The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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what has been your most bizarre symptom/symptoms?

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

  1. Tammy

    Tammy Senior Member

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    I've had my share of bizarre symptoms...(on top of my baseline fluish feelings).............one that comes to mind is when I went through a period of feeling like someone had placed extremely heavy weights just on the top of my feet................I didn't feel weight anywhere else..............so when I walked I shuffled along because I could barely get my feet up off the ground. During another period I had a very strange sensation when I walked or moved forward that my "ethereal" (don't know how else to describe) self was tracing behind me...........trying to catch up. Another way to describe it is going from point A to point B.........once I reached point B it felt like part of myself was still at point A and all the points in between A and B.o_O
     
    Last edited: Jun 24, 2015
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  2. Mogwai

    Mogwai

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    - Exploding head syndrome. Thankfully that was only for a few nights.

    - My whole body vibrating like a mobile phone - sound included. Again, just for a few nights.

    - When I'm standing, I often get the sensation my left leg is sinking into the floor. This actually feels pretty cool! I'm so use to it now...
     
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  3. sarah darwins

    sarah darwins I told you I was ill

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    Ditto, minus the sound (you're weird! I'm not, I just vibrate ;) ). Now it's very occasional, but at one point a few years ago it was happening so often that I started searching around the house and locality for some vibration source. Then I started wondering if I was finally going mad. Or if aliens were probing .... okay, wasn't too serious about that one, but it did cross my mind.

    The other day someone mentioned "vibrating insides" on another thread. Is this a common-ish thing in PWME? And has anyone come up with any kind of (non-extraterrestrial) explanation?
     
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  4. msf

    msf Senior Member

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    Well, since I've fell ill I've noticed that I have a really strange effect on doctors - when I meet them they forget about logic and science, and end up talking about 'belief systems' and 'psychosomatic disorders.' I'm worried that ME might be contagious, and these doctors suffer more mental impairment than I do.
     
  5. worldbackwards

    worldbackwards A unique snowflake

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    No idea about the aliens, but I do get a kind of juddering feeling running through the body sometimes, especially on the ribs but it seems to run through the legs as well. I get it especially when I've been talking to someone too long or when I'm sleeping poorly. It's one of those things that I file under 'strange but not particularly dangerous' and leave it at that. I learned a long time ago not to run off to the doctor with anything so insignificant as symptoms. :)

    My most bizarre symptom (historical, thank god) is far too embarrassing to report and I suspect I wouldn't be thanked for it anyway!
     
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  6. Valentijn

    Valentijn Senior Member

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    Literally turning blue while trying to sleep. It was probably a particularly bad OI episode, where I didn't even need the orthostatic trigger for everything to go wonky. Anyhow, I felt horrible, got out of bed and hobbled downstairs to where my fiance was still watching TV, and my face was very white and my fingernails had turned very blue.
     
    Last edited: Jun 25, 2015
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  7. Apple

    Apple Senior Member

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    I've also had/have the vibrating/buzzing sensation. Mentioned it to my doctor who suggested I go on antidepressants. o_O So never mentioned it again.

    Somewhere in the first few years of my illness, I used to get severe palpitations at night time lasting several hours when laying down, the only way to get rid of them was to stand up, only for them to return as soon as I got back in bed. Like the opposite of PoTS, which I now have.

    Another strange symptom that I have had is a feeling that the walls were coming in towards me, followed my body jerking. That seemed to go away after starting b12 and then i started feeling as if I was falling, again, followed by bodily jerking. Similar to when you sometimes 'fall' as you are about to fall asleep. Mentioned it to two GPs, they were both disinterested and said they didn't know why it was happening.

    I also believe I had an episode of gout when I was 16. Didn't go to to hospital/docs as I was housebound/terrified of hospitals but I don't know why the hell I would get that at that age as I met none of the risk criteria. :s
     
    Last edited: Jun 25, 2015
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  8. sarah darwins

    sarah darwins I told you I was ill

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    Naturally. Because depression is well known for making your body vibrate

    Honestly, when I was having the major vibe phase I was feeling a bit better than usual, and not a bit depressed. I was just vibrating!!! I'm glad I didn't attempt to explain it to my doctor. He was already trying to force feed me antidepressants, so If I'd mentioned the vibrating thing he'd likely have tried for committal.
     
