Just diagnosed....Thank you

Discussion in 'Fibromyalgia Main Forum' started by ladybug29, Feb 7, 2009.

  1. ladybug29

    ladybug29 New Member

    I was just diagnosed with CFS on 2/5/09….

    My symptoms started with sleep problems and extreme exhaustion about 6-8 months ago and just in the last 1-2 months I started having lack of concentration and memory problems then came the body aches/pains and 2 days ago my feet started getting unbelievably cold. I’ve been getting headaches that I thought were from sinus’ but now I’m wondering if it’s not CFS.

    My PCP told me to go in for a sleep study so, I went to a Neurologist and he was awful. I had 2 different sleep studies, a MRI and tons of blood test. When I went in for the results I didn’t understand anything that he said. He never actually told me that I had CFS, I saw it written on my check out form and I was so foggy brained that I didn’t fully comprehend what was going on. I had to call his office when I got home and find out from the front desk lady that he had diagnosed me with CFS.

    I’m so worried that I’m going to lose my job; I just started working 4 months ago after being a stay at home mom for about 4 years. I’ve already had to call in and leave early so much that every day I wonder if they’re going to fire me. My husband works on 100% commission and I carry the insurance on us. If I lose my job I don’t know what I’m going to do.

    My mother and best friend think that it’s all in my head and if I would just get up and do something I would be better. My mother-in-law (whom I never really enjoyed before) is the only one who understands, as she has had CFIDS for 20 years.

    I’m so scared…I’m 29 years old and have so much that I still want to do, but now I feel like I’m never going to be able to do an of them. I have an 11 year old son who doesn’t understand why I can’t do the same things as I used to. And I’m worried that my husband is going to resent me (just like he does his mother)

    Sorry for the long and unorganized ramblings but I think I just needed to get all of this out…

    I just wanted to say THANK YOU for all of the support.
    [This Message was Edited on 02/09/2009]
  2. emmally

    emmally New Member

    Sorry that this has happened to you. This also happened to me at around 27 years old and had so many dreams and goals which have been put on hold. MY best advice would be to see a specialist in your area who deals with CFS. There are also many breakthrough tests and drugs that are supposively suppose to be coming out soon....:)
  3. Smurfette17

    Smurfette17 New Member

    Hi Ladybug,

    I too am so sorry to hear that you've come down with CFS. I've been sick for a about a year (at age 32) and it started suddenly, literally from one day to the next.

    I just want to tell you that you are not alone-- there is a lot of goof information and emotional support on this forum. I understand what it's like to have your whole life changed and future uncertain. After getting my PhD in Biology, I worked for a few years and then finally landed my dream job. I got sick 6 months into the job. My husband and I had moved across the country for my job. And now I've been on medical leave forever and likely won't be able to return to it. So yes, I understand.

    I would suggest trying to get a doctor who at least has a clue about CFS AND can work with you as a partner, rather than just scribbling things that you then have to piece together on your own. I also have a lot of sleep issues but mine started later. Do you know what the exact results of the sleep study and MRI said? Can you get copies?

    My final suggestion would be to NOT worry about the job for now. I know it is really hard, but it is essential for my sanity to focus on one thing at a time. On days when I am so exhausted I want to curlp up in a ball, if I start thinking about my job and career, it will only make my symptoms worse. One day at a time is the only thing that has worked for me.

    And, a lot of people will not understand or believe you. Even people close to you. Because I was an active and ambitious person, some people think I just need to "put my mind to it" and I'll get better. I try to avoid those people.

    [This Message was Edited on 02/08/2009]
  4. Forebearance

    Forebearance Member

    Hi ladybug29,

    I'm so sorry to hear that you've got CFS. It is very challenging.

    I got sick when I was 28. One thing that I learned was that pushing myself to work was a huge mistake. I wish now that I had just rested completely in those early years. It might have allowed me to get well faster. Instead I've been sick for almost 19 years.

    Another thing I learned was to be my own advocate. I read as much as I could about CFS so that I went into a doctor's office prepared with ideas of things I wanted to try. And then after a long search, I finally found a doctor who works with me like a partner and is open-minded about trying new things. That really helps.

    The library and message board here at ProHealth are packed with all kinds of information. I have gotten many good ideas from reading here.

    I'm glad you could get your feelings out!
  5. ladybugmandy

    ladybugmandy Member

    ok this is just my 2 cents, but, since you haven't been sick very long, i think you have a great chance at recovery.

    is there a way you could see dr. lerner in michigan and get a treatment plan??

