Fibro-Friends

DAMIAN ABBATE'S STORY

Hello my name is Damian Abbate. I live in Edmonton Alberta. I thought I would write to you and tell you my Fibromyalgia/ Multiple Chemical Sensitivity/ chronic Fatigue story.
I am 33 and have been married for 13 years this Sept. I have 3 children ages 9, 7, and 5. I am a licenced automotive mechanic and have worked as a heavy duty mechanic. I can scupt in stone and had a home business with stone before my illness forced me to close it. I am no longer working as of Nov. of last year. I came to the point of not being able to work after trying many different kinds of work and not having any relief from the pain.
My FMS/ CFS/ CF symptoms started 2 years after I was married. I started having severe hip pain after a ski trip and the hip pain lasted for 10 years. In that 10 years I developed every symptom of FMS from bowel disorders, and no sleep to reoccuring gum infections, absolute brain malfunction and all over muscle weakness and pain.
I have found, after being at home for over 7 months, my symptoms subsided somewhat. I now know that the thousands of chemicals that I come in contact with everday, from new carpets, vehicle exhaust, paint, perfume, laundry products, and fake wood products to name a few, make my symptoms go through the roof. It's been difficult to stop working, but it has been such a relief from the symptoms. The worst part is the lack of support from family members. I look healthy on the outside and try to keep a happy disposition when I do meet with people. I usually meet with people only when I am feeling well and they think I am doing great.
Trying to get any financial support from any of the insurance programs I paid into has been a joke and am currently waiting for a second response from CPP disability after they told me I should be able to work and rejected my first claim.
I am currently taking LDA therapy every 2 months. It consists of very low doses of chemicals and food allergies taken with a needle in hopes of my t-cells rejenerating in to ones that don't react so badly. It has worked great for the food allergies and about 5percent for the chemical sensitivity and pain. But it's only been 2 treatments and it can take up to a year and half.
My story is much more extensive but right now I feel as though my thoughts are being funneled through and narrow slot and can't quite make it through without a tremendous amount of energy and have a temendous amount of muscle pain from taking my boy to the newly renovated dentists office today. So I am going to send this to you and hope that someone else may find encouragement that they are not alone.

The following is from an anonynous, male, author that suffers from FMS.

Fibromyalgia From A Man's Point of View:

Men can have heart attacks, broken legs, the flu, chicken pox, the mumps, kidney disease, liver disease, cancer, and other illnesses.

Heart attacks are very acceptable in men. Everyone knows the heart attack is the result of a "manly life." But for a man to have an illness that:

(1) Has to be explained.
(2) Does not show up on x-rays or in blood work.
(3) Is not universally accepted by the medical profession, is really taboo in our society today.

Fibromyalgia (FMS) is becoming a little more accepted, but not in leaps and bounds. One has to understand what FMS does to a "person", before one can understand the man's point of view.

Fibromyalgia leaves one in constant pain, and that pain varies from person to person. Some can continue to work, while others are left almost helpless with the pain. FMS is not a new fad disease. It has been around since the 1800's. It has been called an "invisible disease" because there is no noticeable visual impairment to the "victim." If there were cancerous sores, open wounds, a cast... some visual evidence for the chronic pain, it would certainly help the disease be accepted by so many people.

Men are no different from women when it comes to the disease. They have most of the common symptoms and they certainly have the pain. Many studies indicate there is a difference in the pain levels between men and women. However, most men do not agree with those findings. They have the tender points, the irritable bowel syndrome, the chronic fatigue, the fibro fog, the aches and pains, the emotional and physical drain, and the sleeping disorders. Yet some of these studies indicate the women have the more severe forms of pain.

"Shake it off" is taught to boys from a very early age. "Be a man, and take it like a man" is often instilled into the minds of young boys and young men from a very early age. Men can have broken arms and that is OK. But it is not OK for a man to have to go to bed because of a headache, or over-all aching and stiffness, or some of the other severe forms of pain FMS produces. It is just not a "manly" thing to do.

Young men are raised with super heroes:

Superman, Batman, Spiderman, the list goes on. Kryptonite will disable Superman and remove all of his super powers. This is acceptable. It is not acceptable for men to be disabled by some invisible disease. It is often hard to leap tall buildings at a single bound when one cannot even get out of bed, much less walk... and leaping is the last thing the world one wants to do.

