Just diagnosed...Just need to talk...

Discussion in 'General Health & Wellness' 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…

    [This Message was Edited on 02/08/2009]
  2. TwoCatDoctors

    TwoCatDoctors New Member

    First, CFS is very real and I know someone who has it. You will get to the point where you realize that not all people accept and support you in this illness. So you will have to make your support people the ones that fully believe in CFS and are willing to support you--and not your mother and your best friend. You will have to be strong and refuse to discuss your ailment with them and ignore the comments and hang up the phone or walk away when your Mother and your best friend start in about CFS and your health--don't discuss it with them any more as they are not really interested in learning about it; they are just putting you down about it. If they bring it up strongly state "I didn't bring this up for discussion" and walk away or hang up the phone--make strong boundaries that you will not take it from them so they understand you will not be bullied by them. You can probably expect some neighbors and others that may feel like your mother and your best friend. Unfortunately, there are people that still believe that AIDS is fake, that fibromyalgia is fake, and some don't believe in lupus either. These are just stupid, uninformed people and you have to stay strong and draw your boundaries to not discuss your ailment with them.

    I would get onto the CFS board here as that would be a big help. I would seek out local CFS support groups in the area where you live and that would be even more support.

    Don't be surprised if your best friend is one that you dump because this can be a breaking point in the friendship. Your best friend immediately should have been able to understand and accept your medical condition and not run you down and doubt you. That was very wrong of her and is not what friends do and your best friend should have supported you and later looked it up online to get the facts instead of doubting you and not supporting you at all. So start taking a hard look at your best friend and realize she will not be there for you during the tough times of this ailment.

    Good luck and many hugs.

  3. Nanie46

    Nanie46 Moderator


    I hope you will consider researching possible causes of your illness. Too many Dr's are satisfied with giving you a diagnosis and then saying the cause is unknown. You will then get only symptomatic treatment for the rest of your life, instead of the hope of recovery.

    I'm sure you fit the picture of CFS....however, something caused your illness. You sound alot like my daughter and I.

    I was diagnosed 21 years ago with fibromyalgia and now I know I have lyme disease. I'll be starting long term antibiotics.

    My daughter has chronic fatigue, chronic sinus infections, insomnia, memory problems, gets muscular injuries easily, etc. I believe she also has lyme and possible co-infections, so she'll be having an Igenex western blot soon.

    Do some research on lyme and other tick borne illnesses, and also viruses as a possible cause of your illness.

    Some people have improved on antiviral treatment also.
  4. clue555

    clue555 New Member


    I already posted a message and it has more to do with me just coping with a family member being diagnosed, but the thing I am using is supposed to be more for people who are actually diagnosed themself.

    I don't know the nature of your disease, but this book "When It Happens To Your Health" is inside this kit "Take Control of Your Recovery" and just reading the book and working through this workbook (included) were SO incredibly helpful. It is just hard to deal with such a huge change sometimes...it is like...where do I start? What do I do now? It is almost a numb feeling. Just wokring through this workbook made me think and find a way to move on and feel better. I am still dealing with my change and the diagnosis, but at least I feel like I have some sort of support now. I think the program has online psych. and stuff that are supposed to help people even more, but i just think it is helpful to work through my issue. I don't know the website off the top of my head, it is at home on the book, but you can try googling it or if you write back, I will try to remember to give it to you. Just let me know if you are interested and it might be able to help.
  5. tigersnake

    tigersnake New Member

    what is cfs
  6. tigersnake

    tigersnake New Member

    hi well i have depression. and it sucks some days im great then i will just wake up and not be myself. im taking meds but i dont know its just a big pain in the but to feel so silly.
  7. Janalynn

    Janalynn New Member

    CFS is Chronic Fatigue Syndrome.

    There is a great Depression board here if you want to visit. Also a sprituality/worship board if you're into that. I responded to your other post about being new.