It's BAAAAACCCCKKKKK !!

Discussion in 'Fibromyalgia Main Forum' started by lindasue, Sep 28, 2002.

  1. lindasue

    lindasue New Member

    Hi All,
    This is much longer than I had intended and I really could have gone..on and on. Sorry
    I'm new here and actually I'm new to posting messages, or chatting... But, things are different today and I need to get to know you all.
    I'll try and keep this short (as possible).
    A few years ago I finally got sick, REAL sick.. When I say "finally" I mean that I had the "flu" off and on for years.. Perhaps since the middle 80's. However, I believe it started even earlier than that. Maybe even when I was a kid. I know I was sick alot during my youth. Kidney disease, strep throat, etc.
    I grew up in the south, North Carolina and moved to California in my late teens. I am a 53 yr. young female.
    Well, anyway. In 1997 I was working for an attorney and started getting the "flu" ALL THE TIME..I didn't really run high fevers but I "ached" all over, low grade fever, sore throat. It would last for a day or two and I would rest all that time. Then I could go back to work (feeling somewhat better, but NEVER 100%) Within a few months I was getting confused, in a "fog", actually dozing off when people were talking to me (only one person ever realized this and called me on it) I think I was "dozing" with my eyes open. I started forgetting IMPORTANT things. Like one day I put a client in the conference room and forgot her. 45 minutes later the attorney asked if his client has come yet and it was like I WOKE UP and remembered she was there! He was very angry...she was very old and crying..I was overwhelmed and crying... The next day I was fired from my job. I had been making all kinds of mistakes and couldn't explain them. By the way, the attorney and I are still friends today, I just can't work for him :)
    I finally went to a doctor how did the Epstein Barr test and said my titer was off the chart and I was quite sick. He told me I has EBV and Chronic Fatigue. Three years of my life were suddenly gone and I had been in pain and sleeping most of those years.. Then in 2000 I started feeling better, much better.....WELL !!! So I thought. I've worked, been active again..SHOPPED til I dropped, so on and so forth. LAUGHED out loud again... YHEA!!
    I've had some strange things going on with me over the past year and a half...TMJ which NEVER stops hurting, I've just learned to live with the pain, a spasam (twitch) in the right side of my face around the eye and sometimes down to the right side of my mouth. It has been quite embarassing at times. I been to nurologist, eye doctors, ear, nose & throat doctors, I've had MRI's MRA's......they find nothing wrong and say get Botox...as far as I'm concerned that is a band-aid..I want to know why my face is going crazy..No one has an answer. I've also been getting a little achey and tired over the past six months. Three weeks ago I got a headache and my neck was killing me. Then my lower back on the right side going around to the lower front side hurt all the time. I couldn't go to work Monday...(by the way, I have the best job I have ever had and love going to work)!! Tuesday I saw the doctor, he started running tests, thank God my husband has great insurance. He has done a complete blood work-up, MRI of my neck, lumbar, CT of my lower organs.....I had a kidney infection....And my Epstein Barr titer was OFF THE BOARD AGAIN......by the time I had gotten all of the results back I was practically bed-ridden. I have been able to work a total of 9 hrs. in the past 3 weeks and I've had to give notice a my job. I worked 4 1/2 hours yesterday and cried most of the way home because I was in the worse (and I MEAN WORSE) pain and exhausted !!!! I am living on pain pills for now until I can get something else that will start helping. Now I have the Fibromyalgia/Chronic Fatigue AGAIN.....BUT this is worse than it was before. I know I'll get on some kind of meds that will help some and I know that I'll be sleeping alot, without feeling very rested...I know that my life as I have known it in the past couple of years has come to a HALT !! And, I know you all are here.....Thank you! Thank you also for listening. Thank you for your blessings and shoulders to cry on. We can get through this together, one moment at a time.
    I hope I haven't been too discourging to anyone here. Remember, this is just what has happened to me...It DOESN'T mean that it will happen to you and that there is NO HOPE. It is just another battle.....WE HAVEN'T LOST THE WAR !!
    My love to you all and I look forward to our cherished SISTER/BROTHERHOOD !!
    I'm down ....... but not beaten.... Now I'm ready to get involved in this sickness and kick some A double s.
    My love to you all,
    Linda
    [This Message was Edited on 09/28/2002]
  2. lindasue