Fibromyalgia does not "shake off." It is Kryptonite to all that have the disease. Male or female, FMS makes no gender preference when attacking the body of its victim. Fibromyalgia is like some arch villain - some evil super being reeking havoc where ever it goes. It is a very destructive force to be so unknown to much of the medical profession. It is true that it is becoming more accepted, but considering it has been around since the 1800s, it is alarming to realize the medical profession knows so little about the disease.

Fibromyalgia causes more than physical pain in men. It also causes emotional pain, and even fear - fear of losing ones spouse or loved ones. Fear of the loss of friends, family, co-workers, and even jobs is a constant thought in the minds of men with FMS.

Is the fear men perceive greater than the fear women with FMS perceive?

No, it is not. If a divorce is the result of years of dealing with fibromyalgia, it doesn't really matter whether it was the male or the female who suffered the FMS, the pains of a divorce are equally felt by both individuals. The results are the same.

Typically men do not open up and discuss what is going on in their minds, their lives, and especially what they are feeling. Some men are fortunate enough to have a friend they can talk to about FMS and how it feels, but most men tend to bury how they really feel when faced with the disease. Women do the same thing. It is basic human nature.

More men are being diagnosed with the disease as time goes by. There is little information on the topic of men and fibromyalgia. It has not received as much attention as women with FMS. It is true there are more women with the disease than men. That could be partially due to the fact men are very stubborn. They do not and will not go to the doctor for what appears at first to be minor aches and pains.

One can ask how do men deal with fibromyalgia?

How do they deal with the fact they can no longer play with their children, do things with the grandchildren, go hang out with the guys, and even do minor things around the house?

They hurt. Inside. Way down deep. That is how they deal with it. They hurt just like women do when they are faced with the same identical issues.

How do they feel when they get fired from a job because they cannot do it anymore?

They hurt. Inside. Way down deep. They feel identical to any woman who gets fired because FMS has stolen her ability to provide for herself or her family.

That is how men deal with it.

The expression of those feelings is where we see some differences, many men bottle up those feelings and keep them deep within, which cause stress and makes FMS worse.

Many become angry and bitter, this again making the disease worse. They tend to want to blame something or someone for the disease, so often they lash out at those around them. Explosions of pent up anger are quite common and they are not by any means gender specific. Women often act in the same manner.

Men lean towards solving the problem themselves. They are accustomed to "fixing whatever is broken." When they discover they cannot "fix" fibromyalgia and they have to live with it, they undergo the very same feelings women do when they make that final decision to learn to live with FMS.

The world of men with fibromyalgia is literally filled with true super heroes. It is filled with men who get up every day and do the very best they can to live a normal life; men who try so hard not to show the pain that they often over-extend themselves just to have a few extra moments with their loved ones, to have a tiny miniscule portion of a normal life. They try to hold down the position of "head of the household" the best they can. However, they cannot do it alone. They must have the support of their family and friends. The same is true in the world of women with FMS who try to be the wife and mother.

These heroes find a good attitude, a good sense of humour, a good doctor (which is difficult to find), close friends, and close family ties to be their tools of the trade. Humour can be a very effective tool to get one through the day. Even with these tools, it is very difficult to "keep on keeping on." But the true heroes just keep going.

Be it man or woman, fibromyalgia does not really care one way or the other. It shows no mercy. So many times it seems as if FMS has one function - to produce as much pain as possible, physical, emotional, and mental. It seems to attack one area of the body, then move on to attack another. So who has the most difficult time - men or women? That is almost impossible to answer.

Fibromyalgia. It hurts. Inside. Way down deep.

