The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Been gradually getting worse for years, huge drop last month

Discussion in 'General ME/CFS Discussion' started by Uk125250, Jul 11, 2016.

  1. Uk125250

    Uk125250

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    Cold Spring, KY
    Hi, did anyone else have this happen? I originally got sick in sep 2009. I started to recover in early 2010, then started to go downward near the end of 2010 or early 2011. I have been fairly steadily going downhill for years, but during the last month got much, much worse. I have been in the hospital twice this month and third time to er. I'm getting worse by the day. I do have Addison's and hypothyroidism, but they are under control, or supposedly are. I know many on here know the feeling I describe as "my body shutting down". Any physical exertion leaves me feeling very sick and lasts for days. I can only make it to the bathroom about 15 ft away. My legs have gotten really weak, really fast. I have had mris and other testing by neuro and doesn't think it is neuro, in nature. It feels like my heart and lungs are working very hard, yet they aren't. Also, had angiogram that came back normal. Anytime I get my heart rate elevated, even in the upper 80s, I feel incredibly sick. I have a serious heat intolerance, and I can't stand for more than maybe a minute without feeling really lightheaded and nauseated. My body shakes after I do get up and go to the bathroom. I have been checked for Lyme on more than one occasion. I feel like it's going to kill me sooner than later, if Drs don't figure it out. I guess I want to hear reasons I shouldn't think I'm going to die. I know it sounds melodramatic, but that is what I instinctual feel. Thank you so much much for reading.
     
    merylg, MeSci and Jennifer J like this.
  2. Deltrus

    Deltrus Senior Member

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    1. I think that you are getting worse, but things that cause you to get worse very fast are usually acute and not chronic. I expect that you will return to how you were before this month. Chronic health problems follow gradual patterns.

    2. If you feel terrible and are sick, then your brain is more predisposed to thoughts of doom and death. Realize that your brain is leading you around into bad mental spaces. Try to find a good book, tv show, anime or something to distract you.
     
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  3. Soundthealarm21

    Soundthealarm21 Senior Member

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    Dallas, TX
    Have you been tested for mycotoxins/mold either in your system or in your living space?
     
  4. Uk125250

    Uk125250

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    Thanks, they did tons of tests in hospital and found no infections.
     
  5. Uk125250

    Uk125250

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    Cold Spring, KY
    I believe I was tested for mycotoxins/mold while in hospital. Have not had house checked.
     
  6. Soundthealarm21

    Soundthealarm21 Senior Member

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    Dallas, TX
    Well it's not a normal test in hospitals. At least not any I've been. It might be a good idea to get your house checked
     
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  7. Uk125250

    Uk125250

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    Cold Spring, KY
    I specifically asked a dr if I had been. I thought he said I had been. Maybe I misheard him. I didn't sleep much at all in the hospital. I sleep horribly, but even worse in there.
     
  8. Woolie

    Woolie Senior Member

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    Hi @Uk125250, sorry to hear of your plight. Many of us here have had similar experiences - that feeling that you're so ill, you're going to die.

    Like @Deltrus said, the fact that its happened so fast is actually reassuring. It sounds to me like you're in the middle of what we call a "big crash". Big crashes can be dramatic, but the good news is they tend to pass. The trick is to rest and just try to go with it (I know, easier said than done). Of course, you should also get checked for anything else, just to be sure. But once all the usual suspects have been checked, there's nothing for it but to wait it out.

    What causes these major crashes? Some people have linked theirs to overexertion, a period of stress at work, or such like. I used to have huge crashes, where I felt feverish and shaky and could hardly speak, and they didn't seem to be related to anything I did. I thought maybe my body had encountered some new virus that overstimulated my immune system. The longest of these lasted 10 weeks. That's the longest - many were shorter.

    Think about what you can do right now to make the experience less awful. Rest? Keeping cool? Lying down? Sleeping? Would pain killers help? Some people swear by NSAIDS like nurofen. If your symptoms are affecting your sleep, I'd really recommend you mention that to your doctor. Just sorting out sleep can make a huge difference to how you feel in the meantime (and I think it probably helps your body recover).

