Fibro-log Entry September 2004 I had mix emotions as I anticipated speaking to my doctor about the results of my sleep study test. As expected the test re-confirmed that I do have the condition know as sleep apnea. Undoubtedly this disorder has been contributing to or enhancing my fibromyalgia symptoms for quite some time.

My doctor explained to me the my oxygen saturation level during my sleep at the time of my cessation of breathing was hitting the 83% figure. This is definitely not good for my body and physical condition.

The doctor could not tell me exactly the ramifications of the long term effects of these low oxygen saturation levels were or could have on my organs or bio-chemistry.

I had nothing to lose and everything to gain by once again attempting to find a mask for my CPAP machine, that I could use successfully, and not have so many problems with the fit as to discourage me once again from steady use of the CPAP. The doctor said he would definitely work with me and leave no stone unturned [I appreciated this attitude on the part of the doctor].

As luck would have it I ended up taking my script for my CPAP mask to the "Pat Grimes Medical Supply Company" in Fredericksburg, Virginia. There I was teamed up with Robert, who I found to be concerned, knowledgeable and patient. He took the necessary time to ask questions, listen and explain many aspects of the treatment with the CPAP. We tried several configurations and brands of masks until we found one that made the best fit, with the fewest problems of leakage, and the most comfortable to wear. He assured me I could call him at any time if I had any problems at all with my equipment and we would look into any adjustments or alternatives.

I can say that I left the Medical Supply Store filled with confidence that my problem of miss-fitting equipment and lack of responsive concerned medical supply professionals was behind me. I could now look forward to the benefits that the CPAP therapy should afford me.

I did feel a difference after my first several days on the CPAP. I felt some stamina return to my legs and a bit of pep to my steps. Unfortunately it was not near as much as I had anticipated or imagined. I have to keep telling myself it was too soon to pass judgment as to the results and I intend to continue with the CPAP treatment and reserve judgment. I will keep you up to date on progress.

I used to look forward to weekends...... Lately though the first day of the weekend is spent recuperating via cat naps and the like from the previous five days, naturally leaving me feeling cheated of my time with my family, etc. It never gets easier allaying my guilt feelings, even though circumstances are not as a result of the choices I have made. I guess this sounds familiar to many of you.

Until next post, keep the ol' chin up.

August 2004 Welcome to all our regular readers and guests to our Fibro-log.

As a refresher, this log is a mainly a monthly history of events and thoughts pertaining to my life as it revolves around living with the symptoms of fibromyalgia, and other similar chronic pain and fatigue illnesses. Included at times also are quips, comments and observations about family, friends and my life in general.

I have nothing new to report as to my sleep study and its findings as to the intensity of any sleep apnea. This test was done on August 7th, last Saturday night. The results are not generally available to the requesting physician from the sleep lab for about two [2] weeks time. One good thing that happened was that the mask that I used for the test was comfortable and did not cause any major problems or obstacles in using the CPAP machine. As per the lab technician, the lab will be recommending this particular mask and configuration to my doctor in their report. I will keep you informed about this matter on my next post.

I am mad....mad at myself for not doing with myself this time, what I have recommended many times to fellow sufferers.

Several weeks ago I had a flash of brilliance [at least I thought it was] about a subject to base my next [August 2004] Fibro-log post about. I had even mentioned to my wife about the revelation ,but not the details. She urged me in the middle of the night [for that was when I told her] to write it down so I would not forget it.

Well....you guessed right and I did not, write it down that is. As sure as shoot 'in I had lost the thought and it's details. I have spent the rest of the time until this very moment trying to revive the idea that had come to mind to absolutely no avail. The idea and thought I had at the time had seemed so strong and so clear that I thought there was no way I would let it slip my mind.

The next time I had better practice following my own suggestions and not forget the lessons I have learned living with chronic illness for may years.

"In the end, our lives are but the sum of our decisions. We are the directors of our fate by the decisions we make. We have the power to choose." Mr. Merokee © 2004.

