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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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CFS specialists out look on CFS

Discussion in 'General Symptoms' started by sleepy237, Sep 23, 2010.

  1. sleepy237

    sleepy237 Senior Member

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    Saw a CFS specialist today for first time and he put a rather different slant on things than what i have read anywhere....he says our thoughts and outlook (originally caused by our illness) well mine anyway - hopeless helpless depressed, doesnt help us and alters the way the lymphocites(spelling) work.... tomorrow i go to psychiatric hospital for a week no choice cos my anxiety has maxed out and is not helping my cfs had vertigo leg weakness for a week cant tolerate it cos i live alone and i get scared so off i go..Another thing he said is that we are like flowers in tubs, if we are in the dark we wont flourish but if we are placed in the light and get the nurture we need we will recover again. Makes sense in my case I dont know about others we are all different with our situations of onset etc.....I jusst hope I can make it back cos my heart rate zooms (pots symmptoms) when standing and plummets fast when i sit back down v scary to live alone with this illness, i also told him bout stroke like episodes, numbness etc he told me these are secondary cfs symptoms due to prolonged inactivity and i asked what could help, he told me aspirin, makes sense
    I also asked bout vitamins, he told me unless we are active PWCFS vitamins are not so much help except for Vitamin D and a multivitamin with Iron. He told me make cfs a dance partner (not the GET response i was dreading) meaning you can dance when you fancy but sit a dance out too. Seeing him again in a month let me know your take on this , hugs, sleepy
  2. Christopher

    Christopher Senior Member

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    Sorry, he sounds like a quack and extremely unknowledgable. I suggest searching for another doctor as soon as possible.
  3. Wonko

    Wonko Senior Member

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    I concur

    as regards your physical issues - crawling is a more appropriate response to vertigo and weak legs than a stay in a mental health ward - the very fact he's recommending/agreeign to this shoudl tell you all you need to know regardign his beliefs re ME

    fairly sure that most (if not all) [wME have resorted to crawling at some point - nothign wrong with it as a coping method and it has the advantage that if you need to rest theres a nice comfy, and safe, surface to do so not far away

    letting yourself get put in a place where they dont believe you are ill, where they have the control is a bad idea - being frightened and on you own - and if necessary crawling places - is much safer and less risky to your health

    yes it's frightening for a while but - and this is important - everyone adjusts, reaches soem level of acceptance of their new restrictions, and figures out ways of coping - it's not easy on your own but it can and has been done - on a practical level allmost everythign can be done over the net these days (shopping, bills etc.) so your in a stronger position than I was over a decade ago

    it's not easy but dont worry - it can be done - there is no need to abrogate control to a bunch of nut jobs that think if they just push hard enough you'll stop faking

    I would imagine a lot of your anxiety stems from feeling you arent in control anymore, that your body and to some extent your mind arent behavign the wy you expect or are used to - the solution to this is to adapt, figure out what HAS to be accomplished and whats unneccessary or can be put off, figure otu wasy of safely doing what has to be done (eg food - internet shopping, buy bread, fruit, sliced meat and a tray - you can make sandwiches on the tray on the floor for a while if your to shaky to stand up - not good but at least you wont starve, it's not dignified but who cares? you have a n audience of zero)

    giving yourself less control, and others more, probably wont lessen your anxiety if it's caused by feeling out of control/unsafe in the first place - adjust your behaviour/needs/expectations to gain control - dont give it away unless you know you can trust the person your giving control to
  4. Esther12

    Esther12 Senior Member

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    I thought he sounded okay-ish. It's hard to know to what extent he was just coming up with stories to simplify things for a patient. All CFS 'experts' seem a bit quacky to me so maybe my standards are just too low.

    Good luck with it all Sleepy. If you are feeling so troubled with anxiety then working on that will surely bring some benefits to your fatigue. Hope it goes well for you.

    edit - I don't think we can assume sleepy doesn't have problems with anxiety. From what was posted it doesn't say that CFS is an entirely psychiatric condition, and surely it's likely if someone did have CFS and an anxiety disorder that they could interact in a way which makes both worse. If you are having psychiatric problems, I'd commit to working on them as improvement there seems easier than improvement with CFS and will likely make other aspects of your life easier too. It sounds like Sleepy doesn't think the doctor is being unreasonable - and we're not really in a position to understand another person's health problems. It could be that the doctor is convinced CFS is only ever a manifestation of psychiatric problems, but I don't think we can claim to know this is the case.