    Also, like @Deltrus said, try to fill the time you're wake with anything you can handle that can distract you. Reading or watching tv/movies, if if doesn't do your head in too much. You're probably also feeling really anxious about all the stuff you're not getting done. Try to find someone you can offload your worries on. When you're sick, its really easy for these kids of worries to get out of control. Talking about them really helps put things in perspective. You're the only thing that matters right now - just concentrate on getting through this.
     
    Last edited: Jul 12, 2016
    MeSci and Jennifer J like this.
  9. justy

    justy Senior Member

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    You have Addisons and hypothyroidism? are you sure you are adequately medicated for both of these diseases? are you sure there is no addisons issues going on?

    It could be a regular ME crash/relapse and perhaps you have been overdoing it. you say you have been tested for lYME - what tests did you have? lyme testing is notoriously unrelaibel.

    Do you have allergies or MCS? If so then you could have MCAS - this can cause these kind of severe being ill epiusodes - I had one for months two years ago and no one could work out what it was - I was really really sick and couldn't breathe or walk or eat. Turns out it was my MCAS getting worse.

    I really hope you find some answers soon. My suggestion is that whaterver t is you rest as much as possible.
     
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  10. Valentijn

    Valentijn The Diabolic Logic

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    It's best to get a copy of your records. Doctors lie, especially if they think ME is psychosomatic.
     
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  11. musicfan50

    musicfan50

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    I find different "emergency" tweaks can get me through: 1. apple cider vinegar in cool water (not hot as it destroys enzymes) 2. berrocca multi-vite in warm water (i know its got artificial sweetener) 3. sports drinks like Gatorade containing potassium ( I have found sometimes work amazingly I know everyone screams its got sugar) 4. antibiotics can "right" a bacterial imbalance ( conversely probiotics can sometimes work, but I often get a herx reaction later ). I often find I sleep better with a / b's. 5. EFAs for sleep (where I am I can get a blend of ALA, SDA and GLA that helps sleep. ) 6. Zinc is supposed to be good as a precursor for GABA the sleep chemical ( but not to take too much. ) Hope that helps.
     
    Last edited: Jul 12, 2016
  12. caledonia

    caledonia

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    Cincinnati, OH, USA
    Sounds like POTS/orthostatic intolerance. Could be related to the Addison's?

    I googled Addison's and POTS saw several posts where people can get misdiagnosed with Addison's when they really have POTS.

    https://www.google.com/webhp?sourceid=chrome-instant&ion=1&espv=2&ie=UTF-8#q=addison's pots
     
  13. Uk125250

    Uk125250

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    Hi, I absolutely do have Addison's. I've had acth stim test, which is the only way I'm aware of to get definite diagnosis. I do think I might have pots, also.
     
  14. Uk125250

    Uk125250

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    Thanks, I do take a zinc magnesium supplement for sleep. I drink pedialyte, as it is lower in sugar than Gatorade. I haven't tried the apple cider vinegar. How much acv to water?
     
  15. Uk125250

    Uk125250

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    The Addison's and hypothyroidism are adequately medicated. I've even went up substantially on my prednisone to see if that had any positive impact. I do not have the signs of an Addisonian crash. It sounds logical this would be the case from the way I feel, but is not what is happening. I do have some allergies, but Drs don't think that is it. I looked up mcas and I don't seem to fit the myriad of symptoms discussed in the article I read.
     
  16. Uk125250

    Uk125250

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    Cold Spring, KY
    While I have seen a plethora of Drs over the years who were skeptical of what I explain to them, the dr I was asking does believe the severity of my symptoms. He also does not think it is psychosomatic. I even saw a psychiatrist the first hospital stay this month. He doesn't think it's psychosomatic, either.
     
    daisybell likes this.
  17. Uk125250

    Uk125250

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    Cold Spring, KY
    Thanks. This crash has been different. I typically feel a little more stable after lying in bed without moving much at all for a few days. I'm not getting any rebound, whatsoever. I was basically bed bound before this, now I'm totally bed bound. Talking takes even more out of me. Typing this is very hard. It just seems whatever is the underlying issue has "ramped up". Gradual downward progressiom for years and years, then sudden abrupt decline.
     
  18. musicfan50

    musicfan50

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    Hope things are better.. In answer to the apple cider vinegar, I would take two desert spoons in a 250 ml glass of water.
     

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