I have been having a real hard time due to my increase in pain and fatigue [even with practicing mine and others many tips and recommendations] in finding the time and energy to keeping up my "regular" employment, my Web site and work on the behalf of my fellow fibromyalgia sufferers, and my other Web endeavors such as Merokee Dot Com. I intend to do the latter as long as I possibly can, but I must concern myself mostly with the first to "help put food on the table." My work on the Internet has been done out my love of the technical format and my concern for others, but has in no way put "food on the table." Quite the contrary, it is slowly becoming an increasing financial burden.

I hope and pray that all these concerns will work themselves out successfully and that we may continue on with our work, Lord willing. I will have to continue keeping the old chin up!

Fibro-log Entry July 2004Well, another Independence Day has come and gone, fireworks and all. Giving it some thought, I guess there are different types and degrees of independence.

Those of us, who suffer from illnesses such as fibromyalgia and other chronic diseases, generally suffer a loss of independence because of the symptoms we experience.

Ask the husband or wife who previously helped support the household financially, if they lost or gained independence once forced by their symptoms to stop working or to change their line of work and compensation to fit their new limitations.

Ask the student who now has trouble keeping up his or her studies and is considering delaying their higher education due to their symptoms, if he or she feels more or less independent.

Ask the homeowner who took pride in his or her property and landscape that now can barely muster the energy and stamina to spend a small amount of time outdoors and ends up depending on others, both hired, and volunteer, to help, if he or she feels more or less independent.

I guess you get the picture. Fibromyalgia and other similar chronic illnesses do diminish our independence and in doing so, negatively effect our other qualities of life.

Think of the qualities of confidence, economics and standard of living, friendship, of earning and receiving respect, of the ability to afford proper medical care, etc. and how they diminish along with our independence.

How independent are you this Independence Day as compared to previous Fourth of July Holidays? Think how you might answer the questioned based on your own personal fibromyalgia experience.

Well my friends, there is not too much new to report on from my neighborhood. I have an appointment to see a new doctor tomorrow afternoon after work. My wife, Nancy, has pushed me to make this appointment.

I have not been using my CPAP machine to control my sleep apnea for quite some time now. If you recall from my previous posts, after many trials and errors in trying to find the right combinations of mask and connecting apparatus, I literally gave up in frustration when it seemed hopeless to find an answer.

Dr. Pare who I am about to see has treated Stan from my office successfully for his sleep apnea and I am hoping that Dr. Pare will also come up with a configuration of the equipment that will be suitable for me to use. I will let you know how it went in an upcoming post on this Fibro-log.

There is no doubt in my mind based upon Nancy’s description of my sleep patterns and actions at night, that using a proper working CPAP and mask configuration will only help with my fatigue and tendencies to fall a sleep at the computer or while I am driving to and from work. [Not good, I know!]

I hope everyone will take advantage of our forum when possible. I am happy to see that Crazee8 is feeling better, and has resolved some hardware problems and is back participating on the forum as her time allows.

Please do not forget to pass along to me any ideas, suggestions or materials for the Web site. I may be the Webmaster, but I feel that the Web site itself belongs to all of us dealing with fibromyalgia and chronic pain and fatigue disorders.

Until the next post, keep the old chin up!

June 2004 I was doing research on line when I came across an article which appeared in the New Yorker magazine in November 2000. At that time, this article stirred up quite a bit of controversy and objections by many Fibromyalgia Organizations. I'm not sure, but some of the things I want to comment on this month may be controversial to some.

I remember how much relief I felt when a name was given to the syndrome of the symptoms I had to deal with all those many years....fibromyalgia.

The many years of self-doubt, internal debate, inner turmoil, and going over the possible explanations with the eye of common sense; wondering whether the chronic pain and fatigue I was suffering from was just a figment of my imagination or were real, finally could be put aside by having some professional recognition and a medical name.

I myself, as a long-term sufferer of what is termed fibromyalgia, and have often wondered how there could be no disease, when so many who suffer the symptoms are in so much pain.

That was then, and this is now. Is it possible that the medical profession, in some cases, is now also too quick to diagnose someone's reported symptoms as being fibromyalgia?

