Go to January 2003

October-November 2003 I have decided to make this entry without first reviewing the several entries that I made previously as is my normal practice. If there is some incongruity that has an effect on the fibro log, I apologize profusely.

These are the current symptoms that I am experiencing and a description of their intensity:

Exercise intolerance: I have noticed of late a marked increase in my intolerance, even to mild exercise. Fall starts the cooling slide of the year. I had postponed getting out in the yard to do any fall chores, until it really became remarkably cooler. I have been heat intolerant for a long time now and knew I would have to wait out Indian Summer before making any attempt.

When I finally made it out, I became alarmed and dismayed about how little exercise [in the form of light yard work] it took to exhaust me and how much more pain I found myself in the next day. I am extremely thankful, that this time around, my son Gregg and his wife Krissy were around to help me, or else the yard may still look like nobody had made an attempt with the leaves and shrubs. Leaves are a major problem for someone who likes the natural look of trees around their home but has the misfortune of being touched by fibromyalgia or any other chronic illness.

Fatigue and overall aches and pains: It has become increasingly hard for me to maintain even my limited pace with my limited responsibilities at my place of work. There have been many days I have felt like giving into the pain and fatigue and not make the effort to drive the 32 miles to work. I am thankful that I have had the will not to give in and [knock wood] have not had to miss a day of work. I guess I can be thankful that the medicine regiment I'm following with the help of my doctor, has allowed me an edge on my symptoms. I am currently taking on a daily basis a combination of Dextroamphetamine for fatigue and Endocet and MS Contin for pain. If it were not for these medicines I'm taking currently, my working might not be an option. Yet even with these, my pain and fatigue seems to be more intense than it was just several months ago.

Fibro fog: For some unknown reason my cognitive symptoms seem somewhat improved lately. I seem to have improved memory and I can read and retain a bit more than I was able to even a couple of months ago. Why this positive change? I do not know.

In general: There has been an increase and changes in stress in my life. Everyone in the family is thankfully holding their own, and are currently in remissive states. [You can read more about my family member's own dealings with illness in other portions of the Fibro log.] So this is good news and a lessening of stress, but the financial burden of what we had to pay out above and beyond what the insurance companies paid for Nancy's major battles with cancer, the paying off of education loans for my daughter's college education, helping my children out financially when necessary and my sizable decrease in employment compensation due to my job description changes [necessary to allow me to keep working] has led to a new and powerful stressor, financial stress. Sometimes I even wonder if I can afford to maintain my Internet endeavors going [This Website, "Managing My Fibromyalgia" and my other "Help Site", "Merokee Dot Com".] I hope that we can find the help from others possibly to keep and maintain these valuable sites.

It may be possible that this additional stress may be triggering the increase in intensity of some of my symptoms. I am sure that stress is a powerful trigger to fibromyalgia and chronic fatigue syndrome as it is to many other chronic illnesses. Do you agree?

Being Thankful: Due to the time of year, I did want to make note of some items from my list of things to be thankful for [ We here in the United States celebrate a national holiday called Thanksgiving Day at the end of November]:

• I am thankful that my wife and I have had the opportunity to carry health insurance through one or the other's employers over the years. I know that their are many with fibromyalgia and other chronic illness that due to circumstances beyond their control do not have the benefit of health insurance. In my country, there seems to be a wide slit in the floor of medical coverage that many with chronic illness seem to slip through. I hope that someday the many will come to the aid of the few and address the needs of this group. I wonder if there are any statistics that compare the number of people with chronic illness who do not have any amount of insurance coverage to the average for the nation as a whole?

• I am thankful that I have been able up to this point in time to maintain the dignity of being employed, I am thankful for the circumstances that allowed my employer, when my illness became a factor in my being able to keep up with the demands of my job, was willing to work with me and find me a different position in the company, in-line with my disabilities of my illness. If I would have lost my job at that time, I'm not sure whether or not I would have found a new job able to deal with my limitations any time soon.

• I'm very thankful that I have the understanding of the majority of my extended family. I hear from too many fibromyalgia sufferers that do not even have the understanding of their spouses, no less any other family members.