    Let us know how it goes Sleepy.
  5. urbantravels

    urbantravels disjecta membra

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    Getting care for psychiatric symptoms that are causing you distress is important. But this doctor is mistaken if he thinks that would be a cure for the physical symptoms of CFS.

    It's especially troubling that he attributes CFS symptoms to deconditioning (prolonged inactivity). There has been plenty of research showing that CFS symptoms are NOT caused by deconditioning.
  6. Wonko

    Wonko Senior Member

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    my POV is that anxiety is a normal and healthy response to finding your body and brain no longer works the way you have come to expect - it is not a psychatric illness but a sensible response given the circumstances - in most it will diminish as adjustments are made and they learn to cope

    and yes i caught the deconditioning point as well - this is a UK NHS CFS specialist - they start fromt he assumption that ME is a psychatric condition - possibly a maladjusted response to an intiated illness but perpetuated by mental health issues - nothign in what the OP posted suggests their "CFS specialist" thinks otherwise to me
  7. Esther12

    Esther12 Senior Member

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    I see what you mean about : "i also told him bout stroke like episodes, numbness etc he told me these are secondary cfs symptoms due to prolonged inactivity and i asked what could help, he told me aspirin, makes sense".

    Given the way CFS is often treated this could well indicate trouble. But when Sleepy felt that the doctor was responding reasonably to the particulars of their case, and when we only have a second-hand summary, I'd tend to trust Sleepy's judgement.

    Hmmm.... it's difficult to know. Maybe I wasn't concerned enough though.
  8. Christopher

    Christopher Senior Member

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    "Another thing he said is that we are like flowers in tubs, if we are in the dark we wont flourish but if we are placed in the light and get the nurture we need we will recover again. "

    Compare that to what a *true* CFS specialist (Cheney, Mikovits, Bell, etc...) would say in response to your symptoms. Obviously there are so few *real* specialists out there, but I recommend, if you can, waiting for the XMRV stuff to shake out before spending any money on doctor visits and supplements. Anyone who isn't extremely keen on the XMRV/HGRV research is solely out for your money or just plain ignorant, neither of which are qualities you want in a care provider.
  9. sleepy237

    sleepy237 Senior Member

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    He did ask about the onset of my illness, lookin after sick relative then becoming sick myself...he drew on a pie chart because I questioned about ME and the drawing showed ME to be a very small percentage. My anxiety exarcebates symptoms and possibly creates new ones like hyperventilation which isnt going to help. I am not happy about having to go into psychiatric care but I am doing this voluntary to try feel more in control (I know that is a contradiction in itself) but emotionally I am struggling greatly probably breakdown material, I have had CFS for over two years maybe three and I do have a co existing PTSD diagnosis. As soon as the physical symptoms manifested, my mental health suffered because at first I was told somatization disorder and was very confused only to be later told early this year CFS/FIBRO. I think there are many roads to CFS and although the symptoms are the same for us, no two of us are alike in our suffering. CFS has actually caused me to become more traumatised (triggered the PTSD) which was manageable pre CFS. This is the only rope I have to hope and I can't afford to let it go. I see specialist again next month and he does BELIEVE which for me is a blessing against a GP who says medically unexplained symptoms - no more testing. Now I have someone on my side who knows the symptoms. I can't argue against the deconditioning part because I was producing symptoms before bedbound state. I will let you all know how it goes.
  10. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    WOW, I really can't believe how some doctors are. Supplements can't help? Unreal.
  11. Esther12

    Esther12 Senior Member

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    We're all different Sleepy. You take care of yourself, and hopefully this will help with some of your troubles. If you think this is the best course of action for yoursefl then you're in a much better position to judge than the rest of us.

    It would be good if you could come back and let us know how it all went afterwards. Regardless of why you're so tired anything you can do to start dealing with your anxiety better is bound to be helpful. Good luck.
  12. CBS

    CBS Senior Member

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    Sleepy,

    I'm with Christopher, UrbanTravels and Wonko on this. Getting the emotional support you need in order to deal with the physical distress and disability that are part of ME/CFS is important as is dealing with your own emotional response. Psychological support to deal with the pain and frustration is a fine adjunct but it is dangerous to push activity on patients with ME/CFS (anything that you cannot sustain EVERYDAY without a setback or crash is too much) and psychological support is no substitute for addressing the real physiological symptoms of someone with ME/CFS. ME/CFS can be life threatening and without appropriate medical care, I would not be here today.

