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Are you uncomfortable to leave home? (possible xmrv symptom)

Discussion in 'XMRV Testing, Treatment and Transmission' started by redo, Jul 23, 2010.

?

Have you got a symptom of discomfort for leaving your home?

  1. Yes

    32 vote(s)
    62.7%
  2. No

    19 vote(s)
    37.3%
  1. redo

    redo Senior Member

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    The thread is stared about the some spoken about connection of XMRV and ASD (Mikovits).
    If XMRV is a factor or cofactor in ASD, then it wouldn't be strange if some of the symptoms people with ASD can get could also appear in some CFS patients.

    One symptom which many with ASD experience is uncomfort when leaving their home. No-one has argued that it's a symptom which must have a psychological etiology (and I certainly hope no-one thinks something I have written would imply it).

    I have got this symptom of discomfort when leaving the home myself (when I got CFS). And with me it can't be explained with fatigue/brainfog or disorientation etc. (And I have never had any psychological problems.) The only other place I have seen such a "strange" symptom is in ASD. And I think there could be a connection between what people with ASD experience, and this symptom which some with CFS experience.

    I know that many have answered yes in the poll, because of reasons such as brainfog, memory problems etc.
     
  2. Wayne

    Wayne Senior Member

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    Hi Alex, Hi All,

    Great post and description Alex. Really nails it.

    I LOVE to go out; but I don't do it very much as I know what it will do to me.

    For me, going out is similar to just about everything else I do, only compounded. When doing anything (even writing), I generally feel like I'm "sprinting" with all my might just to maintain a certain equilibrium. So whether I'm getting up in the morning, doing any kind of food preparation, talking to anybody, reviewing my checking account balance, etc., I feel I'm expending energy at about a 10x rate than if I'm resting with my eyes closed. Unfortunately, when going out, the 10x rate goes up to about double (20x or more), because of all the stimulation, chemicals, commotion (of normal everyday living by other folks) etc.

    There's always a price to pay for going out; but I very much enjoy doing so, and I also appreciate that I'm able to do it at all. I couldn't always in the past, and just from reading this thread, it's clear many here are barely able to or totally unable to at all. I suspect there are more people than we realize who are totally unable to; the ones who also likely don't have the ability to come to a forum like this and participate at all.

    Best to All, and thanks for all your replies.

    Wayne
     
  3. Sean

    Sean Senior Member

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    Far as I can tell, placing patients in a double-bind is the basic modus operandi of the psychs in this field. Once you have successfully portrayed patients as delusional in some way, then it is a trivial step to dismiss anything they say or any evidence they provide to the contrary. And, as we all know only too well, very few people will come to your defence.
     
  4. Dr. Yes

    Dr. Yes Shame on You

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    Unfortunately this poll question is too vague to be of scientific value, and could easily be twisted to fit the vague, unscientific speculations of the 'psychosomatic school'. I cannot think of a single disabling disease that would not cause symptoms of discomfort upon leaving one's home (or even one's bed). 'Discomfort' itself is an even more nebulous term than 'fatigue', and can be taken to mean any exacerbation of any symptom. One problem with asking such a vague question, particularly in a "yes/no" format, is that it purports to give a specific answer about an extremely complex set of data. The danger is that faulty conclusions can easily be drawn from what is essentially a flawed premise; this is exactly what happens with many psychological investigations of physical illness. A multiple choice question on a psychometric test for depression or anxiety, for example, might be "I am unhappy". If you answer that this statement is anything but completely false, your score gets weighted towards a diagnosis of depression. But obviously the false premise is that unhappiness = depression, totally ignoring the fact that pain or other physical suffering can cause 'unhappiness'. Other questions on many such 'tests' for depression or other neuroses - such as the famous "kinesiophobia" with which CFS patients have been branded - are exactly like this poll question (as stated); they mean so many different things to different people that a significant number of people will always respond "yes". The contexts of those positive responses are lost in the yes/no format, and the information becomes almost meaningless, as well as extremely vulnerable to false interpretation by those biased towards a psychosomatic interpretation.

