Meg’s Chronic Fatigue Syndrome (ME/CFS) Story
"I studied, and worked, but in my 20’s I noticed peculiar, nagging bouts of feeling tired after normal exertion."
I was born in the United States in 1952. My husband, who is Bermudian by birth, and I live in Bermuda. Many people confuse Bermuda with the Bahamas, but if you look at an atlas, you will see that Bermuda is 600 miles off the coast of North Carolina, and Bermuda has the most northern coral reef in the world. This is a tiny island (20 miles long and in certain areas less than one mile wide.) The island is just beautiful and tourism is flourishing. During cruise ship season from April through October, we see cruise ships in the harbor.
I have a sister two years older and a sister three years younger. All of us were born
premature. We all had the usual childhood diseases, but all three
of us somehow escaped mumps. Nothing unusual there. But I was the only one
who contracted scarlet fever, and I was so young at the time, I don’t have
any memory of this at all. My mother was sick a lot with stomach problems
and back problems, which would result in several failed back fusion
surgeries, that orthopedic doctors were quick to perform then. I can only
guess that perhaps she may have had FM then.When I was in elementary school I do recall bouts of sinus feeling like a sock was stuffed up my nose. This condition is called rhinitis, and can be allergic or non allergic. Dr. Baraniuk has been doing research on rhinitis and CFS. IBS was apparent by the time I was maybe around the age of ten or so, and there would be times of constipation, followed by sharp abdominal pain and diarrhea.
At 14 Mono hit me (neither of my siblings had any health problems that I
"IBS was apparent by the time I was maybe around the age of ten or so."
would experience) and I was diagnosed by my family doctor. I seemed to have the typical "recovery" pattern and I went back to school and everything seemed OK. But the summer before my senior year, I got hit with pneumonia, along with a soaring temperature, I landed at the hospital where I stayed for one week. The diagnosis was "viral pneumonia" and I wonder if that Mono had something to do with this.Today some scientists are again relooking at EBV, and CMV and their role in CFS. It hasn’t been either proved or disproved, while the current fashion is to declare that EBV or CMV don’t "cause" CFS. Dr. Huber from Tufts school of Medicine is doing research on EBV transactivating endogenous HERV-K18 as a risk factor in CFS. Some groups are suggesting that childhood vaccines are the vector for the mass introduction of these viruses, which reactivate and then the host can spread contagion to others when the virus reactivates.
"A full day at work left me totally wasted and I could hardly move along with upper back and neck pain. I went to my local GP, he informed me that I had "arthritis" and gave me ibuprofen. No help at all."
After the viral pneumonia, my family doctor sent me to a highly respected allergist in Boston, and I tested positive for numerous food and pollen type allergies as well as asthma. I started the desentisation weekly injection therapy. I don’t think that this cured my allergies at all. About age 20, I experienced migraine with aura, and I NEVER had this before. I would then experience this several times yearly and I just went on with my life. I studied, and worked, but in my 20’s I noticed peculiar, nagging bouts of feeling tired after normal exertion. On the several attempts to get any medical answers for this, I got none. In my 30’s. I passed 2 kidney stones, but have never done so since. IBS continued.
I dated my husband, whom I met on a trip here, and after several years we got married (almost 20 years now) and I moved to Bermuda. I work as a graphic designer and also do my own artwork. Then in January of 2005 CFS hit hard! Right after the holidays, I noticed that the gland in my left neck felt swollen and I could feel a lump the size of a pea and I did not feel well. I also had several bouts with vertigo and more and more disequllibrium. A full day at work left me totally wasted and I could hardly move along with upper back and neck pain. I went to my local GP, he informed me that I had "arthritis" and gave me ibuprofen. No help at all. I went back to him and with his dismissive attitude, this doctor gave me an antidepressant prescription (which I threw out after 5 days).
After a few months, I was lucky to find my current doctor, who has knowledge regarding CFS, FM, and MCS. I was very, very sick when I arrived at his office. I lost about 30 lbs.
