Fibro Log 2002...The Beginning of My Monthly Posts
Welcome to the Page that Contains the First Postings to Our Unique Fibro Log!
"Life is hard by the yard.....by the inch it's a cinch."
December 2002 Hello again! As I mentioned in my last entry, I wanted to find out if anyone was familiar with or ever had a CPK [creatine phosphokinase] test? Early in my search for a name for how I was feeling, one of the blood tests that I was given several times, found that I had very high levels of CPK in my blood stream. What is CPK [creatine phosphokinase] and what is its relationship, if any, to fibromyalgia? According to an article I read, "CPK", by David T. Moran, MD, the test measures the level of the enzyme creatine phosphokinase, or CPK, in the blood. CPK is an enzyme found in the heart, brain, and skeletal muscle. Who is a candidate for the test? When muscle tissue is damaged, CPK can leak into the bloodstream. The test is usually done to see if muscle has been damaged or a heart attack has occurred. How is the test performed? To measure the amount of CPK in the blood, a blood sample is taken from a vein on the forearm or hand. What is involved in preparation for the test? Normally, no preparation is required for this test. What do the test results mean? Normal levels of CPK in the blood range from about 35 to 190 units per liter. Abnormally high levels of CPK may indicate the following:
Alcoholism · brain trauma · convulsions or seizures · delirium tremens, or severe withdrawal from alcohol · dermatomyositis, a disease in which the immune system attacks the muscles and the skin · electric shock · heart attack · muscular dystrophy · polymyositis, a disease in which the immune system attacks the muscles · lung damage · severe muscle breakdown from prolonged or strenuous exercise.
My results, any time these tests have been done on me, have always shown abnormally high CPK readings, sometimes 3 or 4 times what was considered normal for the test. The levels were not in what was termed catastrophic levels such as seen in muscle dystrophy. The several times that I had muscle biopsies done along with EMG tests, results came back inconclusive as to pin pointing what was creating the high levels of CPK in my blood stream. Back in the 1980's, when I last had this test performed, the doctors at the time could only explain these findings as being my own unique normal readings. Although I still remained puzzled about these test results, I did eventually stop pursuing trying to find the reason for these abnormal readings. I still believe that the abnormal CPK test result readings, along with the fact that I was feeling so poorly with fatigue and aches and pains, were and are evidence of some abnormal process going on inside my physical body. Dr. Richard Kellerman, basically told me the same thing when he told me that even though they did not have answers for me then, that someday, in the future, as the result of further research in this area, that answers and causes would be found to explain all. I still wait patiently for that day to come. I am very curious if any of the readers of this Web site or anyone they know, may have had similar results to the CPK testing as I have had? I wonder how many of us who have been diagnosed as having fibromyalgia were tested for the level of creatine phosphokinase in their blood stream? I would love it if someday there was found to be a connection, then again, it may be just wishful thinking on my part. Well it looks like I've used up a sizable portion of Web real estate in discussing this matter. If anyone has had any experience with CPK blood test results please either make a post on our forum or send me a message using the "Comments Form" at the end on this page. All sent messages are kept confidential. Don't get discouraged. Exchange thoughts, ideas and encouragement with others with fibromyalgia. Until my next post, be as well as you can be. Keep your chin up!
November '02 First of all I'm sorry that I have skipped a month in my Fibro Log. I guess with those of you familiar with fibromyalgia and it's demand on your physical resources will understand. Those who do not fully understand yet but are making an attempt, please accept my humble apology. It was my intent to make entries on no less than a one per month schedule. Living in Virginia close to I95 between Washington D.C. and Richmond has led to an October my wife and I will never forget. It seemed that everyone in one way or the other was affected by the actions of the Beltway Sniper. Whether it was in the changing where we normally purchased the gas for our cars or where and how we parked in public areas or when, where and how we shopped, I don't know of anyone who was not affected. The incidents that occurred did not seem like just a news item, but became very personal. Our daughter Rachel called us from Seattle almost everyday with concern that we were okay and taking proper precautions. Seattle seemed so far away. After the snipers were arrested and the Tacoma Washington connection was made known, the distance between where we live in Virginia to Seattle Washington, did not seem as quite as far as it had previously. On Friday October 11th 2002, my wife Nancy had to attend a one day class for her place of work at the Howard Johnson's off I95 in Fredericksburg Virginia. All did not go well because, if you recall, that was the day the Beltway Sniper shot a 37 year old man. The gas station where this occurred was right next to the Howard Johnson's where Nancy was attending class. Of course she and everyone else in the area was caught up in the lock down while the authorities went looking for the then unknown perpetrators. This was too close to home. Through the month until today my fibromyalgia has had it's fair days and it's not as fair days. It seems that the medicinal combination of MS-Contin, Percocet for pain and time released Dexedrine stimulant is the best combination for now for the relief of my symptoms. I hope this will be able to give me relief for a decent period of time before my body gets too used to it, making it less effective. I still to this day, as I have for a long time, have times were I back off on the medication, thinking maybe the relief is just my imagination or that I'm getting less relief from the medication. I always regret the decision, because doing this, usually causes almost an immediate relapse of symptoms. Does anyone else fall into the same habit? Have any of you heard of a CPK enzyme and if so, do any of us have a common link with it? I plan to talk more about it on my next entry. Until then, keep your chin up and don't let those who downplay fibromyalgia get the best of you.
