Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
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I am new to this board. I wanted to post here because of the possibility my recent experience may help others. In a nutshell there is a potential causal (or at least enabling) link between chronic sinusitis and chronic fatigue for some persons, and surgery may significantly reduce the symptoms experienced in some cases. My story is one of many years of frustration seeking help, but finally getting it from sinus surgery one month ago.
I have had an undiagnosed and rare syndrome since 1973. I had some of the symptoms of chronic fatigue, but only experienced them episodically, being healthy otherwise. I experienced nearly 100 of these episodes. The symptoms were extreme fatigue, weakness, and sleepiness but no physical pain. For 25 years every episode was the same - over in about a week. Then in 1998 things suddenly changed and the episodes became gradually longer - seemingly trending to the point that I would be chronically fatigued. At that time I did a lot of work with many medical specialties which ended up with nothing but my own decision to try using steroids to interdict the episodes - based on what I now know is an incorrect hypothesis that there was an autoimmune cause. Despite this error, the steroids worked, and for six years I was able to exercise some control over the length of the episodes. Then a year ago, the steroids stopped working effectively. After the last episode began last November, it looked like I might have finally transitioned from episodically to chronically fatigued.
Something happened shortly after that last episode began that prompted me to research a possible connection between my syndrome and the fact that I've consistently had sinus symptoms during my episodes. this was despite the fact that I had explored that connection in 1999, had both an MRI and CT scan of my sinuses and was told by an ENT that there was no connection between the sinusitis confirmed by the scans and the fatigue.
What I found was a very small but potentially significant amount of information generated in the last few years, mostly from Georgetown University Hospital. First there was a study that found that there was a statistically sifnificant relationship between persons with chronic sinusitis and chronic fatigue (i.e. the percentage of chronic fatigue sufferers who had sinusitis is greater than the general population). There was another study that showed another statisitically significant reduction in chronic fatigue symptoms following functional endoscopic sinus surgery. The body of clinical information is still quite limited, but is based on rational, and for that matter uncomplicated, reasoning. The accumulated scar tissue in the sinuses can potentially be an inflammation trigger if it harbors infection.
I was really taken when I first read this because in my case for the first 25 years all my episodes were triggered by some common upper respiratory problems - cold or flu. But the cold/flu symptoms would vanish as soon as the fatigue started. Then a year ago I was advised that instead of an autoimmune response, the impact of the steroids I had been taking was anti-inflammatory instead. So I now had a tie-in between two pieces of information, both dealing with inflammation, as well as a recent finding that the sinuses could be the site where the inflammation might be occuring.
So I scheduled a visit with an ENT where I now live, had a new CT scan that confirmed the sinusitis and then had surgery done a month ago. The surgeon of course could not promise anything regarding fatigue symptoms - the surgery was warranted because I had enough independent sinus and breathing problems. Nine days post-op - about 4 days after I began the constant nasal irrigation to flush the surgical residue and packing that's part of the routine - I suddenly recognized that I felt slightly but noticeably stronger. Since that day my stamina has gradually increased as I continued to cleanse the sinuses with the irrigation. I'm not back to normal yet but I'm now way past the housebound stage. I'm able to do just about type of activity I want to as long as keep the activity in moderation and get rest periodically.
My story of course won't be typical - the sum of my symptoms was very unusual, but it may be similar enough to some other stories to help. I had kept a journal for years and had noted the sinus involvement many times, but never thought of it beyond another symptom, not a potential cause. It's very clear the medical community has very little knowledge of this potential relationship. I have been an undiagnosed patient for well over 30 years, and this last attempt, like the others I took, were not the result of a recommendation by a medical professional. Were it not for the internet, I wouldn't be telling this last part of my story.
Finally, there is a mysterious way Providence works. There were a lot of people praying for me recently. I'm humbled by the way things came together that prompted the actions I ended up taking.
Good luck and Godspeed.