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  9. lnester7

    lnester7 Seven

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    I went blind (worst from left eye) (I have Dysautonomia and my pupils went out of whack) I kept going like nothing was happening while I was having the freak out of my live!!!!

    my favorite:
    Well I came flying like a super hero from my office (totally horizontally flying w speed and all).
    I landed on top of a coffee table, while the force of my fall took the cubicles walls and everything that was hanging in them down, monitors, books.... The other office personal behind the walls, got surprised and went runnign as if an erthquake happened. While they all realized that I had landed on coffee table and that was the impact from the fall. I was making an spectacle of myself by hugging a ash tray (YES an ash tray) because as I just kind of passed out the terrrible nausea hit and in my confused state I was convinced that if I hold to dear life to that ash tray, it would hold all that food coming up.

    As I came back to be more concious (still could not hear and ,was seing mostly black) I see my office mate mouthing WTF, why would you jump like that and she was tryign to pull away my dear ash tray. I explain I was nauseas to leave me alone (while still holding to the ashtray as if a life line) and she says "no, are you nuts that won't cut it" and was trying to give me a trash can instead. I was very confused and not very reasonable at the time, and the WTF face of everybody else not helping.

    At this point everybody trying really hard not to laugh at me, devided between the confusion and the absurdity of the situation, Yes I was still fightinng over the ash tray and people reasoning of why the trash can was a better idea.
    :lol::lol::lol::lol::lol::lol::lol::lol::lol:.

    By the way, What really happened was that, as I stood up with a lot of energy from my chair and passed out mid air (by then not used to passing out that strong and fast) I hit the armless, well positioned, right at the door, office Chair w wheels as I was passing out, that is why I had so much momentum coming out, and all they saw was me flying really hard out the door LOL.:rofl:
     
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  10. Mij

    Mij Senior Member

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    Sitting in a chair but having the sensation that I was sitting a few chairs over. I explained this to an internal medicine doctor and he explained that it was neurological and that he's had other patients experience this too.

    Walking and feeling as though there was no gravity or I was going to fall through the ground.

    Feeling as though someone is pushing me forward.
     
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  11. Tammy

    Tammy Senior Member

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    I just thought of another one that happened to me on my one and only vacation since CFS. The trip was obviously too much for me and about 4 days into the vacation it kept feeling like there were small earthquakes going on. It felt like the ground was moving. I kept asking other people if they could feel the tremors and it shocked me that they didn't feel anything. It kept getting worse and worse until it felt like the floor was coming way up.............I actually remember another member describing the same thing...............like the floor was coming up.
     
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  12. Strawberry

    Strawberry Senior Member

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    Voodoo.

    Really!

    I have the buzzing inside my body, mostly in my legs. I think it means I overdid it, which is like almost daily. My legs and tummy are buzzing right now.

    But the worst and most bizarre symptom I ever had was when the vibrations actually started. It was a vibrating ball, about the size of a tennis ball, and it traveled around my body. It could move about a foot within a minute, so it moved pretty quickly and very noticeably. One time it went into my head and traveled around, and it sounded like I had put my electric toothbrush to my skull and was moving it around. But mostly it liked to move around the torso, then settle on my spine and sit there and grind on my spine until I almost couldn't walk from pain. I felt I had injured a disc. I felt I must have been out of my mind when I had to explain that symptom to my doctor. I could almost swear that someone had a voodoo doll and an electrical wire. That happened at the same time as my "boa constrictor" in my bed that would squeeze my waist until I could barely breathe, and that one at least is a fairly common symptom among MS patients. So he sent me to a neurologist instead of the loony bin.

    But thankfully that went away, and now I just have the body vibrations. Probably because I am resting more so it is very mild.

    And no, I don't really believe in voodoo. But it was my only explanation that made any sense. Maybe your aliens know my voodoo doll?

    @Tammy Last time I went on vacation my "building" also swayed with earthquakes every time I tried to unlock my front door. I assumed it was from riding the elevator, but it was weird! I do get vertigo though, so not so bizarre for me.
     
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  13. trails

    trails Senior Member

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    Imaginary smells! Not a particularly unpleasant experience. Rather the opposite actually. Usually a Yankee Candle Christmas Cookie smell. Once a cotton candy smell. Several times a refreshing, clean soapy smell. :)
     
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  14. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I had an attack of vertigo that started abruptly one morning and lasted for days. When I got out of bed that morning the room was spinning, so I crawled on my hands and feet to the bathroom, then crawled to the kitchen to get breakfast.

