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Old 02-23-2010, 11:28 AM   #1
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is it always this hard?!!

Help anyone please. I am 29 years old. i had cancer at 18 which isnow all cured (touch wood!) I was diagnosed last year with IBS but in Oct I got really intense pelvic and hip pain and have been off work since. At times i feel likea fraud but then I'll do something like load the dishwasher and I'll bein agony in my back pelvis hips kneees and fingers. i saw a rheumatology consultant who said I had Joint Hypermobility and possibly Fybromyalgia. Iwas unsure about this as he was difficult to understand(saying No at the end of every sentence was very off putting!) sowent to my GP who usually is brilliant. He said That this diagnosis was a broad term usedto describe numerous symptoms of varying degrees. Mu mother in law has Fybromyalgia and she would have you believe its a dgenerative disorder that is going to ravage her body over time but what I've read so far that is not the case. Other consultants I have seen say its my Hodgkins however oncologists say no! Its so frustrating. My Gp is requesting a copyof the rheumatologist report asap but I just feel in complete limbo.
Any help and advice would be appricated to stop me going insane!!

 
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Old 02-27-2010, 12:55 PM   #2
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Re: is it always this hard?!!

Hey LauraKate and a huge welcome to you. I am so sorry you are going through all of this. It is not always hard. FM can hit and wreak havoc while it flares, but there are times when you won't be flaring up. It is not a degenerative disease. When you are flaring it can feel like many things... it can hurt so bad in one area that you feel as though you have cancer in that area and it just hits out of no where--you can start exercising and dieting and all of sudden your hip can be in so much pain and the doc will diagnose you with bursitis even; other times the pain can be everywhere -- it can feel like someone has poured cement inside you and the pain just sets up everywhere and you're hardly able to walk, hold a brush, and the accompanying fatigue is relentless--that usually happens when you have overdone it. What's amazing is that a pain specialist or a rhuemy doc can touch "trigger points" and most of them on you will hurt if you have FM. Their is also something in spinal fluid that is elevated. There are sure ways to find out if you have it, in other words. Before you seek the validation of an FM diagnosis, think about insurance issues later down the road. If you think you have them symptoms, try trigger point massage therapy if the pain is in one area. If it is everywhere and has set in like cement, honey, you are going to have to rest your way through it. Supplements, like water soluble magnesium, can help more than a lot of meds. Best of all to you! Feel better!

 
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Old 03-05-2010, 04:57 PM   #3
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Re: is it always this hard?!!

There are so many conflicting ideas in the medical community as to what causes FMS, even those MDs who think this is a trash can diagnosis. FMS is very specific, and is not a trash can diagnosis. I would suggest reading material on FMS so that you can be educated before going in for your doc appointments. A couple of books I would suggest is "What Your Doctor Won't Tell You About Fibromyalgia" by St. Amand. Another good book is "From Fatigued to Fantastic" by Teitlebaum.

The syndrome, if left untreated can cause such a horrible constellation of symptoms. It starts off slow, with a symptom here and there, so you don't really connect the different symptoms with being one thing. As time progresses, FMS begins a more progressive dance in your body that is hard to ignore. By then, you are seeking a physician that can help you. Now you start to hear all sorts of conflicting advice that can be absolutely mind boggling.

The one thing that has helped me is the Guafenesin protocol, pioneered by St. Amand (one of the authors I mentioned above). I am so much better than I was when I first started using the protocol. I suggest you look into it - your doctor won't mention it to you and may even think Dr. St. Amand is a quack (he is anything but).

Kirstee

 
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