September '02 Did you hear about the crash in San Diego?...No, not a plane crash, nor a freeway crash, but the Crash of some one with fibromyalgia who was able to take some time off from work after being back to work for seven months straight! Months ago, my wife Nancy arranged to get some inexpensive round trip plane tickets to San Diego, California, so we could spend time with her dear cousins, Bob and Doris Ross. I was able to make special arrangements with my employer to take 2 weeks of vacation in a row. Two weeks in a row is normally taboo at my place of work, due to the nature of the business. Besides, I do not remember ever taking more than one weeks vacation at a time during my entire working life. As the September day approached for us to leave, I had become more and more concerned about how I was feeling, and more and more doubtful if I was up to physically handling the trip. My wife Nancy was being very understanding, but said she would take the trip without me if necessary. I only made my mind up about whether to go or not, only three days before departure. The American Airlines plane took off from Dulles Airport without a hitch. I would not be honest if I told you I was not nervous about the flight, especially since this was the first time I had flown since 9/11. The line at check-in was not as long as I had feared, and the security people were thorough but courteous. After take off and after trying to read a copy of PC Magazine I had purchased at the Walden Books store at the airport terminal, I found myself dozing off and feeling rather fatigued. We arrived in Saint Louis airport on schedule, and without problems or delay, we were on the next and final leg of the flight to San Diego. Once again I dozed off quite a bit, even more than I thought I had. The spells of sleep were able to warp my sense of time, and before I knew it, we were preparing to land in San Diego. I was contributing my tiredness and sleepiness to the normal Saturday feelings of relapse, that usually hits me after five straight days of work, even though I was taking my stimulant medication as prescribed. To make a long story short, from the time we arrived at Nancy's cousins at Saturday noon [Pacific Time] until maybe Monday morning, I just crashed. I could have slept most of Sunday if I had been allowed to. I did not realize how much my body needed to recoup to my fibro-normal, not from the last five working days, but from the last sevens months of working every week, only taking a couple of days off to take care of Nancy's medical needs. I guess I should have expected it to be this way............ I received a very short e-mail from a reader asking if I had ever tried coral calcium. No Joe, I have not. After doing some brief research on the Web I did find quite a bit of available sales information. If anyone out there has had any experience with coral calcium, please share it we us on the Managing-My-Fibromyalgia Forum or contact me by using the "Comments Form" at the bottom of this Web page. We would like to hear about it!
August 17, 2002 I'm sorry to have had let so much time pass between now and my last entry. When I started my log, I had intentions of making entries more often, maybe once a week. I have found that due to my trying to work my current regular job, and my bouts with "fibro fog", have made that nearly impossible and too demanding due to the limitations of my stamina. I have stuck with the MS Contin and Percocet regiment as previously discussed. Dr. G has given me a different fluid medication that seems to work well when I need to take them [without the bad side effects that I was getting from the diuretics that he had me previously try]. Important! Don't ever hesitate to keep the communications going with your physician in the matter of medicines. There are often many different types of medicine that treat the same symptoms. Sometimes it's just a matter of finding the best combination [through trial and error] that works with you. The only thing new in my condition that I have been experiencing a lot more frequently and with greater intensity lately are hot spells and bouts of profuse sweating. This occurs at no special time, even when the climate is cool and air conditioned around me. My wife jokingly tells me I must be going through my changes. [Ha-Ha!] Do any of you have such symptoms [apart from the natural life cycle ones]? If anyone is interested, my wife Nancy has been away for several days and should return late Sunday. She had to go to New York to Sloane-Kettering for tests and see her specialist. Good News! There is still no signs of cancer, and she is still considered cancer free. It's only natural, but I am always on edge when she goes for her checkups, until I hear the results. My daughter, Rachel has made the move to and taken a position in Seattle, Washington, as an Marketing Assistant The 5th Avenue Theatre . Getting through the emotions of the last child that was in the home leaving the nest, then moving so far away is a whole other subject that could fill a new Web site.