• Especially at this time in history, I am thankful that even though at times our two grown children have become financial burdens for Nancy and I, and have had to suffer from illnesses that also affect them greatly, that we do in fact have them with us today to share life together. There are too many parents in this world that have lost one or more of their young children or young adult children through illness, accident or due to call of duty. My heart goes out to them every time I hear about a family loosing one of their children no matter what their age.

• I am thankful for the positive feedback we have received about our fibromyalgia Web site. Even though our readership is small compared to many other sites of similar topics, I am thankful that it continues to grow in a positive direction reaching more and more people letting them know they are not alone in their suffering.

• I am thankful for the continued growth and readership in the "Managing My Fibromyalgia Forum". I am thankful for participants such as Crazee8 who bring such concern and a wide assortment of reference material that has helped many, and toni woudsma who brings us her "Down Under" humor and perspective. As a matter of fact, I am thankful for every person that has taken the time and effort to partake in the forum from the beginning to the present.

• Lastly on my abridged list of what I have to be thankful for is being thankful for hearing from some of those who are said to have fibromyalgia and say that they have found something [anything] that has led to a remission of their fibromyalgia symptoms. If what they say is true, I say hallelujah. I just hope that their enthusiasm does not lead those who have tried their solution and not had the same results, to further turmoil and distress about their symptoms they have in their personal fibromyalgia journey.

New on the Website: I have added to this Website a couple of new features. One is the Mini-poll. We will be polling our readers on subjects pertaining to fibromyalgia and chronic illness. We would welcome any suggestions on topics or areas to poll. Feel free to use the "Comments Form" on the bottom of this page, to submit your ideas.

We also have a new Guest Book that you will find at our home page, just under our public service banner for the Code Amber Alert program. So, please honor us by signing our Guest Book.

Well, until next post.....keep your chin up!

September 21, 2003 It has been an eventful and stressful time since my last post. It has reinforced my thinking on how much stress contributes to and factors into our fibromyalgia symptoms and condition.

A short list of some of the stressors that I have experienced since my last entry is as follows:

• My wife Nancy, after her routine follow up examination with her doctors at Memorial Sloan Kettering Memorial Cancer Center in New York City, was discovered to have a suspicious spot in the upper lobe of her left lung. After further testing and eventual surgery to have the tumor removed, it was discovered to be a tumor related to her previous colon cancer, and not a new third type of cancer [I have discussed her history of colon and pancreatic cancer earlier in this fibro log]. Right now her prognosis is good. Having this taken care of required several stress filled trips and stays in New York, away from our home in Stafford, Virginia.
• A whole year has passed and I have only seen my daughter once since she moved to Seattle, Washington after finishing her schooling at James Madison University [J M U]. Although we talk frequently by phone, it is not the same, and this has been weighing heavily on my spirits.
• My son, daughter-in-law and grandson have moved in with us temporarily until he finds a new job and can get themselves back on their feet. The position he had in Long Island, New York had lost its luster. After the business changed owners, business had fallen off tremendously, so he was forced to make a decision based on finances and his family's future, to leave New York and stay with my wife and I, and re-establish himself. I love them all dearly and am delighted that my wife and I can offer them some support at this critical time in their marriage. It is also fantastic to see my new Grandson Joseph every day and witness his growing up. Even though it is true that "having a baby in the house makes one feel younger", the dynamics of the household going from just 2 baby boomer adults, to 5 adults and a infant child brings along some natural stress factors of its own.
• My own fatigue and pain has been on the increase over the last several months, so much so, that my ability to continue working for my employer at the same pace, has become a big question in my mind, and put the concerns about facing a possible financial crisis constantly in my thoughts. Which came first, the increase in my pain and fatigue, or these other stressors, to cause same? I don't know, and I think I will only stress myself out more if I continue to think about it!
• And there is the saga about Dexter the blue tick beagle. [Too long to get into now, but it looks like Dexter will be coming back to live with his grandfather [Me] and his grandmother [My wife] after a brief trial with his mother [My daughter] in Seattle.

