brand new, looking for suggestions

Discussion in 'Fibromyalgia Main Forum' started by Echo2, Jun 21, 2003.

  1. Echo2

    Echo2 New Member

    Greetings to all;
    I've never chatted or posted anything before, but I have been sneaking peeks at this wonderful place for a while now. I have not been formally Dx with FM, but after what I've read & studied....I know. I have no insurance, which is why I have not gone in yet. My flare ups occur about 3-4 times a year & last for about a month each, so I am not so badly off as so many of you (so sorry for your pain!) I do have a doctor that will treat me for my "arthritis" so can get those all important pain pills when really absolute. I take Ultram daily now. What I want to know is, is it really worth finding that wonderful doctor when there is no cure?? I get despondant sometimes...when the pain gets bad I just do not want to be alive. Obviously, I am having a flare right now, please forgive the self pity. I read all these things that may or may not help, all cost $ I just do not have. Please advise me if you think the doctor search is truly worth the cost, given that I am functional for about 2/3 of the year. Of course, that makes my bad times very confusing to my family, friends and co-workers. I wish I'd get giant blue spots or something so people would believe me! Thanks so much for letting me put my feelings down here.
    By the way, the best little device I own is a pocket recorder, digital dude. I grab that thought quick before it's gone, and if I can remember to play the dang thing back, I even get things done sometimes! :)

    Sending Sunshine,
    Echo2
    [This Message was Edited on 06/21/2003]
  2. kgg

    kgg New Member

    If you are happy with your doc and he/she helps you with your pain, why change? Have you ever approached the subject of FM with them? Are they willing to think out of the box and try different tests and meds that might help? Do not change if you are happy with them. Many of us change docs when they fail to validate that we even have this DD or won't help us with our pain.

    Sorry to hear that you are not doing well at present. ANd don't worry about the self pity, we all get it. Hope this is a short flare for you. -Karen
  3. Mumu

    Mumu New Member

    I would suggest that you forget about finding a doctor for the FM, because as you say, there's not much they know to do for it anyway. What seems to help most is avoiding stress and getting mild, regular exercise and plenty of uninterrupted sleep. Those are the things to concentrate on, and they don't cost anything. Avoiding sugar in the diet helps some too. And find things that you enjoy doing, and make time for them. People like us tend to overwork ourselves trying to do for everybody else, and we neglect our own needs. Good luck to you!
  4. garyandkim

    garyandkim New Member

    they are the best if you can remember to use it. Can you get MA? Some good FMS docs do accept it. I know ours excepts all so people can see him. We found our doc on the referal, not from here but it's the same one. I interview all docs before we have them become our docs. either on the phone or an apt. The phone is free. Ours talked to me for over an hour when he called me back. He is a true treasure. FMS is now being found tobe progressive so when you are back to functioning pace yourself. Find out about free screening for different things when in your area. Like at hospital, those trucks that come about. Get all your med. records, reports, MRI's, test results everything and keep them for ever and let docs copy them from you not keep. Also keep a diary and a list of every symtom you have no matter how small and the dates they started or approx. This way you have your own record. There are some things like magneium or just a good vit with all it all in it due to cost factor. Everyone has the right to do a pitty party and most times posting and talking may help you out. Keep on researching and glad you posted!

    Take care and good luck, Kim and Gary
  5. Shirl

    Shirl New Member

    Hi Echo, welcome to our world. Glad you decided to join us, and that you have enjoyed reading the board.

    I used to have flares now and then too. Then they started getting more frequent, most are caused by stress, then again by usuing those muscles too much and not getting sleep.

    As for a doctor, well that is a decision you will have to make for yourself.

    It is difficult for others to understand us, we usually don't look ill, and when we are feeling good, we are usually the super people, for awhile that is!

    HOpe you stay with us, and again welcome to the board.

    Shalom, Shirl
  6. zestytx

    zestytx New Member

    I've had this disease for over 30 years -- long periods of remissions when I was younger, but now that I am nearly 50 I have to manage it more closely.

