new to message board looking to talk about effects of CFS

Discussion in 'General Health & Wellness' started by danigirlie, Jul 10, 2003.

  1. danigirlie

    danigirlie New Member

    HI all,
    I am new to this message board and have read some of the replies and it does ease my mind to know that there is 'this place" to come to find things out. I have had symptoms of EBV which never subsided and have been tested for everything from MS, to Lupus, to cancer and finally referred for possible psychiatric treatment. I then was lucky enough to have a caring and attentive primary MD who referred me to a CFS specialist who has diagnosed me with CFS and is still testing for Lyme disease. this has been going on for 2 years of my life. I am highly sensitive to any type of medication (even aspirin) so have chosen to try a more holistic route for helping my symptoms. my biggest problems have been with 'brain fog', forgetfulness and short term memory problems. That truly drives me nuts. i have tried Lexapro and another medication (used for narcelepsy, but was seemingly helping others with CFS) and couldn't handle either of them -- as i said, i am highly sensitive to medications--so now i have consulted a herbalist and have been taking wheatgrass juice daily in addition to my stringent vitamin, herb and supplemental diet. It has helped but I am still at a loss over my 'brain-effects'. Does anyone out there have a similar story or can tell me of any non-perscription solutions to the memory problems??? I cannot have St. John's Wort or similar type stuff as it reacts to me as well (highly sensitive).

    If it helps anyone-- I have a juicer and about 40-50% of my diet includes natural juices and the wheatgrass juice. this has given me more energy at times and i feel has helped me, I also take EFAs in addition and I can last through the day without too much fatigue. I am still tired all the time but not nearly as bad as i once was.
  2. twin2

    twin2 New Member

    I'm fairly new to these boards too. I've had CFS for about 2 1/2 years now after a bout with Parvo virus. It started with a rash which I disregarded since I had no other symptoms. Then the fatigue hit. WOW! It was horrible! Shortly afterwards, the joint pain and puffiness started. That's when my doc diagnosed the Parvo. Three months later, when I should have been over the Parvo, I still had the same symptoms. I got tested for a number of things - arthritis (2 times), Lyme (3 times now), other tick-borne diseases, EBV, Lupus, etc. and even had a bone scan. They all came back negative. It was so frustrating! Sometimes I wished they would find something so they could fix it!

    I never really recovered from that bout with Parvo. For about 2 years or so I was plagued with fatigue, brain fog, and joint pain (among other things). I'm much better (except when I'm in a flare - like now). Still, if I overexert myself, I pay the price the next few days. I tried a number of meds but they either didn't work or made me sick. I'm hoping to find one soon to get rid of the pain so I can sleep well.

    I know how you feel in regards to the bain fog. It's horrible forgetting the names of people you've known for years. My kids now finish my sentences when I get stuck...although sometimes they're WAY off! I also leave notes for myself everywhere! The only thing that seems to help me now is a very good night's sleep. In the beginning, that didn't even help.

    Sorry I can't be of much help to you, but I wanted to write because your situation sounds so much like mine.

    I'm glad you're feeling a bit better. I hope you continue to feel better and can kick this thing (me too!) :)

    Lots of luck,
  3. Shirl

    Shirl New Member

    Hi Danigirlie, we do have a board just for CFS/FM, I know you have not been there yet.

    Just go to the top of this page were it says;' Message Boards', an index will come up, just click on 'Chronic Fatigue Syndrome' or 'Fibromyalgia', they are one and the same board.

    We have thousands of people there that can help you. Please come over and visit!

    Shalom, Shirl