I'm sure that the Normal [normal person] reading this says that, "So what, we all have these types of experiences and stressors in our lives, and don't become afflicted with fibromyalgia or any other similar disorders!" The Normal may be surprised that I basically agree, that most people can handle stress of this magnitude or worse without getting ill. But I believe and agree with many medical professionals who propose, that those with FMS differ from the Normal in the way that our body and biochemistry reacts to stress, that somehow due to our genetics or make up, FMS sufferers are predisposed to this condition and the types of triggers that set it off. This would be the same way that some people are predisposed genetically to heart disease, hypertension, cancer, allergies, etc. and other genetic illnesses.

In summation, stress is a natural part of living and we all are subject to stress in our lives, but each of us as individuals experience our own unique types and intensity of stressors and as individuals, we can react differently and are predisposed genetically how our bodies can react to stress. This is why as people with chronic illness like fibromyalgia, we need to lessen the stress in our lives as much as possible. Some of course may disagree with this idea. What say you?

July-August 2003 Roller Coasters.... they come in all styles and shapes, but yet each one has different design and ride characteristics unique to itself. I have noticed recently that the patterns of my symptoms have changed from how I remember them being in the past.

Lately I equate my symptom's comings and goings like the smaller, but more frequent ups and downs like the ones that usually occur near the end of a big traditional roller coaster ride.

Previously, my fibromyalgia symptoms, as I think about them, were more like the large and long ups and downs that occur at the beginning of a traditional roller coaster ride. The peaks and valleys of the symptoms were longer and more intense, seeming to last for weeks or months before reversing.

Now my symptoms appear to enter their peaks and valleys much more frequently. Some times they seem to change daily, and dare I say, sometimes in less time than that. Why this change in pattern? I have many ideas and questions, but seemingly, no answers.

Is this change due to the time of year? Has my body reacted differently due to the increased heat and humidity of the summer season? People with FMS are known to have different tolerances for heat and humidity.

Is there something different going on in my relationships with others, that may be causing changes in my stress levels and my body's reaction to this stimulus?

Are my reactions to allergens changing? I once heard that our biochemistry doesn't change levels of being allergic, only our reaction to our allergies changes over time.

Is it just my mental or emotional state causing the change? Am I more or less depressed than usual?

What else might explain it? Do any of our readers have any ideas? If so, please feel free to share them with me via the "Comments Form" at the bottom of this page or by snail mail [You will find our regular mail address on our contact page].

It is very frustrating to have my symptoms change so quickly, and even harder for my loved ones and friends to understand. One day I am having a decent day and they next day I am in agony from the time I get out of bed in the morning. My level of fatigue has always paralleled the amount of pain I am feeling at the time, so of course, this is changing as quickly as my changes in pain levels. I had a hard time previously planning activities in advance, and now, it is even harder to do so.

May-June 2003...Greetings Everyone! Well, more time has passed than I would have liked since my last Fibro-log entry. May is already gone, as tomorrow will be the first of June. Quite a bit has gone on during that time to eat up the clock and cause the delay in my making the posting on a timely manor.

First of all, my employment is safe for now. TBC, in turn, sold the commercial tire division to McCarthy Tire & Auto Centers of Wilkes-Barre, Pa. McCarthy is a family owned company and has been in business since 1926. We will be staying in the facility in Manassas Virginia, for at least the next year, for that is the length of the lease McCarthy Tire has signed.

I am very happy to work for this new company, as their strength and expertise is more in the commercial end of the tire business as opposed to specializing in retail-passenger car type business. The rumor mill tells me that had the deal with McCarthy not been finalized, TBC was prepared to just lock our doors the next day, and shut down our business immediately, no questions asked. I believe that TBC could and would have done this, based alone on observations on how some of the previous Merchant's Tire employees were handled, during the course of the transition.

I had the pleasure of spending several days in Potomac Hospital during the past month. A flare up of cellulitis that stems from venous stasis in my lower limbs, as described by one of the medical people who worked with me, became a "raging" infection. It came at the worst of times. It was the same time my new grandson Joey and Gregg my son and his wife Krissy came down from Long Island to come and visit. Talk about it being a downer. They were visiting for only a couple of days and I was stuck in the hospital being fed antibiotics from a drip bag into my arm. It could have been worse ,I guess. When first informed of the sed rate last month, the first thoughts were that osteomyelitis had reared it's ugly head again.