    I should also point out that any aversion to leaving home is almost always construed by psychiatrists as at least partly a psychological symptom. In the absence of what they, or other medical professionals, consider "sufficient" physical cause, this is almost invariably interpreted as a psychosomatic symptom stemming from anxiety, depression, or delusional thinking.

    I suspect that those answering "yes" to this poll are doing so for a variety of reasons, which decreases its value to understanding this illness; it would be better to ask a series of more specific questions, such as "do you feel overwhelmed by too many sensory stimuli?" (this would be true outside or at home, and therefore removes the psychological interpretation of fear of going outside... if someone brought sound and light machines into our bedrooms, I suspect most of us would be more comfortable outside!). Or, in regards to the early posts that attempted to refine the intent of the poll, another could be "do you think you have autism-related neurological symptoms (not neurotic ones) that make it uncomfortable to be in social settings"? And so on..

    Redo, I know you had no such intention in creating this poll, but we must be very careful not to fall into the same traps that many unscientific health professionals and researchers have... and not to inadvertently give more ammunition to those who argue for psychological causation of CFS.
     
  5. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Dr Yes, cogently put. Unfortunately this is the problem with most polls and, I might add, statistics. They can be used for evil. Even a simple question such as: "Did you have sudden or gradual onset ME?" can bring about inconclusive results. How many people who would initially have answered "sudden", on reflection or in-depth questioning realised that they had a series of unusual problems occurring prior to the threshold event? I started a thread on this issue precisely for this reason and was not surprised to find many people changed their minds.
     
  6. serenity

    serenity Senior Member

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    Austin
    "Kick a person when they are getting up off the ground often enough and after some time they decide they don't like the idea of getting up. Wasn't it Albert Einstein who said that the definition of insanity is to repeatedly do something that doesn't work? That would make it insane for someone with CFS to continually subject themselves to torment and torture just to meet the perceived needs of other people, or even their own. Eventually we get it and limit our risk - that is normal sane behaviour."

    wow Alex, you said it. normal survival instincts. yup, that is what i feel - & i had a shrink confirm it. she wrote a note to my doc saying nothing was wrong with me mentally & all anxiety i had was a direct result of my illness.
     
  7. guest

    guest Guest

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    Alex is sooo right with this one. This is conditioning at its finest. Whenever we leave home we are likely to get affected with negative consequences of this illness. While brain fog, detoriation and a lack of concentration are maybe a little bit annoying at home, they can cause very serious problems outside. So we unconsciously connect leaving our homes with bad experiences. The worst part for me is, I see all these perfectly healthy people who enjoy their lives. They might have their ups and downs, smiles and cries too but these things are balanced in their lives, they give orientation and make their lives interesting.

    For me CFS is like being stuck in a bay where giant waves roll in. They break over your head, they drag you down, they swirl you around, you get smashed onto the rocks deep beneath, you realize how deep you are and then you run out of air. It feels like drowning but short before you faint, the water calms down a little bit and you get to swim up to the surface. For a second you see sunshine but soon it gets dark again, another giant wave, even bigger than the one before is coming. You can feel the anxiety in you rising. It's like an endless fight against nature where you have to drown over and over again.
     
  8. Mya Symons

    Mya Symons Mya Symons

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    I am not uncomfortable leaving home, but I am uncomfortable socializing with people (besides when I am at work and have to, but they don't know about the CFS because I tell them I have arthritis) I have just gotten tired of trying to explain to people who are not willing to try to understand why I suddenly don't feel good and have to cancel plans or why I can't do anything strenuous or why I sleep so much. I get tired of being judged and told it is "nothing" or so and so had that and they took vitamins or I should see a psychologist etc. I am lucky, though, in a sense because my husband also has this disease and I have a sister-in-law who I am close with who also has this disease. So, I have their understanding and they have mine. (Ofcourse, I do wish that they did not have this too--I would not wish this on my worst enemy)

    FROM RUSTY--"Some CFSers may find my experience with work will help. I manage to work part time domestic cleaning, at a great toll on my health. The alternative is to sit at home in misery completely closed off from any human contact. I found that I could only work when I had adrenaline urging me on. As soon as the adrenaline goes I fall into a heap. In fact I am able to boost adrenaline during work by deliberately creating stress and anxiety eg creating absurd deadlines, working at a frenetic pace, to a high standard by being overly fastidious. All my clients say I am the best cleaner they have every had. They don't believe I have ME. But by the end of a session, I can barely talk, cannot maintain eye contact, my eyes close up, and I ache all over. It feels like I am killing myself the entire time. Every minute is like torture. When I come home from work I go to bed and stay there till I next have to go to work. But I don't see that I have a choice. Bizarre isn't it."