In the article written four [4] years ago by a Dr. Jerome Groopman for the New Yorker Magazine, he writes as summarized, "In 1990, the term "fibromyalgia" formally entered the medical lexicon. Now, ten years later, nearly six million Americans are said to be suffering from fibromyalgia-more than four times as many as will develop cancer this year, and six times as many as are living with HIV. Ninety per cent of the afflicted are women, and the majority is Caucasian." Yet virtually every aspect of this condition, down to its very name, is contested in the medical community.

There was no common agreement about fibromyalgia when the article was written. At best many medical professionals seem to agree to disagree, or remain out of the dispute altogether.

Yes, today, there is still the naysayer, like a Dr. Arthur Barsky and a Dr. Bohr, who contend that the bundle of fibromyalgia symptoms origin is in the mind and not in the peripheral nerves and areas of the human body and that, even honoring fibromyalgia symptoms with a medical label may be making people sicker than to cure them. Please note that these doctors did not say the symptoms are not real, but that their source is in dispute.

A most unlikely opponent of the fibromyalgia diagnosis is Dr. Frederick Wolfe, one of the very men who helped bring the term into being. Although, according to the aforementioned article in The New Yorker, Dr. Wolfe also said, "I do believe there are some people who hurt all over and have no psychiatric disorder."

The article goes on to imply that the amount of people receiving Social Security disability has increased from less than 25 percent to over 46 percent once the American College of Rheumatology criteria for fibromyalgia was introduced. It is felt that many lawyers and patients will latch on to fibromyalgia because it is a very convenient diagnosis for lawyers to use in arguing for disability, since it is essentially self-reported.

According to the article by Dr. Jerome Groopman in the aforementioned New Yorker publication, I quote, Wolfe says that it's not that people lie; it's simply that, in these cases, there is no objective measure of who is ill and who is not. Wolfe would be the first to acknowledge that the diagnostic criteria for fibromyalgia have not fulfilled their original purpose. How, then, should doctors respond to its spread? "If we underplay this," Wolfe reportedly said, "it will come down to a more minor level or disappear. We should diagnose it less. I think we should stop using the 'F' word with patients, since it doesn't help them get better. Wolfe paused. "Of course, not using the word does not mean that they will get better, either."

Physicians have largely defined fibromyalgia. Some studies have shifted the focus of patients' hopes away from the medical establishment. This can be liberating. "What was most gratifying for the patients was that some could find gratification from finding something for themselves that made them better. They do not have to be so dependent on doctors. This type of thinking has underlined the emergence and spread of self-help Web sites such as "Managing My Fibromyalgia" and others of similar theme.

Since the article by Dr, Jerome Groopman was written, there have been many rebuttals written to the apparent theme of his writing.

I firmly believe that my decision to publish this Web site came from a true desire in wanting to help others, who have suffered like me, also to help themselves through understanding and relating to one another's experiences that are shared.

I also have given some thought, with the eye of common sense, to the ideas of the naysayer. I do not understand how they can form their professional opinions about the source of FMS without having experienced themselves first hand the illness called fibromyalgia. How many people, expert or otherwise, do you know that have actually suffered from fibromyalgia symptoms for a length of time and have concluded a mind and body connection and cause? I do not recall many or any at all.

I am thankful that today, in 2004, the pendulum has swung to the increased legitimacy of the fibromyalgia diagnosis side. I just wonder how many times the pendulum will swing back and forth during the coming years of research?

Meanwhile on the home front for any of my readers who have been keeping up on my personal and family life...I have the following to report:

• My wife Nancy just completed her latest round of exams and consultations with all three of the different cancer specialist she sees at the Memorial Sloane Kettering Cancer Hospital in New York City. All went very well this trip and there is still no sign of the lung, pancreatic and colon cancers that she had her surgeries on. I do not know if I can ever be thankful enough for the good results that we have had thus far. From the despair of her original diagnosis to the joys of hope. What a ride!

• My daughter Rachel is doing well on her own again. She is happy with her job and has already received a promotion since she was recently hired. I am also grateful that she seems to have come to better terms in dealing with her Crone's Disease and pacing herself according to her available energy level and discomfort.

