New person here please read, thanks

Discussion in 'Fibromyalgia Main Forum' started by bigmama2, May 11, 2006.

  1. bigmama2

    bigmama2 New Member

    Hello everybody! I'm new here and hoping to get help and help others here regarding CFS. The short story- I,ve had fatigue for 11 yrs but didn't think it was CFS because I didn't have the muscular aches/pains that most CFSers have. Well now (last few months) I have the crazy stiff neck and upper back and shoulders so I have been researching CFS again and think I have it or something veery close to it. Please read my profile for more info. Just recently went to FFC philly, and doc said I probably have cfs. Am going to get lots of blood work done. Hope stuff turns up so I can treat it and get my life back. I know from what i have read here that it is very difficult to treat and you have to try many things, but it gives me hope that some people have been getting better. Any thing that helps me I will post on these message boards. Thanks alot for reading. Sincerely, BigMama2
  2. leubie

    leubie New Member

    Hey------how are you??? I hope you are not feeling too tired or are in too much pain!!!!!!--------------I have fibro and all that goes w/ it.---------------------I have not been dx w/cfs--------------------although i would not be surprissed if it was next-----------i understand your dx and I FEEL FOR YOU------------ There are a great group of people here--------if you need anything--------------usually someone fom her SPEAKS uo and points you in the right directions.-----------This site and the people here are really important to my wellness----------I cant express the bond you will have here!!!!!-------------GOOD LUCK IN YOUR QUEST/FEELFREE TO POST TO ME ANYTIME------------LOVE TO ALL----LAURA
  3. leubie

    leubie New Member

    Hey------how are you??? I hope you are not feeling too tired or are in too much pain!!!!!!--------------I have fibro and all that goes w/ it.---------------------I have not been dx w/cfs--------------------although i would not be surprissed if it was next-----------i understand your dx and I FEEL FOR YOU------------ There are a great group of people here--------if you need anything--------------usually someone fom her SPEAKS uo and points you in the right directions.-----------This site and the people here are really important to my wellness----------I cant express the bond you will have here!!!!!-------------GOOD LUCK IN YOUR QUEST/FEELFREE TO POST TO ME ANYTIME------------LOVE TO ALL----LAURA
  4. georgianewyork

    georgianewyork New Member

    Welcome to the board. There is comfort and hope here with this wonderful group. Together we can all work towards a healthy future. Smile.
  5. Fibro-Kel

    Fibro-Kel New Member

    Hello, and Welcome to the site! I can truly sympathize with your fatigue problems, as it can be HELL at times!!!
    I was originally diagnosed with Chronic fatigue snydrome back in 1998. It took them a whole year of running one test after another, at one point I gave up asking what the tests results were.

    That is until one day I went in for my dr. appt. and he said "well Kelly, you have Epstein-Barr-Virus", or also called CFS. They do a blood test (E.B.V. test), and if your blood titer is 110, or higher, then you test positive for the virus. Well, mine was 366 !!!

    I'm always tired, and if I drive for long distances, I sometimes have a tendency to want to doze off! I currently take "Ritalin". But it doesn't help me much anymore. Usually people with Epstein-Barr-Virus, or (CFS) at some point, end up with "Fibromyalgia", or vice versa!~!~!

    Do you have any problems with running a "low grade fever"?
    I'm always running a fever! Usually between 100-101. It is a very frustrating disease, but whats more frustrating, is the fact of trying to find a "Real Doctor" who actually knows how to treat it!

    But, no matter what, just hang in there! You'll have days' when you may want to say... "Forget it, I can't do this"! BUT, "YOU CAN, and YOU WILL"! Because if we give up, we'll never find a cure for this horrible disease! And NEVER, EVER, let anyone make you think that it's all in your head!
    "GOOD-LUCK"!!!!!!!!!!

    "GOD Bless",
    Fibro-Kel
  6. bigmama2

    bigmama2 New Member

    Hey Leubie, Thanks for reading and responding. It's so nice to talk to people who understand what we are going thru. I read your profile and saw you have lots of issues with your spinal cord. I recently went thru physical therapy for my bad lower back pain, they found I have a bulging disc L4, L5. I wanted to tell you that for me the physical therapy really helped. Have you tried it? For me they did heat packs, electrical stimulation, ultrasound, and taught me stretching and stregthening exercises. (Very Important). Also swimming helped my back.
    BigMama2
  7. bigmama2

    bigmama2 New Member

    Georgianewyork,
    Thanks for taking the time to read and answer my post. I have been "lurking" on this forum for a month or so and I as glad I decided to participate in it. I have learned alot already here plus been reading lots of books on CFS and alternative healing. I am fed up with regular doctors because they haven't helped me at all. Got better info here!! Take care, BigMama2
  8. bigmama2

    bigmama2 New Member

    Fibro-Kel,
    Hello there! Thank you for your nice response post. Your profile said you got diagnosed a long time ago -1998 -I think. Have you found some things that make you feel better? I sure hope so! Did you get rid of the EBV? I will be getting tested for that, and just about everything else on the planet!! No, I don't have a low grade fever alot, but I have read that many CFS/FM people do.

