Hey everyone.
After 8 years fighting this thing, I'm more and more starting to understand how my body works, and how this condition affects me.
I had something of a revelation today. (though Im sure its been discussed before) Anyway....
__________
(brief background)
My health has been around say 70% across the board this year (energy/concentration/mood etc)
So a pretty good year for me. One of the best in 8 years. Then about a month ago following a long intensive period of study, I had a relapse of symptoms, and Ive been running on around 40% since then.
__________
Today I sat in the garden with my friend, getting about 1 hour of moderate afternoon sunshine. My skin didn't burn, but I got a slight bit of "healthy color". I thought I had gotten away with it, until about one hour later when I came up with a rash and tiny blisters on my arms and chest.
Not only that, but an overall exasperation of symptoms:
Weakness
Feeling of being poisoned (I can almost taste and smell chemicals)
Increased bowel activity
Anxiety, "twitchyness", mild confusion
Mild Headache
Shivers/claminess
I'm convinced the reaction to the sun is an allergic one, similar to Polymorphous Light Eruption (PMLE). I'm sure it is directly a result of my ME/CFS.
I never had a problem with the sun before I got this wretched condition. During a "good patch", I can still handle the sun, while I cannot handle the sun during a bad patch.
It seems the immune system is primed, and trigger happy. Like all allergic rashes, the itchy blisters on my skin are not caused directly by the sun, but by my jumpy immune response.
We PWMEs are hypersensitive in every physical sense of the word, and to varying degrees from patient to patient, and during different phases of our health/illness/recovery.
___________
What interests me most is all of the other symptoms that accompanied the rash. I have had all of these symptoms before, without any rash. Could they be the symptoms of a "switched on" immune system. I believe they are.
Not only that, but I think the anxiety and twitchyness is also a direct result of the immune response. In other words, the physical body causing symptoms in the nervous system and "mind". Nobody should ever doubt the power of hormones, enzymes (and other products of the immune system) on the nervous system and the mind.
I have always maintained that any psychological problems (I've had some very mild problems) such as anxiety/twitchyness/mild depression, were caused by my ME/CFS, and not the other way around.
I always put it down to a sort of long-term byproduct of being ill, which could affect cancer or AIDs patients just as easily, but now I see it as a short-term problem, caused by the immune system itself effectively "drugging" the patient/bloodstream when it goes into overdrive.
______________
To sum up, I now see all of my ME/CFS symptoms as a set of powerful allergic reactions caused by a hyperactive immune system.
I hope that more ME/CFS research in the future will look at the effects of immune response on the nervous system, as well as similarities between ME/CFS and autoimmune disorders such as Autoimmune Liver Disease and Coeliac Disease.
_________
Incidentally, whether or not it was initially caused by a virus, or if indeed I have a persistent virus, I feel that my genetics have something to do with my condition. I was plagued with Eczema until I was a teenager. My mother has Coeliac Disease, and later developed Autoimmune Hepatitis. My niece has Autoimmune Kidney Disease.
After 8 years fighting this thing, I'm more and more starting to understand how my body works, and how this condition affects me.
I had something of a revelation today. (though Im sure its been discussed before) Anyway....
__________
(brief background)
My health has been around say 70% across the board this year (energy/concentration/mood etc)
So a pretty good year for me. One of the best in 8 years. Then about a month ago following a long intensive period of study, I had a relapse of symptoms, and Ive been running on around 40% since then.
__________
Today I sat in the garden with my friend, getting about 1 hour of moderate afternoon sunshine. My skin didn't burn, but I got a slight bit of "healthy color". I thought I had gotten away with it, until about one hour later when I came up with a rash and tiny blisters on my arms and chest.
Not only that, but an overall exasperation of symptoms:
Weakness
Feeling of being poisoned (I can almost taste and smell chemicals)
Increased bowel activity
Anxiety, "twitchyness", mild confusion
Mild Headache
Shivers/claminess
I'm convinced the reaction to the sun is an allergic one, similar to Polymorphous Light Eruption (PMLE). I'm sure it is directly a result of my ME/CFS.
I never had a problem with the sun before I got this wretched condition. During a "good patch", I can still handle the sun, while I cannot handle the sun during a bad patch.
It seems the immune system is primed, and trigger happy. Like all allergic rashes, the itchy blisters on my skin are not caused directly by the sun, but by my jumpy immune response.
We PWMEs are hypersensitive in every physical sense of the word, and to varying degrees from patient to patient, and during different phases of our health/illness/recovery.
___________
What interests me most is all of the other symptoms that accompanied the rash. I have had all of these symptoms before, without any rash. Could they be the symptoms of a "switched on" immune system. I believe they are.
Not only that, but I think the anxiety and twitchyness is also a direct result of the immune response. In other words, the physical body causing symptoms in the nervous system and "mind". Nobody should ever doubt the power of hormones, enzymes (and other products of the immune system) on the nervous system and the mind.
I have always maintained that any psychological problems (I've had some very mild problems) such as anxiety/twitchyness/mild depression, were caused by my ME/CFS, and not the other way around.
I always put it down to a sort of long-term byproduct of being ill, which could affect cancer or AIDs patients just as easily, but now I see it as a short-term problem, caused by the immune system itself effectively "drugging" the patient/bloodstream when it goes into overdrive.
______________
To sum up, I now see all of my ME/CFS symptoms as a set of powerful allergic reactions caused by a hyperactive immune system.
I hope that more ME/CFS research in the future will look at the effects of immune response on the nervous system, as well as similarities between ME/CFS and autoimmune disorders such as Autoimmune Liver Disease and Coeliac Disease.
_________
Incidentally, whether or not it was initially caused by a virus, or if indeed I have a persistent virus, I feel that my genetics have something to do with my condition. I was plagued with Eczema until I was a teenager. My mother has Coeliac Disease, and later developed Autoimmune Hepatitis. My niece has Autoimmune Kidney Disease.