  6. AuntTammie

    AuntTammie New Member

    that you have this dd, too.....as far as those who think it is in your head are concerned, you can tell them that there is now proof that people with CFS have differences in their genes (not exactly something you can control)....also you can explain that the mitochondria do not function rt in people with CFS....the mitochondria are in every single cell of the body and they are what gives each cell its energy...if they don't work rt, the cell doesn't work rt, and there is no way that you can will it to work...it's about like trying to will a car with no gas to run....keep looking on this board and get pro health's weekly newsletter....they are great sources of info about the latest research and treatments and also good sources of support....also please do not give in to pressure and try to push yourself to do too much....post exertional malaise is a very real aspect of this illness and overdoing it can make things worse
    [This Message was Edited on 02/08/2009]
  7. fmar09

    fmar09 New Member

    I'm so sorry to hear about your recent diagnosis. It is a difficult thing to deal with... I know, I had CFS for about 12 years, and now I have fibromyalgia (for the past 8 years). I was about your age when I first got sick. The first thing you should do to help yourself (aside from finding a good doctor, which is often difficult) is to calm yourself, and learn how to handle stress. Stress is one of those things that often either triggers CFS, or makes your symptoms worse. Read a book or take a class on stress management. The next thing is to check your diet. If you are like most of us in this country, we eat way too much sugar, carbs, and processed foods. See a nutritionist... you'll be amazed at the results (if you can't see a nutritionist, let me know, I can suggest something to you). Even though you are exhausted and have pain, it is vital to maintain some sort of exercise on a daily basis. DO NOT overdue it, but mild exercise will help you feel better and prevent you from getting stiffness and simply keep you stronger so that you can fight this illness. It's a challenge, but it's important to remember that not all of the answers come from traditional doctors, you need a complete approach to fighting this off. It can be done, trust me! If you need some more info, get in touch with me and I can make some other suggestions.

    Good Luck,
  8. kellyann

    kellyann New Member

    Welcome to the board! I am so sorry to hear you have CFS. It is not fun, I know. Please, if you haven't already...do get tested for Lyme Disease. Your symptoms could very well be Lyme, and if so could be treated.

    This is a great site for informtion and lots of caring people here! I hope to see lots of posts from you!

    Jesus Saves!
  9. wendysj

    wendysj New Member

    Welcome to the boards... There is so much compassion and understanding here.

    The first year of CFS was the worst for me. I truly believed I was dying and they just couldn't figure out what what killing me. I was 24 when it all started after a case of mono. I was finally after many, many doctors in the Atlanta area threw their hands up, diagnosed by the Mayo Clinic in Florida. The first 18 months are the scariest because there are not many "good" days in between the terrible days. You will learn to get used to the fatigue. That sounds terrible but you have to adapted... Once you do, you accept it and it doesn't scare you so much anymore. You will need a counselor to help you grieve for you the "Ladybug" you once were... That was hard for me. I was always to type "A" personality. I was great at all sports and pretty good in school. I had to learn to accept I wouldn't be able to do as much as I could. It sounds sad, hell it IS sad!!! But it's necessary to live a happy life.

    I'm 28 now and doing pretty well. The bad days are REALLY bad but there are lots of fairly good days in between. You learn to really take advantage of the good days but not overdo it. I still work full-time. My bosses are incredibly understanding. I am very lucky for that. I have to take 1/2 of hydrocodone every 4 hours to make it through the day, but it doesn't stop me from working or driving. I have a boyfriend, who is awesome. My social life is now just going to friend's homes for dinner versus "going out". I have a fairly normal life... I plan to keep it this way for as long as possible.

    My advice to you is this: Don't stop working unless you have to... You are going through the hardest part now but you need the distraction of work and the feeling of accomplishment you get from working to make it through. Talk to you boss and be very honest. Go in for a few hours on the weekends to make up the hours you lost during the week. Create a plan before you talk to the boss and present it as, "I'm sometimes not able to do 9-5, but this is what I will do if that happens".

    I wish you all the best... I'm very sorry that you're having to go through this.

  10. moi482001

    moi482001 Member

    real diagnosis by your neurologist. I would call and make an appointment to discuss your diagnosis. If he does not want to make the time, go back to your GP (the one who referred you to the Neurologist) and ask for an explanation. Your GP should have all your results and should understand the diagnosis. Go equipped with a list of questions after reading on CFS. Ask about medication, diet, lifestyle etc. If you can, take a friend along to help you and support you with your questions.

    Once you are truly able to understand what is happening to you, you will be in a better position to deal with it.

    My heart goes out to you and all my best wishes to help you deal with this.

    One more thing-you must stay away from the people who discount your illness. They are toxic and will never help you out of this situation.