A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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what has been your most bizarre symptom/symptoms?

Discussion in 'General Symptoms' started by Tammy, Jun 24, 2015.

  1. BeautifulDay

    BeautifulDay Senior Member

    Time to revive this old thread. For many of us there are too many bizarre symptoms to choose from. My top 4 are:

    4) Twice I've had odd hallucinations. First, smell hallucination. Second, music hallucination when water was running. The MIND diet for cognitive loss has helped and I have not had any more hallucinations since starting the diet.

    3) The occasional feeling of a spot on my leg or back being on fire (the size of a quarter). I touch it and it's not on fire. But in my head, the nerves and brain are telling me it's on fire.

    2) Feeling and seeing the floor at the Smithsonian National Museum of Natural History as being tilted at a serious angle. As if walking through a Fun House at a carnival. Asking my husband and daughter if there was something wrong with the floor. Sitting down along the wall knowing that it was a matter of too little blood getting to my head (low pulse pressure) and if I didn't sit down soon, it would get much worse.

    1) Getting lost a few blocks from home, forgetting what I've just said or eaten, getting my son and brother mixed up. In my 40's going to Early Alzheimer's meetings because of the severe cognitive decline. (Yes, I'm seen at several top University Hospitals for this one symptom. The University Hospitals have done nothing for this symptom, other than to prescribe Donepezil - the Alzheimer's/dementia drug). The above MIND diet is what has helped me the most. My memory still has lots of issues, but it's better than it was.
  2. wastwater

    wastwater Senior Member

    I've had the tilting thing and forget where light switches are or what lights they operate and what's in what cupboards
    BeautifulDay likes this.
  3. Wonko

    Wonko Senior Member

    The other side.
    I've been known to not be aware that lights exist, let alone that light switches exist, wandering around in the dark cursing but having no idea a solution might exist, so much effort being expended to move without breaking things none left for realising there might be a solution.

    If you can remember what a cupboard is and how one works then you're having an okay day. On a bad day I can't figure out how to drive a sock, I know it's a foot related thing, but how it operates, trial and error job. Don't talk to me about shoelaces :p

    Cognitive impairment is.......erm.........not great, at times,
    BeautifulDay and wastwater like this.
  4. TiredBill

    TiredBill Senior Member

    Los Angeles
    Aside from the bed-soaking night-sweats in the early phase of this illness (which may not seem bizarre to any of you, but were very bizarre to me to me back in 1984) the oddest thing I've experienced is exposure to certain chemicals causing what feels like a very unpleasant ringing sensation in my nervous system and very bad feelings that would often set up a crash.

    Especially early in the disease, exposure to even small amounts of cigarette smoke or acetone would provoke a cascade of reactions in my body, and I'd often have a multi-day crash/re-lapse follow.

    These days I still react off these and other chemicals (there is something in spray-on sunscreens that kills me) but I tend not to go into a full relapse. More coughing attacks and bad feeling that pass in an hour or two.

    Other than that, completely normal :D

    kelly8 and BeautifulDay like this.
  5. Mrs Sowester

    Mrs Sowester Senior Member

    I tried to pick up a chip only to have it appear move away from me. That sort of thing happened a lot during the first 3 years. I'd try to take a shop receipt and miss somehow.
    I forgot how to cross roads at one point too, just stood there on the curb thinking 'I'm sure I've got to wait for something' and didn't know what to do next. People were still telling me not to stop driving at that point, looool.
    BeautifulDay and Wonko like this.
  6. BeautifulDay

    BeautifulDay Senior Member

    Yep, I've had the light switches mix up (or gone missing), thinking my husband switched the hot and cold in the shower, and reprimanded him when I thought he didn't answer me (only to have him and my daughter tell me he did just answer my question). It takes lots of patience on all parts in this house. My doctor once gave me a script to get training to learn tricks to get around the memory issues (some kind of occupational therapy). The problem -- nobody in my tri-state area provides such training.

    So I made my own list of things that help with my memory loss. 5 foot calendar in kitchen with all the kids activities and doctors appointments. Lots of alarms on my phone for everything. Carry around a note pad and leave stickies where they will be seen with reminders. The kids remind me by leaving me their "mom to do list reminders" on the middle of the screen on the kitchen TV. A calendar in the bathroom so I can mark when I showered and washed my hair. A note going up the basement steps to remind me to check that I really turned on the washer and dryer. Etc.....

    We used to laugh at the fact that when we cleaned out my mother in law's house, we found 4 air purifiers new in their boxes along with multiple unopened other items. Now I'll buy the same thing over and over again during the week, remembering that we need this -- but forgetting that I already bought it 3 times.
    kelly8, Wonko and Mrs Sowester like this.
  7. Misfit Toy

    Misfit Toy Senior Member

    OMG...where to begin. When I first had EBV, I had massive hyperthyroidism.
    I became dehydrated for no reason. So crazy.
    In 1990, I had one pill or a supplement and ended up in the hospital for a month with insane vomiting, gastritis and esophageal spasms. MCAS perhaps?
    Right after that..obsessive thinking...was put on Trilafon..a massive antipsychotic drug.
    In 1992 I had a blistery rash all over my body for 2 years. It totally went away after I had my ovaries worked on during surgery for PCOS. In weeks after the surgery, the blister/rash totally went away. WHY?
    Horrible sciatica caused from......drum roll......endometriosis sitting on nerves in my spine. I had back surgery when it wasn't necessary.
    The worst symptom of all was having my thyroid removed and becoming totally disabled due to inability to take the thyroid medication that I need. No one else out there like me. Depersonalization from the thyroid removal. Worst situation ever from whatever this illness is.
    Also, inability to take IVIG for CVID. Another awful situation.
    Life saving meds, I can't take.
    Last edited: Sep 26, 2017
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  8. Forbin

