dx in Mar '03 1st time posting

Discussion in 'Fibromyalgia Main Forum' started by betternur, Jul 9, 2003.

  1. betternur

    betternur New Member

    I am on here everyday reading all of your posts. I have found alot of helpful information and just wanted to say thanks for making sure people know they are not alone. I feel fortunate in that I am still able to work a 40 hour week but am wondering for how long. I seem to get worse and worse. My diagnosis is FM but I am wondering if I have CFIDS. My struggles with severe fatigue are worsening as well as all of the Fibro symptoms. I am currently on Trazadone, and Ultracet, along with OTC sleeping pills. Is there something better that I am not already doing? Willing to try anything.
  2. KayL

    KayL New Member

    Most of what I've learned about FM and CFS, I've learned here, and from reading things recommended here.

    I still work a 40 hour week, and some weeks it's hard as hell to manage. Others aren't so bad. I just accept that this may be and up-and-down thing. For months I felt that I was getting worse, then things seemed to level off a bit, I actually felt better for a bit. This week has taken a downward spin some, but who knows, next week might be better!

    Do you do any form of exercise at all? Stretching helps me a LOT; I do stretches every day. Eliminating certain things from your diet will probably help you.

    I think there are no hard and fast rules that apply to everyone, each of us is different, and your symptoms this week may be different from your symptoms next week.

    Just keep reading and posting, I'm sure you'll get other responses.

    Karen
  3. Smokeymar

    Smokeymar New Member

    Hi,
    You couldn't have come to a better place for support and answers. You are very fortunate to be able to keep working so far.
    I was dx'd about 8 years ago. At the time the doctor and his nurse looked so sad, they both hated to tell me that we never get better, just continue to get worse. Of course, I have a few more diseases to go along with the fibro and that doesn't help either. LOL

    Like they've said each one of us is different, and what works for one probably won't help another. You'll just have to wait and see what's next. Anyway, welcome and don't hesitate to ask questions.
    Smokeymar
  4. suz41

    suz41 New Member

    Welcome to our world I am relatively new, and yes I still work a 40 hour week as an adolescent Intervention and addictions counselor in a local school district. I found it trying at times but at the same time I'm not going to crawl up in bed. It doesn't make me feel any better. Are you on any vitamins or supplements? I have noticed a great improvement in my pain since increasing my B complex vitamins and adding addtional magnesium and Glucosamine to my daily protocol. I also really have started to watch the processed foods and cut back to 1-2 small cups of coffee a day. May not sound like much but my sleep is improving and my flares do not seem as bad or last as long. You will find alot of helpful people here and supportive too. Check with your doctor about the vitamin/supplement to see what may work best for you, we are all so different. Again keep in touch let us know how you are doing. People on this board really do undersatnnd and care. LOL

    Suz
  5. pam_d

    pam_d New Member

    We are all so different with these illnesses, there seems to be no one thing that helps all of us-----I have gotten better recently by figuring out that I have food allergies (milk, wheat/gluten, soy, etc) that I never had a clue about. I was tested a few months ago, eliminated these things from my diet, and amazingly, started to feel that my fibro was improving. One area especially is energy! I am actually job hunting now for the first time in years. Obviously, not all of us with FM/CFS have food allergies, but if you've ever suspected a food makes you feel lousy, you might try eliminating it completely. Although, I had to be tested---I never knew I had any food intolerances, because I had no "obvious" signs, or what I thought were signs, like stomach cramps. I have since learned that this can do a number on your immune system over time & cause pain, fatigue, etc. Anyway, just food for thought (no pun intended). Use the "search" feature here; there's a ton of new & old info to access every day about both FM & CFS----I have learned so much from this site! Glad you found us here---hope you find something that helps give you some relief soon, too.

    Welcome Hugs,
    Pam
  6. betternur

    betternur New Member

    I would like to begin taking vitamins but I am not sure which ones to take. I do get a lot of exercise (I am a mother of 4) and I usually try to get into the pool at least every other day. I have a wonderful husband that wants to "help" me feel better too. He tells me to find out some vitamins so he can go get them. Anyone know much about Guaf?
  7. suz41

    suz41 New Member

    Hello again:

    Hard to know exactly where you should start. One suggestion some of the OTC sleeping meds interfere with Level 4 sleep which is the sleep most of us are not getting so be cautious about using them in that regard. Also Magnesium plays in big role in relaxing muscles in addtion to Malic acid which can be purchased at health food stores. Again we are all different. If my memory serves me correct I belive Shirl (Board moderator ) is on a Guai protocol. Search the board messages for Guaifensen and see what comes up. It may take a while to figure it all out but hopefully you can find some good info here.

    Take Care
    Suz
    [This Message was Edited on 07/09/2003]
  8. Shirl

    Shirl New Member

    Hi welcome to our little world here, glad you decided to post so we can get to know you better.

    Suz's had her Moderator's mixed up, its Mikie that is on the Guaifenesin protocol. Just type in 'Guaifenesin' in the 'Search Messages' link at the top of this page, and you will get mega posts on it, or type in 'Mikie'.

    I can tell you this much, you will need to get the book; 'What your Doctor may NOT tell you about Fibromyalgia' by 'Dr. R., Paul St. Amand' if you want to try the Guai. It is a must.

    I take Pro Energy (malic Acid and Magnesium Glycinate), and ZMA (zinc, magnesium and vitamin B-6) for deep sleep, fatigue, spasms, pain etc.

    Both these products can be bought right here at Pro Health. Just go to the 'Store' link at the top right of this page. You can read more about them, and order if you want. I highly recommend Pro Health's products, I have taken then before I came to this board, which would make it about three years buying their products. They are the greatest and the best priced anywhere.

    I take a whole host of supplements, but I would recommend you start with the magnesium as most of us are deficient in this mineral, it is important in healing the muscles while we sleep.

    Again, welcome to the board, and if you have any questions, just ask, we will try and help in anyway we can.

    Shalom, Shirl
  9. betternur

    betternur New Member

    I will take the advice of all of you. I really appreciate the help. Looks like I have some research to do... Thanks again, hugs to all (gentle ones of course).