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Extreme mental exhaustion after working...

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by soxfan, Feb 11, 2013.

  1. soxfan

    soxfan Senior Member

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    I really need some help with this. I have managed to keep working almost 9 years after becoming sick. I only work part time.
    Recently though after I get home from work (6 hour shift) I feel as though my brain is going to explode and my body becomes totally wound up inside. Once I get myself laying down the head symptom goes away and I am left with my insides vibrating...my heart pounding and just extremely overwhelmingly exhausted. I am not sleepy or tired but my torso from my chest to my lower abdomen is in turmoil.

    I am not sure how to exactly explain this but it is horrible. It also causes the nerve pain in my left calf and foot to go into overdrive and get very painful with shooting....electrical current like pains. It is like my body is rebelling and torturing me.
    I also have to take extra sleep meds on the days I work since it is almost impossible to fall asleep inspite of being physically exhausted.

    I don't have any problems while I am at work with concentrating...thinking...or doing anything physical but when I get home I pay for it.
    I DID not have this problem in the early years of my illness but has become increasingly worse in the past year.

    I have tried so hard to keep with my job through the years but am not sure how much I want to suffer in order to work a couple days each week.
    Can anyone shed any light on what would be the cause of this....I only feel this horrble after I have worked.
    I think I have written on this before but the past couple days have been horrendous and today I feel like I have been hit by a snow plow.

    I work in a pharmacy and am on my feet the entire time except for breaks. I have been tested for POTS and OI and don't have either....
    I see the doctor this week and am trying to come up with the right words to describe this to him so he understands...HELP
     
  2. peggy-sue

    peggy-sue

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    It sounds like you have hit some sort of major payback thing.
    I really can't help much - I don't know you or your illness or how you've managed to keep going and working while being ill, or what help you have managed to get.

    All I can tell you is about something that happened with me.
    When I became ill I'd only just graduated and had had to take on caring for my Dad, so I wasn't in paid employment, but I was working 3 days a week for Oxfam. My Dad lived independently in a retirement complex, 70 miles away, I don't drive.
    So I was spending one day a week with my Dad, socialising with him and sorting his life and affairs out. He had short-term memory problems, diabetes and his legs took him in the direction of strong alcohol if he had enough money in his pocket to buy any.
    Other days, I did his shopping and I cooked and froze meals for him, which I took with me on the train.
    Quite soon after I got ill, I had to give up my voluntary work, I couldn't cope with that and looking after Dad.

    But I carried on for the next few years; Dad's health and memory were deteriorating, I was getting slowly worse and worse, all I did was care for Dad and my ability to do that was coming into question.
    (Then he got pancreatic cancer and died, but that's another nightmare)

    I'd just been driving myself slowly head-first into the ground. If he hadn't died, he may well have had to go into care, because I simply could not do it any more.
    It was a quite different scenario to the usual kind of payback where you overdo something all at once, then suffer for it.

    I'm not over it yet.
    I don't think I ever will get back to a similar "baseline" as I had had before.
    I'm on a different, much lower one now.
    However, I am 55. I'm an older PWME, so that may well have had a lot to do with how badly I was affected and how poorly I've "recovered".
     
    justy likes this.
  3. soxfan

    soxfan Senior Member

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    I took care of my dad back in 2009 while he was dying of cancer but never did I feel this terrible even through all that. This only seems to happen when I work....not even when I go out and do errands or anything physical. I never thought that people get worse over the years but I certainly have....the nerve pain in my leg over the past year is much worse.
    I am certain I will never be like I was before 2004 but what I can't understand is why new symptoms emerging after all these years...I was definately better off last year or even the year before..

    It is so frustrating when you go along living the best you can but then get hit out of nowhere with stuff like this.

    I have mostly been treated for Lyme and Bartonella and also had a short course of Valcyte at one point. I guess I will have to talk with the doctor and see if he can come up with something.
     
  4. Valentijn

    Valentijn Activity Level: 3

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    It really sounds like an OI issue. When you're standing a long time, muscles tense without you doing it voluntarily, or even necessarily noticing it, in order to maintain blood flow to the brain. Can you check your BP when you're standing up and this is happening? If it's very bad, you'll get a ton of error messages :p
     
    heapsreal likes this.
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Just having pain can be tiring, sounds like the standing isnt helping. Maybe look into pots and orthostatic issues too. Maybe look into some type of medication for nerve type pain for a while, low dose tricyclic or neurontin etc. Start with an NSAID prior to work and see if it helps??

    I assume if u took valcyte u are positive to some of the herpes viruses. If u used the original valcyte protocol this would have been hard to tolerate as doses were high, now it seems they start with low doses like half tablet and slowly work up to 2 tabs if one can tolerate it, so worth looking into, also consider other antivirals like famvir which are tolerated better.

