Hi all,
My first time posting and to begin with I must thank everyone on this site for selflessly providing such valuable information. It’s great to have a community with as much knowledge and experience as this to be able to interact with.
I will try to keep it short, and have bolded the main parts below, for those who don't need the backstory. I’m 25 male, diagnosed with “cfs” following EBV/Hepatitis/Splenomegaly. Original EBV diagnosis was 4 yrs ago. I recovered in 3 weeks but relapsed 2 months later, without a quick recovery this time. I couldn’t get out of bed for first 10 months and was diagnosed with “cfs”. I am still not back to working, but have progressed to managing short walks most days and spending 8 or so hours out of bed, broken up by periods of rest.
I usually only feel fatigue after exercise now, but have felt all along that ‘fatigue’ is not the most important symptom. It is a decrease in the severity of the symptoms, more than an increase in energy, that signals my improvement. Or, put another way, the less symptoms – the more energy.
I understand there are many ins and outs to the condition and much trial and error in treatments, so to start with I wish to keep it as simple as possible and seek advice for only one particular set of symptoms, which so far I have not found a clear way to treat.
The symptoms are numbness/tingling/throbbing/aching in the cheek, jaw, ear & side of neck area on both sides. I am sensitive to noise which can increase these symptoms, and when these symptoms are at their peak it can lead to fuzziness/fogginess in the head and inability to focus. When these symptoms are at their lowest I have no fuzziness/fogginess and have good brain function. The severity of these symptoms fluctuate each day, never disappear entirely, and are worse after exercise.
Things that may or may not be related here are my swollen glands, throat and tonsils. I’ve also read recently about the possibility of incorrect Vagus nerve function, which is in the same area. Whether those things are related or not is speculation, but at least it lets you know there area I am talking about here.
Does anyone have any advice into treatments/supplementation/drugs etc… that can help decrease these symptoms?
I have been eating what would generally be considered a very healthy diet. (Which of course, may not be quite as true for “cfs”, if only we knew…)
I have tried many different things already but there would be too many to list, so assume that I have tried nothing and feel free to mention anything that comes to mind.
My first time posting and to begin with I must thank everyone on this site for selflessly providing such valuable information. It’s great to have a community with as much knowledge and experience as this to be able to interact with.
I will try to keep it short, and have bolded the main parts below, for those who don't need the backstory. I’m 25 male, diagnosed with “cfs” following EBV/Hepatitis/Splenomegaly. Original EBV diagnosis was 4 yrs ago. I recovered in 3 weeks but relapsed 2 months later, without a quick recovery this time. I couldn’t get out of bed for first 10 months and was diagnosed with “cfs”. I am still not back to working, but have progressed to managing short walks most days and spending 8 or so hours out of bed, broken up by periods of rest.
I usually only feel fatigue after exercise now, but have felt all along that ‘fatigue’ is not the most important symptom. It is a decrease in the severity of the symptoms, more than an increase in energy, that signals my improvement. Or, put another way, the less symptoms – the more energy.
I understand there are many ins and outs to the condition and much trial and error in treatments, so to start with I wish to keep it as simple as possible and seek advice for only one particular set of symptoms, which so far I have not found a clear way to treat.
The symptoms are numbness/tingling/throbbing/aching in the cheek, jaw, ear & side of neck area on both sides. I am sensitive to noise which can increase these symptoms, and when these symptoms are at their peak it can lead to fuzziness/fogginess in the head and inability to focus. When these symptoms are at their lowest I have no fuzziness/fogginess and have good brain function. The severity of these symptoms fluctuate each day, never disappear entirely, and are worse after exercise.
Things that may or may not be related here are my swollen glands, throat and tonsils. I’ve also read recently about the possibility of incorrect Vagus nerve function, which is in the same area. Whether those things are related or not is speculation, but at least it lets you know there area I am talking about here.
Does anyone have any advice into treatments/supplementation/drugs etc… that can help decrease these symptoms?
I have been eating what would generally be considered a very healthy diet. (Which of course, may not be quite as true for “cfs”, if only we knew…)
I have tried many different things already but there would be too many to list, so assume that I have tried nothing and feel free to mention anything that comes to mind.
