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ups and downs



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04/29/2008 18:54
kristenleigh
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hi! am new to the site- i am really struggling with the ups and downs- and i am frustrated that there doesn't seem to be any really good books out there for me to even learn about what FM is- how it acts- what i am supposed to do- what these flare ups are caused by. i just don't understand what i am facing here and the doctor isn't helpful.

most days are ok- but i know that is primarily due to the medication, because if i miss a dose- i really hurt.

any help from anyone would really help at this point. i really feel alone.

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04/29/2008 19:13
Matafleur
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kristin-

There are a couple books out there that can help, but none have the definitive answers for all your questions. FM is quite individual to each person and although it shares similar symptoms among us, I would bet that the degree to which each symptom effects us, varies across the board. The majority of doctors cannot help because they, themselves don't know what they're facing either. Some say it is an immune disorder, a hormone disorder, nutrient deficiency, nervous system disorder and finally, there are some who still believe it is all in our heads unfortunately.

There are some incredible advances being made in the field, but none fast enough for those of us that have FM.

There is a wealth of good and bad information on the internet however, you can at least see what kind of information is out there, but just a suggestion here, don't let what you read, get to you. I am learning that you have more control than you think and while you may not be able to do all that you used to do, you can listen to your body and let it guide you.

Take some time to write down your symptoms no matter how small and then write down what you were doing when they happened and see if you can learn to recognize the warnings your body is sending you. Be thankful for what you are able to do!

You have a lot of support here.

Check out Fibromyalgia and Chronic Myofascial Pain: A Survival Manual and The Fibromyalgia Advocate by Devin Starlanyl

Fibromyalgia For Dummies

From Fatigued to Fantastic!: A Proven Program to Regain Vibrant Health, Based on a New Scientific Study Showing Effective Treatment for Chronic Fatigue and Fibromyalgia by Jacob Teitelbaum

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04/29/2008 19:29
jgamble409
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Welcome to this forum. I know that everyone here will be of great help to you with any questions you have. I went to the library and checked out a few books about fibromyalgia and got a well rounded opinion of it . I also bought the book Idiots Guide to Fibromyalgia and a DVD from the Mayo Clinic. I have a tendency to take what relates to me a this time and use it and try not to read any farther into the books as I need to. Then if something new happens I can always go back and revamp my plan. Welcome again. Jean

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04/29/2008 21:09
hellojenny
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Good book????

I have read several books that i found to be unhelpful. I felt like i could of spent that money on a new medication trial. And im not being negative, its just that the thing that works for you might not work for the next person so its basically all about trial and error. Sure i was happy to try the things they suggested but none of them seemed to work. The best advice someone has ever given about fibro was to log everything i mean everything so you can kind of predict how the next day will be (so to speak) it is very time consumming but its help me tremdously. For instance i will log went to bed @ 9:00pm woke up at 6:30am ------- i still felt tired, the weather was cold i took this med etc.. For a while it was routine then i felt so much better i even ate the same things daily. Then i went on vaction fell off of the routine and was back in pain, not that it ever left it was just more managable.

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