    I feel for ya, its hard trying to push through work, then your buggered for the rest of the time your not at work.:thumbsup:
     
  6. Marlène

    Marlène Senior Member

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  7. soxfan

    soxfan Senior Member

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    I have had a holter monitor and tilt test...nothing unusual showed up. I want to add that while I am at work I will sometimes just break out into a massive sweat which lasts a couple minutes and my skin turns bright red. In a six hour period I could have this every half hour or so. I want to add again that this does not happen even if I am out doing errands to several stores. Only when I am at work.
    It isn't the working that is the problem but the aftermath of work. I have to come home and immediately lay down which doesn't help at all but I need to. It seems as though the more I rest the more turmoil I feel inside. Resting does nothing for me.

    I am usually able to get up and get dinner made but thats about it.
    I have normal to low blood pressure to begin with. I am pretty sure it probably does have something to do with standing on my feet for such a long period of time. I get a 30 min break but the rest of the time I am standing.

    I have taken neurontin before but it makes me extremely drowsy so I wouldn't be able to take it at work. I usually only take if the nerve pain is unbearable and I am at home.
    I have had my cortisol (saliva) done and DHEA and I am currently on a small dose of cortef. My DHEA is fine.

    I am trying to recover today from working 2 days in a row which I rarely do now days.

    I will talk to the doctor about OI but I am not sure what is done for that. I guess I should read up on it again. I don't think I can take a beta blocker because my heart rate is low to begin with. When I had the Holter the average beat was 69 per minute with a low of 42 while sleeping.

    I was told by Dr. Komaroff that I did not have active HHV6 but he wasn't sure about EBV. I know that viral and bacterial infections can cause the nerve pain so who knows if Lyme of EBV is the culprit there.

    Thanks everyone for the responses...I hope others have some ideas or if this happens to anyone else.
     
  8. SOC

    SOC Senior Member

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    It sounds like OI to me, too. Many of us PWME don't have standard POTS which all they really look for at most clinics. So unless you had the test done by a knowledgeable ME/CFS doc, you may have some type of OI that wasn't detected.
    My daughter and I both pass the TTT by standard measures, but we both have OI problems. For some of us standing a long time is worse than walking, which sounds like it might be your situation. You might be able to get some more insight from this article here at PR http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/problems-standing

    FWIW, before I was pacing, I used to get that bright red and massive sweat thing. Once I got my AT measured and wore a heart rate monitor constantly, I discovered that they coincided with me staying over my AT for an extended period of time.
     
  9. SickOfSickness

    SickOfSickness Senior Member

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    Well good, keep looking for solutions. But I think most ME/CFS patients go downhill over time and nobody really knows why.

    We go slowly downhill, plus we may have bigger drops in what we can do sometimes. Often we notice drops because we pushed ourselves, for example a year we cared for someone else, means a drop off for 3 years or 5 years.

    For a lot of us, the only way to halt that decline is working inside our small "energy envelope" and not pushing beyond. Then we might even recover a little bit, a slow little uphill of our health. Most of us in the first years of illness didn't believe it, or thought pushing could be the answer, so we pushed ourselves lots.

    A lot of us can do activities but collapse afterwards for days. If we are stable and working in our energy envelope, but then we worked twice as much as usual, I think we're not just causing a one time aftermath of 2 days recovering, we are also lowering our energy envelope for weeks or months.
     
    justy and SOC like this.
  10. SickOfSickness

    SickOfSickness Senior Member

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    I wonder if that part could be an allergy to something in the pharmacy? Even if you did not have the symptom before. Try to notice if there are patterns, anything that happens before the break out?
     
  11. penny

    penny Senior Member

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    Yeah, it sounds like OI to me too...

    I have more typical POTS but a "hot flash" (really feverish heat starting in my trunk, sweating and cold extremities) is definitely one of my standing up too long symptoms. And the fact that errands are easier than work makes sense with an OI issue, errands usually involve a lot more walking (easier) and less standing (harder) then it sounds like your work does.

    If it's an OI issue, I'm not surprised you feel like crap after 6 hours of pushing through the symptoms! (very unscientific speculation to follow : ) your body could be dumping adrenaline into your system to try and compensate/keep you upright, which could then leave you with the wired/vibrating sensation you describe.

    Good luck!
     
    justy and Valentijn like this.
  12. soxfan

    soxfan Senior Member

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    Wow..love all these responses. What everyone is saying seems to make sense. I did have the tilt test done and they monitored my bp for the entire 30 minutes and said it was normal and stable.
    I do try to keep walking and moving at work as much as possible because just what penny said it is much harder to just stand.

    The vibration and wired shaking insides only happen after I am home from work and either laying or sitting in a chair..then all heck breaks loose and I am in for hours of misery.