    Rusty, I go to work for the same reason. It would be so easy to cut myself off from the rest of the world with this disease. There are days when I literally crawl out of bed to get myself in the shower. But, in the long run, it is worth it. I work 22 hours a week and have Saturday through Monday off. By the time Monday rolls around, I always feel worse then the days I work. I think it is because my job is not very strenuous, but I get just enough of the moving around that I need. And, the little contact I have with people helps also. But, my job is so easy. I do the same thing over and over again and most of it is spent sitting in a chair. I don't think I could do what you do.

    I also believe that if people with CFS are not leaving home, it is conditioning. However, the way we are treated by others who don't have this disease when we go out, I think, is worse than the pain and fatigue. For me, that is the ultimate conditioning telling me if I leave home I will just have another bad experience.
     
  9. Mithriel

    Mithriel Senior Member

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    It isn't conditioning that stops anyone I know from leaving home it is sheer physical impossibility. We may have learnt it is impossible but conditioning can be changed while an inability to deal with light cannot.

    We could get into a long discussion of what psychological disease really is, but that is not very relevant to our illness. People with Rheumatoid Arthritis who do not go for a walk when they are in the middle of a flare up are not told they are using conditioned behaviour. They rest the affected joints and then go for a long walk when the physical problem eases. Walking while the joint is inflamed will hold back healing, increase the pain and cause damage to the body.

    Exactly the same way thing happens to us There are situations which will make us ill and cause further damage, possibly permanent to our bodies. This is not a phobia in any way or form.

    I am sure that no offence was meant by people saying they struggle to work and it is conditioning that stops the rest of us from doing it, but no amount of struggling will make some of our bodies do that in the same way a body ravaged by MS will not be able to move.

    After more than forty years of illness, I am not anxious or depressed. I get angry at what I have lost and I get and frustrated but I am profoundly grateful for the good things I have, I laugh and have fun.

    Psychological problems could be defined as things which psychological remedies will help. I read about a woman who had difficulty walking in a supermarket. I was interested as I had great trouble in open spaces. Then she said she managed if her daughter went with her. The answer to my problem was to push a trolley.

    We have enough trouble with psychologists without giving them ammunition by framing our physical problems as psychological. It also implies that the psyches remedy of CBT will help our symptoms which is not true for us any more than any other serious physical illness.

    Mithriel
     
  10. Tammie

    Tammie Senior Member

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    I have severe MCS, too, and yet somehow when I replied to this post I failed to mention that (typical of me these days, though - I usually leave out huge things esp in verbal conversation - even things that have a constant huge impact on me, like the MCS)......I don't feel well enough to stay online much longer so I am not going to the links that you posted rt now, but if that's the mercola article I think it is, I made several comments after the article

    unfortunately for me (& maybe that's why I forgot to mention it in my previous comments) the MCS is not a whole heck of a lot better in my apt, so sometimes getting out (depedning on where - places with a lot of people are definitely guaranteed to cause an MCS reaction) can actually help
     
  11. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Mithriel, I agree, we should be very careful of not going down the same track as the psychologists, however I am not sure how 'trouble with open spaces' supports your argument.
     
  12. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Hi Mithriel

    Conditioning to dislike going out has nothing to do with consequences of going out - it is a response and causes disquiet and reluctance to go out. The problem is still there if you do go out. My severe/extreme photophobia stopped decades ago, so I don't have that any more, but every step I take causes me pain. This builds over time, and has never shown any sign it cannot get worse. Consequences of doing things are real, and I believe physical. The disquiet/reluctance we feel is psychological. My point is that it is normal, healthy and sane to feel reluctance about doing things that cause us harm. Shouldn't you feel reluctance about stabbing your hand repeatedly with a knife? Why shouldn't it be the same about going out and doing things that cause us pain? The pain and the reluctance are two different things - the reluctance is a protective mechanism only.

