JUST Dx'd...and totally confused

Discussion in 'Fibromyalgia Main Forum' started by cici_chindfu, Dec 23, 2002.

  1. cici_chindfu

    cici_chindfu New Member

    Hi...i don't know if this is where i belong for this...if not sorry.
    Any way i was Dx'd with lupus a couple of months ago and just today when i went to see my rheumy, he Dx'd me with fibromyalgia. Now i am extremely confused because instead of actually explaining this to me he just handed me a pamphlet. (Let me point out that this pamphlet tells me NOTHING!!) So what i am hoping is that some of you would be willing to help me out with any info. He told me to get as much sleep as possible, and that there are no tests that can be done to determine the severity or anything...so to me this sounds really bad on top of everything else that has been tossed my way the past couple of months. I appreciate any help at all.
    Casey

    PS...sorry if this sounds like i'm all whiny and scared....i'm not really a whiner...but i am a bit aprehensive about it
  2. sb439

    sb439 New Member

    I've got mainly CFS, not FM, others will give you more fibromyalgia related information. But there are quite a few tests that can be done, and there are things you can do to get better, with diet, lifestyle and medication. You'll find lots of info on this board.
    All the best,
    Susanne
  3. teach6

    teach6 New Member

    You have come to the right place to ask questions and learn about FM. What a way to be treated by your doc! I think you might want to consider looking for another one who is willing to work with you and help you feel better.

    There is a doctor referral button at the top of this page. If you click on that it will take you to another page that gives all kinds of suggestions for choosing a good doc. The last thing is a link to the Co-Cure good doc list. It is a great place to look for a doc.

    While most of us have sleep difficulties and getting a good night's sleep is crucial to healing our muscles, just telling you to sleep a lot is not the answer. In fact, I've found that lying around too much makes my FM pain worse. Sometimes that can be a Catch 22 for me since I also have CFS, but I've pretty much figured out how to balance my need for rest and my need to be up and moving and changing positions frequently.

    I would suggest that you begin on our home page where you can read about the symptoms and diagnosis of FM. Then you can also read about some of the treatment plans available. It can be a bit overwhelming though, so I suggest you do it a little at a time.

    In the meantime, come here and ask questions. Usually several people will have suggestions that you will find helpful. This is also a place where you can feel free to vent when you are having a particularly tough day. We all have them occasionally. I think the hectic holiday season is bringing out the worst in all of us.

    Welcome to the board!

    Barbara
  4. Annette2

    Annette2 New Member

    Welcome to the Board. I have Fibromyalgia - I was dxd 5 years ago. You will find a lot of info here. There are a lot of things you can do to help yourself - diet, exercise, meds, supplements. There are also a lot of good books you can read. You'll find that people here do various things - not all things work for everybody. Some take meds and some don't - you have to search to figure out what works best for you and your body. Fibromyalgia is a real "pain in the a**" but it will not kill you. Right now there is no "cure" but as I said above, there is a lot you can do to help yourself. I hope this helps!!!! Happy Holidays!

    Annette2

    P.S. - I saw in your profile that you're from New York - are you from New York City? I'm from the Bronx....
  5. Shirl

    Shirl New Member

    Hi Casey, a big welcome to our world! I have Fibro, and as someone else said; 'it won't kill you', but it can be painful. I have had this for twenty years now, and I am still here!

    As for the Lupus, I am not familiar with it, but 'Teach' is right, go to the 'Home' page at the top left of this board, and type in 'Lupus', then 'Fibromyalgia', and there is some wonderful articles on both.

    We also have a Support Board for Lupus, you might want to check there too. Just go to 'Message boards', it will bring you to an index, click on Lupus.

    There are some great books on Fibro too.

    I would not get upset, just find a doctor that will work with you, and see if these two illnesses are really what is wrong with you.

    There is no cure for either one, but there is relief for them.

    Again, welcome to the board, and hope we hear from you often.

    Have a great Christmas, and a wonderful New Year.

    Shalom, Shirl
  6. seaview

    seaview New Member

    Iam glad that you found your way to this board so quickly. You will be able to ask lots of ?s and get support from people who understand. My first suggestion to you would be to go to the library(the real one) and see if any of Devin Starylands books are there. I believe their titles are Fibromayalgia and Myofacial Pain Syndrome and the other is the Fibromyalgia Advocate Book. These are REALLY good. You can read some of her articles in the library on this site first to acquaint yourself with her. When I first was figuring out this FM thing I thankfully found her books at the library and they really answered alot of my ?s. I bought my mom the newest additions this year and they are great. There are many other good books out there but I found hers the easiest to read and the best at helping learn at the beginning. Use the library on this site to research. Lots of good stuff. I am currently trying something called guai.A Dr. St.Armand wrote a book about using this medicine to help reverse some of the symptoms. You can read about him here also or just put his name in on a search engine. I know this is all very overwhelming but be thakful you have a doctor who understands and at least DX you. Many of us have gone to lots and lots of dr.s before someone gave what was happening to our bodies a name. So, be thankful :) continue to post ?s and do read all you can to educate yourself.
    I welcome you and send gentle hugs your way....Kathleen
  7. kyliesmom

    kyliesmom New Member

    Been there! Done that! And still confused. This disease is a paradox! I've had it for 3 years and sleep is the key to relief. Restful sleep. I would wake tired and in pain after it took almost all night to get to sleep. I tried sleeping pills,pain pills, muscle relaxers, antidepressants and became emotionally another person. All prescribed by an understanding Rheumatologist. With no relief, Covered up or glossed over the symptoms. I had plastic surgery and took arnica montana 1 week and now 8 weeks after and have not needed any meds and even cancelled my rheumy appt.Been going every 3 months and more for 3 years. I just don't need it anymore. This arnica was prescribed to reduce swelling and muscle pain and soreness after surgery and has completely relieved my fibro symptoms. AHHHH! I'm surprised and very happy.Just wanted to share my good fortune. want some www.vitanet.com cheap and works. 3.95 for 160 pills.I found it on an aol search. Hope this helps you
  8. 1maqt

    1maqt New Member

    Have had Fms for long time. Symtoms are mulitple, and
    varying. Try to be as peaceful as you can about it, meaning that it conserves energy, not that it is easy by any stretch of the imagination.

    Find a doctor that will work with you, this is essential.
    just found one myself. Listen to your inner self...as to how you feel, and if something is bothering you don't let the Dr. dismiss it.

    We are all here to support you and to be as kind and gentle
    as possible. This is a unique board. Filled with good info.

    There are no wrong questions. we all started from the beginning just like you. Hope we help! 1maqt
  9. Mikie

    Mikie Moderator

    Welcome to our board. This is a very good place to get info on FMS. We do have a Lupus Board, but I don't think it gets the use this one does. You can click on the strip at the top of the page on Message Boards and it will take you to all our boards.

    You need a good doc who specializes in our illnesses. BTW, did your doc tell you what kind of Lupus you have? How did he make the diagnosis? Lupus and FMS often go hand in hand. Sometimes docs make the diagnoses of Lupus based a lab tests which may or may not be reliable. You really need a doc with more experience. There are a lot of things which can be done even though there are no cures for our illnesses.

    Learn as much as you can because most of us have found that we cannot merely rely on docs alone to help us. We have to become our own best advocates and research treatments available. Both treatments which I am using for my FMS and CFS are helping tremendously; neither my PCP nor my rheumy had ever heard of them. This is not unusual.

    Good luck to you. Our members are a wealth of info and our library is a good place to start reading.

    Love, Mikie