    I did mention to my husband the other night that maybe it is adrenaline rushing through my body from the extreme stress of standing at work.
    I am guessing I should try support compression socks...

    I had a heart monitor watch I wore last year for a few months but my heart rate really didn't change much while at work. I also wore the holter monitor to work since that is when I was experiencing these problems.

    I don't have dizziness..fainting.. Or any of the symptoms I read on the OI site but I am not sure what any other explanation would be.
     
  13. Valentijn

    Valentijn Activity Level: 3

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    I had a 30 minute one too, and did fine aside from feeling like crap. Then I seriously started losing it when I got to the elevator after the test.
    Most of us probably don't faint. And I think you are (thus far) physically compensating for your OI, then hitting the wall afterward. Healthy people with OI can handle that sort of thing, and are in fact advised to tense muscles when having an episode. But tensing muscles has bad consequences in ME patients, and doing it for a full day at work might be too much even for otherwise healthy OI patients.
     
    SOC likes this.
  14. soxfan

    soxfan Senior Member

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    I know there isn't much I can do for OI except buy some compression socks. I am going to bring this subject up with the doctor again....he is the one that ordered the tilt test and had me wear the monitor. But since nothing showed it really wasn't talked about again.
    I am definately hitting the wall afterwards....I had a fairly good year in 2012 going on several vacations etc...and doing really well. So this is kind of a huge setback for me.

    I would really love if some doctor could at least diagnose me with something other than fatiguing illness or lyme-like illness. I know it doesn't mean much but I have been in limbo for almost 9 years and not one doctor will write any kind of diagnosis.

    The only symptoms I get at work while on my feet are the random sweating episodes and sometimes I will get blurry vision...once in a while I will feel lightheaded when standing back up from stocking a low shelf. About half way during the shift I will start to feel really tired but kind of work through it...I don't even feel the nerve pain until I am sitting or laying down. While I am at work and moving around I don't feel it at all.
     
  15. soxfan

    soxfan Senior Member

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    So my other question is .....what can I take to help my body calm down after I am home from work? It is very uncomfortable and I have tried many things to help. Kavinace....Klonopin...Ativan...but since I am not really suffering from anxiety none of this stuff helps. It just makes me drowsy.
    I will try anything to relieve the over stressed...over stimulation I feel after being on my feet for a work shift. Anyone with ideas...it can be RX or herbal...
     
  16. peggy-sue

    peggy-sue

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    You managed several holidays last year? :eek: And working? :eek::eek:
    Do you think you have just been overdoing everything for the last year or so?
    I can't manage holidays at all well - it's a whole load of stress and effort and hassle, they might be nice - but I pay for them, physical-health-wise, big-time. Sometimes I tolerate it, because of the mental and personal boost, and because it's good for our relationship for us to "go out into the world, together".

    Another thought I've had about your troubles, given the hot and sweaty bits, is; Could you be starting the change?
     
  17. soxfan

    soxfan Senior Member

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    I am long through the change by about 5 years..I was so sick with Lyme at the time I hardly noticed. I would say I am able to function well overall although of course never like I use to. I shouldn't complain at all really except for this work problem. I do have many other symptoms but am somehow able to manage.
    I have total unrestoring sleep so I wake up tired..chronic nerve pain in my calf and foot...palps in the sense that I am accutely aware of every single heart beat (very annoying) and I have chronic fatigue all the time to some degree.

    I was a runner and can no longer..must rest everyday for at leas 2 hours...the list goes on.

    For some reason I do very well on vacations...maybe less stress. I am only about 50 percent of what I was so I still have ongoing problems..
     
  18. peggy-sue

    peggy-sue

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    Sounds like what you need is a holiday! ;)
    I get horribly stressed away from home - home's my safe place.
    I feel as if the entrance lobby is my air-lock into my own secure little realm where nobody has ridiculous expectations of me and I can just be me.
    I don't suppose it helps that we've been burgled twice while away.:rolleyes: I like to keep an eye on the place!
     
    soxfan likes this.
  19. SOC

    SOC Senior Member

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    Low blood volume could be a factor for you. It's pretty common in ME/CFS. You could ask your doc if you can try Florinef. Because it depletes potassium, it would be a good idea to ask for a K-dur (a long duration potassium supplement) prescription along with it.

    You can also fluid load. Make sure you're getting up to 3 qts of water daily. Electrolytes in at least part of it would be a good idea, too. I find that I have to drink 0.5-0.75 L of water before bed and first thing in the morning in order to be functional at work at 10:00 am.
     
  20. Valentijn

    Valentijn Activity Level: 3

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    There's quite a bit than can be done, other than socks. There are various drugs that help people a lot, and some get improvement just with certain herbs and/or electrolytes.
     
    soxfan likes this.

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