    Yes, I agree that one of the worst things is trying to fing a doctor who understannds and is knowledegable about these disorders. I've been seeing doctors for 11 years with fatigue, and just now getting diagnosed!!!
    Take Care, BigMama2
  9. gladone

    gladone New Member

    Welcome to the board!

    I just found this site two weeks ago myself and have gotten addicted. It is a great place for info and friendship building.

    I was just dd with CFS, FM, Restless Legs and Chronic EBV. So I know it can be alittle overwhelming learning how to cope.

    I hope this site gives you as much information and hope as it has me in the last weeks.

    Happy to have you here!!!
    Gladone
  10. petsrme

    petsrme Member

    Welcome Bigmama! I love your name. My family started calling me bigmama many years ago because of the movie The Fox and The Hound. The owl is called big mama. I laughed at that and said if anyone called me big mama I would be mad. Well, they took that as an invitation and started calling me that. It started to really peeve me when I gained a lot of weight, but they still call me that after I have lost weight. I kind of like it now.

    Anyhoo, welcome to the site. I hope you find a lot of help and info here.
  11. TxSongBird

    TxSongBird New Member

    I just went through a phase with low grade fever, joint pain, felt like a mac truck had run over me, swollen glands, swelling in the ankles, feet and hands. The Dr. put me on an antibiotic for 10 days thinking it was something bacertial, did no good. Dr. then put me on prednisone for 10 days, did no good except blimp me up further. All my blood work came back elevated white cells. I tested negative for Arthritis, Lupus, MS, had plenty of iron and minerals. After 50 plus days I got tired of being told that he didn't know and that I would just have to deal with it so I am still swelling some, but the fever is gone. I think I am suffering from CFS along with the Fibro and I understand how you feel, it sucks. I hope you feel better soon.

    TxSongBird
  12. Lunatic2

    Lunatic2 New Member

    This is the best place to get "feedback". Everyone shares openly and we really try to give you information to direct you to finding ways to cope with life.
    Good Days ahead for you and I wish you well.
    God Bless.
  13. bigmama2

    bigmama2 New Member

    Hi Gladone, and everyone!! I also have a dog who I treat like my actual child. I call him my furry son. hee hee
    I occasionally have restless leg syndrome at nite when trying to sleep. Taking a bath or shower then applying moisturiser to legs helps me. Have you tried this?
  14. bigmama2

    bigmama2 New Member

    Hello! I know what you mean about being called bigmama! A few friends started calling me that years ago before CFS when I was thin and fit and had a rather large chest. Now that I have gained 130 pounds(aarrggg!!)the nickname has taken a whole new meaning. I saw your profile and boy are you pretty. I am glad you have lost so much of the weight you had gained. I pray I can loose some too. I must try the green tea, like you did. Take care, the other BigMama
  15. bigmama2

    bigmama2 New Member

    Thanks for posting! I have noticed that so many of us are total aminal lovers!

    Don't forget to try the tennis ball trick soon. Do it against a wall (not just a chair). I hope it helps you. It has helped me. I also think the more often you do it the better, because it is like a mini massage. Good luck! BigMama2

    PS do you live near Austin? Have you been there? I have, and it is awesome!
  16. bigmama2

    bigmama2 New Member

    Thanks for the welcome! I loved your wild outfit on your profile! It gave me a smile. Do you wear stuff like that alot?

    By the way about your nose/ sinus problems.. have you tried nasal rinse (sometimes called nasal lavage)? I tried it (due to my constant stuffed nose, and sometimes sinus problems). It really helped. It's kind a hassle to use, but if my sinus problems were more frequent I'd go to the trouble cuz it really helped me. My rinse bottle is from a company called Neil or something.

    Take care! BigMama2
  17. bigmama2

    bigmama2 New Member

    Thanks for the welcome and well wishes. It looks like you are new here also. That was nice of you post info about your spinal spondyosos (sp?). It's another cause we call look into. I am so thankful to have found this site to give and receive advice on this difficult disease. take care, the BigMama2