
afford to eat like [health websites] suggest you should.
Reading Dominie's newsletters over
the past five years has been an interesting experience--educational even.
I am glad I'm not alone, though it can seem I am sometimes. I wonder if
other blind people exist with this and how they cope. Seems we are all so
differently impacted by this syndrome! I wonder if they handle the
anxiety, mental fog, and tiredness better than do I?
Thank you for your site www.fms-help.com and for sharing your
life with those of us affected in the same way. For those of us
who are depended on to provide, this creates a whole different
dimension and strangely often those affected are female (meaning finding a way
to return to work is non-optional and I seem to have encountered many women who
have found their way back to health by taking a sabbatical or withdrawing from
work). I suppose there is an unwritten societal moray for
men to just tough it out but when this drives you to being
bed-ridden for a few months there is not much oomph left in the
system. The financial collapse that follows the health collapse
creates a stress wheel that seems to be its own perpetual motion
device. I have made it from the bed to the desk and can work from
home and am hoping to be able to make it the rest of the way back to an office
environment. Any personal discussion beyond half an hour produces
double vision and the inevitable following physiological
I appreciate you sharing with us what has worked for
you. I laugh at so many of the mistakes I have made that
you caution about (paying for my own meds, I have lots of full containers of
drugs that I should have only bought a couple of pills and determined would not
work). In trying to find some hope in all of this, I stumbled on a site
that says one must go through all of the stages of grief as if
diagnosed with a fatal disease before moving on. I cannot reconcile that
with the need to provide for my family which is an area I can
do no more than trust God for daily provision. On my “before” list I had a
pretty full life with lots of energy; I struggle to find much to write on my
“after” list. What I need are suggestions on how to move on rather
than hoping one day to wake up feeling differently. I am open to
a miracle, but I need a strategy in case one does not show
up. This seems to be an area your site www.fms-help.com provides unique insight
I think I might have stumbled into a surprisingly
effective link in the medical system though. I am now seen by a PA rather
than a doctor since a prescription and a ten minute chat will not much
help me. Like you, she believes if we can find a solution that
will result in restorative sleep, some of the symptoms will
eventually diminish. In stark contrast, my GP “helpfully” explained that
it I must be frustrated having tried all of the meds approved by the FDA for
this issue without any positive effect, and that I should understand that it is
also frustrating being the doctor and not having a prescription to write to make
me better. Chronic problems don’t disappear in a single
visit. This is when I realized I needed to find a
different type of doctor.
Thanks for providing hope to those of us in a
very dark place. The situation one is placed in with this
malady is essentially inexplicable to those who do not have direct association
with someone stricken with it. A simple dinner invitation produces a great
dilemma in that accepting for any date beyond today is not possible as I have no
way to predict if that will be a good or bad day for me. My
guiding scripture through this assures me that sufficient for the day is the
trouble thereof. If I dare to think about tomorrow, my world collapses in
a single thought. I have discovered that pain, fatigue, and all of the
other symptoms are much worse when coupled with the loss of
hope. I can believe for today but I have to trust for
tomorrow. Odd how this simple truth is revealed when there is no other
If I could pick a single topic for the
men’s forum it would be how to handle setting the expectations
of those outside your immediate family without having to provide a long
explanation. Surely someone has a better grip on this than I
do. I realize that part of my problem comes from “appearing normal” when
need be yet in many cases I don’t have any other option. We need a simple
explanation. [FROM DOMINIE: Below is a chart "R"
made to explain his symptoms.]
My name is Wayne and have suffered from fibromyalgia for 7 years now. In
that time I have suffered a lot. I tried all natural medications with no
results. I recently went on a prescription medication called Cymbalta. It is
soooo good. Has taken away my nerve pain by 70% and muscle pain is reduced. I
know it is a medication, but I had no other choice. My wife and kids were
suffering along with me, and it was getting me down. I have tried other
anti-depressants before, but nothing like this. It is a little harsh at times
and can inflate blood pressure. It also upsets normal sexual functions in some
people, but all in all I am almost pain free, and I am happy. The Lord Jesus
Christ has been my inspiration along with your newsletter
DOMINIE: Everything these readers have shared and experienced is so
very true! Men with fibromyalgia DO face more social stigma than
women. A list of occupations that my readers had when FMS/CFIDS
struck is at www.fms-help.com/occupations.htm.
To read more stories of male readers with fibro, see www.fms-help.com/men.htm. I hope my 100 tips for
and list of helpful things I use www.fms-help.com/what.htm will
encourage other sufferers and give them some useful ideas to try, although we
are all unique in our responses to meds, supplements, and lifestyle
To subscribe to Dom's
weekly FMS/CFIDS newsletters, please make a one-time donation of any amount:
100 Tips for Coping
with Fibromyalgia & Insomnia
My Fibromyalgia Story
My Chronic Fatigue Story
My Insomnia Story
What I Use
Dominie’s FMS/CFIDS newsletters
II Corinthians 1: 4 - "Who comforteth 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." Visit Dominie's
FMS/CFIDS Homepage at www.fms-help.com for Fibromyalgia and Chronic Fatigue Syndrome
sufferers and their families.
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DOMINIE'S FIBROMYALGIA & CHRONIC FATIGUE SYNDROME
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.