I am going to try and post freaked out

Discussion in 'Fibromyalgia Main Forum' started by angelfoo, May 30, 2006.

  1. angelfoo

    angelfoo New Member

    Hello All I am pretty new here and have not even done my profile yet. I have been busy with all the test at the Neurologist. All these evoked response test. I just left there 30 minutes ago and they did the eye test on me. I am still freaked out. The one where you stare at a red square and all these black and gray or white not sure flash or move. They covered one eye at a time. I thought I was going to lose it. I could hardly look at the thing the waves matched up though so the brain was working but the sensation I got really upset me. I started crying. Weird. I felt like I was losing control I was forcing myself to look at this screen and I realized that I have been trying to hide or just not believe that I am sick. I am pushing myself to do things and I feel like I am such a failure. I am 43 years old. This can't be happening to me. They are trying to rule out MS and I have never had a definite diagnosis of cfs just epstein barr this last episode has really changed my cognitve abilities. I have had two major attacks in the past 2 years both sending me in for an hospital stay.Although I have been dealing with symptoms since I was 18.They thought I was having a stroke I did not now the concensus is TIA's. I go for 4 mri scans at 2:30 this afternoon. I think the comments made by the lady giving the test today really upset me too. when I finished the eye test I am sure it was obvious something happened during the test. She asked me to explain what happend so she could make a note. I tried to explain but it was very hard the only thing I could say is I was in overload I do not think it showed on the readout though. She then said well I have never had this reaction before you should not go to any discos. Discounted me I guess! I am really sad. When I was growing up my mother always told me your not sick maybe I still believe it! I will keep you posted.LUV,Angelfoo
  2. mom4three

    mom4three New Member

    Hugs to you...
    I remember when I first got really sick. That is when I realized that was not making things up and I really am sick. Before that I always had something going on. Something was always wrong and I was afraid to complain because I would get that look. You know the nothing is wrong you look fine look.

    I think you are in that place still. You will have a moment where you will realize you are sick and whether anyone believes you are not you are.
    We are always going to have doubters. You just try and take care of yourself and try not to worry about them.

    Hugs to you
  3. lovethesun

    lovethesun New Member

    Sorry that you had such a tough time.Welcome to the board though.Linda
  4. Marta608

    Marta608 Member

    Hugs to you. I'm sure it was upsetting.

    I don't think the tech was discounting you, you really would be very uncomfortable in those disco lights.

    Let us know how it goes.

  5. Shannonsparkles

    Shannonsparkles New Member

    Glad you are here. Medical people say some really cruel stuff without meaning to.

    Yesterday I went to the hospital for a blood test, and there were people talking and a TV on in the waiting room, and after a few minutes of that, I started sobbing. Sound does that to me. Sensory overload that makes you get emotional is normal for this, happens to a lot of us. I'm sorry your test was so rough.

    We'll always be here to support you, and you can talk to us about anything. :)
    ((( ))) Shannon
  6. Shannonsparkles

    Shannonsparkles New Member

    I have that too, that sensitivity to bright color!

    Once my dad got me a bright yellow teddy bear to cheer me up, and I couldn't even look at the thing. I had to move it out of my line of sight, or else I would feel sick. My first thought on seeing it was, Wow, that thing must be radioactive, it's so bright! Anything with writing on it does that to me too. I'm not the only one. :)
  7. NyroFan

    NyroFan New Member


    Just shrug it off. If you read many of these posts we all end up with bad doctors somewhere along the road.
    Try not to let it bother you.