    Getting enough good sleep is key for me. Stay off the computer late at night. Go to bed. During the day try to get out in the sun for at least an hour without sunglasses on. Do gentle exercise. WALK at a moderate rate for as long as you can -- an hour is optium. Eat low carb diet (but have a treat now and then!) Try Dr. Andrew Weil's CD called BREATHING - The Master Key to Self Healing. Vitamins and supplements DO HELP. Pain and anti anxiety medications and other drugs have their place in treatment too.

    Learn to be your own best advocate. Recognize that YOU are responsible for how you feel. ANd that no matter what you do, you will still have days when you feel pretty yucky. But that's OK, because you know you are doing everything you can to make the other days as good as they can be.

  7. Mikie

    Mikie Moderator

    To give up finding good docs and good treatments. A good doc is worth his or her weight in gold. There are so many treatments which can help us. No, there is no cure, but many who continue to heal do so because they continue to look for new treatments. Not everything works for all of us, but we can keep the things which work and leave those which don't.

    Of course, in the end, it is up to you. I, personally, will never stop seeking healing. I'm not in denial; I know there will always be limits on my health until there is a cure. In the meantime, I continue to seek healing.

    Love, Mikie
  8. Raven41

    Raven41 New Member

    Hi Echo! I am new here too (just joined yesterday). I have thought the same exact things over and over (why go and get a more expensive specialist, when my family doc believes me and is treating me for this crazy illness. Even though the pain still exists, with the medications he has me on, I get some relief here and there. I have medical insurance (BC/BS) and it's a very good plan, but the bloodwork that he ran on me is definitely not "routine" and I ended up owing several hundred dollars, out of pocket, just to get an idea of what might be going on and to rule out the other things. I was diagnosed at first with Epstein Barr Virus, and he "thought" it was mono... but it's lasted so long that he has finally dx'd me with FM/CFS. At least I know that I don't have lupus and I don't have rhuematoid arthritus... but he says what I have is bad enough (basically same symptoms). God help us all! And the part about your appearance and wishing that you had large blue spots all over so people would believe you... I can TOTALLY relate to that one! haha I am someone who wears makeup and I rarely "look" sick on the outside, so people automatically say things like... "well you look so good I'd have never known you were hurting" or "you look much better today!" haha makeup does wonders! But sometimes I wish that others around me could SEE how I am feeling inside. As the others have stated, I sure hope this is a short flare for you... God bless!
  9. horsegal

    horsegal New Member

    I always seem to get on the end of things. Take the above given advice. It's good. I think staying with your doc seems to be a good idea. I have the best help with a GP other than a specialist. If someone is giving you some help with pain, don't get rid of them!! Getting rid of pain is # 1 for me, then help with sleep etc. Look for a myalgia site including Dr. Robert Bennett. You can look up his name on this site in the search engine and get GREAT info!!

    Horsegal
  10. bitter-sweet

    bitter-sweet New Member

    Hi Echo2, I know what you are feeling about people not believing you. We have all run into those kind of people. Unfortunately, we feel like we have to have proof. We shouldn't worry about shallow people. Some web sites have information you can print off specifically for family/friends/caregivers. Also, the Arthritis Foundation prints a pmphlet that is informative. I have given it to all my family. It does take cash for many things. Could your library be a source for books or tapes to help you learn to cope when you're feeling so hopeless. I don't know your income, but could the Family Independence Agency in your area help? I was told for years that I have "arthritis" too. I am convinced that my doctor just wasn't taking a sincere interest in my pain. I went to the rheumy on my own. I would still suggest you search for a doctor who can help you. I wish you the best.
  11. Echo2

    Echo2 New Member

    I am overwhelmed by the kindness of you all. Thanks for the input. I have started a diary, and then when I read the boards, I realize some symptom I never connected has been happening for YEARS, like TMJ for one. Then I have to edit the diary! lol I have decided to seek out a Dr. I found on the good doctor list. I want to fight back, not just lie here and suffer, even if that's exactly what we have to do sometimes. Thanks again, so much.

    Sending sunshine,
    Echo2