Hi :) New here

Discussion in 'Fibromyalgia Main Forum' started by akanesama, Oct 25, 2006.

  1. akanesama

    akanesama New Member

    Hi :) It's nice to meet all of you. My name is Jessica and I'm 25 from Northern NJ.

    I've been struggling with CFS-like symptoms for over 2 years now. My physician's original diagnosis was CFS after ruling out allergies (which I've never had), a multitude of bloodwork which came up negative (only showed a slightly elevated white blood cell count, but I was feeling lousy at the time), negative for Thyroid and Thyroid ultrasound, etc etc. I had a huge misconception about CFS and I just assumed he didn't know what to do with me. My lymph nodes were always swollen, I had constant reoccuring infections and was treated with several courses of antibiotics. I saw 3 different ENT Specialists, one recommended tonsil removal but the other two didn't recommend it.

    I have an upcoming appointment with an Infecious Disease Specialist. After researching online for 2 years, I believe the original diagnosis was correct. More and more symptoms of CFS have surfaced in 2 years but it leaves me feeling depressed more than ever.

    I also have GERD (I was hospitalized for the severity several years ago), PCOS (Polycycstic Ovary Syndrome) and Piriformis Syndrome (lower back pain). My Mother was originally diagnosed with CFS and now has Rheumatoid Arthritis. She tested positive for Epstein-Barr Virus but I was negative.

    Should I accept this original diagnosis or should I continue on with the Infectious Disease Specialist? I've been having reoccuring Upper Resp. Infections, just about every 2 weeks now. I have unexplained earaches(without an infection), constant sore throat, swollen lymph nodes in my armpits, difficulty concentrating at work, chills with no fever when symptoms flare, exhaustion, trouble sleeping, significant weight gain, and just an overall blah feeling.

    I've missed so much work over these 2 years and I'm concerned about losing my job. I have a really good job but I feel as if this condition is dehabilitating and I'm afraid that it will continue to get worse. Sometimes, I wonder if staying home to rest would be theraputic but I do enjoy working but not like this!

    I'm sorry for the long post but it's been such a frustrating 2 years and I don't want this to destroy everything I've worked for and the life I'm trying to build with my fiance. I just feel like if there's no cure and it's seemingly getting worse - how am I supposed to continue on working, you know?

    Thank you for listening...

  2. Bruinz

    Bruinz New Member

    Welcome, I am glad you found us.

    See every doctor and specialist you can. Leave no stone unturned in your quest for a diagnosis and treatment.

    You have come to a good place.

    Welcome to our FMily

  3. Aeronsmom

    Aeronsmom New Member

    Welcome to our Home Sweetie,
    we are sooo glad you found us and we will try to answer any questions that you may have, I am sooooo sorry that you are sick. Please take care and know that we ALL are here for you.

    Love, Ann
  4. hob

    hob New Member

    Nice to meet you. I am 25 almost 25 and live in St. Petersburg Fl. It is really hard dealing with all these issues at a young age and have found this place as a safe haven. As for your quesiton of accepting your originally diagnosis or keeping your appointment. I believe that is really your call. Listen to you body, do you believe you need to go? It may make you feel better just because it won't be a wonder later on... just a thought

  5. tinktink

    tinktink New Member

    You will find a wealth of info here on this board. Keep reading the posts and you will find your answers along the way. There are many here that share your frustrations and this is a good place to get support. Get as much input from as many places as possible to help you decide what it is affecting your life because when you know then you can deal with it on a different level. Best Wishes Diana
  6. quilp

    quilp New Member

    Don't give up hope, many of us have managed at least some semblance of recovery. I too am relatively new to this board and what i've found is that each one of us is different, finding our own individual path to wellbeing.
    If you are continuing to get worse perhaps your body is trying to tell you enough is enough ? One of the nasty elements of CFS is that you can't fight your way through the symptoms, because you will continue a slow and painful downward spiral. Perhaps you could tailor your hours that suit your health until you feel stronger. Good luck.
  7. akanesama

    akanesama New Member

    I just got home from work and I felt very relieved to see such a warm welcome, thank you all. :) It really made me feel better.

    I apologize if my post made me sound like a stick in the mud. LOL I'm usually very optomistic about everything but this whole thing has me frustrated! :)

    Again, thank you for such a warm welcome and for the encouraging words. :) It's comforting to know people who don't think these symptoms are "all in my head". Would you believe at the end of the consultation with the last ENT I saw, he said, "Well, just be thankful you don't have something terminal like Cancer." Amen to that but he doesn't understand at all! :( I think him saying that really dampened my spirits. Just because I started to cry in his office because I knew I was getting another "I don't know" from yet another doctor, so I suppose he thought I was overreacting because there was nothing he could physically see wrong with my throat.

    It makes me sick how even the most educated of people could be so ignorant!

    edit: spelling :)[This Message was Edited on 10/25/2006]
  8. Redwillow

    Redwillow New Member

    Welcome Jessica

    There are a lot of nice people here. I have FM so don't know a lot about CFS but I do understand how frustrating it is to get answers with these conditions.

    hugs Redwillow
  9. boltchik

    boltchik New Member

    Welcome to the board. Sorry you are having such a rough time at the dr.'s office. The fatique is so devastating sometimes, it just doesn't seem like many people understand. But there is a lot of great information here and great support. I hope you have a better day tomorrow. I was going to say "better evening", but I see you are on the east coast and I am over here in California. Take care, Kim :)
  10. Scapper

    Scapper New Member

    Hi, I'm happy you found this board....sorry that you "need" it.

    I agree with the above regarding leaving no stone unturned. I've heard positive things about Infectious Disease Specialists.....I hope you have a positive experience there.

    Although there are many with CFS here, me being one, we each seem to vary on what the underlying viruses, infections, etc., and the avenues we each choose for treatment.

    There is much to learn and hope for better days :)

  11. DoveL

    DoveL Member

    Welcome Jessica,

    I agree with the other posts here too!! Go to the infectious doctor. My rule is; RULE EVERYTHING ELSE OUT, and get the proper bloodwork done, then get the diagnosis. You never know when a doc may miss something. When I was first ill, I made sure I did research to rule out all the other disease with the same symptoms.You never know, they may find something that could be treated with some medicine?

    Good luck,
    Hang in there!!
    My health has improved emmensely over the past 6 years..I have CFS/FMS/. and am now working part-time
    I was bedridden the first 2 and a half years.
    Read as much as you can. This board has GREAT info.

  12. pw7575

    pw7575 New Member

    Hi Jessica,

    We are glad to have you here. I am glad you found this board because it is SOO helpful to have people who understand what you are going through. I also have CFS and got it when I was 25. It can be so frustrating to go to doctor after doctor and get the "I can't help you". I know the feeling all to well and I too wanted to cry and did cry usually after seeing the doctor. I saw more than 20 doctors when I first got sick and was trying to find out what was wrong with me.

    I think you should go see the infecious disease specialist. I know it is hard to go to doctor after doctor but it does help to know that you have checked everything you can think of. You never know with this illness there could be something causing it that they can treat.

    Don't give up. This board has SOOO much information. I wish I had all of this info when I first got sick. I have read that the first 2-5 years are the best chance at recovery so you are getting this info at a good time.

    Well, I hope things get better for you. We are all here for you.

  13. rockgor

    rockgor Well-Known Member

    Welcome to the board. As you have already seen, there are lots of nice people here who can share info and experiences.

    One of the mysterious things about this DD (Damned disease) is that what helps one person doesn't do much for someone else.

    You can find articles on a variety of topics in the library (in purple) above.

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