  8. angelfoo

    angelfoo New Member

    Thank you all I am done with all the test now except for seeing a neurophyscologist sp? I have seen my fair share of bad DR.s then some really bad DR.s so I know the routine. It is just baffeling why I need this validation when I already know. It is this crazy cycle of good days bad days never knowing and trying to be a semi coherent wife and mother. It is my children I worry about they need me. and here I am just walking around or lying around in this state. Right now I hurt in my hips and low back from doing the mri test for two hours. I don't dare say anything because I am sure they do not want to hear it. I will take some advil and grin and bare it. I am tired of being tired and being told if I change the way I think or realize I am depressed then things will work themselves out. I know I am depressed. I do not even have the energy to talk to anyone. I know I am not telling you guys anything new. Thank you for reading my run on sentences. I just have to type it as it goes in my brain. I hope I will cheer up soon. The kids are out of school tommorow for the summer and Ihave no idea what to do. I will try to keep writing it seems to help me get out of myself. Love,
  9. Johnna

    Johnna New Member

    I'm so sorry you had to go through that.
    I get sensory overload very easily. I'm not sure if it's connected to my chronic pain, though. I have something called synesthesia, and certain colors make horrible noises and they can give me anxiety attacks.

  10. angelfoo

    angelfoo New Member

    hi fight I take a 1/4 asprin I am on Aceon for my blood pressure lipitor for cholesterol which is not that high 200. oh and lexapro. This is all a fairly new regimine. I am just now seeing a neuro but have been living with fatigue joint pain the whole list since I was a very young girl. Good for a while then not good. This time having a rough time since August 2004. Really down right now. hope you feel better soon.
  11. Johnna

    Johnna New Member

    I took Lexapro for a while, it worked pretty well, and pretty fast!

  12. musikmaker

    musikmaker New Member

    Your story sounds so close to mine and many others that participate on the board. I have been dealing with this since my teens, the cognitive issues though started just 2 years ago. I went through the ruling out of MS which was scary. I can go on overload very easily and totally understand what you are dealing with. My Mother always made me feel like I wasn't ill also and it took a long time for me to accept that I really am sick. Quit believing her and believe yourself. Good Luck
  13. Shannonsparkles

    Shannonsparkles New Member

    Would you consider replacing the new bulbs with the kind you had before to see if it makes a difference? It makes sense that some kinds of light would bother us while others would be fine.
    ((shine on)) Shannon
  14. musikmaker

    musikmaker New Member

    A lot of the energy saving bulbs are flourecent (sp). This type of light is a problem for many people. You might try your old bulbs as suggested.
  15. angelfoo

    angelfoo New Member

    Hi I know they did a lateral view of my neck. looking for a pinched nerve. The other three were for the brain 2 without contrast 1 with. I think the tech said they were really looking at the arteries. I should hear from them soon. I listened to Norah Jones Love angelfoo
  16. carebelle

    carebelle New Member

    I think her disco commit may have been because some of us have problems with strobe lights blinking on and off.They also can cause some people to have an epileptic seizure.
    I hope you feel better.
  17. MaLuce

    MaLuce New Member

    I was diagnosed with FMS in 2002 and CFIDS in 2004.
    For the last 1 1/2 yrs I have experienced alot of sensory overload, being in a crowded room, music, loud noises, even singing in church on Christmas morning.
    Along with the sensory overload I experience partial seizures at times. My seizures can even happen when I am sound to sleep, but my brain is apparently still taking in all the commotion. I do not loose concosness, but I do loose awareness of what is happening around me, however my family states that I am able to answer questions with simple replies, such as yes or no and follow commands, such as move your arm. The seizures seem to affect my head, arms and sometimes right leg. My muscles contract severely and my fists will clinch shut and it takes my husband or son quite some times to get them open. Apparently our inner strength comes out at times like this. I can almost alwasys tell they are coming, as I get the most aweful pain in the left side of my head above my ear and I am very tired. And after, I am totally exhausted and in pain from head to toe. Before the seizures started I was having severe migraines that would last for hours and hours. My doc started me on Inderal and now they have added Lyrica. The Lyrica has been a godsend. It's cut the seizures by over 1/2 and has helped tremendously with the skin pain and burning (neuropathy) that I believe we with FMS suffer from.
    I'm still looking for that "perfect" doctor to handle my case, but I thank God for a local nurse practioner who has taken the time to read the articles I bring her and does her own research on what's new with this disease.
    I recently underwent 2 epidural steroid injections in my lumbar region and the doctor said it was very hard to get into the nerves because of the amount of calcium deposits, and he has seen this in many FMS patients.
    So, don't give up!