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JOHN'S STORY

In Jan 1993 a sharp pain appeared in my neck and right clavicle, over the next 3 years I went thru surgeries and Drs., and pills. Then being told it was in my head and I needed a clinic...long term cause I was after the drugs! so I went 2 weeks with nothing but water and bread worked every day and spent everynight with my back on the cold concrete floor of my home. My then 4 young children and wife's life's depended on me bringing home the bacon you know the American dream. After 2 weeks I decided I was not hooked on anything but pain which I learned to live with, over the counter crap that eventually ruined my internals. I finally got a DR to give me Mercifully 1 to 1.5 lorcet a day for 2 yrs. as I plead with him if I could only get pain free for a few hours when I come home to my children. Over the next 3 yrs my dirty little drug habit expanded to 4 and eventually 6 hydro's a day. Once I drove to Canada but the Tylenol 3's there were weak and too much Tylenol. I played the game of trying to find enough to actually get out of pain. I quit cold turkey twice during those yrs..hoping that I would be better off with just the pain as the pain and the Stigma of being a junkie!! by 1999 I had turned to using what ever I could to just live. Every Family photo. every vacation picture whether in my mind or on an album is scarred with the pain hide it choke it down pretend it isn't there. Every lucky rabbits foot in a jar or bottle or cassette tape that came along We tried. My wife and I that is. in 2000 I was diagnosed properly after going to dr. Gatel in Georgia whom id researched on the then relatively new in my area Internet. I got spiritual confirmation each time I read about his Pain Research. So we hopped a plane. But he could only do so much without me seeing him more often. By the time the methadose he prescribed with other items for break through, etc., got titivated high enough to help me. I was getting sick from its toxic side effects. By 2002 I had finally gave up working, I was months behind on sleep and running on Dextromethorphan and whatever I could get my hands on. I had tried Fyntenil for a while but it like other Synthetic drugs tended to take ever increasing dosages with no plato....or they never stayed with it long enough to find one I really think the fentanyle was the superior pain killer but if it wears off and the pain comes you ask for more or put a new patch on two soon and then they take it away altogether because they are taught that such behavior is cause your a junkie!!! well after another failed surgery from a miracle man in 02 I finally got the local dr. to dose me enough morphine sulfate that I actually feel almost human several days of each week. Now that doesn't mean normal or enjoyable just alive and not suicidal..as I had become previously....Sold out of my business and have been awaiting SS disability for 2 yrs and just last week we got the Final Denial From the judge.....I could awnser a phone for a living they said. some kind of teleoperator! great!!!! that way I could lay in my sick bed and make sub min wage....Well its a good thing I'm not supposed to swear on the Internet. I have watched my home become the banks again and sold my suburban, Gun collection, and nest egg... to now be burdened knowing in 1 or 2 yrs when the Income from my business sale is gone I will be unable to make the house payment, etc., good thing life insurance is still getting paid. My kids and wife may need it to survive. Now the positive side .....let me think...............

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OTHER HALF---EYOTA MOM

MY FMS STORY_____started with a car wreck

We were in Springfield Mo. On Chestnut Expressway___in 1992……doing about "45
mph" on the 4-way; when a car darted out in front of us. We hit it sideways
……….."totaled" my truck……….and this was the start of my ________bout with
FMS.
Whether from the fact….."my head badly cracked the windshield"; or the awful
twisting of my body into the "dash area"; along with the not-gentle "removal"
of me; from the floorboard of the truck; (they had to pry the door open to
get me out; and I was in a twisted heap on the floor, so much so……….I was badly
bruised just from that); THIS started a long journey into the world of
"FMS".
It is true…I had a nasty case of "whiplash"……..and a nasty concussion.
Whether the whiplash was the real………..clincher in the start of FMS__is anybody's
guess.

I had a terrible time after the wreck recovering. It seemed like months went
by; before I could walk straight…without "leaning" to one side; or__leaning on
a wall…to keep from falling over. There was a lot of bruising……and
hyperflexed muscle problems…..but no "broken bones". I was told several times; I would
have been better off; with broken bones; as they heal better…..than "nerve and
tissue damage". My right shoulder had "hyperflexed" so much; it literally
came "out of joint" several times after the wreck…….and still causes me a great
deal of grief. There was "nerve damage done"…and to this day….I have a lot of
"burning-pulling and stabbing" pain in that shoulder. Ther have been
instances the pain was so bad…it has "dropped me to the floor" and taken my "breath
away"…..(something I prefer only a "lover" to do!)
With my rotten luck; I could not have an "MRI" scan done……due to the fact
that I had major surgery; years earlier; and they had used many "metal surgical
clips" internally;……for suture.