I have had an undiagnosed and rare syndrome since 1973. I had some of the symptoms of chronic fatigue, but only experienced them episodically, being healthy otherwise. I experienced nearly 100 of these episodes. The symptoms were extreme fatigue, weakness, and sleepiness but no physical pain. For 25 years every episode was the same - over in about a week. Then in 1998 things suddenly changed and the episodes became gradually longer - seemingly trending to the point that I would be chronically fatigued. At that time I did a lot of work with many medical specialties which ended up with nothing but my own decision to try using steroids to interdict the episodes - based on what I now know is an incorrect hypothesis that there was an autoimmune cause. Despite this error, the steroids worked, and for six years I was able to exercise some control over the length of the episodes. Then a year ago, the steroids stopped working effectively. After the last episode began last November, it looked like I might have finally transitioned from episodically to chronically fatigued.
Something happened shortly after that last episode began that prompted me to research a possible connection between my syndrome and the fact that I've consistently had sinus symptoms during my episodes. this was despite the fact that I had explored that connection in 1999, had both an MRI and CT scan of my sinuses and was told by an ENT that there was no connection between the sinusitis confirmed by the scans and the fatigue.
What I found was a very small but potentially significant amount of information generated in the last few years, mostly from Georgetown University Hospital. First there was a study that found that there was a statistically sifnificant relationship between persons with chronic sinusitis and chronic fatigue (i.e. the percentage of chronic fatigue sufferers who had sinusitis is greater than the general population). There was another study that showed another statisitically significant reduction in chronic fatigue symptoms following functional endoscopic sinus surgery. The body of clinical information is still quite limited, but is based on rational, and for that matter uncomplicated, reasoning. The accumulated scar tissue in the sinuses can potentially be an inflammation trigger if it harbors infection.
I was really taken when I first read this because in my case for the first 25 years all my episodes were triggered by some common upper respiratory problems - cold or flu. But the cold/flu symptoms would vanish as soon as the fatigue started. Then a year ago I was advised that instead of an autoimmune response, the impact of the steroids I had been taking was anti-inflammatory instead. So I now had a tie-in between two pieces of information, both dealing with inflammation, as well as a recent finding that the sinuses could be the site where the inflammation might be occuring.
So I scheduled a visit with an ENT where I now live, had a new CT scan that confirmed the sinusitis and then had surgery done a month ago. The surgeon of course could not promise anything regarding fatigue symptoms - the surgery was warranted because I had enough independent sinus and breathing problems. Nine days post-op - about 4 days after I began the constant nasal irrigation to flush the surgical residue and packing that's part of the routine - I suddenly recognized that I felt slightly but noticeably stronger. Since that day my stamina has gradually increased as I continued to cleanse the sinuses with the irrigation. I'm not back to normal yet but I'm now way past the housebound stage. I'm able to do just about type of activity I want to as long as keep the activity in moderation and get rest periodically.
My story of course won't be typical - the sum of my symptoms was very unusual, but it may be similar enough to some other stories to help. I had kept a journal for years and had noted the sinus involvement many times, but never thought of it beyond another symptom, not a potential cause. It's very clear the medical community has very little knowledge of this potential relationship. I have been an undiagnosed patient for well over 30 years, and this last attempt, like the others I took, were not the result of a recommendation by a medical professional. Were it not for the internet, I wouldn't be telling this last part of my story.
Finally, there is a mysterious way Providence works. There were a lot of people praying for me recently. I'm humbled by the way things came together that prompted the actions I ended up taking.
Good luck and Godspeed.
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Sinus surgery is done for many different reasons of course. Mine was done to remove scar tissue mainly in the ethmoid sinus and particularly in the area of the osteomeatal complex - the site where other sinuses drain into the ethmoid. That was what was significant from the point of the surgeon since it was how the sinus problems I had would be corrected. From my point of view, that was significant, but secondary. I did want to have the sinus symptoms corrected, but mostly was hoping to have the fatigue symptoms impacted of course.
I don't want to unduly influence you to do nasal irrigation, although it probably wouldn't hurt anything. The significance of it in my case is that it's part of the post-op protocoal, and is necessary to eliminate the residue and biodegraded blood-soaked packing from the surgery.
Again it's only a supposition, but I associated the gradual elimination of this material with the improvement in my physical stamina post-op. All this is theory, but since the only way that I could visualize that the surgery could help in the first place was for there to be some amount of tissue that could cause the inflammatory response, the removal of that tissue could be associated with the easing of the inflammatory response.
Tripp