Category Archives: Personal Stories

Obama care? Update

It has been a rather upsetting  month for me. It began last month with my Pain Doctor telling me that after 6 months of trying his office was still not authorized to take my insurance. I have been his patient for over 3 years but he decided to leave the Hospital Clinic which was closing soon and start his own pain clinic.

My primary care doctor was searching for a replacement for me but the earliest appointment was in April and not guaranteed, furthermore he would not write my pain medications, leaving me without my medications and having to go through withdrawal. Continue reading

Family Updates for those who care

It’s now early February, Patricia just came home to our house, although she could have used an other week or two in a rehab, no one was paying. Maybe it’s just our nervousness and she is ok. I don’t know, she has a halo on her head, a feeding tube hanging out of her stomach and a patch over one eye… Looks fine to me. Continue reading

Going The Distance

This is an article that I wrote in response to the most frequently asked question I get. If you are still having problems coping with the anger and frustration from a FMS diagnosis, then maybe this will help. So here it is…..

Today I’m going to go off course for this article and talk about a question that I’m asked over and over. The glaring question I face almost daily is, “As someone with Fibromyalgia, how do you do everything you do”. That’s a very tricky question for me. It’s a question I have to answer cautiously. Why you ask, because to explain it means baring my deepest fears, my insecurities. Yet, I will address it for you.

So you can better understand why that question is so prominent for me, I’ll tell you a little bit about me. My family includes, my husband, my son, who’s a college student, and 2 young daughters. My husband travels during the week so it’s just me and the girls. This means I’m totally responsible for the house and taking care of the girls on my own in addition to continuing my career. That in itself is a job as both of my daughters are extremely active.
In addition to being a writer for Fog magazine, and political advocate, I’m also a copywriter and author. My novel was published at the end of October 2008. I’m currently working on 3 more simultaneously. Up until my family moved this past June, I also coached a competitive cheerleading squad.


I realized after the anger at my diagnosis that the only way to reclaim my life was to face it head on. Luckily I had an open minded doctor who was willing to allow me to try different combinations of medications, etc. I finally found the right treatment plan for me, one that included medications, vitamins and exercise. This allowed me to focus on the most important medical decision I made throughout this painful and frustrating process.
The decision I made had absolutely nothing to do with medications, doctors or any other treatment. I had to change the way I thought.

I had to change the way I looked at life. That has been what made a difference in my life. I had to bring myself to the point where I allowed myself to be “sick”. What do I mean by that?

Crazy as it seems I spent a lot of time lying to myself. I kept ignoring all the flare warning signs. I just kept going until I crashed. I knew everyone who knew me knew I was sick and I felt like they looked at me differently. I was going to prove to them that I could still be me, that I could still do everything. Boy was I wrong. That frame of mind and attitude kept me sick and flaring constantly. I would do really well for a week and cram a month’s worth of chores, errands, etc into that week. Then I would pay for it for the next several weeks.

I didn’t think I would ever get out of that routine. The problem was I wasn’t the only one suffering. My family was suffering as well. They are the ones who had to watch me in pain unable to do even the slightest thing. Then one day my husband said to me, “This has got to stop”. Being the one who took everything personally since I got sick, I assume he meant he was tired of dealing with my medical problems. Again, it was from looking at the negative in everything. Fibromyalgia, meant I carried the stigmatism that I was less than my normal self. I couldn’t live with that. What I didn’t understand was that I was the only one looking at it from that perspective.

What my husband meant was he was tired of watching me make myself worse by trying to do everything the same way I had before. He wanted me to find the peace inside myself to cope with the changes to my life. He wanted me to find myself again. Funny thing was, I didn’t know I was missing.

I wish I could say I found myself quickly. Saying that however would be a lie. It still took the better part of a year for me to get to that place. The place where I actually liked myself again. To get there though meant facing all of the fears I’d kept deep down where no one else would look. I was afraid of so many things.

I was afraid of letting my family down. I was afraid of giving in to the Fibromyalgia and losing who the real me was. What I didn’t understand was that I was doing exactly that by trying to pretend I wasn’t sick. I always thought I had to be perfect. Make sure my house was spotless, that my daughter’s clothes were ironed with that crisp look to them. I had to be the mom that was at all the parties and spent the night before baking and decorating all the cupcakes. Basically I thought I had to be supermom and wife, and then adding in friend, daughter, sister and aunt to everyone else. I was the mom who never missed a practice or game or open house, anything that my kids were even remotely involved in.

It took realizing with my husband’s help of course, that my life was spinning out of control for me to understand the damage I was doing. I heard the words Fibromyalgia and pretty much lost my mind. Yes it’s ok to laugh at that. I look back now and laugh a lot at how stupid I was. I wasn’t helping anyone, especially myself with the way I was acting.

So I told a long hard look at my life. I thought about what was most important to me and my family. It wasn’t until I did that that I understood that things around the house don’t have to be perfect for my family to be happy. It took them having a happy mom. How did this crazy, perfectionist who was sick constantly get to be the well rounded, happy and fairly flare free person that I am today?

