Ok...how do I explain this....just feel weird

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by achy, Dec 12, 2002.

  1. achy

    achy New Member

    Do you ever just feel "weird"? Like you can't put your finger on it...your not sick per se, but your not right either....

    I get this odd pressure type feeling in my head...not a headache, not sinus, no pain, just this odd sensation...like a cotton filled balloon inside my head is slowly expanding...The brain fog comes wiht it usually.

    Then i feel like the day before the flu hits ya...just kinda woozy, tired, "icky", but nothing inparticular.
    I may feel fine one minute and then this wave comes over me. Or I may wake up feeling like this. This may last an hour, it may last a few days. Nothing seems to trigger it, or make it go away.

    I hate it. I want it to stop. But I can't even get my doc to understand it, especially when I can't explain it. I thought maybe some of you might be able to relate?

    Thanks for being here...I'd be lost wihtout ya
    Warm fuzzies
    Achy

    P.S. I too have had every test in the book, including blood workup...MRI from head to toe..CT scans....all is fine.

    [This Message was Edited on 12/12/2002]
  2. achy

    achy New Member

    Do you ever just feel "weird"? Like you can't put your finger on it...your not sick per se, but your not right either....

    I get this odd pressure type feeling in my head...not a headache, not sinus, no pain, just this odd sensation...like a cotton filled balloon inside my head is slowly expanding...The brain fog comes wiht it usually.

    Then i feel like the day before the flu hits ya...just kinda woozy, tired, "icky", but nothing inparticular.
    I may feel fine one minute and then this wave comes over me. Or I may wake up feeling like this. This may last an hour, it may last a few days. Nothing seems to trigger it, or make it go away.

    I hate it. I want it to stop. But I can't even get my doc to understand it, especially when I can't explain it. I thought maybe some of you might be able to relate?

    Thanks for being here...I'd be lost wihtout ya
    Warm fuzzies
    Achy

    P.S. I too have had every test in the book, including blood workup...MRI from head to toe..CT scans....all is fine.

    [This Message was Edited on 12/12/2002]
  3. painin

    painin New Member

    That wonderful fog. To me it is like being trapped in someone else's body and I just can't get out. It is so spooky and so scary. A feeling that you just can't describe to make others understand what you are talking about. But I know exactly how you feel. I was like that for almost a month before I was diagnosed and got started on my meds. Now it comes and goes. Some days fog, some days not. But more so than not.
  4. AnnG

    AnnG New Member

    I can't tell you how many times I have described feeling like: "the day before you get the flu". I thought I had made that up! After years of searching for answers I have given up and at least it doesn't panic me anymore. After all, it hasn't killed me. Now that I haven't diagnosed it myself (brain tumor, MS, etc.) I have relaxed and it doesn't affect me as much. I think the not knowing and worry are what make it so hard to live with. Get whatever tests done you think necessary for your piece of mind if you can. It helps to know.

    I hope it helps to know you are not alone!

    Hugs,

    Ann
  5. pam_d

    pam_d New Member

    This is my life since FM..."that weird feeling". I can't tell you how many times I've had these strange, quirky sensations. And you are right----we could make a whole career out of trying to figure out the proper words or explanation that really accurately describes this stuff. I can totally relate to this, Achy....

    Hugs,
    Pam
  6. JaneG

    JaneG New Member

    that lists terms that explain how we feel!! I too have had weird feelings and when I try to explain to husband, relatives, DR. how I feel I can tell by the look on their faces that they just don't get it!!

    Got frustrated at Thanksgiving trying to explain this DD to my sons(relatively intelligent 26 and 28 yr. olds) and could see that they weren't getting it so I printed off some literature from the computer and left it on kitchen table for all to see - think they finally got the message that while Mom doesn't necessarily look bad, I feel bad!!
    Nin B likes this.
  7. momof3dancers

    momof3dancers New Member

    YES this is exactly how I feel...I feel like I am loosing my mind.. that I just dont know.. but atleast I feel better know ing that I am not alone

    Shannon
  8. amilyne

    amilyne New Member

    you i know that feeling ..for the longest time i just thought like my brain was still sleeping ..it usually happens in the morning for me...i would be driving to work and i just thought that the whole time i was driving "what if im not really awake" i feel soo weird ..just liek this strange still sleeping feeling ..like a big bubble in your head.. i know that one lol
    ---ami
    did i ever mention how much i love this stuff ;) haha
    Nin B likes this.
  9. lovecraft

    lovecraft New Member

    This is one of the most frustrating things about my illness: the inability to explain how I really feel. Like many of you, I often resort to analogy. "It's like the day before a cold virus sets in", etc. As I stated in an earlier post, I often compare the feeling to the early stages of a pot high or alcohol high. That feeling you get before the dizziness, giddiness sets in with these drugs. You know something is just a little bit off. Mine lasts almost exactly 24 hours and I get it 3 or 4 times a week. Bizarre.
  10. Wreckless