    Your point about conditioning being subject to change is correct - but it would be crazy to try to remove such conditioning until after the physical problems it protects us from are fixed. This is the exact opposite of what the psychobabble people are saying. As such it is very clearly not a phobia. Phobia and conditioning are two totally different things. Phobias are irrational fears. The kind of conditioning I am talking about is rational and protective. It is also completely antithetical to the psychobabble. They would have to acknowledge that we have real physical problems that induce our psychological issues, and they want to claim the exact opposite of this.

    One more point about phobias: I feel disquiet about going out, but I can still do so if I have to provided my physical capacity is up to it. That is completely different from a phobia.

    Bye
    Alex

     
  13. guest

    guest Guest

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    Alex is so right with this one, Mithriel. Conditioning doesn't mean that CFS or the symptoms are psychological. To make things clear, I'm 100% sure that CFS is a physical and NOT psychological illness. As long as we don't treat the cause e.g. viruses noone will get better. Most psychologists won't accept this fact until they get infected by themselves.
     
  14. Tia

    Tia Senior Member

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    I am desperate, desperate to get out. I love to feel the sun and the wind and I can't stop giggling when I feel rain it happens so rarely.

    I am smiling just thinking about it.

    Most people I know personally don't have a problem going out, though I don't suppose I would know them if they did. I have never met anyone with ME who had ASD either, come to think of it.

    Mithriel


    Had to reply to this.. I became mistyeyed when I read this line about seldom feeling the rain. It breaks my heart that people should have to go through this. I wish I reacted like you and felt giggling when I actually AM outside, but I feel only anxiety. beng afraid I'll have to live like this for the rest of my life. Like you said: One becomes DESPERATE to get out and have the energy to DO things. Feels like I'm living in a cage and no matter where I settle down, It'll still be my cage.

    And this:
    "After more than forty years of illness, I am not anxious or depressed. I get angry at what I have lost and I get and frustrated but I am profoundly grateful for the good things I have, I laugh and have fun."

    PLEASE teach me how to get rid of my fears and anxiety! I admire this way of thinking.
     
  15. ukxmrv

    ukxmrv Senior Member

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    Tia,

    I don't know if such a thing can be learned. Hopefully someone else will have some better ideas.

    My good spirits and happiness when I am outside are a blessing and may be a personal thing or based on a physical difference. XMRV or something may be affecting peoples brains in different ways - causing anxiety, or agoraphobia, or a autism type change in some. We don't know yet. People were exploring some different ideas here.

    I'm another long term patient. This blessing (able to be happy when outside) may have kept me alive all this time. Who knows what the decades would have been like without it. They were bad enough. I've been through so many different / difficult times in the last 25+ years of the hell of this disease.

    Others may be able to explain this better or impart some wisdom. Sending sympathy to you because it is an added burden on top of being disabled enough already.
     
  16. Mithriel

    Mithriel Senior Member

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    Hello, I will answer a few points

    Alex said
    I feel nothing like that, maybe I am just lucky that I am not affected this way, I don't recognize it at all, thankfully.

    Conditioning is behavioural. The psyches see our illness as a behaviour and make the simple equation that behaviour can be changed so out illness can be cured by CBT.

    I am not convinced that this conditioning is common.

    Rusty
    I have a problem with proprioception as many people with ME do (though we usually only realize if someone tells us). If I close my eyes I can drop like a stone. This is a positive Romberg sign. It is worse at some times than others.

    We close our eyes to blink all the time so I have to hold on to something or concentrate on my feet touching the ground to stop falling over. I suspect that it is this feeling that makes many people not like being outdoors. I first began using a walking stick to get over this problem.

    Mithriel
     
  17. Mithriel

    Mithriel Senior Member

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    I am so sorry for what you are suffering.

    When I was in my early thirties, I was given a key ring that said "I gave up hope and I feel much better". I realized that I was putting my life on hold until I was well. I decided to stop hoping things were going to be the way they were before and to get the most out of what life was actually like.

    Not much later, I read a book on living with chronic illnesses. She was scathing about the way the media like a "bravery" story. She said that life with illness is horrible and it is the sheer endlessness of it that is the worst thing to deal with.

