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Lessons from ME/CFS: Finding Meaning in the Suffering
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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.

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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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    Like some others I have spoken with, who have this illness, I am uncomfortable to leave home.
    It's not just about the brainfog and difficulties orienting. It's something else as well.

    And I've been thinking about the connection which have recently been made by some at WPI, about the possibilities that XMRV and autism are also connected...

    Now, I am not autistic, but looking at this specific symptom of mine, it could be somewhat reminiscent of a part of what autists experience.

    Anyhow, have you also got this symptom of discomfort for leaving your home? (In a way you didn't have before you got ill...)
  2. redo

    redo Senior Member

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    I am not talking about when it's fatigue/depression mediated. You don't have it, and thanks for voting. But I think quite a few have. It's hard to pinpoint it. But the nearest description is that it feels uncombortable in a way that's not from reasons such as those mentioned by me or you.
  3. julius

    julius Watchoo lookin' at?

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    Very uncomfortable.

    It feels to me like anxiety. For a long time I thought it was social anxiety disorder or generalized anxiety disorder.

    I was diagnosed with Asperger syndrome (as well as CFS) and I have never known if I actually have both, or just one and it looks a lot like the other. But I clearly fit all case definitions for both conditions.
  4. redo

    redo Senior Member

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    Thanks for telling julius. With me, I blamed it on the brainfog and orientation problems for a long while, but at a 'second glance', it's not just that. It's something else. And the only other place I have seen it described on this fashion is with people who have ASD. So it's a strange co-incidence to see ASD being linked to xmrv.
  5. serenity

    serenity Senior Member

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    well i'm voting yes, but i think it is directly due to my illness - i don't think there's anything more to it than that. i feel uncomfortable because i dont' know when i'll start to feel bad if i'm out or if people will understand.
  6. redo

    redo Senior Member

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    With me this symptom came about two years into the illness, together with some five other symptoms. "Autism like symptoms" is a good description, with me it's just a few, but the only other place I've seen them are in ASD.
  7. Mithriel

    Mithriel 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
  8. redo

    redo Senior Member

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    There's nothing I want more than to live a normal life either. But all of my CFS symptoms are stopping me. And in addition, this "discomfort" symptom, which you could describe as a "autism like symptom" is one which is stopping.

    I think you have a point in that if you've got known with people with CFS, from socializing, then it's not unexpected that they don't have this symptom... :)
  9. Mithriel

    Mithriel Senior Member

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    Sorry, I didn't mean that you didn't want to go. It must be a torment. We lose so much to this disease.

    What I was trying to say, badly, was I have no problem going out unless I am actually physically unable to move. I am like a dog sitting hopefully with a lead until someone offers to take me in my wheeelchair.

    Being pushed on a pleasant day is one of the few pleasures I have and I am so sorry for those denied it.

    Mithriel
  10. Sean

    Sean Senior Member

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    I feel uncomfortable if I have to deal with strangers or semi-strangers (like neighbours) for too long or too close up. I dread the normal social questions like 'what do you do for a living', etc. I do not have answers to those questions that are both truthful and do not cause unease in either me or the other person, or both of us. There is only so much misunderstanding and prejudice and rejection you can deal with before it becomes so much more preferable just to avoid or at least minimise those kind of interactions, which brings its own set of problems of course.

    So yes, it means I tend to hang around the privacy and safety of home, for reasons above and beyond the serious limitations imposed by the physical symptoms. Not all trips out are uncomfortable, I have learned how to minimise dealing with strangers and fobbing them off. But I still get that tense feeling a lot when I am out. It is just a whole lot easier to be at home.
  11. Tammie

    Tammie Senior Member

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    Woodridge, IL
    for me it's very mixed......on the one hand I REALLY, REALLY want to get out - start going nuts when I cannot get out for long periods of time (& unfortunately that is happening a ton)....used to be so active physically and socially and just generally involved in having a very full life, so I really miss that stuff

    otoh, I have been stranded so many times because my body and/or brain just stop working altogether and I am increasingly afraid of having that happen, so even when I do manage to go anywhere I tend to stay very close to home....and then there's the sensory overload (which may be what was being described in the autism comparison)....when this is bad enough I simply cannot tolerate being anywhere but at home (& even then if the neighbors are making ANY noise, it REALLY gets to me)......there is also the fact that my word finding skills, cognitive processing, and just general social skills seem to have dramatically decreased from what they were before, so at times this can make interacting with others difficult and embarrassing
  12. anciendaze

    anciendaze Senior Member

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    This really sounds like agoraphobia, and yes I have had it. The agora was the marketplace in Athens, and people who dreaded social interactions would avoid it. It tends to occur in wide open spaces where unpredictable interactions with other people take place. Many people mistake this for a fear of open places, but I am quite comfortable in an open place where I'm sure nobody will bother me.
  13. Sean