• My son Gregg and our daughter-in-law Krissy announced to Nancy and me a couple of weeks ago that she is pregnant again. Wow! It looks like my grandson Joey will have a new play partner soon. As they say, there is always room for one more. Ok!

• I continue being employed but there are more bad days than good days, so many so that I wonder how I am able to keep working at all. I am thankful my meds still work enough to make this possible.

Well, I guess that is all for this month. Do not forget to stop by the Managing My Fibromyalgia Forum, message board to read and participate in sharing experiences, both good and bad with others, as your words or testimony may be just the words that someone needs to hear at that moment.

In parting as usual, "Please keep the old chin up!"

Bill

May 2004 Hello everyone! I don't think I ever mentioned it before, but sometimes sitting down and writing these Fibro Log entries is not very easy. More often than not, fibro fog has a way to raise it's ugly head at the most inconvenient times. Just this past month I thought of a couple of good topics to hit upon, and lucky me, I did write them down so I would not forget. Unlucky me, I misplaced those pieces of paper, and have racked my brains out trying to find them. Oh well!

We continue to receive e-mail from our readers. We thank everyone who write to us sharing your experiences, thoughts, and recommendations. I am sorry if we occasionally miss getting back to some one but we try to answer any emails that require one. We are also thankful for donations that help maintain this site, both large and small, we appreciate them the all same.

Not too much has changed since my last post. I did go for my yearly physical. This is important to do for anyone with fibromyalgia. This way the physician can make sure something else serious has not popped up with our health condition up that can be masked by the symptoms of fibromyalgia. All the blood work and urine sample came back good. My blood pressure seems to under control, along with my cholesterol levels. I am overweight, but I did not need a doctor to tell me that. So we go on treating my fibromyalgia symptoms.

My little friend Dexter has hopefully found new friends and family. My brother-law Michael staid with us a couple of days toward the end of April, and took Dexter back to upstate New York with him to a shelter that thought they could find a good home for Dexter in a matter of days. I hope things have worked out as planned as I will probably not hear anymore about him. I still miss you Dex.

Spring has sprung. Once again I have tried, but found out that mowing my lawn, even with a riding mower, seems to take too much out me. Even though it can get costly, as long as I still working, I'll have to line up someone to helps us with the lawn maintenance again this year. I'm no "Forrest Gump", but I do miss being able to take care of the yard and lawn myself. One of the degradations one suffers with fibromyalgia, not being able to do things that you used to enjoy.

Well, I guess that's all for this post. Continue to try keeping those chins up.

April 2004 Sometime I can not believe how quickly time goes by. It seems to me like I just made my last posting, and the new one wasn't due until April, until I discovered this morning that my last post was for February and not March as I was thinking. I promise to lighten up a bit, as after reviewing my last two posts, I realized how dark they were. They were in fact therapeutic for me, but I realized how they may have not been too beneficial for our readers.

I finally was able to see my sister Cathy after our having not seen one another for several years due to both our medical conditions and other conflicts in schedules and commitments. As you may be aware from reading elsewhere on our web site, my sister Cathy is my only sibling, about four years younger then myself, who has also been diagnosed with fibromyalgia along with some other medical problems. When her husband Jim was released from his employment last year, she did go to work part time and then eventually fulltime so they that may have some sort of medical coverage other than the expensive Cobra coverage.

Sidebar Note: Cathy's oldest daughter, my niece Erin, married and with two children, has just recently also been diagnosed as having fibromyalgia. This adds fodder to my speculation of a sometimes genetic link to being predisposed to fibromyalgia type symptoms as I have discussed elsewhere on this Web site. Have any of you shared the same findings with your families and fibromyalgia?

My wife Nancy and I planned to fly down to see Cathy and her family on March 10th though March 14th. We decided to fly instead of driving the 825 miles one way subjecting me to the fatigue and pain I experience traveling long distance by car, but at the last minute I decided that we should drive and not fly. I wanted to challenge my beliefs that driving would be too hard on me physically and prove that I could face my fears and prove myself wrong. [ My recent discomfort about flying may have contributed to this decision also].

Well, I was successful, I made the round trip drive taking turns driving with my wife. Yes, I was in quite a lot of pain and discomfort, but I was able to do what I thought I could not. We also had an enjoyable visit with Cathy and her family, giving me the opportunity to see my niece Amy's twins and newborn for the first time.