    lindasue New Member

    Hi All,
    This is much longer than I had intended and I really could have gone..on and on. Sorry
    I'm new here and actually I'm new to posting messages, or chatting... But, things are different today and I need to get to know you all.
    I'll try and keep this short (as possible).
    A few years ago I finally got sick, REAL sick.. When I say "finally" I mean that I had the "flu" off and on for years.. Perhaps since the middle 80's. However, I believe it started even earlier than that. Maybe even when I was a kid. I know I was sick alot during my youth. Kidney disease, strep throat, etc.
    I grew up in the south, North Carolina and moved to California in my late teens. I am a 53 yr. young female.
    Well, anyway. In 1997 I was working for an attorney and started getting the "flu" ALL THE TIME..I didn't really run high fevers but I "ached" all over, low grade fever, sore throat. It would last for a day or two and I would rest all that time. Then I could go back to work (feeling somewhat better, but NEVER 100%) Within a few months I was getting confused, in a "fog", actually dozing off when people were talking to me (only one person ever realized this and called me on it) I think I was "dozing" with my eyes open. I started forgetting IMPORTANT things. Like one day I put a client in the conference room and forgot her. 45 minutes later the attorney asked if his client has come yet and it was like I WOKE UP and remembered she was there! He was very angry...she was very old and crying..I was overwhelmed and crying... The next day I was fired from my job. I had been making all kinds of mistakes and couldn't explain them. By the way, the attorney and I are still friends today, I just can't work for him :)
    I finally went to a doctor how did the Epstein Barr test and said my titer was off the chart and I was quite sick. He told me I has EBV and Chronic Fatigue. Three years of my life were suddenly gone and I had been in pain and sleeping most of those years.. Then in 2000 I started feeling better, much better.....WELL !!! So I thought. I've worked, been active again..SHOPPED til I dropped, so on and so forth. LAUGHED out loud again... YHEA!!
    I've had some strange things going on with me over the past year and a half...TMJ which NEVER stops hurting, I've just learned to live with the pain, a spasam (twitch) in the right side of my face around the eye and sometimes down to the right side of my mouth. It has been quite embarassing at times. I been to nurologist, eye doctors, ear, nose & throat doctors, I've had MRI's MRA's......they find nothing wrong and say get Botox...as far as I'm concerned that is a band-aid..I want to know why my face is going crazy..No one has an answer. I've also been getting a little achey and tired over the past six months. Three weeks ago I got a headache and my neck was killing me. Then my lower back on the right side going around to the lower front side hurt all the time. I couldn't go to work Monday...(by the way, I have the best job I have ever had and love going to work)!! Tuesday I saw the doctor, he started running tests, thank God my husband has great insurance. He has done a complete blood work-up, MRI of my neck, lumbar, CT of my lower organs.....I had a kidney infection....And my Epstein Barr titer was OFF THE BOARD AGAIN......by the time I had gotten all of the results back I was practically bed-ridden. I have been able to work a total of 9 hrs. in the past 3 weeks and I've had to give notice a my job. I worked 4 1/2 hours yesterday and cried most of the way home because I was in the worse (and I MEAN WORSE) pain and exhausted !!!! I am living on pain pills for now until I can get something else that will start helping. Now I have the Fibromyalgia/Chronic Fatigue AGAIN.....BUT this is worse than it was before. I know I'll get on some kind of meds that will help some and I know that I'll be sleeping alot, without feeling very rested...I know that my life as I have known it in the past couple of years has come to a HALT !! And, I know you all are here.....Thank you! Thank you also for listening. Thank you for your blessings and shoulders to cry on. We can get through this together, one moment at a time.
    I hope I haven't been too discourging to anyone here. Remember, this is just what has happened to me...It DOESN'T mean that it will happen to you and that there is NO HOPE. It is just another battle.....WE HAVEN'T LOST THE WAR !!
    My love to you all and I look forward to our cherished SISTER/BROTHERHOOD !!
    I'm down ....... but not beaten.... Now I'm ready to get involved in this sickness and kick some A double s.
    My love to you all,
    Linda
    [This Message was Edited on 09/28/2002]
  3. ali-may

    ali-may New Member

    Welcome to the board! I'm so sorry to hear about your relapse. :( But you're right, it's just another battle and the war is not over!!!

