20 Dec 2009
I'm so sorry you've been diagnosed with fibro. It hasn't been easy for me; I was diagnosed over a year ago, although had been having symptoms for at least two or three years before that. The most important thing to do is to find a doctor you feel comfortable with, who understands what you are going through, and who will work with you through many forms of treatment until you find one that works for you. Fibro definitely gives definition to the statement that medicine is more art than science.
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I also have a thyroid problem, and recently when I had a visit with my endocrinologist she went over a list of vitamins she puts her patients on. She suggests 5000 IU of vitamin D, sublingual B-12 4x a day, omega 3 and omega 6 fish oil (lots of it, but I can't recall right now how much) and calcium-magnesium supplements. The list that she gave me indicates that a deficiency of vitamin D can cause fibro-like symptoms. 5000 IU is a LARGE dose, so don't take that much without getting an ok from your doctor, and probably blood tests to see what your levels are. I have since started on these supplements (or restarted taking them... after awhile you just get sick of taking so many pills, you know?) So after maybe another month, I should have a better idea of if they are helping.
I just started Savella this past week. I had tried Lyrica and Cymbalta unsuccessfully, so we'll see how this goes. I've also tried "alternative" type doctors such as Holtorf Medical Group and Dr. St. Amand with the guaifenesin treatment. Although I improved enough while taking guaifenesin to go back to work, I don't know how much was attributable to the treatment and how much came from within and just pushing through to get back to living my life. Like I said, it seems to be mostly a hit-an- miss process. Also I hate to say it, but you cannot count on your family to really know what you're going through. Personally I just don't talk to my family about my health issues, as it causes me more stress than it's worth. My mom is an RN and honestly has no tolerance for sick people. Ha ha, I know, how sad. But true. My husband is really understanding and supportive, and a couple of dear friends. Otherwise, I'm really trying to muster strength within myself. Talking to others with health issues who have a POSITIVE attitude and a desire to live life helps. Try to steer clear of people who call themselves a support group, but really have gotten so "down" that they just wallow in misery. I found that I allowed that type of thinking to really bring me down with it after I was first diagnosed.
It is VERY important to pull yourself up and try to put your life in perspective. Chronic pain can sap the life out of you. Waking up and facing it daily can make you very depressed. If you are like most, the people around you who don't understand will say the depression is causing the pain, not the other way around. Then it just becomes a vicious cycle that becomes difficult to get out of. Break the cycle early and save yourself all that extra energy you don't have to spend. I only say this from my experiences over the past couple of years. Hang in there and know that you are worth all this effort to get better. Many days, you may feel like withdrawing and curling up into a painful ball and crying. Some days, you'll just have to do this. But the next day, after you've been able to rest and gather some energy, try to go out to live your life again.
I'm also learning that exercise really is important. What spurred my flare up that triggered my diagnosis was an intense kickboxing class that I was taking. Yikes. So for a long time after that I was really afraid to exercise. But my Dr. who I really like and trust got me walking, stretching, and eventually I will get back into a yoga class, because it really does help you to feel better. Just pace yourself and don't do too much at first.
Sorry to ramble, I've just been struggling so much myself, and feel like if I've learned a few things along the way, hopefully it might help someone else navigate it all. Good luck to you in this time of your life. Please let us know how you are doing!