sick of pain and the constant struggle.

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angelxe1
New Member


Date Joined May 2009
Total Posts : 9
   Posted 6/24/2009 3:31 PM (GMT -6)   
so sick of being in pain all the time. i keep going to the dr because i have severe hip and shoulder pain. the hip pain started after i fell the down the stairs. it hurts all the way down to my food and up to just above my lower back. on the same side my shoulder and neck have started to hurt over the years. it has become harder and harder to grab things as the pain has now gone down to to my hand and upper shoulder blade. now i can barely move at all. my upper back keeps going numb and so does my thigh. at first they kept saying the thing with my hip was from falling and i was diagnosed with hip bursitis. later i was told that it was because of my weight. which is so infuriating for two reasons. for one i am fatter on one side and therefore shouldn't both sides hurt? and secondly because it was the drs themselves who insisted i take prednisone over the years for my UC which has never been under control. every time i take prednisone i gain so much weight. and since my UC isnt under control i couldn't eat fruits and veggies without aggravating my constant flare ups. despite all the obstacles and the set backs in the last year i managed to go down a pound a week. i have changed my diet drasticly and do walking and stretching despite the pain. even in tears. and finally was down three dress sizes when my flare up got really bad and i had to go back on prednisone. so now i am back up ten pounds and my shoulder is getting worse everyday. i feel so frustrated. the dr just took me off flexeril because it's addicting even though i only take half some nights instead of a whole one as i was prescribed. now i am back to not sleeping. the pain is keeping me from being able to function even more than before.
I don't know what to do. I go to the dr all the time for this pain and they never have a straight answer. they just look at me and blame my weight before i even speak. they are constantly treating me like im addicted to pain meds even though im the one who refuses to take them. i keep telling them i don't want pain meds they are only masking the problem i want to find out what is wrong so i can research it and i can know what i am dealing with.
i am tired of the burning and the joint pain and the constant stomach aches and the fevers and i just want to scream. (which i did when i was taking a shower it hurt so much) and even now it hurts so bad to type but i had to just get this whole thing off my chest.
28 yrs old
Diagnosed in 97 with Ulcerative Colitis
Diagnosed in 2005 with Fibromyalgia

Prednisone up to 15mg from 10mg
Sulfasalazine 8 a day (500mg each)
and a bunch of other stuff (so many pills ahhhh)
Starting 6-mp


mother of two cats


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 6/24/2009 4:01 PM (GMT -6)   
What kind of doctor are you seeing for the pain and fibromyalgia? Have you gotten a second opinion?
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 6/24/2009 7:02 PM (GMT -6)   
You tried a chiropractor?
Proctitis DX 1999, Pancolitis DX 2008
Golimumab study (100mg every 4 weeks)
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3 5000IU+Ca/1000mg DHA


blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 6/24/2009 8:05 PM (GMT -6)   
I hate to sound like a broken record, but have you tried the Specific Carbohydrate Diet. I had/have fibromyalgia as well that seem to disappear with the diet. I emphatize with you because I have lossed a lot of living with this disease. NO MORE!!
Pharmacist as of 6/12/2009.
Diagnosed 8/99. Suffered for almost 10 years. I am currently on the Specific Carbohydrate Diet and am nearing remission. I feel fantastic! I have lossed so many years to this disease.

MED-FREE!!!

Doc wanted to put me on 6-mp or Remicade, but I refused to take the medications! Currently on the Specific Carbohydrate Diet.  I'm in remission and life is like it always should have been.


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/25/2009 7:37 AM (GMT -6)   

I had a lot of joint pain from uc, long before the intestinal symptoms showed up.  Trying to get my doctor on the same page about an inflammed knee too painful to walk on was an exercise in frustration and futility, so I totally understand where you're coming from. 

For a lot of reasons, doctors don't help manage pain very well, and you may need to find a specialist who deals only in pain management. 

I would suggest, however, that you take your pain medication as prescribed.  From a doctor's perspective, you complain of pain and are given a script for pain relief which you tell him you do not take or do not take completely.  Dismissing your concerns isn't right, but not taking the medication as prescribed may have the doctor questioning your degree of pain or questioning whether you are drug seeking.

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