CFS AND mild Tourettes? anyone familiar?

Discussion in 'Fibromyalgia Main Forum' started by Chilene, Oct 3, 2008.

  1. Chilene

    Chilene New Member

    this is about my third post regarding my noticing some facial tics (in addition to the "restless arm" (more than restless leg, really...)... so here's an update. with other things! please forgive any overlap.

    i had noticed facial tics a little over a month ago. since i was totally crazed busy and stressed with getting my continuing disability review finished, and then had taken a short trip, i'm not sure if the tics were at bay for a few weeks, or whether i just didn't notice them. i DID push myself alot this summer, too, trying to walk outside alot more. not sure if that has any connection...

    then i noticed the tics again, bad, in the last week. i did all the usual reading online about tics and this crazy wild energy i get every time i stand up at night (i even clap my hands and sing alot... repeat song phrases over and over (yes, swear, even). i feel like i'm full of adrenaline (yet i nearly fall over from exhaustion when i sit or lay back down!). this has been going on for years. (and yes, i also have cfs symptoms where i'm exhausted from what doesn't exhaust healthy people).

    i had always considered that just a crazy combination of the dd (i can't function for an hour in the morning and get up very late, like NOON... and then have a strong cup of coffee)... and i also have always been a "night person"... and then there's my wacky personality. and i do love to dance and sing... (but still doing "cheerleading cheers" at 44 for a few seconds each night?!)... again, i always considered that the "forever young and wacky" me.

    in my online reading of symptoms, what kept coming up was MILD Tourettes Syndrome. though in most cases, Tourettes starts in childhood, adult onset was described in one case of a vehicle accident and injury (ALL of MY fibro/cfs/neuro issues began after whiplashes and discovering herniated cervical discs/spinal stenosis)...

    also... i was suprised to learn that many people can live with MILD Tourettes Syndrome and not even realize that they have it. things like constant throat-clearing are tic-related, and hard to recognize. i, personally, have done the throat-clearing thing for YEARS, and just assumed it was allergy related. not sure. but my own mother did the the throat-clearing thing for as long as i can remember... and it is possible that even she could have MILD Tourettes. it is often inherited.

    i also learned that (as with many diseases!)... there are symptoms of Tourettes that i just chalked up to fibro/neuro stuff that lots of us on here have, like: heat sensitivity, touch sensitivity... and a weird one that i just began noticing about a year ago: hypesensitivity to any hair touching your skin (it feels tingly-icy for me).

    i am also touch my chin and face and find myself "holding" my chin or face as if to keep it still. i feel slightly jittery all over and didn't always before. do this with my hands by holding things, water bottles, etc., constantly... like a way to contain (or release pent up energy?)... it's like that feeling of HAVING to move your legs when sitting for a long time, or you'll go nuts.)

    also... lately, i just can NOT sit still no matter what, to the point where i feel like i've had 3 pots of coffee. (i know, AND i'm still fatigued under all of that. this is sounding CRAZY, i realize. but real. just like all the other symptoms.)

    it's getting exhausting to not EVER be able to relax. i keep wishing i could have a drink or take a drug to relax me, but i'm allergic to all that (yep, meds, too).

    Yes, i am trying to cut out all coffee. i only have one cup a day, but even on the days i don't have it, this stuff goes on.

    another thing to note: i have constant herpes outbreaks that i know for a fact give me strange nerve pains... and i've been having some kind of viral facial/body rash (more like a viral pimples that itch in addition to the herpes... NOT herpes themselves. on my chin and back/chest). gross; sorry. so i wonder if maybe, sometimes, if this could also affect motor/nerve stuff like tics? (yep, been to a derm about this and need to go again).

    true, too, that i am in alone toooo much and am tooo aware of myself.

    i'm having the darndest time trying to get a sooner neurology appointment. don't think my internist is the best person for this tic stuff, though i am getting referrals for neuros through her.

    anyone relate to any of this?... i'm trying to stay calm. it's all so weird, as i deal with NOT being able to move from exhaustion and now also not being able to STOP moving!... (which makes me clean or keep go past my energy allotted, which of course makes me even more shaky/tic-cy)...

    i KNOW that it can be not the best idea to "diagnose" ourselves... but i honestly feel like i'm not making stuff up here...

    if you read this far, thank you!!!;)

    (it's always SOMEthing!;)...

