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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
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PEM after social/work interactions

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by soxfan, Aug 23, 2010.

  1. soxfan

    soxfan Senior Member

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    PEM has become my worse symptom recently. I am having a very hard time dealing with the after effects of my activities.
    I would say that I mostly have problems with social/mental PEM which includes my part time job and any long time interaction with family-friends etc. My PEM starts during the activity and when I get home I just crash into bed with severe exhaustion. I am unable to do any thing more that day. I can't move, eat or even talk.

    The following day my body is just dragged down by severe physical exhaustion. I have been sick for 6 years and just within the past 2 months this has become a huge problem for me. I am beginning to be afraid to do anything. I don't have this problem with physical activity at all..

    Does anyone experience PEM is this way? I feel extremely exhausted for at least a day following the activity and is to the point where I really can't do much of anything. I am very worried and frightened over the prospect of this becoming a permanent problem...only because it has become much more debilitating for me.
     
  2. Esther12

    Esther12 Senior Member

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    I find that I can get caught up in a chat and forget about pacing/resting so that I knacker myself out.

    I also find that being arround healthy people means that I assume that I can do about as much as them so long as I avoid any real exertion... then it hits me.

    I think that for me the social side of things just means I pay less attention to my fatigue so end up over-doing things, rather than being especially tiring in and of itself.
     
  3. L'engle

    L'engle moderate ME

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    I have the same type of PEM. Often I can spend the day doing housework or something, and I'm tired the whole way through, but dealing with people really makes me more sick. I have it with exercise too, but with work and social interactions very severely. I didn't think I had genuine CFS for a long time because I could still go for walks every day. But I always felt ill at work or parties and had to rest 12-15 hours per day.
     
  4. soxfan

    soxfan Senior Member

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    PEM

    I have never had PEM after any type of exercise or physical work. I am not sure if tapering off cortef has something to do with how severely I am having it now.
    I was always tired after working or a family gathering etc..but was always recovered the next morning.

    my PCP is trying to find a doctor that deals in CFS so I am hoping to be able to talk with someone who understands this illness. Right now I am kind of on my own not really knowing what is happening to me so it has been a very scary past few months.

    This debilitating physical fatigue is so hard to deal with and understand. A better name for what I feel is post external physical exhaustion. I feel as though my body is trying unbelievably hard to recover and recoup but isn't getting very far...
     
  5. Wonko

    Wonko Senior Member

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    in my experience dealing with social interactions is very demanding energy wise for the brain - which uses up a sigificant amount of the total energy used by the body (20% I believe) - and it's quite difficult short of isolation to persuade it to downregulate this

    it seems to me that your rapid downturn is a result of reaching a tipping point - ie up until this you had enough energy (just) to deal with things and handle things like repair while asleep etc - as energy levels drop less and less repair gets done, operating with damage uses more energy than operating without it so less repair is done the next night - this degradation continues until you reach a point where the damage being repaired each day is less than the damaged caused simply by living and the energy cost of simply functioning becomes more than can be sustained

    I'd seriously avdise discontinuing any non essential activity (and possibly redefining what you consider essential) until this trend reverses - stop, rest, now - and continue until things improve

    not to do so could be bad
     
  6. soxfan

    soxfan Senior Member

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    I do agree with what you said. I know that during the activity I can feel my energy draining but yet I continue on. Whether it is in a social situation, shopping etc. I have my boss at work schedule me only 5 hours per shift because I know any longer than that will be a disaster when I get home.

    I think my problem is that no doctor has actually come out and diagnosed me with CFS because I don't fit the criteria so in my mind there is no reason why I can't go out and do what I want even though I always end up paying a huge price for it. It is very difficult when family and friends do not understand what the problem is when even I or none of my doctors do.

    I am much better at discontinuing the situation when I am alone and can just walk out of a store when I feel myself losing energy. Or if I am with my husband I just say gotta go now...it is much harder for me when I am with a family gathering to just get up and leave.

    Plus it is hard to explain why I can't go out shopping with friends for a day when I can get on a treadmill for 2 miles without any consequences.

    It is just my own fault for not controlling my activities so that I can manage them and not get myself into trouble.
     
  7. floydguy

    floydguy Senior Member

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    Personally I wouldn't let the lack of PEM after physical exercise deter you. I don't have a huge issue with physical exercise either. Most of my bad "fatigue" is on the cognitive side. As you will see from these boards there is wide variation in symptoms and issues.

    I've been told by a well known CFS doc to see a Rheumatologist specializing in innate immune dysfunction for clinical care. So you might look in that direction. For me tamping down my out of control immune system seems to be the best course.

    I think complementary docs can be helpful keeping your body full of nutrients and minerals through IV therapy. It's expensive but if you find somebody who knows what they're doing it can be helpful.
     
  8. taniaaust1

    taniaaust1

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    It's not your fault, but it is a choice you are currently making. Try to balance out your life better so days are more equal and so you arent doing a lot on one day and then completely crashing the next. That is one way in which many go making their health much worst!

    Keep a journal to help you learn how much you can do before you crash. Then do less than that amount. Many of us time how long we do things and not allow ourselves to go over (as its so easy to go over and then pay consequences later).

    View crashes as sending you away from health rather then forwards.... so really really try not to cause them. Aim for a balance.
     
  9. soxfan

    soxfan Senior Member

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    very true..it is a decision I am making to overdue. I just have to come to the acceptance that I have to stop before I feel my energy starting to go. By the time I actually feel my body draining it is way too late.
    My pcp is suppose to be refering me to someone who knows this illness since he admits he really doesn't know how to help me. So I am waiting on that. It will be nice to talk with someone who understands since I haven't been able to find anyone yet.

    I will continue to exercise etc..since I don't have any issues with that at all. Thanks for everyones responses and ideas. It really does help when other people understand what is going on and what I am talking about.
     
  10. L'engle

    L'engle moderate ME

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    That's great that your boss will accommodate 5 hour days! Stopping before you hit your break point is the best thing. I Pushed too hard with work and social things and a few months later my exercise tolerance went way down too. As well, I couldn't feel justified as to why I couldn't work full days or go out with friends when I was clearly going for long walks every day. ( I could never do much aerobic exercise, so clearly something was already going on with exercise intolerance.) So I just pushed until my exercise intolerance caught up with the rest of my troubles... not what I would recommend. I'm glad you are asking for help now instead of waiting too long, like I did. feedback from others would have been so helpful, if I'd thought to look for it.
     
  11. soxfan

    soxfan Senior Member

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    I am extremely lucky in my job situation. I have been struggling with this for 6 years and my boss has been very understanding. I actually tried to quit because I was afraid I would become unreliable and he wouldn't let me. He just asked me what my limits were and that was how he scheduled my hours.

    I had been running the first 3 years of my illness but then couldn't do that anymore so I just walk now. It is a fast walk but that is all I can do..so far I have had no problems with that.

    Luckily I don't have pain either so I think that makes a difference in how much I can actually exercise. I also lift weights. I have osteopenia so I have to do what I can to help me with that too.
     

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