    Can you put your relapse down to anything in particular? (eg extra stress, change in diet???)

    Alison
  4. lindasue

    lindasue New Member

    Hi Ali !
    Thanks for the quick response! Yes, I have a lot of stress in my life. Sometimes more, sometimes less. It's always there. Family issues, financial...shall I go on.. You know I wish I didn't have the stress...but I've come to realize it is a part of living and I just try and handle it the best I can. The last few months I've had some extra hard stress and my body pays the price. Big Time this time.
    Love,
    Linda
  5. garyandkim

    garyandkim New Member

    pay later. Botox shots great idea. Our doc is just starting to use them. I am wanting to try for my whole back area but, he thinks the neck and face are the best places for it. I want it. My sister in law has had great results. You sould apply for SSDI. No there is no cure but, that doesn't mean we don't fight to find one. I have found that Warm watere hydrotheropy works well, 94 degree water and the kind where you are suspended. I also have been back at the Chiros it does hurt but, I have much more movement. We have found this gel call Blue Emu and it works the best for us and some of our friends. Epsoms salt baths are also of some help. I get steroid shots and it takes a long while to get up to 3 months of help. I hope you have some pain meds. I also take Soma for the spassums. But, with this darn thing things that work or help one mat not another. We have both FMS and CFS. Have you been to the home page here there is a doctors refural listing and if you click on it then Co-Cures good doctors list you may find one in your area. We have been to so many and 3 years ago I found our doc there. He is board certified in FMS, CFS and Infectious disease and and internist. Ultem is a great start for a pain med. Non narcotic. I now use Norco and Gary the really strong stuff. Oxy and Fentinol.

    You didn't depress anyone here. I hope you do not get depressed. I don't but, Gary does suffer and from panic attacks. Have you looked at the lb or used the search on the board to look up symtom lists? There are many and some have listed things others don't. We unfortunatly have found that we have more symtoms as the years go by.


    Law, Gary was a Paralegal and changed ti IT and now at 48 is totally disabled and onSSDI. Me not as bad as he.

    Laugh as much as you can and as you know you are not alone.
    The top topic post is for requesting these great guides and up to 99 at once. I order them and hand them out and leave at all docs offices and so on. I just got another 99 last week and need more. They are free and here they have the best news letter thAt comes out every 4 months and e-mail updates. We have found this site to be the best and we hope you enjoy it here.

    Glad to have you aboard, Kimand Gary
  6. lindasue

    lindasue New Member

    HI KimandGary,
    I'm so happy to meet you and look forward to our kin-ship so to speak. Maybe are all related and this is just a family thing!! Who know why we are all here but I'm sure glad to have you in my life !!
    Thanks for the support! Also thank you for the great information. I look forward to getting to know you better.
    Love,
    Linda
    [This Message was Edited on 09/28/2002]
  7. garyandkim

    garyandkim New Member

    and EVE. We all are one big family. I guess we got some of those troublesome genes. Thank you for you're reply, it makes one feel good to have a responce!


    Love, Kim and Gary
  8. kredca4

    kredca4 New Member

    I'm sorry to read about your "Battles", but you are at the right place for Help in your fight.

    I had to give up my Photography Business and the day I closed my door, I thought the world had ended, and I cried for weeks. I finally got through the Grieving process, till Sat's roll around and I see Weddings go on, then I cry a little for the Old Me.

    I work now at keeping this dragon at bay and most times I do well, but then I have the down times (Flare) like now.
    I hurt all over, but this will pass.

    I hope you find encouragment here and advise that will help you to live a life that is changed but still a life that can be useful. How you say?
    Well by being here and encouraging others, talking out your problems and just sometimes being a Friend.
    It's something we all can do.

    Life is not over for me, it's just changed from what I planned on, you know that saying right? Well that's the way it was for me, one day I'm at the Top of the Heap and the next I'm at the Bottom, but I know I won't stay there.

    You wrote that your in Ca, are you a Southern Gal or a Northen Gal, lol. I live in So.Ca.

    Hoping you have a Stressfree and Painfree day,
    Sincerely
    kredca4/sharon
    [This Message was Edited on 09/29/2002]