    Forbin Senior Member

    About six weeks after the onset of ME/CFS symptoms, and after many tests had shown nothing except to confirm that I'd had some kind of bad infection several weeks prior to onset (I'd already reported that infection), I developed an odd rash over my arms, trunk and neck. It consisted of widely scattered, well-defined, pale pink spots about the diameter of a pencil eraser. They were not raised; rarely overlapped, did not itch and were not painful. My parents were worried, but I was excited. At last, I thought, here was physical evidence of something wrong. On talking to my doctor, he said to wait a couple of days to see if it would go away. It did go away, and that was the extent of my doctor's interest in it.

    I didn't recall ever having had a rash like that before and I've never had one since. I've looked into what it might have been, and the only things I've found seem to be confined to viral infections in very young children, specifically roseola, a viral disease of children caused by HHV-6 or HHV-7.

    But, surprise, according to the Wikipedia article on roseola...
    [About a month after onset, I was tested for EBV and was negative. I was never tested for HHV-6, although I'm not sure if they had a test for that in the early 1980's.]
    Last edited: Sep 26, 2017
    Tammy likes this.
  9. kelly8

    kelly8 Senior Member

    mine has to be smelling wierd pleasant smelling things randomly. It doesn't drive me crazy, probably drives the people around me insane as I ask a bunch of times "do you guys smell that! Isn't it amazing?" Kind of smells like candles or cookies or something. I've never tried telling my Dr. She already thinks I'm Looney. :confused:
    Tammy and belize44 like this.
  10. belize44

    belize44 Senior Member

    My most recent bizarre symptom was a sharp, stabbing pain just under my left rib cage in the vicinity of my spleen. It wasn't my stomach or my heart or my spleen, though. I tried to sleep but it got worse until I could no longer ignore it so I had to go to the ER. Of course they couldn't find the answers (they hardly ever can since they are equipped for what they classify as real emergencies only) and after a fruitless night I came home none the wiser. The pain has not returned, either.
    Tammy likes this.
  11. zenzen


    Moorpark, California
    Being at work in my cubicle and feeling like I'm disconnected to what is going on around me and the voices of my coworkers, and feeling like I'm absolutely stoned out of my brain...like LSD stoned (did it in the 70s). This doesn't happen as much anymore...thankfully.
    Tammy likes this.
  12. i-lava-u

    i-lava-u Senior Member

    Utah, USA
    feeling of cold wet spots on by body, as if someone patted me on the back w a wet hand and it soaked thru clothing onto my skin...touch the area and its completely dry
    Tammy likes this.
  13. BadBadBear

    BadBadBear Senior Member

    Rocky Mountains
    When my brain is frazzled and tired, I will often feel either smaller or bigger, and accordingly, people around me that I see all the time will seem relatively taller or smaller. So if I feel small, other people will seem bigger & taller. If I feel big, they seem smaller. Its very confusing for my poor brain, like being Alice in Wonderland and not knowing which pill I took!

    Also get disconnected hands, will look down when I play piano and I feel sure those are not my hands. So I try not to look.

    Don't know if its inflammation or low energy, but it causes alot of pseudo-psychological issues. Everything got a lot better once I found a doc that would prescribe Cytomel. Instant sanity!
    Tammy likes this.
  14. maybe some day

    maybe some day Senior Member

    San Francisco bay area
    Inner ear makes a loud snapping or click sound.when lying down. Muscles seem to vibrate or sway side to side upon waking.
    Feels like Im falling backwards while laying in my back
    Tammy likes this.
  15. percyval577

    percyval577 Remember

    Ik waak up
    My most bizarr symptom should be not being myself. All things I am:

    I made up a list one year ago and have come to the amount of fifty three symptoms.

    Now reading through the forum, the list seems not to be complete by far.
    Strange sickness that is augmenting when looked at.
    Last edited: Feb 26, 2018
    Tammy likes this.
  16. bertiedog

    bertiedog Senior Member

    South East England, UK
    My most weird symptom only happens very occasionally these days. I think its connected to migraine.

    Firstly I will feel very dizzy when I am looking at something and then my head feels very full and uncomfortable. I will start sweating badly and my legs empty. Then if I am out walking my dog and this is the most likely time it will happen then I drift to the right and cannot walk straight because of this sort of dizziness. I can feel a bit panicky too and have to talk firmly to myself that it will soon improve.


    Luckily a low dose of beta blocker helps to calm my nervous system and a prochlorepazine plus lots of rest and 30 minutes on my oxygen concentrator helps all the symptoms and I can go back to normal relatively quickly though it can leave me with PEM and my legs take a lot longer to recover from this. I might also end up with a migraine headache several hours later.

    Mel9, Tammy and PatJ like this.
  17. PatJ

    PatJ Forum Support Assistant

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  18. percyval577

    percyval577 Remember

    Ik waak up
    Thank you so much.
    As soon as I am able to I will look at them realy properly, augmenting myself even more.

    But for docotors it might get even more complicate.
    PatJ likes this.

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