It was a long haul…….with many Doctors; none of which for about a year
seemed to be able to pinpoint "why" I did not ____just bounce back; from the "wreck"
….many times I was accused of "exaggerating my pain and symptoms. Needless
to say all that did was make me antagonistic towards the medical community. If
they only knew how bad it was………I am sure I would have had some "real
apologies" from several of them.

Finally a Doctor in Great Falls; MT; at the "Rehab" Clinic there; stated I
was developing---(and had developed---FMS).
Underlying damage to "tissue" in my chest, shoulders..etc. had formed scar
tissue; and was constantly re-tearing……….thanks to "Physical Theraphy"…
which some of the Doctors had insisted on.

I applied for SSI in the fall of 1992.as I could not work anymore,,,,,,,and
travel as an Evangelist. My whole life came to a "standstill" during these
months. It was indeed "traumatic".
I even lost the ability to "do simple math and spelling"….and had a terrible
time; coping with "speech"…and memory recall.

They tried me on many drugs, most of which I could not take,,,,,,,,,as they
upset my stomach terrible.
Finally after months of constant trips to the emergency room, because of
horrendous pain, and sometimes inability to walk right; due to……"Theraphy"____I
quit the whole "Doctor-led";--procedure; dumped the meds, and just on my own;
started gentle exercise; walking; etc……to try and improve my "flexibility"……
and range of motion. I had lost it badly…..by the first few months after the
wreck.

Believe it or not…………I gained back just about all my "flexibility" and
range of motion; myself……….after a slow but sure…time of working on my own…
realizing; that too much exercise; and "pushing" myself………..with
"work-outs"_____did not gain me anything; but in fact; hurt me in the long-run; and flattened
me out many times for days..and even weeks.
All I had ever heard……from Doctors was……."you have to do this theraphy" and
push yourself; or you will lose your ability to do anything!
Well I proved them wrong.

The FMS did settle down for awhile……….but in the last 2 years; has "flared"
substantially. Of course I am a few years older.

They "say" that FMS does NOT grow worse with "age"…..I believe at this point;
I have to disagree with them. As I have seen with my own experiences and with
some others…………that statement is not always true….As has been noted…….all
cases of FMS can be very different; one from the other.
Agreed..I have Osteoarthritis….and "bone spurs",,,,,,,,,,,and that can
progress with age, (and most Doctors say it is the Osteo that is causing me the most
trouble) and I still believe the FMS does too. (with me anyway and many
others)
The symptoms of FMS; however; are not the same as "Osteo"______and I am very
familiar with the symptoms of both. "Osteo"---does NOT give you……
"Fibro-fog"---and the "trigger points,---- IBS; MPS, AND CFS; that occur only with
Fibromyalgia.
The pain has gotten intolerable…………(perhaps also from the fact my
"pain-threshold has weakened somewhat);
In any case I cannot "deal with it on my own anymore____I have to have help"
using "pain meds;-----or whatever".

I have not been able to "sit in a straight-back" chair…since I had the wreck
…………due to the fact; I have a "bone-spur" right at "T-9-T-10"….vertebre.
Also degenerated disks in my neck and lower back….along with arthritis.
In any case……I am now trying to get back my SSI; that I lost in '97 due to
my husbands "income"……(as if THAT changed my disability!)
AS of now;
I have 2 Doctors backing me up…………..with my claim; and I do believe I can
win it back…………..Lets just say I HAVE to; OR I am in severe trouble. I
cannot work. I cannot make it through a day, without laying down 2-3 times……
.because of the stress on my body; doing simple activities….and the "racking pain".
My diabetes……which I did not have before the onset of FMS requires Meds….and
they are expensive; not to mention the "Blood pressure and pain meds" and
all else.
Good Grief…….this "story seems" dismal…….indeed; but there is a "bright
side". I have learned to try and appreciate the "simple things" in life…………
.and to appreciate our "Creator" and His handi-work. This life is so "hectic" for
most people……they never take the time to "look" at the surrounding beauty………
..of all He has given us; much less even "enjoy it"'
When I am able; I like to paint; and have some of my work around the country…
and in France; thanks to my mentor…"Sam Tyree" whom I loved dearly………but
lost recently due to a "brain tumor".
Life does go on………somehow…………….doesn't it.

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