Yes, the trip did take a toll on how I was feeling. I was grateful that I planned ahead and returned on Sunday with both Monday and Tuesday off from work, and returned to work on Wednesday, March 17th, 2004. I needed every bit of that spare time to recuperate from my travels, but I did successfully test and challenge my limits.

Before I returned to work on Wednesday, March 17, I went to visit Dr. "G" on Tuesday. It was time again to visit and review my medications that I am taking, The medications have been becoming less effective as time has gone on allowing me to be in more pain and experiencing more times of depression. After discussing some possible changes, one of which was having me going back on a Duragesic patch as I had in the past [I turned down this option and the doctor agreed with me after I reminded him that I stopped using this medication and method of delivery in the past after experiencing severe swelling in my lower limbs]. We both agreed to also refrain from using OxyContin due to its reputation. The end result was that the only change was to increase the MS Contin tablets that I take [along with the Percocet and amphetamine] from 60 mg to 90 mg. We also scheduled a complete physical on April 19th to make sure that all the medications have not had a negative effect on my biochemistry and make sure that nothing else is brewing that may be causing some of my symptoms. I think having a thorough exam and blood work on a regular basis is important for anyone suffering from fibromyalgia or any other chronic illness.

In summation, it is important to be aware of our abilities and limitations imposed on us by our chronic illness, and gain the best quality of life that we can. That being said, I feel that we must also test our preconceived limits and fears every so often to gain a better understanding of our true condition.

Elsewhere at home, my daughter Rachel has just moved out from us here to her new apartment in Northern Virginia closer to her employment at A.S.P.A [American Society of Pension Actuaries]. Her job falls into the area of event planning, and she seems to like her co-workers and environment. She has found a nice young lady of her own age nicknamed "Sam" to share the apartment with. As things worked out, Sam works in the same building as Rachel, but on a different floor for a different company.

Last but not least, I have to report that my good friend and companion "Dexter" is no longer with the family. It has left me severely heartbroken to see him go. As you know my cartoon mascot, "Dexter" was named after him. You may recall from previous reading, that Dexter, a Blue-Tick Beagle, came into the family as a pup adopted by my daughter, Rachel while in her last year of school at James Madison University. Before graduation and for the majority of the time since, Dexter has stayed with me, except for the one month he stayed in Seattle with Rachel, but returned to my care when the arrangements did not work out as planned among Rachel, her boyfriend Jonathan and Jonathan's dog.

Dexter has been in quarantine for the last week due to an out of character biting attack on Rachel. I have not had any luck yet finding a new home, but his instructor Rick has agreed to board him at his place, until we can find him a home. The alternative would be the ultimate sacrifice of being put to sleep. Due to the negative effects that fibromyalgia symptoms have on one's emotional state, this separation has been very hard on me, affecting nearly everything with my thinking and reasoning processes up to and including my decision making. I will miss you very much Dexter............... Sometimes it is so hard to keep that chin up!

February 2004 Greetings! How is everyone? Are you keeping the "Old Chins Up"?

Do any of you with fibromyalgia ever get depressed? Yes, I know, I cringe a bit when I hear that word, just like you probably do. I thank God that today there is less controversy about what is the cause and what is the symptom. For a long time the majority believed that fibromyalgia symptoms were a result of depression, and not that depression was one of the results of having fibromyalgia, as is today.

There is a relationship between the two, however, that relationship is not black and white. Variations in symptoms and intensity contribute to a gray area because of individual experience [personal fibromyalgia].

In the beginning of my illness there was the depression caused by the feeling of the unknown. I was feeling ill and no one could tell me why. All through the search for a cause and through various medical professionals, each with different specialties, all kept coming up with no concrete answers. Non-results like these could leave most anyone I can think of depressed and anxious.

Today, having some of the answers has begun to relieve the initial causes of depression and anxiety. Now we must deal with other triggers of depression that are common with most who suffer with fibromyalgia and all other chronic illnesses. There are the problems of loss of income, the loss of friendships, and loss of the ability to take part in activities and recreations we so much enjoyed before. With these limitations come our feelings of low self esteem, the anguish that is caused by the doubt of our friends and family about how we truly feel, and our natural worry about how our future will play out.