The main thing I did was give up the notion that having Fibromyalgia meant I was less than I was before. I woke up and finally accepted that I can be me and still have Fibromyalgia. I can take a day when the aches become worse and lie around resting to try and stave off a flare without feeling guilty. The main thing I did was give up the guilt. Guilt drove me. Guilt defined my life. The guilt of being sick, the guilt of not always being able to say yes, the guilt of feeling like my husband was no longer getting the wife he’d married. Guilt can be a powerful emotion. One that needs constant supervision or it will destroy any chance you have at being happy.
You have to accept the having an illness doesn’t define you. You are you, the illness just is. It’s nothing more, nothing less. Once I understood that it was my mind set holding me back, making me sick I could focus on getting better. Not cured, but better. I’ve learned to watch for the warning signs. I’ve learned to see a flare coming and allow it to be without fighting it. If I’ve learned anything from having Fibromyalgia, it’s that fighting a flare will only make it worse. You have to accept that, deal with it and move on. You have to get to the place where you can say, “This too shall pass”.

It’s been this life lesson that has done more good for me than any prescription out there. There is already too much that is misunderstood about Fibromyalgia. Don’t perpetuate the myth! Live your life your way. Not the way you think others think you should.

When your body says rest, do it. Learn to listen to your body. It does talk to you. Once you do that you will find that you will be able to build your energy, and build on your happiness.

A letter from the Knights of Fibromyalgia

written by Brady, aka PizzaMan242

Suddenly, in the middle of doing some small task, sharp shooting pains begin in your chest that start traveling down your arm and it is very hard to breathe. Your first thought is a heart attack. You go to the ER and they say you are fine, it is nothing. The next day or a week later it happens again. Again they say you are fine but this time they give you a referral to a psychiatrist. Now they think you are imagining the pain, yet you know it is very real. What do you do? There is always a psychological aspect to the experience of pain, but this does not necessarily mean that the source of the pain is rooted in the psyche.

What I have just described is a very common Fibromyalgia flare up. Yet they only look at you as if you have a screw loose. They do not even check to see if it is Fibromyalgia. They look at your heart and other physical problems that could cause this pain but find nothing. They could perform a simple pressure test to eliminate or confirm Fibromyalgia but you must first navigate a maze of other tests.

Doctors and others in the professional fields label us as depressive personalities and prescribe anti depressants, then are confused when they do not have the desired effect. Probably because at the root we are not depressed, yet. You begin to doubt the doctors and yourself. They say they cannot cure it, and they can only treat some of the symptoms with a limited degree of success.

Your chest still hurts, you can hardly breathe, your shoulders hurt and the pain is traveling down your arms to your hands. Your hands are slightly swollen and discolored, your fingers are numb, your legs are killing you and there is a burning sensation in them. The abdomen is sore to touch, the bowels are churning, and it feels as if you have been shot through the middle with a rocket. Then when we ask for something for the pain, because by now it has become a constant pain gnawing at your very being. Then they label you a drug addict and believe you are faking the pain to get drugs. Now they think we are just in it for the drugs and if they do give you something for the pain. Then the DEA starts watching your doctor’s prescriptions, making the doctor afraid to prescribe more potent medications.

What do we do then? We try to describe it for our doctors and they in turn tell us we are not active enough, we are depressed, so exercise and a mood change should straighten you out. You follow the doctor’s and therapist’s directions completely, yet when all these things are done you are still in pain only it has gotten worse. You are now almost begging for something to kill the pain. Instead you are given massage therapy, heat therapy and maybe if your lucky pool therapy. None of these will work. Only the pool therapy will give you temporary relief, with it’s blood warm waters and gentle exercises. Yet even this fails, you find yourself going into a flair as soon as your body cools down. At each different therapy you are greeted with the following. Oh no problem I have seen people come in here in wheelchairs and walk out on their own two feet. Wow, you think this must be the one. They have such high success rate, But sadly with each one we see an escalation of the pain. No matter how good the treatments feel, the effects are only temporary and your back in the same old routine of pain and exhaustion.

A simple pressure test on the back and shoulders will confirm the presence of an invisible serious illness called Fibromyalgia. Still, most sufferers go to many doctors and go for years without a diagnosis. Why?

We have to pay thousands of dollars we cannot afford for tests to eliminate other possibilities. Why does it take so long, everyone knows the test? Why can’t they confirm it? Are they afraid of us because they cannot cure us? Well are they?

For the medical community this disease is a mystery. No one knows what triggers it or where it is in the body, they have their theories but nothing conclusive. Many doctors refuse to believe that it exists since it lacks that evidence. Others believe but do not want to treat it because there is no clear answer. Yet they are the ones we must turn to and put our trust in, only to leave us just hanging. Why?

Again it is because they do not know the why, how, or where to begin. They only know that we are in pain and we tend not to exercise because it causes even greater pain. Nevertheless, we must exercise. So we do so we can still stand and walk, We know we must do that much, yet they want more so we try, why? Because that is what they tell us to do. Some even believe that the more we exercise the better the chance is to be cured. The only thing they have right is that we do need to exercise although it hurts, we just have to learn to pace at our own individual level. There is no cure or even hope of major relief.