"I had disequilibrium, both heat and cold intolerance, low grade fevers, exhaustion (especially on exertion with breathlessness and muscle pain), faintness when standing or getting up, nausea, visual problems, full blown IBS, numbness, muscle jerking ,heart arrythmia, insomnia, tinnitus pulsatile and buzzing, total comprehension disconnect."
(I hadn’t been so slim since Jr. High) . I had disequilibrium, both heat and cold intolerance, low grade fevers, exhaustion (especially on exertion with breathlessness and muscle pain), faintness when standing or getting up, nausea, visual problems, full blown IBS, numbness, muscle jerking ,heart arrythmia, insomnia, tinnitus pulsatile and buzzing, total comprehension disconnect. Very much push/crash. The only thing that alleviated these problems (still ongoing to various degrees to this day) is to lie down or recline. I was sent for an MRI (normal, although I would like to know if I had punctate lesions-that isn’t something a patient would find out unless the patient went to Dr. Cheney or some specialized CFS doctor), viral test- high CMV titers (even though this is not considered definitive, it did give me a clue), and eventually ear testing at an ENT (no inner ear disorders). In my opinion, the tests that are really important in assessing CFS are: RNase L fragmentation, MRS, and echocardiogram as well as some toxicology- (these important tests are absurdly called "overstudying" by certain self-interest groups).My doctor took me off from work and prescribed Neurontin and a mild sleeping aid. I thought that I would get over this quickly (LOL)! I knew nothing regarding this condition so I went to the web to find out info.
There are numerous websites with information on CFS. Quite a few PWC told of their progress with the numerous protocols, and they told of their experiences with whey protein and many others. Anybody who goes on the web will find numerous protocols (vitamin and mineral, colonics, etc.) and each person responds differently. I didn’t try the whey, but my doctor suggested vitamins and COQ 10. I was still sick after 6 months. I tried
"I tried to return to work but after a few months, I got severe bronchitis which magnified my other symptoms of CFS, and I crashed again. Off work again."
to return to work but after a few months, I got severe bronchitis which magnified my other symptoms of CFS, and I crashed again. Off work again.The major turning point in my education regarding this disease was the purchase of OSLER"S WEB. This book is a MUST for all CFS/ME! What a revelation- this is NOT a disease of middle aged women whiners. Hillary Johnson highlighted numerous examples of MEN (airline pilots, doctors, dentists, lawyers, etc…) who were devastated with this disease for long periods of time. It is my belief that the male/female ratio of people with CFS is more evenly split among the sexes than is reported. Dr. Bell’s Lyndonville children with CFS also refute this all women - CFS notion. Dr. Cheney and Peterson brought this disease to national attention but the CDC response was not worthy. Peggy Munson’s book STRICKEN, VOICES FROM THE HIDDEN EPIDEMIC OF CFS is another book that I do suggest for all to read. Dr. Byron Hyde’s CFS book is also excellent as well as Dr. Bell’s FACES OF CFS.
I was sick the whole fall of 2005 and winter 2006. My doctor suggested Tramacet for the pain, but it made me sick, so I just continued with the Neurontin. I tried to return to work in March 2006. My visual dysfunction and inability to focus, as well as exhaustion on
"I was devastated. My tears were not from depression, but from frustration of having a physiological dysfunction that medical science has no definitive answer for at this point."
exertion caused me to last only a few days on the job. I was devastated. My tears were not from depression, but from frustration of having a physiological dysfunction that medical science has no definitive answer for at this point. I put back some of the weight that I lost initially (since then I’ve gained about 20 lb. And I don’t want to go over that because it really adds up on my 5’3" frame and on my mother’s side my grandmother and great aunts were built like barrels). People at work commented how "healthy" I looked and it must have been a total puzzlement to them that I looked so good but that I could sustain so little. This is the hell of this disease.So, spring of 2006 turned to summer, I was back home and feeling totally defeated by this CFS and thinking that I would never recover, I never have felt totally well, and there are days or weeks when I may feel that I am headed in a period of feeling "better", but some days or weeks feeling worse. I would continue to see my doctor every two weeks, and I had done this for over one year. I do think I have some level of MCS because my husband sprayed an air freshener in the house one day and it just burned my sinus and made me cough. I do think that the olfactory system is a factor in CFS, FM & MCS.