With all this, no one can be surprised that depression often rears it ugly head. We should not think about the stigma of depression; the ignorant view that depression is the cause of our problems and not caused as a results of our fibromyalgia symptoms. Am I wrong? Should we now treat the symptom of depression as we also attempt to treat the other symptoms of fibromyalgia such as pain, fatigue, poor muscle conditioning and stamina, improper sleep patterns, and certainly last but not least, fibro-fog and our lack of clear thinking? I certainly do, but yet I still resist, still concerned about hurtful feelings that surfaced when the topic of depression would arise. Does this sound familiar? Am I alone in this way of thinking? I am sure I will field many different answers to my questions.

Recently my onsets of depression are triggered by thoughts of loved ones and acquaintances that are no longer a part of this world. I start thinking about how our lives are like leafs from trees by a riverbank. The river represents the flow of time and life. As a leaf falls from the tree into the river it symbolizes our entry into this life and time. Our lives [leafs] meet other leafs, representing loved ones and acquaintances, each having entered the river at different times and places, upstream or downstream.

Leafs that rot and sink to the bottom or exit the confines of the river's waters for another reason, represent our life's end. Due to the "too numerous to count" river currents and flows we come in contact with new leafs [people] and loose sight of other leafs [friends and acquaintances] sometimes never to cross paths again before our journey's end. Life is indeed short; temporary and fragile at best. You may never know when and where will be the last time you see and be with someone in this life. How often have you had a friend or family member that you had not seen in years, when you received news of their passing , had realized that the time and place of your last meeting had now become the very last time and place?

Forgive me if I was a bit self indulging by sharing the above experience with you, but I felt I had to share it with someone.

As I have shared with you in the past, our personal finances have become very tight. Thank God that the home we purchased several years ago has appreciated considerably. Nancy and I just completed a new home loan, that by using the equity gained were able to put some of our higher interest rate debt into the home and lowering our overall monthly payout. Most of this debt occurred in an attempt to pay off Nancy's surgical and medicals bills from over the last several years for her three different major cancer surgeries and related treatments [You would not believe what the insurance did not pay and left us responsible for!], complete the financing of my daughter's college education at James Madison University, and my own loss of income due to the travail of fibromyalgia symptoms and my hospitalizations from reoccurring flare ups of osteomyelitis. Even with all of these financial problems I still feel blessed and for these reasons:

• My wife Nancy is alive and currently cancer free [there is no price tag on this].

• Rachel [my daughter] has finished her schooling and graduated from college.

• My osteomyelitis infection seems to under control. I can still work for my employer at a limited capacity. Even if the pay is a lot less than it was prior to my major fibromyalgia flare up several years ago, I still have the satisfaction of being gainfully employed and am able to contribute the household income.

I can not imagine what is must be like for those who suffer with major or chronic illness not having any health insurance. I have experienced how much a major or chronic illness has cost us financially as a family with having medical insurance. I sure hope that this country [the USA] I live in wakes up and begins to help people that end up in this financial debacle due to no cause of there own. There are more citizens in this situation than they will admit to. In my perspective, just one person is one person too many.

Remember that one of the best way to fight the "blues" is by helping others. That is what the Help is about in the title, "The Fibro Help Network". The satisfaction we can we receive in helping others can bring us the joy to counter-act the downside of having fibromyalgia.

There are different ways we can help:

• One-On-One by developing a relationship by mail, either by "e" or snail mail similar to a pen pal.

• Participating in the many fibromyalgia forums and message boards available on the Internet.

• Contributing ideas, data, information, recommendations and even financial support to Web sites like Managing My Fibromyalgia or other groups that are on or off the Web helping the silent majority of fibromyalgia sufferers.

• Recommending [whenever you have the opportunity] our Web site to others having to deal with fibromyalgia.

Well, thanks for checking in and allowing me the privilege of sharing these thoughts with you. Until next time, remember to keep your chins up!