And another piece of bad luck. The Compaq Laptop Computer I use to compose much of my content for the Fibro-log and other web site destinations, fell and broke and is still under repairs at my local Tech Shop as I speak. I really do not like making excuses for making my postings later than promised, but this past month has been ridiculous.

There seems to have been a lot of quality postings during the last couple of months in our Forum. We greatly appreciate everyone's attitude in wanting to sincerely help others. Try joining in! You may be surprised to see and feel how beneficial participation in this can be.

My wife Nancy, for any of you following her own battle with disease, has been back and forth several times to her doctors at Memorial Sloane-Kettering Cancer Hospital in New York City. They have been working together on her loss of bladder control due to her radiation treatments several years ago. She is set for an out patient procedure in a couple of weeks.

PS: Fibro-fog has taken it's toll this past month, on top of everything else. This has also made it harder to put my thoughts to paper adding to the delay in posting this entry. For this I deeply apologize.

We certainly continue to be happy and thankful about the emails and support that come our way. The encouragement always makes this whole endeavor worthwhile. Thank you! Smiles until our next fibro-log entry.

April 11, 2003...... Well! Bowl me over why don't you! Guess what? My CPK results came back normal. Although I have not been tested for this in more than a decade, this was the first time since first being tested for CPK, that a test has come back normal, not even near normal.

Don't congratulate me yet. Although my CPK count was normal, my sed rate came back much higher than what my normal reading was supposed to be. This is an indication of some sort of inflammation in my system. This was the first time I ever had this results with the sed rate, except when my osteomyelitis was flaring up. I don't understand. I do not have any inkling of my osteomyelitis being active. Believe me, I know how it feels hen it is flaring up.

The pain doctor recommended that I see a rheumatologist after the second sed rate test [done as a precaution] also came back high. She also thought it wise that I touch bases with the infectious disease doctors who helped me with my osteomyelitis flare up more than a year ago. Of course, even though the pain doctor said she was concerned about the amount and type of prescribed pain medication that my GP was giving me, she said not to make any changes until we found the cause of the elevated sed rate results. She told me to call back for an appointment once we got past the "inflammation problem".

Disappointed? Yes! Confused? Just a tad. I will let you know how I decided to follow up and what I did in my Fibrolog entry next month, as I was confronted with another problem. This other problem may be a bit more complicated than usual due to having this health condition.

The problem? I work in the Merchant's Tire Commercial Division. That is my area of knowledge and expertise, not retail. If you recall from reading about my background and history, the Merchant's Tire Commercial Division allowed me to change my position and responsibilities after being sidelined and out of work for nearly six months a year or so ago.

It turns out that the new owners, not having any background in the commercial tire business, have no intention of keeping our two commercial truck centers and Bandag retread shop. It will be either sold or disbanded.

I fear that if I have to try to find a job now at this point in my life [55 years] that I can do within the confines of my FMS restrictions, I may be facing many obstacles. I am worrying that I'll have two strikes against me in the job market. My age [although companies are not supposed to discriminate due to age] and my having health problems [I don't think companies are eager to hire those who have chronic health problems] come to mind immediately.

I'm trying to maintain a positive attitude, but it's hard right now. This ride called fibromyalgia, just like life, has its myriads of ups and downs.

Thanks you for letting me opine this month. I will give all of you an update in my next Fibro-log entry. Until next time, keep your chins up.

March 07, 2003..... Hello everyone. I hope all my friends and readers are getting along ok.

I'm writing this month's Fibro-log entry while sitting home alone at the computer, with Dexter at my side. Nancy's up in New York again visiting my son and daughter-in-law on Long Island. Nancy arrived there Wednesday evening just in time to witness the birth of our second grandchild, our Grandson Joseph William, born healthy to Gregg and Krissy. My wife Nancy did not waste any time driving up to New York from Virginia when she finally got the call that it was time for the baby to arrive.

Meanwhile, I have been cautiously waiting to hear from the doctor who I saw Wednesday afternoon, to learn about the results of my blood test and how that result might fit into her thoughts about my condition and how to treat it.

Let me back track a bit and start from the beginning.

