I wish I had the time to write the whole story, sometime later maybe because it typifies NHS idiocy & indifference.
I want to ask you lot this simple question. 'Does the fatigue sometimes feel exactly like the effects of a narcotic drug - like those evil barbiturates handed out so freely years ago'.
A couple of weeks after I thought I recovered from a viral attack eighteen months ago I started having increasing pain in the area of my bladder. I also had huge aches and pains in just about every joint in my body. At first I thought that was just overdoing some demanding physical work, but then I realised it was ridiculous and couldn’t be the case.
So I thought I was getting a bladder infection. The Doctor did a urine test but it was negative for infection. That was when I noticed for the first time I had a painless lump either side of my groin.
My doctor told me I had chronic fatigue syndrome just out of the blue. He did not explain anything about what it was and was crudely and ridiculously dismissive when he announced I had a negative urine test but then when I said I was still obviously ill arbitrarily just said that I had CFS. I then told him about the two swollen lumps in my groin which I had only just noticed. He cursorarily dismissed those as being inguinal hernias, which didn't seem very likely to me.
All I knew about CFS then was it was an all in the mind, imaginary, psychosomatic illness so I told him that my illness did not feel imaginary at all. So he referred me to an ultrasound scan which said I had swollen lymph nodes NOT a hernia.
At some point I got a vicious, impossibly painful ear infection too, which I now realise was encouraged by a battered, weakened immune system.
At this point the GP apologised and did a Monospot blood test for Glandular fever. As it was now six months after the initial infection the Monospot blood test showed negative for glandular fever. I now know the Monospot test is useless & guaranteed to be negative six months after the onset of infection.
Unfortunately, this doctor appeared to me to be an ignorant prat who did not know this; so I asked to see a different doctor. Big mistake. I saw the head of the practice. He insists I could not possibly have had glandular fever as the monospot test was negative and that I definitely have CFS because I am complaining of long term viral type illness with dramatic fatigue & malaise and other symptoms like being drenched in sweat in bed (& other times) and extreme breathlessness in bed even after hours in bed not moving & obvious cognitive dysfunction etc etc.- I had all the glandular fever symptoms.
This weird GP organised more blood tests a couple of times which were expressly supposed to be the modern, sensible, up to date type and more reliable blood tests for glandular fever - the IgG & IgM antibody tests which give detailed and accurate information about glandular fever infection.
Except it eventually transpired these were never actually done at all and when I asked this idiot GP why, he said he wasn't allowed to ask for any old test he felt like (his words). I then researched this point with the NHS which confirmed what I already thought, that he was talking rubbish. I was gobsmacked that I had been deliberaterly misled. Why ? Search me ! Just another NHS idiot. They are very common these days, apparently.
He had also said a load of other rubbish which I do not have the time to write down, The whole story would take thousands of words.
Now I have a better understanding (thanks only to my research & not my GP ) of glandular fever and CFS I am inclined to agree I may well have CFS. But I was seeming to get better, having being completely incapacitated by it. But it keeps on seeming to relapse without rythm or reason. Sometimes a small amount of physical activity has no ill effect, other times it flattens me for days.
And today I had about six and a half hours sleep last night which counts as a far better than average amount but I just could not wake up......all bloody day. I felt completely coshed as though by barbiturates & there was also an uncomfortable feeling in my head, partly feeling like extreme de-hydration (which it wasn't as I have been guzzling fluids by the gallon. I have drunk NO alcohol at all for eleven days.
And, of course, it is really frustrating because I end up sitting at my desk trying to do the billions of things I want to do but actually end up doing absolutely nothing useful at all and would have been much better off lying in bed all day anyway instead. Arrrrrgh !!
BUT those swollen lumps in my groin have become increasingly very painful and in the past few days were at their worst. The pain they produce is now getting nasty and is often there even when I am lying in bed, occaisionally stabbing me with a savage viciousness out of the blue.
I cannot imagine hernias behaving like that and am concerned that I have been right all along and that I have had glandular fever which has morphed into lymphoma - which it can do. This would make these doctors into even bigger idiots that they have already demonstrated themselves to be.
P.S. - The big clue about me having actually caught glandular fever is that my eighteen year old son
had flu like symptoms with painful swollen inguinal lymph nodes too. I also had what I thought was a particularly vicous viral attack at the same time which I noticed wasn't very respiratory in nature and was odd & different from run of the milll viral attacks. I thought nothing much of it; I knew nothing about glandular fever and Chronic fatigue syndrome was just some weird psychosomatic all in the mind illness, according to anything I had ever heard about it - mostly from the media.
My son really, really bugs me by frequently helping himself to whatever glass of something I might be drinking, and swills mouthwash direct from the bottle we all share in the bathroom and also most certainly 'backwashes' the contents of his mouth into it. My idiot GP says you can't catch glandular fever by drinking from another person's glass. The first idiot GP crossly told me my son was nothing to do with any illness I might have and that I wouldn't be ill with something I might have caught from him. Still any doubts about these doctors being real idiots ?
Fortunately my son was only ill for a few weeks, Lucky him. But that is what glandular fever is like. The older you are the more likely an attack is to be be exceptionally vicous and more likely to have deadly effects, MS & Lymphoma for instance. Infants don't even notice they have glandular fever, nor do their parents.
My son was told by a completely different doctor he saw that he probably had glandular fever. That is when I first started to become aware of it, but didn't think it was a problem at that stage and at that time didn't think I had it.
