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Anyone feel like this?

Discussion in 'Neurological/Neuro-sensory' started by Fuzzyhead, Mar 9, 2013.

  1. Fuzzyhead

    Fuzzyhead Senior Member

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    Thanks zensational I have bought some raw beets today and juiced a quarter with carrots, lemon and lime juice. I read the link you posted about the benefits of beets and I didn't realise how good they are for your liver and spleen. I am giving it a try, I get my ultrasound scan on Friday. I don't know what to do next if everything is normal on my liver and head, it must be just the m.e that's got worse for some reason.
  2. Barrie

    Barrie

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    Hi, Just reading you're account, it sounds much like my experience. I've always been prone to anxiety, but since I've had ME (nearly 18 years officially) it's as if I'm stuck in high anxiety mode and just can't relax. I've had raised counts on my liver tests in the past too on and off, but scans have revealed nothing. I get a yellowish hue to my skin at times, especially when I'm very unwell. I've tried beet and carrot juice and other liver herbs, and they didn't seem to have a huge impact, although it can't do any harm. This is my first post on here, so hello, btw. :)
  3. Barrie

    Barrie

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    Oh, and just to add, I know too about the working yourself up to a frenzy worrying about certain symptoms - I absolutely convinced myself that I had stomach and bowel cancer at different times, but tests came back OK. It seems that the ME has affected my thinking and reasoning so profoundly that anxiety and irrationality just take over and I have seemed unable to rationalise my way out of it. My brain is just mush. And let's face it, this illness produces so many different and weird symptoms to worry about.
  4. Fuzzyhead

    Fuzzyhead Senior Member

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    Are you in the uk Barrie? When your scan didn't reveal anything did they just re test your bloods?
    I am the same since I got m.e 12 yrs ago I can't seem to rationalise when I get any new symptoms and anxiety takes over.
    Have you found anything that's helped?
    I am thinking already if nothing shows it must be my stomach or bowel because I feel so ill.
    It's strange that a lot of people with m.e have raised liver enzymes but they never find a reason, it's such a strange illness.
  5. Barrie

    Barrie

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    Yes, I'm in Dorset. I ask my GP to do liver blood tests from time to time, they were within normal range last check, but it does fluctuate.

    Our experiences sound quite similar.

    At one stage, I was jumping from one organ/body system to the next, stomach, bowel, liver, gall-bladder, with equal conviction there was something wrong. I drove myself, my family and my GP mad. I felt so ill that I was convinced that there was something seriously wrong. The level of worry and anxiety was no fun. Having had these tests before though, I do try and reassure myself when the symptoms flare up from time to time, as they seem to.

    I've not been able to get on top of the anxiety so far, I would love to though, it would make such a difference to be more peaceful and have better sense of being able to cope. The best thing I found for me was valerian in quite big doses, but my doctor doesn't want me taking it at the moment because of other meds I'm taking. I was just looking through the 'completely eliminated my severe anxiety with three supplement's thread and was wondering about trying the NAG/flaxseed oil/ turmeric combination. I've tried so many things over time though and finances are tight, so I'm not as quick to jump onto suggestions as I was once was. But, I might have to give it a go I think.
  6. Fuzzyhead

    Fuzzyhead Senior Member

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    I have never felt this bad in my whole 12 yrs of m.e, even in the beginning. I usually can get out and about but when I try and do something now I feel awful. I feel sick as soon as i wake up and it eases a little at night time, no appetite, sweating at night, terrible fatigue and brain fog and crying uncontrollably.
    I have had all kinds of tests over the years but I feel different this time and convinced its serious even though apart from raised liver enzymes my other bloods are ok. Everyone keeps saying my red or white blood cells would be amiss if there was something else going on but I just dont believe them because I feel awful.
  7. Barrie

    Barrie

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    I'm sorry to hear that you are having such a bad time of things at the moment. It is reassuring that your other bloods are ok. I have found that my illness has gone through phases, sometime where old symptoms re-occur and sometimes new symptoms appear. When I was at the worst stage of being convinced I had cancer, I did find that anti-depressants from my GP brought me back from the edge and gave me a bit more balance. The symptoms that were worrying me remitted in time too, and in hindsight, the anxiety I was experienced made them worse, as I was so preoccupied with them. The symptoms I worried about back then do reappear from time to time, though I'm not always sure if it's the ME or the anxiety caused/made worse by the ME that accounts for some of them. Maybe both, I don't know. Trying to work these things out with ME brain fog is exhausting.
  8. Fuzzyhead

    Fuzzyhead Senior Member

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    I know that's what I feel like that I am all consumed with the thought something else is going on. Everyone keeps saying the fatigue, nausea, night sweats etc are with worrying. I try to keep positive and try to do things but I just feel ill and then it reinforces my belief something else is going on. It's a vicious circle, if the symptoms would go I wouldnt be worried but because they aren't I am worrying.
    I have been on anti depressants 4 weeks today and I feel like they aren't doing anything, I am still crying everyday.
  9. Barrie

    Barrie

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    Yes, the physical symptoms of anxiety/depression can be very powerful, and very difficult to put up with. In my opinion, this type of anxiety/disordered thinking is related by the ME, with the brain function being so affected as it is.