    I don't know how I managed it, but I eventually saw a doctor who decided it was an inner ear disorder. He gave me some exercises to give the inner ear vestibular apparatus a workout (bend forward and sideways multiple times). I think the exercises worked and I think I was also given some medication for motion sickness.

    This never happened again, although there have been times when I've been sitting in a chair and I get a strong sensation of spinning or that I'm going to fall to the side, so I grip the arms of whatever I'm sitting in. I've been alone each time this has happened so I haven't had to explain what was happening to anyone else.

    ETA: Now that I think about it, this vertigo lasted about a month and it wasn't during a time when I had an active viral infection.
     
    Last edited: Jun 25, 2015
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  15. Snowdrop

    Snowdrop Rebel without a biscuit

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    For about a year I was highly electrically charged. I would get electrical sparks off of anything metal. It would happen every time all day long every day for a long time. It got so I was reluctant to touch metal. I would cover my hand with cloth before touching anything metal especially opening doors.

    One day I was opening my car door, the key head was covered in plastic so should have been fine but when I put the key in the lock --I'm not kidding-- a bright thick arc of green light went from the door to my hand. The next day when I went to open the car door my daughter was with me so I held the key out and asked her to open the doors. When I passed the key to her we both yelped at the shock I give us and dropped the keys.

    It stopped as suddenly as it started and I haven't been that electrically charged since. Heaven only knows what this was all about but believe me it was unpleasant to deal with the constant shocks especially at first when not paying attention I would keep forgetting it would happen.
     
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  16. Tammy

    Tammy Senior Member

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    There seems to be a whole lot of shaking going on!:eek:
     
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  17. PennyIA

    PennyIA Senior Member

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    One that bothered me the most was that one side had less temperature sensing abilities. Doesn't seem that serious. But be standing outside with a mild cool breeze and to be able to feel it on half the face but not the other half??? drove me over the bend, it completely throws your whole focus on the breeze and with fuzzy brain and all just drove me batty.

    The most concerning to me was the lightning strike pain. Sudden jolts of pain, striking somewhere like a bolt of lightning, gone almost as quick but AGONIZINGLY PAINFUL.

    The most concerning to the docs was the physical lumps that formed under my skin and would 'unform' or disappear after a good night sleep - reappear the next day. I suppose because it was the first symptom that they could feel and couldn't dismiss unlike the dizziness and exhaustion, numbness & tingling, and all the gut issues... it was actually a physical visible and feelable proof that meant it was no longer all in my head. Of course, they assumed the rest was still all in my head.
     
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  18. GracieJ

    GracieJ Senior Member

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    Developing early onset osteoarthritis, something mentioned many times as being connected to ME. I woke up one summer morning completely unable to move. I lay there wondering what on earth could happen overnight to cause full paralysis. I could feel my bedding around me, so I thought, Okay, I am going to start consciously wiggling body parts and see what happens. It was two hours before I was able to flip myself out of bed, straight onto the floor, of course, then I just stayed there for another hour or so, mostly trying not to cry. I made a doctor's appointment as soon as I could crawl to the phone. I had a three day wait ahead to see him, and it took most of the three days to regain full movement.

    My doctor listened to me, checked a few things, asked questions, then told me it was osteoarthritis. His diagnosis was accurate; time proved the continued symptoms as textbook.. He had never seen such a dramatic onset of it, however. Leave it to me to develop the odd onset.
     
    Last edited: Jun 26, 2015
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  19. PennyIA

    PennyIA Senior Member

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    I had that - lasted for three months. I didn't recognize it at first as I'd had some mild dizzy spells. So I got up and took two steps and landed on the floor. Stood up, fell again. and realized that ... woah... maybe walking/standing isn't going to work.
     
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  20. Effi

    Effi Senior Member

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    The first couple of years my body felt like it was burning up (no fever though), people wouldn't be able to stand too close to me apparently cause I radiated heat. Apart from my belly, which felt cold, like corpse cold. There was nothing I could do to influence it.

    Also now when I am close to PEM my brain sends a signal for movement and my body won't react. It can take up to 15 minutes to be able to stand up. (Just thinking that maybe this is more common than I thought?)

    And one other thing that is hard to explain. A sudden sound in my right ear, almost like a hammer or something, then I can't keep my right eye open but can't close it either and my eyes burn like crazy.

    Pretty much all the symptoms I've ever had have been answered by doctors with a very helpful shrug. I gave up telling them about my symptoms. :meh:
     
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