In early August of this year 2006, I returned back to work for 1/2 days by my doctor again but this hasn’t been without problems. Some days I would come home and just collapse. Many days I doubted that I could maintain another 1/2 day at work. It has now been 8
"I’ve often said to myself (especially when I am lying down at night)- if I can just maintain another day, somehow this CFS will go away and I won’t have these problems and it will all magically disappear. BUT IT DOESN’T! "
weeks and I don’t know how I can sustain this much longer. I’ve often said to myself (especially when I am lying down at night)- if I can just maintain another day, somehow this CFS will go away and I won’t have these problems and it will all magically disappear. BUT IT DOESN’T! I love my profession and creativity, but just even trying to sustain minimal physical activity leaves me breathless and weak and feeling like I will pass out. The myalgic pain is quite bad.I think Dr. Lapp made a very wise statement about CFS- (this isn’t the exact quote but you will get the idea) – CFS- YOU CAN’T WISH, PRAY, OR MEDITATE IT AWAY! Dr. David Bell made the statement that in order to know anything about this disease, long term studies of CFS patients must be done.
In the early stages of 2005, I was in total denial, but after almost 2 years of a very tenacious disease, it makes me quite humble and full of the realization that in spite of the fact that we may want to be in total control of everything that happens in our lives, when illness hits us, acceptance of the disease and its limitations has to happen. This disease will cause you to "Hit the Wall" and if you hit hard enough you go down for a long time.
But I have a lot to be thankful for, especially for my husband, (and we can even laugh too) who has put up with my illness when a lot of others would be long gone. I am always hopeful, that in spite of the major complexities of this illness, that some research (I am following Dr. Cheney’s research closely) will open the door so that we can start to live our lives again.
Ed. - Meg sent this e-mail shortly after she completed her story
"I crashed badly right after I sent my story to you - have been off work and my employer has told me that I must go on forced retirement - I guess I will have to join all the rest of chronically ill CFS patients. After a year and a half, my employer (Bermuda government) does not want to deal with my health issues and sick time off anymore even though I was a superior employee. One thing I've learned is that it doesn't matter how good or dedicated your job performance - once you become a liability all support just sort of evaporates. I see my doctor next week to go over disability issues (I'm going to make sure that they don't totally screw me if I can help it).
This will be interesting because I'm not going up against U.S. SSDI, but I'm rather going up against the Bermuda government system which is a complete unknown. I think I will have quite a battle with this-but I'll drop you some updates with my battle. (sick people don't need any battles with anyone) (10/28/06)
Meg’s Story
.
I was born in the United States in 1952. My husband, who is Bermudian by birth, and I live in Bermuda. Many people confuse Bermuda with the Bahamas, but if you look at an atlas, you will see that Bermuda is 600 miles off the coast of North Carolina, and Bermuda has the most northern coral reef in the world. This is a tiny island (20 miles long and in certain areas less than one mile wide.) The island is just beautiful and tourism is flourishing. During cruise ship season from April through October, we see cruise ships in the harbor.
When I was in elementary school I do recall bouts of sinus feeling like a sock was stuffed up my nose. This condition is called rhinitis, and can be allergic or non allergic. Dr. Baraniuk has been doing research on rhinitis and CFS. IBS was apparent by the time I was maybe around the age of ten or so, and there would be times of constipation, followed by sharp abdominal pain and diarrhea.
