Hi, I'm new here, not looking for medical advice, just wondering what other folks with fibromyalgia would do in my shoes.
Of course to decide, you'll need some background information, that's where this will get long. I'm 30, been sick off and on since the onset of menstruation, somewhere around age 9. As that would imply, I'm heavy. I've always been overweight.
Several years ago, I was kind of diagnosed with FMS/CFS by a rhuematologist who doesn't distinguish between the 2, or officially diagnose them, since they are "diseases of exclusion and we can't exclude everything." He treated me with Tramadol and Flexeril and I felt better so he sent be back to my regular doctor, who treated me with the same.
Then in late 2005 I got sick again, really sick. By March 2006 I was diagnosed with IBS, food and environmental allergies, kidney stone, a horseshoe kidney and a bout of acute kidney failure from the stone / kidney combination. I went on meds and a special diet for food allergies (low carb, gluten free, no processed foods) and lost a lot of weight and felt better. However, I still got frequent UTI's and kidney stones. My doctor blamed my diet and at her urging, I ate more carbs and stopped the antifungal meds I was taking for Candida allergy.
Then, my doctor moved out of state, I had a tooth go bad, had to have 2 pulled and 2 filled over a span of 3 months. Since then I've had constant nausea, diarrhea, weight gain, stomach pain and insomnia again. I tried my doctor's replacement. The first treated me for an ulcer and a UTI, did a thyroid and metabolic blood test. I don't know exactly what was tested, the office won't let me look at my chart. He took me off all meds (Tramadol, Flexeril, Claritin, Sudafed, Nystatin) He also asked me to monitor my blood sugar because they were a little bit high. He left before I could follow up, and the nurse practitioner told me my blood work was fine, I'm not diabetic, my urine culture was negative. Since I was feeling worse, she ordered a CBC and put me back on the Flexiril so I could sleep again. Before that came back, I developed pain in the lymph nodes so I made another appointment, saw another new doctor who was terrible. I overheard him in the hallway complaining about having to see me. He didn't do anything for the new pain, just gave me more Nexium and told me to try that for 10 days (same as the first guy did). When I called back and complained, the nurse practitioner ordered a CTscan of my neck and pelvis and a stool analysis, since i have so many pet animals. Those came back negative and the nurse practitioner was going to call me back with some sort of game plan about what to do next. They never did.
In fact, only after I called to inquire about how to get my records, did they send me a letter telling me to stop all meds again, start amitriptyline, and stay away from my house for 2 weeks so we can rule my pets out as a cause for my illness.
Then I got another UTI (I thought) and the lymph node pain was much worse and the old doctor's office couldn't see me for 10 days, so I went to a new doctor's office and saw a nurse practitioner. She put me on a new antibiotic, palpated enlarged lymph nodes everywhere and sent me to an oncologist and urologist. After the antibiotics I still feel awful so I went to the oncologist.
He's fairly certain I don't have lymphoma, he didn't palpate any enlarged lymph nodes, even the one that bothers me all the time. He felt strongly that something is indeed wrong, perhaps something in addition to or even instead of the fibromyalgia, but also that it should definitely be managed as part of my overall care. I showed him the letter from the old doctor's office, he would not move out of his home as he doesn't think this would be effective in eliminating anything. He thinks I should keep a journal of temperatures and try to find an infectious disease specialist. He also recommended a new doctor, since I was so unhappy with the old doctors office.
Today, I spoke with the new doctor's office. The urine culture from the most recent UTI was also negative. I went over there and filled out the paperwork for them to get my records from the old office. Now I'm really reconsidering the urologist. On one hand, I want to talk about my kidney's strange formation and the multiple ideas I've heard on it. I also want to know why I keep having UTI symptoms. My co-worker who also has fibromyalgia just went through a ton of testing for frequent UTI and found nothing at all. I definitely don't want to do that. I can't really afford that. I've already spent almost 1/3 of my income for 2010 on doctor's visits only to continue to feel worse.
It's going to take a month to get the old records to the new doctor, they don't call when your records arrive, just put them in your file. I'm torn between just waiting until those get there then starting over with the new office, and going back to the old office, because at least they know what we've done, and requesting some specific tests, like Vitamin D and magnesium. Or I could just take those and see what happens and forget about doctors overall... they're not really doing anything but taking my money at this point. Today, the oncologist told me, in a nice way, that if you're feeling unwell and gaining weight, most doctors aren't really going to do much anyway, as digestive problems cause weight loss when they're bad and weight gain causes all kinds of feelings of unwellness.
Since becoming ill again, I've gained almost 60 pounds :(