July 20, 2002 I came across this article in the most recent issue of Fibromyalgia Frontiers©2002 [Volume 10, Number 2] and it really struck home. I contacted the National Fibromyalgia Partnership, Inc. and received their permission to put a copy of the article on our Web site. Fibromyalgia: A Man's Perspective A new study performed by researchers from a Swedish hospital of rheumatology offers new insights on how men experience fibromyalgia. Fourteen men who were either married or living with a female partner were encouraged to tell their FM story. Clarifications were elicited as needed. Transcripts of the 14 interviews were reviewed extensively by the researchers, and a structural analysis performed which divided the interviews into meaningful units. Three themes and seven sub-themes were identified and are summarized below: Experiencing the Body as an Obstruction Living with a reluctant body: As a group, the men tended to feel that their body was sluggish as well as constantly achy, painful, and/or stiff. Of great concern was that they were no longer able to participate in the same level of activities as they had before, and they reported feeling restless and anxious. Most of the sample, who were unable to work full-time (if at all), felt especially anxious about finances. One man stated, "Sometimes I think about working full-time, but hell, it's not possible". Living day by day with a body in pain: The unpredictability of FM was a great frustration as it made the planning of daily life nearly impossible. Respondents reported that they now lived life one day at a time and sometimes minute-by-minute. During periods of severe pain, the men indicated that even the simplest tasks were difficult, and as a result they tended to avoid social contact--even if it was just answering the telephone or the door. Being a Different Man Not being the same man as before: The men had typically been very active before getting ill and had often been viewed by their peers as "cheerful and kind". After developing FM, however, they reported feeling "emptiness and shyness". Illness-related changes that caused them particular sadness were: difficulties concentrating on even the simplest tasks, meaningless (insulting) tasks that were given to those able to return to work, and difficulty controlling their temper during times of increased pain. Although the men were bothered early on by what other people thought of them and their situation, by the time of the interview they were much less concerned about others' demands on them. Not being really understood: Although the men acknowledged that their friends and family members believed that they were experiencing pain, they felt that this was not the same thing as understanding what they were going through. What gave them particular grief, however, was knowing that their young children could not understand their illness and the reason why they could not play rough or noisy games with them. Striving to Endure Living as normally as possible: While the men felt it was important to maintain social contact with friends and relatives when symptoms weren't too severe, they were reluctant to allow others to see them ill and worried that they might be called "whiners". Stoic fathers or grandfathers who had "cheerfully" undergone suffering during their lives were often role models for the respondents. The men reported that they typically accompanied their families on holiday outings/trips, even when they knew it would be "torture" for them. Searching for alleviation: The men felt they would be more cheerful and productive if only they could decrease their level of pain. They also felt that when pain was at its worst, they needed to be alone. Those who had been granted a disability pension described "feelings of finally gaining mental peace". Having to nurture hope: While the men as a group were pessimistic about any chance of a life without pain, they did admit that they hoped their pain would not worsen. They spoke of the "necessity of never losing courage". Meaning of Men's Lived Experiences of Living with Pain of Fibromyalgia Type, by Margareta Paulson, Ella Danielson, and Siv (Source: Struggling for a Tolerable Existence: The Soderberg, Qualitative Health Research, Vol. 12, No. 2, February 2002, 238-249.) I hope everyone [especially the men sufferers] found this article as interesting and informative as I did. Nothing new on the piriformis syndrome. Both Dr. Lotfi and my family physician were of the opinion that Piriformis Syndrome was only a possibility and did not seem to excited about my obtaining positive results if I were to have the injection treatment. Right now I have that on the back burner. After having been getting less relief from the Percocet over time, Dr. "G", my family doctor is giving me a trial Rx of Ms Contin. So far it has done a great job of pain control, but since taking the MS Contin, I have been experiencing major swelling in my left foot. I have been trying different things including prescribed fluid pills to get a handle on the swelling and to determine if the new medication is causing the problem. As of this writing we haven't come to a conclusion yet. It is upsetting to think of the possibility that after having found a medication that really gives me decent pain relief, that same medicine may be causing other side effects that may prevent me from using it. Oh, the irony! I'll let you know what happens when I do my next entry.