I have been growing increasingly tolerant of my pain and stimulant medications and had been finding that I needed to take higher and higher dosages to achieve the same results of taking the edge off my pain and fatigue. Due to the amount of medication and the types I was taking [MS Contin and Percocet for Pain and Dexedrine for fatigue] I had stressed my concerns to my physician treating me for FMS.

My doctor recommended I make an appointment with another Pain Management Clinic, different than the one I had visited many months back. He thought highly of the doctor running the clinic, and thought it would be a good idea to get another opinion on treatment.

The doctor as it turns out, also specializes in Rheumatology and Internal Medicine. I have found in many cases that the Pain Clinics are generally run by or associated with specialist in Anesthesiology, but not this clinic.

The doctor stressed her great concern about the quantity and types of medications I have been taking. She stressed how addictive the MS Contin was due to its morphine component, and how bad the continual use of Endocet [Percocet] was for my biochemistry and internal organs.

After reviewing my history and reviewing the medications I was taking, the doctor seemed to zero in on my history of having very elevated amounts of CPK enzymes in my blood, any time it's been tested for. She wanted to start me right away on a medication called guaifenex. She theorized that my fatigue and aches and pains could be as a result of a build up in phosphate in my muscle tissue which is interfering with the biochemistry of the muscles and causing the throwing off of excessive amount of CPK enzymes into my bloodstream as a by product of the chemical reactions.

The guaifenex would act to eliminate the excess phosphate in my system and bring it down to normal levels and return my biochemistry to a more normal state, and in doing so, relieve my symptoms of pain and fatigue. She said that she would have a better idea after getting the results from the blood test she was sending me for after my appointment with her.

Needless to say, I'm a bit skeptical to say the least about this theory. Why didn't someone else come up with this idea before, after reviewing this same history? I figured I had nothing to lose though, so I started taking the recommended dosage of guaifenex that night. I'm not going to get my hopes up too high but I am patiently waiting to hear about the blood test results and what the good doctor has to say. Friday's gone. I'll have to wonder about it all weekend now. The results should be in no later than Monday the 10th. Meanwhile........

February 15, 2003 ......Please welcome a valued guest entry in the Fibro-log.

"Let me introduce myself. My name is Nancy. Bill and I have been married for 33 years. Now, some people get the impression that living with someone with Fibromyalgia is a piece of cake. They think this way because they ignore the family member and just take it for granted that they are making it up to get attention. Well, take it from me, they are wrong.

Some people just don't understand how two people survive this long together with the medical problems that they both have. But when two people love and understand each other it becomes much easier.

Bill and I have been through a lot over the years. There is just no way to describe how he strives each day to go to work and do what needs to be done to provide for his family.

Last year when he was home from work on short term disability because of his Fibromyalgia illness coupled with knee surgery because of a flare up of osteomyelitis it drove him crazy. He is used to working each day to support his family and not feel like a failure. He has told me repeatedly that he needs to go back to work because with only me working at the time it wasn't right. Well, he worked and supported me while I was going through my cancer surgeries (I worked in between) but I feel that if one person is unable to work because of whatever illness is involved then it is up to the other person to do what is necessary to make ends meet. This is what we have done over the years.

Fibromyalgia is not a treatable illness with one dose of medication. In fact, the medical profession can't even figure out or agree on what are the best medications to prescribe to make it easier to survive the day.

As a result, Bill is on different medications because the doctors can only treat the symptoms. Bill has also gone through so many tests and doctors that at one point he had said that "that was enough." One or two doctors thought he was crazy and one doctor even out right told him that it was all in his head. Believe me, it wasn't and isn't. Nor is anyone else who has this condition known as fibromyalgia.

Everyone looks at you like you should be working like crazy and feeling great because you look normal but your body tells you otherwise.

Anyway, I guess I just need to impress upon everyone that no matter how much a person who has Fibromyalgia tries to survive each day, all family members need to realize that this is a REAL illness and everyone needs to be very supportive and understanding.

And, I want to thank everyone who sends us email and support and for all who contribute to and participate on the "Managing My Fibromyalgia" message board. May God bless you all!"

I would like to take a moment and thank my wife Nancy for taking some time to put her thoughts on paper and share with everyone via the "Fibro-log"....
Thanks Nancy,
Bill.

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