My GP isn't really treating me for pain. He gave me 300mg of neurontin after I begged twice. My neurologist has since raised that up to 2400mg. He had me on zanaflex but I had a nasty reaction to that. I can't take Ibuprofen because it hurts my stomach, I have inflammatory disease in my stomach & esophagus. Toradol doesn't hurt it but my GP isn't going to give me that medication. I can only take it so often since it causes kidney failure. Only have one injection left and I don't have the money to get more. I went through a doctor consult online and got this medication. My GP wouldn't let me have it even though he'd give me shots occassionally. He wasn't very happy that I did that but I guess he understood why. My pain got so bad earlier in the year, I was overdosing on antidepressants and sleeping pills to knock myself unconscious to stop it. And yes, I went to the ER immediately following the first time I did this, and I went to my GP several times, with no help but being given narcotics that made me vomit. I gave those back to him, and he didn't give me anything, as most medications never worked anyways, and sent me home in that shape. I told him the pain was so bad, I wanted to put a gun to my head. So I don't know where the understanding was.
I was diagnosed with UCTD 11 years ago, and was told he thought that may be mild Lupus. My GP took that diagnosis from me and said it was just fibromyalgia. So that was a long time of laying around in bed sick and not having the medications I needed to feel better. My neurologist feels like I have this, and my GP sent me to a rheumatologist in April for evaluation of MCTD with myalgias. I did not like her one bit. She said my fatigue and pain were too vague to mean anything, said I didn't fit the criteria for anything, said I didn't have any trigger points for fibromyalgia but said fibromyalgia was mostly due to depression anyways, she went on to say if she was to guess, that would be what she thought it was, she talked like chronic fatigue syndrome was no different from fibromyalgia, and blew it off like it was a nothing diagnosis, she said my blood work was meaningless (the ANA and my antibodies), said the same thing about my WBC's being low because I only had a few tests that showed this, though now I have more. She blew off the fact that I've had pleurisy, like it never even occured. Told me that you have to have certain things to have a connective tissue disease, like raynaud's, high inflammatory markers, fluid on your heart and lungs (she failed to mention inflammation), occassional low WBC's & RBC's, joint swelling, and rashes. If you don't have Lupus, you probably don't get rashes like the malar rash and whatever else. I told her my first rheumatologist diagnosed mild Lupus and she didn't seem to believe me. Said if he was diagnosing that just because of my positive ANA, and my fatigue and pain, that he was wrong in doing so. She also told me that there was no medication that would probably help me, and told me to just come back as needed.
I picked up my medical records from both of them. He diagnosed it because of how well plaquenil helped my pain. Plus I had a positive ANA. Her diagnosis in my records was chronic fatigue syndrome, she stated I only had a few signs of connective tissue disease (which I have alot more than a few), and said that was unlikely, said fibromyalgia was also unlikely because I didn't have any trigger points. She went on to talk about how I said my rheumatologist said I had mild Lupus but more or less how she didn't believe me. My antibodies fluncuate when I am in a flare, or if I am on treatment and feeling better. Did she acknowledge that, no of course not. My neurologist wanted to send me to the Lupus clinic out of state but I had no way to go. He said she was a meaningless doctor, that he had plently of Lupus patients that had normal inflammatory markers.
I got angry. I was determined that regardless of what this rheumatologist did, that she wasn't going to stop me from feeling better. 14 years of this crap, I was through with the shit. My GP has me on plaquenil, and as wonderful as that medication is, it's not enough. So I ordered Imuran online and started taking it too. That is why I am now able to stay out of bed, and half function normally. I also exposed myself to sunlight, and sure enough developed a sun rash, so I took a picture of it for proof. I am going back to that rheumatologist in a couple of weeks to see if I can change her mind in treating me. This isn't some kind of joke. I will not survive this disease if they don't step up and do something. I might just have to kick her ass if she doesn't. (heheehe).. This ESR crap, that has to be high to have a connective tissue disease, is bullshit. I had a kidney infection and it came back at 5mm/hr, I had a severe sunburn and previously had that sun rash, and it came back at 4mm/hr. For some reason my ESR doesn't raise. And I'll be damned if I let that stop me from getting a diagnosis to something I already know I have.