At 14 Mono hit me (neither of my siblings had any health problems that I would experience) and I was diagnosed by my family doctor. I seemed to have the typical "recovery" pattern and I went back to school and everything seemed OK. But the summer before my senior year, I got hit with pneumonia, along with a soaring temperature, I landed at the hospital where I stayed for one week. The diagnosis was "viral pneumonia" and I wonder if that Mono had something to do with this. Today some scientists are again relooking at EBV, and CMV and their role in CFS. It hasn’t been either proved or disproved, while the current fashion is to declare that EBV or CMV don’t "cause" CFS. Dr. Huber from Tufts school of Medicine is doing research on EBV transactivating endogenous HERV-K18 as a risk factor in CFS. Some groups are suggesting that childhood vaccines are the vector for the mass introduction of these viruses, which reactivate and then the host can spread contagion to others when the virus reactivates.
After the viral pneumonia, my family doctor sent me to a highly respected allergist in Boston, and I tested positive for numerous food and pollen type allergies as well as asthma. I started the desentisation weekly injection therapy. I don’t think that this cured my allergies at all. About age 20, I experienced migraine with aura, and I NEVER had this before. I would then experience this several times yearly and I just went on with my life. I studied, and worked, but in my 20’s I noticed peculiar, nagging bouts of feeling tired after normal exertion. On the several attempts to get any medical answers for this, I got none. In my 30’s. I passed 2 kidney stones, but have never done so since. IBS continued.
I dated my husband, whom I met on a trip here, and after several years we got married (almost 20 years now) and I moved to Bermuda. I work as a graphic designer and also do my own artwork. Then in January of 2005 CFS hit hard! Right after the holidays, I noticed that the gland in my left neck felt swollen and I could feel a lump the size of a pea and I did not feel well. I also had several bouts with vertigo and more and more disequllibrium. A full day at work left me totally wasted and I could hardly move along with upper back and neck pain. I went to my local GP, he informed me that I had "arthritis" and gave me ibuprofen. No help at all. I went back to him and with his dismissive attitude, this doctor gave me an antidepressant prescription (which I threw out after 5 days).
After a few months, I was lucky to find my current doctor, who has knowledge regarding CFS, FM, and MCS. I was very, very sick when I arrived at his office. I lost about 30 lbs. (I hadn’t been so slim since Jr. High) . I had disequilibrium, both heat and cold intolerance, low grade fevers, exhaustion (especially on exertion with breathlessness and muscle pain), faintness when standing or getting up, nausea, visual problems, full blown IBS, numbness, muscle jerking ,heart arrythmia, insomnia, tinnitus pulsatile and buzzing, total comprehension disconnect. Very much push/crash. The only thing that alleviated these problems (still ongoing to various degrees to this day) is to lie down or recline. I was sent for an MRI (normal, although I would like to know if I had punctate lesions-that isn’t something a patient would find out unless the patient went to Dr. Cheney or some specialized CFS doctor), viral test- high CMV titers (even though this is not considered definitive, it did give me a clue), and eventually ear testing at an ENT (no inner ear disorders). In my opinion, the tests that are really important in assessing CFS are: RnaseL fragmentation, MRS, and echocardiogram as well as some toxicology- (these important tests are absurdly called "overstudying" by certain self-interest groups).
My doctor took me off from work and prescribed Neurontin and a mild sleeping aid. I thought that I would get over this quickly (LOL)! I knew nothing regarding this condition so I went to the web to find out info.
There are numerous websites with information on CFS. Quite a few PWC told of their progress with the numerous protocols, and they told of their experiences with whey protein and many others. Anybody who goes on the web will find numerous protocols (vitamin and mineral, colonics, etc.) and each person responds differently. I didn’t try the whey, but my doctor suggested vitamins and COQ 10. I was still sick after 6 months. I tried to return to work but after a few months, I got severe bronchitis which magnified my other symptoms of CFS, and I crashed again. Off work again.