  2. SweetT

    SweetT New Member

    I don't know what to tell you, but I read your post because my oldest daughter has mild Tourettes. As a young child, she did the throat-clearing, wrinkling her nose, and making the funny noises (which she still does). She also has OCD.
  3. gapsych

    gapsych New Member

    It's me again. When did you say your neurologist appointment is? If you symptoms are getting worse, maybe it would be a good idea to let your internist know to see if you can get in sooner.

    Keep the board updated and take care.


    Edited to add. I did not know this icon was going to appear and I can not get rid of it.
    [This Message was Edited on 10/03/2008]
  4. Chilene

    Chilene New Member

    thank you for your responses.

    gapsych!: i can't get into the neurologist (that i saw and liked years ago) until JAN!... another in that (referred from internist) office was DEC!!!... i'm asking to be on the cancellation list and also to be referred to other neurologists. part of the problem is that the nurse often takes days to get back with me (at my doc's office). i have to keep leaving messages to get doc referrals (and forget hearing from my doc personally. never happens anymore. but WHEN i see her, she's a GREAT doctor, which is why i don't see someone else).

    and the neuro docs won't take me without a referral (it's a pain in a big city, top-ranked university hospital facility)...

    but checking in with you all is helping keep me on my toes.

    not sure what any doc can do anyhow, since i can't take any meds... i'd have to go the alternative therapy route, like biofeedback, maybe.

    thanks again. hope this made sense. i'm tired.;)

  5. gapsych

    gapsych New Member

    Just a thought. When you are having an especially bad attack, what about going to the ER?

    Another thought is to have someone video tape you when you are having these experiences.

    BTW, I now live two hours south of Chicago. I just moved back to my home town after living in Chicago for 12 years.

    The cost of living is cheaper here plus I am nearer to my family.

    Take care.
  6. jasminetee

    jasminetee Member

    I'm your age and I've had CFS since I was 20, maybe for my whole life. Your description of what you go through is very similar to what I experience. I too have thought of Tourettes but I think this is all really just part of CFS which is a neurological illness and does affect the brain in all kinds of ways. I've heard CFS specialists say that CFS is the great mimicker of other diseases. That's what I chalk it up to. You sound normal to me for someone with CFS ;).

  7. Chilene

    Chilene New Member

    gapsych-- well, the twitches are pretty much all day on and off, worse when i'm overtired or had any coffee (starting to not love coffee now!)... the singing and clapping, talking to myself and dancing a few seconds are sporadic (again, i just thought this was normal, hyper behavior, for awhile... nothing that would take me to the ER... )... and the videotaping is an idea... but i live alone and this stuff happens moreso between 10pm and 2am!... i'll keep it in mind, though. good idea.

    yeah, as much as i love Chicago (been here 20 years, not a native)... i'm ready to slow down somewhere quieter and cleaner, often. there is NOwhere for me to sit outside. no grass, really. no porch, even (it's enclosed). and 2 1/2 flights of stairs! on the other hand, i have great neighbors. (but i digress!) DO enjoy your new home;)! that's wonderful.

    teejkay--thanks SO much for your reply!!!... just knowing i may not be such a "freak" in even this cfs crowd, makes me feel better!...

    (now, if only these MIGRAINES would go away. grrrr. they're worse than any of these neurologic things... i didn't have them for 8 whole months... they come after eating a meal, so i think it's gastro or blood sugar-related, not allergies... because it's either after EVERY meal or not after ANY meals, in cycles). wish i could take ANY pain meds. now allergic to aspirin and tylenol, too!!! but i totally digress. sorry!)

    maybe i'll get into that neurologist before JANUARY by cancellation. lol.!



    [This Message was Edited on 10/09/2008]
  8. PainPainGoAway

    PainPainGoAway New Member

    So sorry to hear of this, as it sounds very annoying! I had some problems with a twitch in my chin and my neck would move in a weird way. It turns out I had a bone spure in my neck that was irritating the facial muscles. For me it was worse when sitting and so annoying!

    I didn't have the extra issues you are dealing with, but the doctor told me mine was mild compared to some peoples. After awhile my neck became "frozen" (dystonia) and I stayed with my head cocked to one side for months, then it went away and the "tics" have stayed gone. They gave me shots in my neck.

