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Does the fatigue sometimes feel, exactly like having being drugged ?

Discussion in 'General ME/CFS Discussion' started by mugwump, Jul 21, 2017.

  1. mugwump

    mugwump

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    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 ?
     
  2. lnester7

    lnester7 Seven

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    I get like that when my brain is inflamed, I lose total conciousness eventually.
    But is what I feel like exactly!!!
     
    MEMum likes this.
  3. Luther Blissett

    Luther Blissett

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    Sorry, but there's no other way to ask this: are you also getting pain in the testes?

    The brain feeling is something I sometimes get in the morning, like it's really hard to fully wake up. Usually this is because I've become dehydrated by not drinking enough water the previous day, but you say you are drinking lots of water. Maybe an oral re-hydrating solution would help you?
     
  4. ebethc

    ebethc Senior Member

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  5. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    Hi @mugwump , I'm sorry you are having such a hard time with your symptoms and your doctors. As you are discovering, GP's in the UK mostly have no clue about ME which is a physical illness, not an 'all in the head' illness as a bunch of psychiatrists want the world to believe.

    As someone new to the difficult world of ME, can I suggest you might like to start with the ME association which can help with information on ME - their 'purple book' written by and for doctors is useful. Also they have a list of ME specialist centres that you can be referred to for diagnosis, though be warned that these vary enormously in quality and the treatments offered are usually useless or worse (psychological and exercise therapies - the psych is irrelevant and the exercise is dangerous). You can go just for diagnosis and opt out of the treatment if you want to.

    One option might be to ask the MEA for advice on the nearest to you of the few rare specialists who you can see privately for more thorough and knowledgeable diagnosis. Or search in here or start a new thread asking specifically for specialists in your area. Or join the MEA facebook page and ask members to advise you on good doctors in your area - they often have posts on that topic with helpful responses.
     
  6. Forbin

    Forbin Senior Member

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    I suppose the brain fog, sensory and balance problems might be likened to feeling "drugged" or drunk.
    However, the sort of general malaise, orthostatic and muscular symptoms feel more like having been poisoned -
    at least, in my experience.
     
    Last edited: Jul 22, 2017
    Invisible Woman, Mel9, MEMum and 2 others like this.
  7. NelliePledge

    NelliePledge plodder

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    The drugged effect you've talking about could be the result of poor sleep. One of the symptoms of ME/CFS is unrefreshing sleep. Even with mild ME I struggle to get going in the mornings. Also added to by the meds prescribed for sleep and pain have this hangover effect.

    Unfortunately a lot of us have very similar experiences with GPs. I can't add to Trishs suggested approach. Good luck
     
  8. ukxmrv

    ukxmrv Senior Member

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    My experience of ME is that it is worse than any drug I have ever taken before or after onset.

    The closest I have ever come to reading about my own onset would be an account of Dengue fever I once read. It's much worse than coming out of anesthetic (experienced this before I got ME). I'm guessing that it is much worse then barbiturates but I have no "before ME" to judge this by.

    I think that one of the major problems we have always had with this disease is that in our modern world there are no words to explain our physical symptoms. We try but fall back in traps. Doctors also try to put our experience into words of diseases or sensation they have been taught - this fails and they also fall into traps.

    Remember an old poster in the UK along the lines of

    " I feel as if I have a hangover, run a marathon, got the flu, been run over by a bus and been up with no sleep for a week"

    Keep trying to explain what it is like using words or experiences that non-ME people will understand but as they don't tend to do all these things at once or for decades then it doesn't sink in. Often non-ME or doctors think we are exaggerating for effect.

    We have tried before to get the words or at least find ways to explain using existing words but it has failed. We need new, unique words for this disease and we need to use them until they pass into public understanding.

    Like Forbin, I feel poisoned but as I have never actually been poisoned I don't know if this is the best word.
     
    Last edited: Jul 22, 2017
  9. Mrs Sowester

    Mrs Sowester BRING BACK KINA

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    Yes, I feel stoned and spaced out when I have head fog. People have actually asked me if I'm 'on something'. I was likened to a character from Shameless who was a heroin addict once!!!!
     
  10. Thinktank

    Thinktank Senior Member

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    I have 24/7 brain fog with some level of depersonalization.

    "fatigue" or "exhaustion" do not explain the way i feel. It's more like being drunk without the nice feeling and having a hangover at the same time. But also feeling poisoned.
    Today i can't read long posts like yours, so you see it's more than just fatigue. Will try again tomorrow.
     
  11. wastwater

    wastwater Senior Member

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    I sometimes gave mine the nickname 6 pint syndrome because it feels like being drunk or drugged with out the pleasurable bit
    Poinsoned or toxic maybe more accurate as I think high levels of cytokines are toxic
     
  12. Wishful

    Wishful Senior Member

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    I don't have a lot of experience with _that_ sort of drug, but I have used the term 'spaced out' to describe how I felt during some particularly acute episodes of CFS. Our brains aren't working normally, so there's really no limit on how it can make us feel...which is why it's so hard to diagnose the disorder by how we feel.
     
    Luther Blissett likes this.
  13. Gratefulliving

    Gratefulliving

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    Yes! I always feel giggly and peaceful but completely "out of it" like I'm watching a movie of myself or hovering above my own body. Also notice my word recall is terrible!
     
    Luther Blissett likes this.
  14. BFitz89

    BFitz89

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    That's a damn good way of putting it. I feel like I'm hungover and having a bad trip on a hallucinogen when the fog hits hard.

    Family and friends can't even begin to understand.
     
    MeSci likes this.
  15. Forbin

    Forbin Senior Member

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    Ironically, shortly after I became ill, a neurologist suspected that I was having a prolonged reaction to some kind of illegal drug that I'd either taken or had been slipped just before onset. I guess because I was college age, he seemed incredulous when I told him that I had never taken any non-prescription drugs (I didn't even drink beer), and that the only thing I'd consumed in the six hours before onset was from a can of Pepsi that I had opened myself. He took some convincing
     
    ukxmrv likes this.

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