The major turning point in my education regarding this disease was the purchase of OSLER"S WEB. This book is a MUST for all CFS/ME! What a revelation- this is NOT a disease of middle aged women whiners. Hillary Johnson highlighted numerous examples of MEN (airline pilots, doctors, dentists, lawyers, etc…) who were devastated with this disease for long periods of time. It is my belief that the male/female ratio of people with CFS is more evenly split among the sexes than is reported. Dr. Bell’s Lyndonville children with CFS also refute this all women - CFS notion. Dr. Cheney and Peterson brought this disease to national attention but the CDC response was not worthy. Peggy Munson’s book STRICKEN, VOICES FROM THE HIDDEN EPIDEMIC OF CFS is another book that I do suggest for all to read. Dr. Byron Hyde’s CFS book is also excellent as well as Dr. Bell’s FACES OF CFS.
I was sick the whole fall of 2005 and winter 2006. My doctor suggested Tramacet for the pain, but it made me sick, so I just continued with the Neurontin. I tried to return to work in March 2006. My visual dysfunction and inability to focus, as well as exhaustion on exertion caused me to last only a few days on the job. I was devastated. My tears were not from depression, but from frustration of having a physiological dysfunction that medical science has no definitive answer for at this point. I put back some of the weight that I lost initially (since then I’ve gained about 20 lb. And I don’t want to go over that because it really adds up on my 5’3" frame and on my mother’s side my grandmother and great aunts were built like barrels). People at work commented how "healthy" I looked and it must have been a total puzzlement to them that I looked so good but that I could sustain so little. This is the hell of this disease.
So, spring of 2006 turned to summer, I was back home and feeling totally defeated by this CFS and thinking that I would never recover, I never have felt totally well, and there are days or weeks when I may feel that I am headed in a period of feeling "better", but some days or weeks feeling worse. I would continue to see my doctor every two weeks, and I had done this for over one year. I do think I have some level of MCS because my husband sprayed an air freshener in the house one day and it just burned my sinus and made me cough. I do think that the olfactory system is a factor in CFS, FM & MCS.
In early August of this year 2006, I returned back to work for 1/2 days by my doctor again but this hasn’t been without problems. Some days I would come home and just collapse. Many days I doubted that I could maintain another 1/2 day at work. It has now been 8 weeks and I don’t know how I can sustain this much longer. I’ve often said to myself (especially when I am lying down at night)- if I can just maintain another day, somehow this CFS will go away and I won’t have these problems and it will all magically disappear. BUT IT DOESN’T! I love my profession and creativity, but just even trying to sustain minimal physical activity leaves me breathless and weak and feeling like I will pass out. The myalgic pain is quite bad.
I think Dr. Lapp made a very wise statement about CFS- (this isn’t the exact quote but you will get the idea) – CFS- YOU CAN’T WISH, PRAY, OR MEDITATE IT AWAY! Dr. David Bell made the statement that in order to know anything about this disease, long term studies of CFS patients must be done.
In the early stages of 2005, I was in total denial, but after almost 2 years of a very tenacious disease, it makes me quite humble and full of the realization that in spite of the fact that we may want to be in total control of everything that happens in our lives, when illness hits us, acceptance of the disease and its limitations has to happen. This disease will cause you to "Hit the Wall" and if you hit hard enough you go down for a long time.
But I have a lot to be thankful for, especially for my husband, (and we can even laugh too) who has put up with my illness when a lot of others would be long gone. I am always hopeful, that in spite of the major complexities of this illness, that some research (I am following Dr. Cheney’s research closely) will open the door so that we can start to live our lives again.
Ed. - Meg sent this e-mail shortly after she completed her story
"I crashed badly right after I sent my story to you-have been off work and my employer has told me that I must go on forced retirement-I guess I will have to join all the rest of chronically ill CFS patients. After a year and a half, my employer (Bermuda government) does not want to deal with my health issues and sick time off anymore even though I was a superior employee. One thing I've learned is that it doesn't matter how good or dedicated your job performance- once you become a liability all support just sort of evaporates. I see my doctor next week to go over disability issues (I'm going to make sure that they don't totally screw me if I can help it).
This will be interesting because I'm not going up against U.S. SSDI, but I'm rather going up against the Bermuda government system which is a complete unknown. I think I will have quite a battle with this-but I'll drop you some updates with my battle. (sick people don't need any battles with anyone) (10/28/06)