    Her advice was to get as much pleasure as you can. Other people get a good feeling when they do their job well or have a night out. We have to get these feelings another way. Have soft fabrics on your bed, snuggle against fluffy cushions, wear clothes that feel good no matter how you look.

    Have little treats as you are able. They don't have to be expensive just things you like.

    Don't let other people dictate what you do. They will want what makes them feel best and it is not always what is best for you. We understand that so well with ME!

    That's maybe not an answer to your question, though. I am old enough now to know that the future does not go where you think it will so worrying about it is not worthwhile. Yet we have more hope now than for decades so you may well get a lot of health back, but you will not be where you left from for good or ill.

    Maybe if you can look behind the emotion you feel you can discover exactly what you are afraid of, then you can do something about it even if just a little. Your self worth is not dependent on what you can do.

    I hope you can begin to feel better

    :hug:

    Mithriel
     
  18. pamb

    pamb Senior Member

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    Wow. This thread has obviously hit a chord. I do wish the whole world that has no idea of what ME/CFS is could just read this thread to have some glimmer of understanding of the challenges faced by sufferers. I started reading and thought, ah, I'll post that, yup, so and so expressed what I wanted to say perfectly. But by the end of six pages there have been too many to list.

    My hubby (he can't bear than a few minutes on computer so it's always me here) is in the 'would LOVE to go out' camp but for so many reasons it is not worth the trouble. It is interesting that very early on he found one of the most striking things he was experiencing, besides the 24x7 pressure headache, was a very strange disoriented feeling which made walking most unsettling. He still suffers from it and it really means there is more distress than pleasure in being out an about. He does cross the street to visit our neighbors once a week or so as he knows they understand so if he gets unsteady or can't follow the conversation he need not explain and, as others have mentioned re: taxi fare, he knows they will help him home if needs be.

    Other than that his joy is riding his motor scooter around our quiet rural roads for 45 minutes or so once per week. He has routes with all right turns and no stops, so as long as he can stay upright on the scooter he can have the pleasure of being out on his own. He was a competitive cyclist for many years so that comfort level is deeply ingrained in his neurons I guess. He says he finds walking much for disquieting.
     
  19. Tia

    Tia Senior Member

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    Holy Crap! (Sorry, I watch Everybody loves Raymond a lot, haha)

    What you said about putting my life on hold until I get better, is EXACTLY how I've been living my life..since..well since as far back as I can remember really. I found out I had ME 2 years ago, and when I was a kid I thought: -Tomorrow..
    NOW that I know have it, I've made a list of things I want to do when I get well (hope is up since they found XMRV) and the list is...pretty long. And when in only my thirties, I would die to be able to get out and do all of that, and not sit at home alone (no friends or family) and just wait. It kills me and just creates anxiety. So I'm going to start swimming I've decided. Go to the gym I already do, but many times the tiredness is overwhelming and I workout real sloppy for about 30 minutes and then home. So maybe swimming will be easier to do? I'm going to try it!

    The anxiety I know is from fear of living like this my whole life: stuck in my apartment alone and finally dying here, never having seen the world or having done all the things I want to do. I used to be on antidepressants because of the anxiety before, but stopped since a few months back so now I'm dealing with the emotions instead.

    You have no IDEA how much your words helped me, I'm defenitely doing something about this now and not just sitting at home. Of course it's a matter of money to, there has been a lot of things (bad ones) happening to me because of the illness (one thing leads to another) and therefor I'm in a difficult economic situation, but swimming once in a while I can afford so I'm going for it! :cool: It's really amazing how much I learn from you people in here.. Other people don't understand what one is talking about but you know, and therefor one gets advice that fits. I'm so happy I found this community.
     
  20. ukxmrv

    ukxmrv Senior Member

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    Tia,

    Do you not have severe post exertional problems after the swimming? Both the terrible increase in symptoms and the chemicals in the pool make this a double whammy of horribleness for me.

    If you are going to do activities I'd hate to see anyone try ones that make their illness worse. Needs to be pleasant things that don't make you suffer to much afterwards (unless it is an occassional "treat" that you don't mind so much coping with the post exertional stuff and doesn't leave you permanently worse)
     

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