"Life is like a game of tennis; the one who serves seldom loses."
June 16, 2002 As I am writing this entry I have made it through another fibro-challenge which I will explain in just a moment. As noted in my last entry, I was concerned about how the long weekend and travel would effect my condition and my abilities when I returned to work that following Monday. Well, good news and bad news. The good news was that I did return to work that Monday, although it was a challenge. The bad news came about by the following weekend. I felt so extremely poorly, so poorly in fact that if I had not experienced spells like this in the past, that I might have felt that I only had a couple of days left on this good earth and my search for a fibromyalgia doctor would be over. Well, I was able to get through it only to face the new challenge of traveling to Long Island to attend my son Gregg's and his fiancé Krissy's wedding on the evening of Friday May 31, 2002. I am thankful my wife Nancy was up to doing the driving for the entire trip. Saturday night we also had to attend a combined Graduation Party for my daughter Rachel and Birthday Party for my Mother-In-law Bea. How was I able to do it you might ask. Well, Friday night I was able to crash a while after the ceremony [It was just a small wedding ceremony held in the restaurant the Maine Maid Inn where Krissy and Gregg are working with only a few people in attendance. The party Saturday night was held at the same restaurant but was a much larger gathering of friends and family. At this gathering I ended up crashing before dessert was served and ended up outside, sleeping in the car. Most of the people there are aware of my condition and long term battle. They are aware of my inability to fight off the fatigue at times and my need to give into getting my rest. I am sure there are some who are aware of my situation and still do not understand my need to crash. Some try to understand, and others make no attempt. I used to be concerned about what other people may think if I excused myself from gatherings like this to sleep or rest. I have long stopped worrying about it. I know my body best, how it feels, and what is necessary to do to attempt to maintain some sort of quality of life. If anyone objects to my behavior in these situations, too bad! It is their problem, not mine! I came across on the Web a description of a medical syndrome that very much describes the debilitating, gnawing, aching pain from my right hip to my right heel. After doing some tests the Neurologist ruled out sciatica causing the pain. Piriformis syndrome involves the sciatic nerve but the symptoms are caused by the way the sciatic nerve in some people is routed near the piriformis muscle in one's buttocks and the muscle then interferes with the sciatic nerve. I have conferred with Dr. Paymaun Lotfi, the orthopedic surgeon who recently successfully treated my flare-up of osteomyelitis, about the possibility of piriformis causing the pain in my right leg. I have all the symptoms except two. I do not experience any tingling or numbness in this area, although I do have rare times of a feeling of spreading warmth and pain relief in the leg. Dr. Lotfi thinks that piriformis is only a possibility. He said it could be arranged to have a shot in that area but can not guarantee any results. I seems that Piriformis Syndrome is fairly hard to successfully diagnose. I guess I'll have to give it further thought about going through with a shot in the buttocks. I do have an appointment with my family doctor on Monday, so I will try to get his input on this subject. Well, that's all for now. Keep you heads up, fight the good battle, until the next entry. Bill.