    Sean Senior Member

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    A phobia is an irrational or unjustified fear. I am not sure that describes what a lot of us have to deal with.
  14. serenity

    serenity Senior Member

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    yeh i am with Sean, my fears here are pretty rational. tho i do get the cognitive disturbances, too loud too bright too much going on too hasty etc.
    still, i think it's perfectly rational to be scared to go out in my condition. but like others, i love to & want to. tonite i really really wanted to get dressed up & go out. my brain did at least, my body did not.
    Sean i'm sorry you have trouble with the "what do you do" question. i have trouble too but i just tell people i dont' work. if we become closer i'll explain why but mainly i just try to make it sound like i'm too rich or too beautiful to have to have a job - haha! i find it effective, for making me feel better at least ;)
    i just try to make them feel silly, make them realize what a silly & invasive question it is to ask of a person you have just met - tho our society views it as perfectly normal. i think it's rude, & i try to make that clear when i hear the question so they will feel uncomfortable for asking it instead of me feeling that way for not having a "normal" answer.
  15. I don't like those hard to answer social questions & getting out in the world usually results in a spike of my symptoms' intensity compared to laying down at home, but I don't have any "fear" or feel uncomfortable or weird going outside - I love getting out & about, I'm just quite limited in being able to.
  16. Sean

    Sean Senior Member

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    He he.

    I still like getting out and about, as much as I can, and I get the trouble with cognitive disturbance, sensory overload, etc. But after more than 25 years of it you kinda get used to it, and learn how to override or ignore it for an hour or two. But only up to a point, and it is pretty exhausting, especially during hot weather.
  17. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    I love getting out and Im on the autism spectrum, I have Asperger's. When i go out, I do try to avoid people for long periods as I find that tiring (and i dont like to be around most people for long due to my lack of resonance to them).. but I do love to go out.

    Many with CFS also have ended up with depression.. and those with depression often dont really want to go out or feel its too hard even when they are able to do so. Another issue is those with coexisting anxiety (which of cause could be due to the CFS), ones with anxiety may fear getting out more in case they "crash" while out or have to deal with uncomfortable questions.

    I wouldnt think not wanting to go out is much due to CFS itself but rather due to if someone had depression or anxiety about situations outside of the home going on.

    Many with CFS are in their beds.. praying they could be going out and living a proper life.
  18. redo

    redo Senior Member

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    Well, there's a saying that if you've met one person with ASD. You've met one person with ASD. I don't think all with ASD have this symptom. And they don't. The first post in the thread is really about having this symptom, despite that it can't be explained with brainfog/depression/orienting problems etc. I know all of the yes votes aren't about that. That it's a mixed bag. But I nevertheless think it's fine to see that it's not just me who have got this symptom after getting cfs. It could be described as a "autism like" symptom (without implying that all with ASD have it). I suspect (and hope) that it comes from xmrv involvement.
  19. garcia

    garcia Aristocrat Extraordinaire

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    Brilliant thread. I asked myself recently what is it exactly that prevents me from going out and about. And other than frequent urination (which can be overcome), the main issue is severe anxiety/information overload.

    This is not agoraphobia, nor any other kind of phobia. It is not panic attacks. The anxiety is directly linked to the information overload (and yes it is very much related to autism). I believe both are caused by overactive NMDA receptors. I have gotten temporary relief in the past from magnesium injections, but nowadays they are not strong enough.

    Really the one thing which helps me, and it helps big time is testosterone. I get almost total symptom relief for a day or two from a single application. Problem is we know the issue with using testosterone vis-a-vis an androgen-responsive retrovirus, i.e. XMRV. So I am not advocating this solution one bit.

    I'm still looking for a good solution to the NMDA issue. I tried the drug namenda, but didn't do well on it. If anyone has any other suggestions for controlling NMDA receptors / anxiety/ information overload, I am all ears.
  20. Mithriel

    Mithriel Senior Member

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    This thread highlights what I feel is one of the main problems with ME/CFS. The symptoms are not psychological problems but can easily be twisted to seem so.

    Anxiety is a natural response to something that is hard. Anxiety disorder is often referred to as free floating anxiety where a person is anxious without having any specific reason to be - the anxiety part of the brain is switched on and can't be switched off. CBT can be useful for this.

    To feel anxious about going into a dangerous situation is a normal human response and is not a psychological disease

    To worry about suddenly needing a toilet, about sudden deterioration of symptoms, about what we will say to strangers, these are appropriate responses to a difficult situation.

    Remove the things that make a situation difficult, like a treatment for ME/CFS and the anxiety will go. No psychological intervention is necessary just a physical change in the body.

    Other psychological problems they say we have are likewise actually an appropriate response ot our physical limitations.

    Mithriel

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