Comments anyone ?
I want to ask you lot this simple question. 'Does the fatigue sometimes feel exactly like the effects of a narcotic drug - like those evil barbiturates handed out so freely years ago'.
A couple of weeks after I thought I recovered from a viral attack eighteen months ago I started having increasing pain in the area of my bladder. I also had huge aches and pains in just about every joint in my body. At first I thought that was just overdoing some demanding physical work, but then I realised it was ridiculous and couldn’t be the case.
So I thought I was getting a bladder infection. The Doctor did a urine test but it was negative for infection. That was when I noticed for the first time I had a painless lump either side of my groin.
My doctor told me I had chronic fatigue syndrome just out of the blue. He did not explain anything about what it was and was crudely and ridiculously dismissive when he announced I had a negative urine test but then when I said I was still obviously ill arbitrarily just said that I had CFS. I then told him about the two swollen lumps in my groin which I had only just noticed. He cursorarily dismissed those as being inguinal hernias, which didn't seem very likely to me.
All I knew about CFS then was it was an all in the mind, imaginary, psychosomatic illness so I told him that my illness did not feel imaginary at all. So he referred me to an ultrasound scan which said I had swollen lymph nodes NOT a hernia.
At some point I got a vicious, impossibly painful ear infection too, which I now realise was encouraged by a battered, weakened immune system.
At this point the GP apologised and did a Monospot blood test for Glandular fever. As it was now six months after the initial infection the Monospot blood test showed negative for glandular fever. I now know the Monospot test is useless & guaranteed to be negative six months after the onset of infection.
Unfortunately, this doctor appeared to me to be an ignorant prat who did not know this; so I asked to see a different doctor. Big mistake. I saw the head of the practice. He insists I could not possibly have had glandular fever as the monospot test was negative and that I definitely have CFS because I am complaining of long term viral type illness with dramatic fatigue & malaise and other symptoms like being drenched in sweat in bed (& other times) and extreme breathlessness in bed even after hours in bed not moving & obvious cognitive dysfunction etc etc.- I had all the glandular fever symptoms.
This weird GP organised more blood tests a couple of times which were expressly supposed to be the modern, sensible, up to date type and more reliable blood tests for glandular fever - the IgG & IgM antibody tests which give detailed and accurate information about glandular fever infection.
Except it eventually transpired these were never actually done at all and when I asked this idiot GP why, he said he wasn't allowed to ask for any old test he felt like (his words). I then researched this point with the NHS which confirmed what I already thought, that he was talking rubbish. I was gobsmacked that I had been deliberaterly misled. Why ? Search me ! Just another NHS idiot. They are very common these days, apparently.
He had also said a load of other rubbish which I do not have the time to write down, The whole story would take thousands of words.
Now I have a better understanding (thanks only to my research & not my GP ) of glandular fever and CFS I am inclined to agree I may well have CFS. But I was seeming to get better, having being completely incapacitated by it. But it keeps on seeming to relapse without rythm or reason. Sometimes a small amount of physical activity has no ill effect, other times it flattens me for days.
And today I had about six and a half hours sleep last night which counts as a far better than average amount but I just could not wake up......all bloody day. I felt completely coshed as though by barbiturates & there was also an uncomfortable feeling in my head, partly feeling like extreme de-hydration (which it wasn't as I have been guzzling fluids by the gallon. I have drunk NO alcohol at all for eleven days.
And, of course, it is really frustrating because I end up sitting at my desk trying to do the billions of things I want to do but actually end up doing absolutely nothing useful at all and would have been much better off lying in bed all day anyway instead. Arrrrrgh !!
BUT those swollen lumps in my groin have become increasingly very painful and in the past few days were at their worst. The pain they produce is now getting nasty and is often there even when I am lying in bed, occaisionally stabbing me with a savage viciousness out of the blue.
I cannot imagine hernias behaving like that and am concerned that I have been right all along and that I have had glandular fever which has morphed into lymphoma - which it can do. This would make these doctors into even bigger idiots that they have already demonstrated themselves to be.
P.S. - The big clue about me having actually caught glandular fever is that my eighteen year old son
had flu like symptoms with painful swollen inguinal lymph nodes too. I also had what I thought was a particularly vicous viral attack at the same time which I noticed wasn't very respiratory in nature and was odd & different from run of the milll viral attacks. I thought nothing much of it; I knew nothing about glandular fever and Chronic fatigue syndrome was just some weird psychosomatic all in the mind illness, according to anything I had ever heard about it - mostly from the media.
My son really, really bugs me by frequently helping himself to whatever glass of something I might be drinking, and swills mouthwash direct from the bottle we all share in the bathroom and also most certainly 'backwashes' the contents of his mouth into it. My idiot GP says you can't catch glandular fever by drinking from another person's glass. The first idiot GP crossly told me my son was nothing to do with any illness I might have and that I wouldn't be ill with something I might have caught from him. Still any doubts about these doctors being real idiots ?
Fortunately my son was only ill for a few weeks, Lucky him. But that is what glandular fever is like. The older you are the more likely an attack is to be be exceptionally vicous and more likely to have deadly effects, MS & Lymphoma for instance. Infants don't even notice they have glandular fever, nor do their parents.
My son was told by a completely different doctor he saw that he probably had glandular fever. That is when I first started to become aware of it, but didn't think it was a problem at that stage and at that time didn't think I had it.
Comments anyone ?