    I noticed you are a photographer...well, that was one thing that made me jerk more, holding the camera!!! Also, i can no longer hold a baby (boo hoo).

    I would def stick w/ trying to get in to see a neuro, whether or not you can take meds...let them have a good look at you and see whether or not it could be from your neck. At times it looked as if I was saying yes, and couldn't make eye contact or look at anyone taller than me w/o it getting irritated. It's still not perfect now, but no where as bad as it was.

    I think part of mine was damage from being rear ended.
    I have a tremor in my head (from a genetic disease) and occasionally the neck will jerk around but it's usually if I've been taking pictures, or am really tired. They told me to use a tripod. Not as convienent!
    But I've never clapped or sang, etc.
    Please stick with your appt.
    Can you take supplements?
  9. Chilene

    Chilene New Member

    hi cindy!--

    thanks for sharing your experiences, thoughts and good words!

    i have been wondering all along if my spinal stenosis/herniated discs have been responsible for these tics and such...

    i already suspect the herniation to be the cause of 14 years of numbness (various parts of face, arms, legs, hands... are nearly completely numb and have been since this dd began...), horrible headaches and the difficulty i have bending and lifting, bladder issues, vision problems, blah, blah (they suspected MS for 3 years, but ruled it out when they didn't find plaques on my brain. the last MRI was 1998, so i don't know if anything has changed with that diagnois)...

    yes, i know what you mean abot looking straight ahead!... and i'm always cocking my head to the left side (seemed like because my left eye is weaker or that my head was tired, though... i can't look anyone directly in their eyes anymore! --do you have that?...)...

    my least favorite things regarding the neck are bending to unplug cords, open old windows/storm windows (my building was built in 1930!... )... or backing up the car. it seems to cut off my blood supply AND hurt, both. i get dizzy from those things. i just figured that maybe i should have gotten the spinal cervical fusion that they "suggested", but could never say whether it might actually help or not.

    and yes, most of my health problems seemed to stem from two whiplashes (very minor, but pivotal).

    thank GD (at this point) i don't have any "jerking". just weird smiling/grimacing stuff with my face and touching my face or things with my hands all the time. and the yammering to myself/singing, full-of manic energy outbursts at home (not in public thank GD). but am trying to use this rare energy to clean, etc.! unfortunately(?), the energy burst don't usually last long.

    (i know how weird that may sound to cfs-ers. go figure.)

    i'm testing the waters with supplements as of today (for migraine... we shall see... i've been reacting to something today, but it may also be something i ate). always something!;)... the migraines really are the very worst symptoms, though. i'd do ANYthing to be able to take even an aspirin right now!

    best to you!;)


  10. PainPainGoAway

    PainPainGoAway New Member

    I'm sorry I didn't see your reply sooner-- how are you doing? I hope you made an appointment to get this looked at. Even if you can't take meds, or anything else, to be able to have some answers is worth the check up! It could be all related, or it could be several problems. And since you haven't had an MRI since 1998 if I saw that correctly, it's probably time for a new look in there!

    I do have trouble making eye contact at times. I have trouble with my eyes. I have a rare genetic disease that is messing with my eyes right now, so it could be that. But regardless, if I have to look at anyone taller than me, or someone who moves around a lot, forget it. I just let the person know ahead of time so they don't think I'm being rude.

    [This Message was Edited on 10/26/2008]
  11. gapsych

    gapsych New Member

    I have been wondering how you are doing.

    I just had one of those "aha" moments which is really astonishing, considering I am so foggy today.

    Have other people noticed your tics/grimaces? If you asked them would they answer truthfully. I only ask that as sometimes when you ask a question such as "Am I fat?" people do not want to hurt your feelings.

    Someone mentioned a computer program that tracks behavior, how you are feeling, etc. Even keeping notes might help.

    I hope I have not repeated anything other's or possibly myself, LOL, have said.

    Take care.
  12. simonedb

    simonedb Member

    I dunno, nothing sounds that weird to me anymore.
    i think dancing and singing in little bursts is a good idea, might keep morale up :)
  13. PainPainGoAway

    PainPainGoAway New Member

    bumping for Chilene