January 2004 I hope that everyone has survived the holidays in decent order. I think I have, but I have become dreadfully behind in my work and my schedule as I see it, based on what I planned to have accomplished by this time concerning this Web site and other areas, and where I now find myself. I know this is not an uncommon experience for those with chronic illness, but it is exasperating none the less.

"Be careful what you wish for," goes the saying. Sometimes this nugget of wisdom becomes very true. I remember not too long ago that my wife Nancy and I were experiencing the "Empty Nest" syndrome.

I mentioned previously about the joys of having my son, his wife and our Grandson Joey coming to live with us until they could get on their feet financially again. Without giving you all the whys and wherefores, we were "blessed" once again when our daughter Rachel who was living and working in Seattle, Washington, also came home a couple of weeks before Christmas, for health and other personal reasons. She sold and shipped what she could, and packed the remainder in her car and drove cross country. It is her intention to stay with us awhile also, until she gets back on her feet physically and financially. Thankfully it did not take her long to find new employment.

It has been increasingly hard for me to focus on my work at hand, both as it relates to the Web and my employment at McCarthy Tire Service. This has come at a time when my medications are seeming to become less effective. I am already taking pretty strong medications so I don't know how this will finally end up. I will probably have to confer with my doctor within the next several weeks, if there is no improvement. The combinations of medicines I have been taking have worked so well for quite a long time, that I am definitely disappointed over the change in their efficacy.

It still troubles me how difficult it is for others to discern how I am feeling due to the lack of obvious visual symptoms that are inherent with fibromyalgia. I am only recently being treated at work by my superiors in such a way that I feel they understand somewhat what it means to have fibromyalgia. For the most part, since my return to work in my less stressful position after coming off of six months of sick leave a while back, I always sensed in most of my co-workers and superiors feelings towards me of quiet disbelief, resentment, and lack of compassion [not sympathy]. I am thankful of late that many more people have heard about fibromyalgia and know personally others with this disorder. Even with all this headway, there is still a considerable amount of ignorance in the general and professional public.

Have any of you stumbled across a successful way to facilitate people's understanding without appearing to be soliciting sympathy from others? If so please do not hesitate to share your methods with us and others. You can do so by posting your information on the Managing My Fibromyalgia Message Forum or contacting us by using the "Comments Form" at the bottom of this page.

Elsewhere on the "Managing My Fibromyalgia" Web site I have used and explained the meaning of the phrase, as I define it, "personal fibromyalgia". I am curious if any of our readers have heard any one use that terminology apart from this Web site? Fibromyalgia is somewhat unique in that it is very rare to find any two or more people with the exact same symptoms and magnitude of those symptoms. Due to this uniqueness there are many countless combinations of treatments that sufferers use with varying degrees of success to relieve these symptoms.

It is due to this picture of "personal fibromyalgia" that I personally do not get very excited or overly optimistic when someone proclaims that they have found a combination or certain protocol of treatment that has "cured" them or relieved their fibro-symptoms 100%. Do not misunderstand me. If that person has found a protocol that has helped them this much, I am extremely happy for them, and I understand their desire to share what they have found with others with similar needs. Having said that, I do wish that they would temper there claims and tone down the celebration, knowing that there will be many with a fibromyalgia diagnosis that will not experience the same or near same success. When this occurs, discouragement can lead to further frustration and chronic or stronger feelings of isolation. Be especially suspicious if the claimant appears to be marketing his or her solution with eyes on profit [not prophet]. I respect more, someone like Ms. Hillebrande, for sharing their protocol with a stated policy of free information and a non-profit desire and structure. I hope I have not made this too confusing. Am I on or off the mark on this topic? Please let me know what you think.

I apologize for any unanswered e-mails from January 11th through January 19th, 2004, as we have been experiencing server and cable problems effecting access to our provider. They promised to have the problem corrected by sometime during the day on the 19th. How frustrating.

In the mean time everyone, keep your chins up until next time.

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Please don't hesitate to contact us. We love hearing from our readers on most any subject. This site was developed with you in mind. Until my next entry, keep your chin up, and keep learning all you can about your fibromyalgia.....Bill.

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