Discussion in 'Fibromyalgia Main Forum' started by busybusymom, Sep 22, 2005.

  1. busybusymom

    busybusymom New Member

    Does anyone ever get these "whip-it" type dizzy spells out of the blue who have chronic fatigue syndrome? I've been getting them off and on since diagnosed 5 years ago, but recently have been better until today. I did have an adjustment on my neck two days ago, have had a chronic migraine for a week-and-a-half. I don't know - maybe I wasn't breathing right or over did it.

    Now, of course, I am feeling anxious and waiting for the next one to hit. I know better not to, but it's a scary thing!!

  2. greatgran

    greatgran Member

    I was dig. about 5 yrs ago with cfs and one of my symptoms was the dizzy spells and weird head feelings..

    Everytime I have then it scares the heck out of me and causes big anxiety..I thought with me it might be lack of oxygen. There are so many symptoms with this disease its scary because I am always wonder if its the disease or something else...

    Do your lips ever turn blue? I have had several people tell me my lips are blue.

    The dizzy spells are not as bad as they were at first but they seem to come out of the blue for no reason...Sometimes it feels as the inside of my head is dizzy..

    Because of these spells I have become agoraphobic, afraid if I go far from home I will have one along with the fatigue etc..

    Wish I could offer some help but I can relate and know the anxious feeling...

    Take care,

  3. busybusymom

    busybusymom New Member

    Crazy crud with this disorder, huh???!!! No, my lips don't turn blue - at least I don't think so. I can imagine how you have become agoraphobic. I already have anxiety/panic disorder (15 years), and when this happens, the heart goes, and I start thinking how I don't want to be alone, and that I won't be able to go anywhere for fear of it happening again.

    But, if it is on and off, we need to go about our days and just figure it is temporary and we will be okay (as scary as it is!!).

    I hope you are getting treatment for your agoraphobia. I have been having a tough time lately with the anxiety. Claire Weekes (a British old lady) has written three great books - I just ordered her audio cassette on "overcoming panic." She does mention that people with anxiety/panic can have these dizzy spells (she calls it "giddy spells"). The spells could be a combo of the anxiety and CFS.

    It's frustrating that our symptoms overlap so many disorders. UGHHHHH!

  4. nice2meetu

    nice2meetu New Member

    I am diagnosed as fibromyalgia. However we all know that CFIDS crossesover into and vice versa with FMS. I have experianced this many times. I never knew what it was. It freaked me out so bad I became agoraphobic over ir. I know that sounds strange but the fear of having that happen in stores etc. really became as frightening as the dizziness itself. I never knew what it was called, and I sure didn't know what it was. Now that I know, I think I can finally come to grips with it! I am so thankful you posted this.
  5. nice2meetu

    nice2meetu New Member

    They are almost word for word the same! I feel exactly what you feel! This is like the twilight zone....LOL!
  6. Grailgoddess

    Grailgoddess New Member

    Hi Jennifer ~
    Yes, I do get these kind of dizzy spells, and the kind of slow-rolling partial loss of equilibrium, like my living room has just become onboard an ocean-going vessel. I do get migraines, but they aren't always connected - at least I don't see a pattern - so this kind of takes some of my fear away, knowing others are asking / experiencing the same thing. Thanks. Bless ~
  7. Mareeok

    Mareeok New Member

    ...but it is unnerving when it happens. I can just be sitting and I'll get a dizzy spell out of the blue.
  8. CanBrit

    CanBrit Member

    I have FMS but the Dr also thinks I have CFS as well. I get these weird dizzy spells from time to time. Completely out of the blue.

    They don't last too long but it does feel like I've been on some carnival ride. Makes me nauseous.

    What else can we get eh!