    Wreckless New Member

    Before I knew I had Fibro, I referred to this feeling as a feeling of everything seeming "Surreal". I wonder if anyone else has had this surreal feeling.
    Rudy
  11. Mikie

    Mikie Moderator

    So much of what we experience are vague symptoms, but I believe they are connected to our illnesses. Sorry I don't have any answers for you. Often, when someone posts a symptom which they though unusual, they find out many others suffer from it too.

    Love, Mikie
  12. dlizard

    dlizard New Member

    I totally agree with all of you... I've always had it.. it does however come and go.. I hate it too.... and yes when I feel this way I know the fog is forthcoming too.... Good luck!
  13. JaciBart

    JaciBart Member

    I thought it was the flu, I have had it a few times since I got this dd, happened just recently on the day after thanksgiving, I had no idea it was just part of this fibro stuff, thank you all for enlightening me again. I am always amazed at how consistent we all are in our symptoms.


    Jaci
  14. EmilyBrough

    EmilyBrough Member

    Hello,
    I was trying really hard to describe my symptoms and the only thing I could say, is its just a weird feeling, no real pain, just pressure in my head, I find my hands get cold too and slightly clammy. I feel out of it, for lack of better word, no energy tired,nauseous , and that damn pressure. I feel like a have a flu coming on, but it goes away. I really don't know what's wrong. I've gone to the hospital and they all say I'm fine, my blood work is fine, there is nothing wrong.....If there is nothing wrong why do I feel like this?

    Now about 5 years ago I had a brain tumor removed from my cerebellum. I get regular MRI's done, but lately when I go to the ER and tell them how I feel like just look at me like I'm some junkie trying to get meds. they say it has nothing to do with my tumor and there is nothing wrong. I hate being misdiagnosed and I don't know what to do at this point.

    It is good to know others feel this way too more or less if anyone does find out what it might be I would love to know. I can't live like this.. its an everyday thing now and its preventing me from doing so much. :'(

    Thanks for reading and Thanks Achy for the post.

    Sincerely
    EB
  15. lia_joy

    lia_joy Member

    Yes! it is this foggy, underwater or withdrawn deep inside of my body feeling that leads me to believe I've had this condition for many years though it was only recently diagnosed... Early in (or right before) this latest Episode (or relapse or whatever you call it) I was already telling my husband "it feels like pain without pain (doesn't physically hurt, but I feel totally distracted the same way you would when you are hurting real bad) or having the flu without feeling sick" As it got worse, the "post-exerional malaise" started to include ACTUAL pain and it feels SO much like the flu is about to hit that even though I am used to it, when it comes on I remind myself that I have kids & "It might really be the flu this time" -- I've even put off eating dinner just in case I was about to start puking my guts out in a couple of hours... but after a couple of hours it was clearly CFS flaring up.

    I think comparing to the flu is the best way for people to understand because everyone's been there (for short periods of time) and can sort of imagine what you are going through if they draw on their own experiences... Also, i think it's very accurate -- for me anyway... even my sleep. it's like when you have the flu, sometimes you crash out and sleep so deep, other times you're up tossing and turning and aching all over... Thinking is like trying to focus through sinus pressure... Only you can't just forget it for a couple of days and come back to it when you feel better cause you don't know when that will be.

    I REALLY wish there was an explanation for what causes that feeling... I've even thought about researching what is happening in your body right before flu symptoms kick in to look for clues... it seems like it MUST be an immune response? or the same gearing up that normally happens right before an immune response? knowing other people are experiencing it very similarly leads me to think there must be something measurable about it... I hope research will lead us to better understanding very soon!
  16. canchaser3020

    canchaser3020 Member

    An explanation for part of these symptoms may be low pressure zone (like on the weather map). Low pressure makes parts of you body expand, like the pressure in your head or the achy feeling all over. This winter has been really bad for me because there has been 2-3 low pressure zones every week. Hard to figure when one will affect me. When this happens I get fatigued, body aches all over, forgetful, can't think straight.
    Hope this helps.
    Has anyone noticed that when you are fatigued you are also get short of breath easier? I have been wondering if during fatigued periods the whole body, including lungs and the brain are fatigued also. Just my observation.