Those with CFIDS, Please Share Your Symptoms and Daily Routines

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Sep 24, 2005.

  1. greatgran

    greatgran Member

    I doubt my dx. of cfids so often..I would love to hear from you with only cfids..
    Your symptoms, daily activites and coping skills, meds or supplements that have helped,
    are you mostly housebound or able to travel..

    For the past 2 years my symptoms seem to be getting worse and I am not sure if it is the cfids or something else also the aging process..Don't think its aging unless cfs gets worse as you get older...

    I may have 2 or 3 good days then I try to catch up on household chores and grocery shopping..Then I am in bed 2 or 3 with extreme fatigue, weakness, sometimes a sore throat and sinus problems, sometimes not..What really scares me is my husband tells me I don't even look like me...My eyes look weak, my lips blue so then I think is it something else...When I have these flares or whatever its like I come and go like you feel when you have a high fever except I don't run a fever...After about 3 days of complete bed rest I seem to start feeling better only to start the cycle again....

    I am afraid to travel or leave town, fear of this happening . Also I have anxiety /depression after the flares..well I have anxiety most of the time...

    Can anyone relate to these symptoms ?

    Thanks,
    Phyl

  2. Empower

    Empower New Member

    I sometimes doubt my diagnosis too

    I developed FMS in 1992

    Then, after surgery in 2000, I couldn't get out of bed

    Long story short, I have bad days, and okay days

    I try to get out once a day, but sometimes this doesn't happen

    I must rest at LEAST once a day 1- 2hours

    I have headaches several times a week, and feel weak alot

    I can't tolerate heat or cold - 68 degree days for me!

    Alot of times, I have problems climbing stairs because of severe fatigue

    One strnage symptom I have is that my legs get red and swollen around my knees alot
  3. meowchowchow

    meowchowchow New Member

    Hi Gran - I can relate! I'll be good for a few days or weeks and then I'll overdo it and be in bed for a month. I can't exercise it makes me so sick, and I'm only 30 years old! I'm getting married in january and I'm in nursing school. Somedays I have to drag myself out of bed to go. The stress is too much.

    I too have horrible anxiety and depression. I take Lexapro and Xanax as needed (probably too much). Besides that I take Zantac for acid reflux and a daily vitamin.

    I am also afraid to leave town. This past week my mother was in the hospital. She lives 2 hrs away. I had to go (wanted to) and I was a nervous wreck the whole time. I had a panic attack in the hospital and had to go outside and try to get myself together.

    I live in constant worry that something else is going to be wrong with my but that I'll brush it off due to CFS. I've been to the dr. with all my crazy symptoms and although she checks them out they always come back normal! It's so frustrating. I just wish one test could validate the way I'm feeling. My family, while supportive and loving, probably think this is all anxiety. I'm sure my anxiety makes everything worse but I haven't always been this way.

    I get dizzy, out of breath, shaky. I can't stand it. I just want to feel "normal". I go to bed at 10, wake up at 6 and still feel exhasuted. I don't remember what it's like to wake up refreshed like a normal person!

    I always doubt my dx. I've self diagnosed with MS, Lupus, Cancer, Heart Disease, ALS, you name it. CFS mimics so many other diseases.

    Anyway, I feel your pain. It's hard being anxious all the time like we are.
    Meow
  4. greatgran

    greatgran Member

    Stormsky, thanks for your reply, I read the heart article..I saw a cardo last year and he said all was ok..but I have my doubts..I drink plenty of water and fluids. I measure my water out each morning to make sure I get the amount I should...

    As for the blue lips my grandchildren use to ask me why my lips were blue, this was before the cfs and when I was feeling wonderful compared to now..

    I have an appointment with my PA in the morning but feel I am wasting my time and hers...Seems I always come home with no answers...

    Thanks for you input,
    Phyl
  5. greatgran

    greatgran Member

    Thanks so much for your input..Meow how do you go to school with the way you feel, you should be so proud of yourself there is no way I could do what you do...The anxiety is bad enough and with this disease..I think the reason you have the anxiety is the disease, or at least that is when mine became so much worse.. Good luck to you ....

    Enpower, it sure is a miserable life but guess we have to make the best of it, If I could just know for sure that my Dx is correct...I do hope we have some answers someday.. Thank you for your post.

    Dee, I try to pace myself but with families there is always stress and they always seem to come to granny...I just can't handle things like I once did...

    Thanks to each of you for your replies..