  9. jess

    jess New Member

    I been having dizzy feelings for the past few days along with nausea. I wonder if it's related to the inner ear. I have tinnitis all the time. It could also be low blood volume or low blood pressure. I don't know what to do about it other then rest as much as possible and drink fluids. I hope it goes away soon. It is pretty scary. Jess
  10. nice2meetu

    nice2meetu New Member

    Very low one day....high the next. Dr had given script for bp med but before taking it I checked and mine was 116 over 60. So I called and told nurse who urges take it anyway. The instructions explicitly state: Do not take this if bottom number goes below 90. Hello??? So I said, please tell the dr. and maybe have him call me. So nurse calls back and says, "doc says lower your salt intake" ok. So its been a few months and I have lowered the salt somewhat. So I do not know if its high right now. I got so paranoid taking it that I can't do it anymore. I developed a phobia. Now whenever anyone takes it it jumps high due to panic.
  11. 123sandra

    123sandra New Member

    You are definitely not on your own with this one!!
    My 'normal' bp is 100-105/60. I know it's slightly low and when I first started to get the dizzy spells I just put it down to that. I have phases were I get a lot of them, then nothing for quite a while!!
    I'm in a flare up now (past 6 mths) and I've had quite a few and sometimes they are followed by 'stars'!!!
    I give over worrying about it after I got the dx.
    The weird thing here is I've only got the one lable, FMS, when I know I've also got the CFS. No energy, can't keep awake properly during the day, brain freeze etc.
    Hope you can manage to relax about it.
  12. busybusymom

    busybusymom New Member

    Thanks to ALL of you for posting. It sounds like we are all going through the same thing. I was also told it could be my BP, and to increase water and salt (I already drink 64 oz of water a day!). This hasn't changed a thing.
    Also, it can come in phases, just like you wrote. I just hope I'm not in for another "attack" of them.

    I don't know what the cause is for this. Because of the low BP thing, I don't think it is this. Also, EVERYTHING else has been ruled out. I am seeing my rheumatologist next week and will ask him WHY we get the spells - but as I read from some of you, FATIGUE is our worst enemy, and all kinds of things can go awry when we are so exhausted - like the shallow breathing! Everyone makes so much sense.

    If I find out anything new, I will post next week for all of you.

    Just to let you all know - I had this "dizzy spell" late yesterday afternoon, and today I drove to pick my son up from school and did my usual stuff around the house (too tired to go out!). Still feeling dizzy today, but have a nasty migraine. I hope that all of you who have become agoraphobic from this are getting help. I ended up taking 0.25 mg of Xanax right after this happened, and it seemed to calm me down. I didn't feel 100%, but my nerves were calmer and I was able to take care of my kids (husband at work for a double shift - ughhhhh!).

    Hope you are all having a "dizzy free" day!!! Ha!! Ha!!


  13. springrose22

    springrose22 New Member

    Increasing salt and water intake could definitely help. I have a 500 ml. bottle of water going all day, when I finish one, I fill it up again and usually end up drinking 3 of those bottles per day, which is about 6 cups. I have found if I don't do this, I get dizzy, likely due to low blood volume. Also, for some reason, I find it easier to "glug" it down out of a bottle than out of a glass or cup. Try it. You'll like it. Marie
  14. rbecca47

    rbecca47 New Member

    i get dizzy spells out of the blue, even when i am just sitting, had a couple in my car, so i gave up driving for the time being, doc says the spells can be for fms,and cfs. or medication. so till i know how to control them will not get behind the wheel of the car.
  15. Sandyz

    Sandyz New Member

    I have both fM and Cfs and I have been having lots of problems with dizziness. Today was horrible. The room was spinning. My neck and shoulders have been horribly painful. They alsoseem very inflamed. SO I think this is part of my problem too.

    This is my worst symtpom right now and I would do anything to get rid of it.
  16. jujubee

    jujubee New Member

    I have dizzy spells too. I have fibro, but didn't know it could have this effect too. Do you have muscle spasms in your neck? Or blood vessel swelling or dilation related to your migraines? Dr says the neck muscle tension is the main thing that triggers the dizziness, with and without some ringing or pulsating sounds in the ears. I take a mild anti-spasmodic at night when the neck muscles tighten up really bad. Also daytime breathing, relaxation exercises (1 to 3 minutes)and neck massage when I can. All of efforts don't always work. But, I have fewer spells now. Jujubee

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