May 5, 2002 My visit to the pain clinic has come and gone. The results were disappointing but I did have the privilege of meeting an honest and compassionate doctor. After reviewing my case and giving me a short physical exam, the doctor was honest with me and told me that he did not think that he or the clinic could do anything more for pain control than what my family physician was doing already. He continued to explain that they see cases like mine from time to time, but due to the lack of medical understanding about the causes and effects, there are no specific protocols to treat the pain of fibromyalgia. I was grateful that the Clinic, not having a specific protocol, did not put me on a treadmill of trial and error pain management. My search for fibromyalgia doctors was put on hold. Nancy and I are attending our daughter Rachel's college graduation this weekend. Wanting to feel as best I could I decided to apply one of the last remaining Duragesic pain patches I had left in my possession. In the past I had great pain relief from these patches, changing them every three or four days. They were expensive [I would not have been able to pay for them had I not had Rx insurance at that time] but worked well for ongoing pain relief. That is, until I started to have some side effects develop that eventually became more of a problem then the pain they were treating. I began retaining excess fluid and the edema [swelling] in my lower extremities became extreme and painful making it hard to walk and move around, even with taking anti-fluid retention medications. I also experienced dry mouth and my tongue became extremely painful. I was able to lessen the side effects by only using the patches I had remaining for short periods of relief, and not wearing the patch unless I had a week or so break from them. I wish there was something as effective on pain without the side effects and that was more economically available. I believe I have already discussed this question with my family physician, but in case not I'll try to remember to bring the subject up on my next visit to him. As I write this were are getting ready to leave Harrisonburg Virginia to return to our home in Stafford. My daughter's graduation went well, although the weather did not co-operate fully, the afternoon becoming rainy and chilly. We retired early to the Massanutten Resort where our daughter had booked us a Condo for the weekend at a very reasonable rate [she worked for the resort part time during some of her time at JMU]. The accommodations were very comfortable and the area quite beautiful. I would not mind returning sometime [time and economics permitting] to spend more time at this Four Season Resort and investigate what else it has to offer. Well, it's back to work tomorrow. I hope the recent flare-up of fatigue and pain subsides so it does not interfere with my attempt to keep myself gainfully employed.
April 30, 2002 The search continues for a Fibromyalgia Doctor. I have a 2PM appointment tomorrow, Wednesday, May 1st, 2002 with a Pain Management Clinic Doctor. I had toyed many times about seeking out such a clinic, but either due to skepticism, concern about the expense, or fear of getting on another treadmill, I never actually committed myself to go. As mentioned previously, our family physician has been a big help in my pain control, but due to the type of medication I've been on, and the length of time I've been on pain medication, I think he is relieved that I am going to consult with the Pain Clinic in Fredericksburg, Virginia. It was for the same reason that about a year ago the family doctor recommended that I be examined by a neurologist again to see if he could find anything that maybe aggravating the fibromyalgia symptoms. Seeing the neurologist was preceded by symptoms of falling asleep at the wheel while driving to and from work. Also the fibromyalgia symptoms of extreme fatigue, chronic pain, and fibro-fog were more acute than normal at that time. Needless to say nothing major developed other than a diagnosis of mild sleep apnea, which I did follow-up with a respiration specialist and was fitted with a CPAP machine which I used at night. Although I did get some small relief, the results were less than spectacular. About the end of June I was in such bad condition I was not able to go to work and spent the next five or six months on sick leave. During that time I also had after a 39 year interval a re-occurrence of an osteomyelitis infection in my right leg. After two surgeries and intravenous antibiotic therapy, I was disappointed that when the infection was finally eradicated that the loss of the infection did not make any major improvement in my fibromyalgia symptoms. If by some chance you were wondering, my many years of marriage to my wonderful wife Nancy, have not always revolved around my health and how I am feeling. Nancy has had her own crosses to bare. In the early to mid 70's after the birth of our son Gregg it was discovered that Nancy was suffering from a lower digestive tract disorder known as familial polyposis. As a result of this disorder she eventually ended up with colon cancer and was also discovered to have pancreatic cancer at the same time. She had to endure four major surgeries and rounds of chemo and radiation therapy for the past couple of years. Thankfully after all she has been through she has been declared cancer free. I will be eternally grateful [also monetarily in debt without complaint] to the doctors and staff of Memorial Sloan-Kettering Cancer Hospital in New York City. Due to their skills and great personal care Nancy has a new lease on life and a valuable story of hope for those who may receive the dreaded cancer diagnosis. Before I close this entry, I want to describe something that happened to me this morning. Something that I have experienced previously, but not too very often. The days preceding had been very hard with acute symptoms. I did go to bed a bit earlier than my normal early to try to get some extra rest. When I awoke this morning I was feeling extremely poorly. I quickly walked the dog and then took my shower. About a half hour later I started to feel much better. Just before leaving for work I started to feel great. No pain, bounce in my step. I felt like running. It was almost euphoric. This great state of well being did not last more than an hour before the FMS symptoms did a return and became more acute during the day. It was great while it lasted. Why this happens sometimes no one seems to know. I wish I could put it in a jar so I could open up that great feeling anytime I wanted it. Have any of you had similar experiences with sudden awareness of good feelings and loss of symptoms only to last for a short period of time before reverting back to the same old FMS?
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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