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02-14-2013, 10:56 PM #101
Everyone has been through the exact same things you would think they would have more specialized DR's for FIBRO They had a huge convention on it about4or 5 years ago for DRs I told them at my SSI hearing and told the dr there he must have missed it or he's not very specialized. I was in so much pain that day and was pretty upset cuz they denied me the first time. HAPPY VALENTINES DAY! My pain is still unbearable like last night and I remembered to take all my pills today! LOVE YOUR FRIEND MANDA!
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02-15-2013, 08:23 AM #102
OMG!!!! When I forget to take my meds I pay for it for the next week!
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02-15-2013, 10:14 AM #103
Would you believe that from 2000 to 2012 when I went on regular Social Security that I never had to go for a hearing for continuation of my SSI benefits? That's how backlogged Ohio is and how badly they keep track of their cases! It's a wonder anyone gets SSI in Ohio. At one time, they had other judges from other states hearing cases to help undo the backlog of cases.
Judy
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02-15-2013, 11:08 AM #104
You said it all!! A few years ago a bunch of (ex)friends called my lazy and selfish and quit being my friends. Luckily I have met new and truer friends. At least now with all the drug advertising more people have heard of fibro and know it's real. It's so nice to get to share all of this with people who understand.
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02-15-2013, 11:58 AM #105
I know. "Walk a mile in my shoes." Let them live one week in our bodies, and they will never want to be us. Guaranteed or want our pharmacy bills. How can they "discover" a miracle pill for fibro if they have no clue how to treat it? And they really don't no how to treat it. They just guess and go by trial and error and get lucky. All we are are guinea pigs.
Judy
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02-15-2013, 12:49 PM #106
Unfortunately, unless you have something like a broken bone, appendicitis, or strep throat treatment is trial and error. The whole medical system is set up for a crisis and then short term treatment. You can get physical therapy for rehabbing an injury, but not for chronic conditions. It's even worse with a disease that's very different from person to person, including their reactions to medication. Most people don't realize that most of medicine is trial and error. Since fibro is not curable (yet), the best we can hope for is management. High blood pressure, diabetes, depression are also conditions that can only be managed, so we're not alone.
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02-15-2013, 01:18 PM #107
yep, I know that, but those diseases are not looked at as all in your head. I worked in the medial field for over 25 years. I've seen it first hand as a care-giver and as a patient. It is so frustrating. I just hope that a cure is found in my daughters' generation.
Judy
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02-15-2013, 10:00 PM #108
Judy I agree with you so much, I hated being a guinee pig, this should work, well that didn't work so lets try this, oh does it hurt when I press on your back the xrays showed nothing, you need to lay on your back flat, there is no reason that you can't lay on your back flat, all you want is pills you can't be getting much off the street for those, your problem is mental not physical! DID I MISS ANY! I'm sure I did. Judy they are back long everywhere for SSI, and I only got back pay for 2 years they don't count when you first apply it goes byby when you reapply which is bullhockey!
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02-16-2013, 01:45 AM #109
bubblefish: You are better off without friends like that, they are not true friends, but it hurts anyway.
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02-16-2013, 03:22 AM #110
hi I have fibromyalgia since 2000 also and cronic pain and I dont sleep all since I had a hysterectomy in oct 2000. life has been drs, drs, drs, finally got off pain management and . all the narcotics and had a spinal nerve inplant which helped alot but just had to have removed . so we shall see. If you dont mind me asking how did they diagnose your connective Tissue disorder? Ive had oh I dont know how many tests and repeats of alot but I dont know if I ever had that one. thanks ruth
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