Searching for someone we can get to help us turns into a full time job. Hundreds of dollars are spent on prescribed drugs and therapies that do not help. Sometimes they are damaging, causing side effects that build until we become intolerant of most drugs and even just over stretching a little one time, can set someone back for months.

No money is being spent to research a cure, and no panel has been formed to study the effects of fibromyalgia. It is almost as if we are Lepers, banned to living a nightmare existence from which there is no escape.

The pain wakes you every two hours through the night and the days are spent in a barely functional fog. You do not feel safe to drive and even the short ride to the doctor with a friend driving increases the pain. Then only when the overwhelming tiredness consumes you. It is the same as always, 3:00 o’clock in the morning. Only to sleep for 2-4 hours, more if your very lucky.

Fibromyalgia remains a very devastating but invisible disease. It is debilitating because when we try to do anything we are in fact hurting ourselves because our muscles cannot heal themselves. Instead we are risking triggering a flare up that could last a day or even a month. Some are bedridden by the effects of this disease. Unable to do the simplest of tasks. Some take the antidepressants and after years of taking them suddenly start thinking that suicide is in fact a really good option, and sadly some have taken that course. May their souls find peace.

Everyone says that you look fine. Your employer, if you are still able to work at all, questions why you can barely do anything and then implies that you are slacking on the duties you once could do without a problem.

How can something that cannot be seen or found in a x-ray or a blood test be so devastating? We do not know. We just know that we are in pain and no one wants to help. Those who are willing to try to help are few and far between. Even then we are forced to weed through the charlatans selling their Snake Oil Cures. That is how rare it is to find a doctor who really wants to try to understand and help you. Yet even he cannot cure you or even lessen your pain.

We who suffer from this disease wonder when somebody will take notice that there is not a few of us but millions. Yes, I said millions. They can treat some of us with a couple of Advil but there are those among us who take Morphine and it does not stop the pain. The medical community only sees the ones who are getting by taking Advil and walking for 30 minutes or more per day. Some of us cannot walk for 10 minutes without a break. Some are even worse.

You stand to lose your wife, husband, family, career and your home, because this disease does not allow you to function enough to take care of all these things, to protect them as you always did before.

Your friends do not want to be around someone who is constantly sick and cannot go out to do things. No single person could imagine the multitude of sordid symptoms, let alone millions of people from all over the country and world with identical symptoms. Surely no one would choose to live like this.

We call on you to help us draw attention to this. We are tired of being ignored, and watching those among us who we call friends deteriorate further and die, but not from Fibromyalgia. No, that is not the killer, it just makes you wish you were dead. No the drugs that we take have a cumulative effect so that we get diabetes, hypertension, kidney disease, all caused by taking the wrong drugs but they cannot tell us what the correct drugs are. Nor will they admit that the drugs you have been taking are the root cause to your more mundane problems.

Please do not let another one of us fall by the wayside because we are not a majority and Fibromyalgia is a little known disease that is “all in their head” until the devastating effects strike you personally.

Acute pain protects life, Chronic pain destroys it.” Always remember this.

We the Knights of Fibromyalgia stand before you and ask there be an accounting, a task has been set before you. Are you willing to pick up the sword and aid us in our fight for recognition.

Why do we call ourselves Knights, because like the Knights of old we too are given a formidable task. The task to finally gain recognition for our cause. Our swords are our words, our steeds are our computers as we spread our cause from one end of the globe to the other. We must not fail.
We are the Knights of Fibromyalgia!

Men with Fibro STEVE’S STORY

This entry is part of a series, Men with Fibro»

Courtesy of Dominie Bush

Here is some of what I have learned as a man from my own
experience with CFIDS/FMS, life, suffering and shame.

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 loved.
Reviled so we could be blessed. Had compassion for those who
murdered Him.

Pray for Mercy upon all those who would judge, having so far
been spared the pain themselves, knowing not what they inflict.
So fulfiling our own calling, that we might use that which was
meant for evil, rather to be turned back and used for good
instead. As One has already done for us in loving kindness.

This is why my loud cry is always for Grace!

Courtesy of Dominie Bush

Men with Fibro SCOTT’S STORY

This entry is part of a series, Men with Fibro»

Courtesy of Dominie Bush

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.

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 sufferer.

Courtesy of Domini Bush

Men with Fibro ED’S STORY

This entry is part of a series, Men with Fibro»

Courtesy of Dominie Bush
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 together.

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.

Courtesy of Dominie Bush

Men with Fibro KEN’S STORY

This entry is part of a series, Men with Fibro»

Courtesy of Dominie Bush
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 worsen.

I had 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 that side.

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.

I haven’t 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 times.

Courtesy of Dominie Bush

Men with Fibro JOSEPH’S STORY

This entry is part of a series, Men with Fibro»

Courtesy of Dominie Bush
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 market.

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 yet.

Courtesy of Dominie Bush

Men with Fibro RAY’S STORY

This entry is part of a series, Men with Fibro»

Courtesy of Dominie Bush
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 3).

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 camel’s back.

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 dentist/friend.]

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.

Courtesy of Dominie Bush