    I resisted going on anti-depressants for a time as I was convinced that my problem was physical, but agreed to in the end so that I would be able to cope better with a bad diagnosis. The tablets my doctor gave me (Sertraline, I think) definitely made a big difference. It sounds to me that maybe you might be helped by speaking to your doctor about a change in dose or a different prescription as you should be starting to feel some improvement by now. Hopefully you may then find in quite short time that at least some your symptoms and your mood will improve.
  10. Fuzzyhead

    Fuzzyhead Senior Member

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    Thanks Barrie. I just wish the fatigue and nausea would go away. I might see a gp before my scan on Friday about trying another anti d. I often get anxiety and depression with the m.e and I always say its like it's part of the m.e and we can't help it but this feels on another level, I just feel awful 24/7. I don't know how bad you felt with yours?
  11. Barrie

    Barrie

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    I was in an awful state at that time. I'm still struggling now, but not quite as desperate and out of control as I felt then. I have been trying a different medication for anxiety but don't seem to be able to tolerate it, so I may have to speak to my GP about something else. Like you, I feel that depression and a worsening of my anxiety are part of my M.E.. When the M.E. is bad, the anxiety symptoms and depression gets worse. That's where I am at the moment really.

    Fatigue and nausea are symptoms are ME in their own right, so you may not necessarily experience much improvement there even if the medications work, but you hopefully will feel brighter within yourself and better able to cope. And that is a big help when trying to deal with the rest of the health issues that come our way.
  12. Fuzzyhead

    Fuzzyhead Senior Member

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    My decline started with vertigo and left sided headaches at the end of November but like I say in earlier posts a few days before I was getting pains in my spleen area every 30 seconds for a full day. Its like my body can't handle something whether it's viral, bacteria or fungal I don't know but I have went downhill since. When I get little relapses in the past I would get a few pains in the spleen area beforehand but only mild.
    I see an immunologist next month at Newcastle hospital but don't know what to expect.
    I know fatigue and nausea are symptoms of m.e but I don't get either too often usually but I have both 24/7 the last month or so that's why I keep thinking something else must be going on or my m.e might have just got worse.
  13. Barrie

    Barrie

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    This illness produces some weird and diverse symptoms, and some new ones from time to time to give us a bit of variety! But it is always sensible to mention new symptoms to your GP, as you've done. It's good that your doctor is listening to you and that they are investigating. I'm not sure either what the immunologist will be able to do either, possible some more bloods and go from there? Hopefully if nothing else they can provide you with a degree of reassurance. The tablets should help bring the worrying under control a bit though if they can find one that helps you.

    I too get that pain in the spleen region intermittently, but I'm never sure if it's that or something else - my biology knowledge isn't that strong! Like quite a few of my symptoms, it usually comes and goes.

    I
  14. Fuzzyhead

    Fuzzyhead Senior Member

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    I don't know what' I will do if my liver scan is ok, my gp said he was going to test my thyroid but I have had this tested in the past and it's always ok. I will just have to accept the m.e is worse and try and get some medication to help with the anxiety and depression.
    I am not sure if it is definitely my spleen either but something in that area I get sharp pains in before a relapse.
  15. Barrie

    Barrie

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    I wish you well with your tests and hope that things start to pick up again for you soon. Keep me posted on how you get on.
  16. Fuzzyhead

    Fuzzyhead Senior Member

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    Ok thank you I will.
  17. vitamink

    vitamink

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    NYC
    the unreliability of testing shouldn't stop you from looking into lyme, though. you might test positive, after all. or you might test negative and there will still be a chance that you have it. maybe you can find a specialist in the uk if your immunologist doesn't run the tests...

    i developed similar symptoms 5 years after initially getting sick with what i thought was cfs. in addition to fatigue, brain fog/ encephalopathy, dysautonomia, mood issues, etc. i suddenly developed severe anxiety, head pressure, dizziness, muscle twitching and stiffness, heart palpitations, etc. i knew i was already sick with cfs but i became obsessed with the idea that i had ms or something like that. magnesium supplements helped with the anxiety and other symptoms, but they persisted until i was finally diagnosed with lyme disease and a bartonella infection a year later and began treatment.

    not saying that lyme is what you have, it's just a possibility that's worth looking into. in the meantime, maybe you can try magnesium to relieve some of the anxiety...

    hope you feel better,
    k
  18. Fuzzyhead

    Fuzzyhead Senior Member

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    I am definitely going to ask the immunologist about lymes. The only thing is I have spent so much money trying to get better over the years if he won't do the lymes test I will have to pay myself which will be a fortune.
    Ms has even crossed my mind with all these new symptoms especially the shaking/mild tremor, but after 12 yrs if it was lymes would the symptoms change after having it that long?
  19. vamah

    vamah Senior Member

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    Washington , DC area
    I understand completely about the expense. I had to pay for my own lyme tests (from Igenex, here in the US) and they turned out to be about as clearly negative as you can get with lyme. As far as the symptoms changing, I think it's very possible as the disease progressed, but that doesn't necessarily mean you have lyme. Since you mention MS, I wanted to ask (I can't remember if you previously said) if you have been tested for herpes viruses. HHV-6 especially may be linked to MS. Those tests are not as expensive as for lyme either. My first symptom was severe anxiety and I have only recently gotten a diagnoses of HHV-6 (I probably have Epstein-Barr also, but I didn't get a good test on that -- long story). I would suggest starting with those 2 viruses then possibly CMV or others. Dr. Jose Montoya at Stanford University has found that a subset of CFS patients have chronic EBV and HHV-6 and respond well to anitivirals. I am following his protocol currently.
  20. Fuzzyhead

    Fuzzyhead Senior Member

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    No I don't think I have been tested for the herpes virus or HIV-6 but I have wrote them down for my apt with the immunologist.
    I don't know what I have been tested for over the 12 yrs to be honest, probably basics, lupus, thyroid, hormones, sugar, hepatitis and some auto immune stuff.
    So are you on anti virals?

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