    Best of luck.
  13. sleepy237

    sleepy237 Senior Member

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    CBS I agree but here in the UK the system is different, I know how dangerous the instabilities are thats why i am so anxious.
  14. SOC

    SOC Moderator and Senior Member

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    My biggest concern here is the institutionalization issue. We know of cases in the UK where patients were institutionalized and did not receive appropriate medical (as opposed to psychological) care.

    It is rarely a good thing to have institutionaliation in a mental health facility on your record. Sometimes people need it, especially if they are suicidal, but you ought to be pretty sure you need it before you go in, because it isn't all that easy to get out again.

    Of course, Sleepy, you should do what you feel is best for you. You know yourself best. I do suggest, however, that you do plenty of research on ME/CFS and then make your own decision about institutionalization. Don't do it just because the doctor says so.
  15. Sasha

    Sasha Fine, thank you

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    Hi sleepy - I'm so sorry you're having such a rough time. A relative of mine was recently admitted to an NHS psychiatric ward suffering from severe anxiety and depression (like you, in response to some very distressing circumstances) and is now enormously better having been put on medication and has recently been discharged. The nurses on the ward were very kind and she was treated very well. She was in such a state that she was unable to look after herself or even be looked after by family; if she hadn't agreed to be admitted, she would have been sectioned and forcibly admitted. In fact, she was keen to get into the hospital to be looked after.

    CFS is a very frightening thing to have when you live alone and are on the borderline of being able to look after yourself and it is not surprising that you are depressed and anxious as a result. I think it is important to get these things treated. If you feel that you might benefit from a hospital stay to do that, you may well be right.

    Your CFS specialist does not sound very knowledgable about CFS (properly defined) but he doesn't sound as though he is pushing you to be more active either (which would worry me if that were the case). The UK is in the Dark Ages as far as ME/CFS is concerned and that includes the NHS, unfortunately. But I hope that in the hospital, you might at least get more rest, be able to benefit from other people cooking your meals and looking after you, and getting treatment for your anxiety and depression.

    Good luck! Please do let us know how you got on when you are out again.
  16. CBS

    CBS Senior Member

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    A house of mirrors with no door?

    Sleepy,

    SickofCFS is right about the difficulties of getting out of institutionalized care (see the Rosenham Experiment).

    And yes, I have heard quite a lot about the system in the UK and the psychiatric hospitalization of CFS patients - a house of mirrors with no door.

    Ask yourself if you would institutionalize someone with MS who was experiencing the same stress and anxiety you are experiencing or if you're considering the psychiatric hospital because it is the only option you have been presented with so far. Again, in my view, there's nothing wrong at all with getting emotional support. It's just not a substitute for the medical care someone with ME/CFS needs.
  17. Snow Leopard

    Snow Leopard Senior Member

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    I think this "specialist" is full of tosh and an antidepressant prescription would be far more suitable for the anxiety and depression than a psychiatric hospital stay. But what would I know, I only read the scientific literature, I'm not a medical practitioner.
  18. CBS

    CBS Senior Member

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    Agreed, the term "CFS specialist" is more than a bit suspect here. This guy is no specialist.
  19. Sasha

    Sasha Fine, thank you

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    As far as I'm aware, there's no such thing as an NHS specialist in CFS in the UK. At best (which isn't saying much) it will be someone who specialises in some area with some distant relevance who has read a few papers on it (and not necessarily worthwhile ones, hence this guy's lack of awareness that deconditioning has been shown not to cause POTS in ME). There is no medical treatment for ME/CFS in the UK on the NHS. It's a very different set-up from the US.

    My impression from what sleepy said is that she's being admitted for treatment for anxiety and depression (which she herself believes she has, and severely), not for treatment for her CFS. Her doctor (and she, and we) may be hoping that if she can improve on those treatable conditions, it might also help with her CFS because having an extra illness burden on top of CFS can only make things worse.

    Possibly I have got the wrong end of the stick...

    Certainly, in a more rational world the NHS & MRC would have been funding proper biomedical research for the last 20 years and we'd have been getting the best possible medical treatment for our physical disease in all that time. Seriously, it's the Dark Ages here in the UK. Change can't come soon enough.
  20. sleepy237

    sleepy237 Senior Member

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    No you are right Sasha im going in voluntary one week provisionally to get my anxiety which is reactive to CFS under control and the specialists is CFS Nurse Specialist for Fife area, I wouldnt be going to hosp for CFS alone they wouldnt let me in lol

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