I had my very first rheumy appointment about two weeks ago. I haven't posted partly because I'm holding my breath, waiting to see what happens before my next appointment in June. However, after two weeks I feel the need to share.
First, my appointment. It went very well! The doc is a little quirky, and had two students in with him that he spent a large amount of time talking to and prompting to draw conclusions or come up with ideas. That is not to say he neglected me by any means. He seemed very thorough. He told his students that he does not diagnose Fibro or Lupus based on the 'required' number of symptoms, insisting that those were for research only. (AKA, he'll diagnose with fewer symptoms if everything else falls in line with that diagnosis.) He asked me many many questions (most of which I answered no to, and had expected to be asked), he tested the Fibro points, and checked my joint flexibility.
Some of the surprising results of this examination. ONE, I've had trouble with my eyes since I was a child, and he said this may well point to RA being a good possibility. TWO, apparently my joints hyper-extend. When asked to hold out my arms, palms up, all three of them exclaimed in surprise and started playing with how far and how much I could bend/twist my arms/wrists. I was taken aback and stared as they chattered about it. I wasn't aware I was so different, rofl. (Apparently this has to do with something auto-immune related, though exactly what I never quite understood.) THREE, doc discovered I have issues with my SI joints, which I did not know were joints in the first place. When he tested my hip flexibility, and I winced a little, I think he was tipped off. In the process of things, he asked me if it hurt here, which it certainly did. That was a spot low on my back to the left. Then he touched the corresponding spot on the right, and that really hurt. I had been aware that I had painful spots there, but wasn't aware that it was significant in any way.
So, he said I have some "lupusy" things, possible indications of Fibro, and likelihood of some sort of arthritis, potentially RA. I asked him to please tell me that I am NOT okay, that something is indeed wrong, and that he would work to find out what. He warmly told me that no, I was not crazy, yes, something was definitely wrong, and that he couldn't promise he'd find out what exactly, but that he'd do his best to track it down. He then turned to his students and told them that some docs would prefer to attribute my pain to my being a "hysterical female" (said in a lowered voice and with a roll of the eyes). He also told me that he didn't believe pain was quantifiable, that if I am in pain and tell him so, that's good enough for him. (No trying to rate it on a scale, which I am relieved about because the pain I've felt is not measurable on such a flat scale as 1 to 10. It's a 3 dimensional sort of thing, lol.)
In the end, he ordered x-rays of my hands and SI joints, a bunch of blood tests, and gave me a Rx for in increased dose of ibuprofen. One pill is equivalent to four Advil, and I am to take one pill three times a day, along with Prilosec, and see him in six weeks for test results and a check on how the meds are doing. He said not to worry if it didn't work, that he had many options for relieving the pain, and that we'd try them if this dose wasn't enough.
Now, two weeks later, I can safely say that the upped dose of ibuprofen is NOT nearly enough. I did want to try just an increase in the ibuprofen, so I am glad he did it this way, but the pills are twice the amount I was taking, but it has not at all had twice the effectiveness, which is very disappointing. Storms rolled through, and my hips still made things terribly difficult. Even on quiet weather days, I still hum or outright hurt.
But on top of that, I am experiencing something new, and I was hoping some of you might be able to tell me if you know what in the world I'm talking about. I call them "pain attacks". I have had two this week, and have never had them like this before.
The first struck just before I was supposed to take another of my ibuprofen. About a half hour before taking it, I started to hurt in my hands and feet enough that I got off the puter and curled up to read. (This usually helps it to calm down,or at least stops provoking it to be worse.) Fifteen minutes later I couldn't even concentrate on reading. It began to hurt all over, and hurt bad enough to make me cry. Thus far, I haven't cried due to the pain. I noticed it was coming in waves, and each wave was worse than the one before.
By the time I could take my next pill, I had to call hubby to go downstairs and get it for me, because there was no way I was moving that far. Being in so much pain, the ibuprofen took a long, long time to get a grip on it. An hour and a half after taking the pill, I finally moved. Half hour after that I felt eased enough to get up and move around.
Besides the intensity of the pain, something else was new too. First, it wasn't just my joints. EVERYTHING seemed to hurt, so that I held carefully still. Secondly, when hubby was trying to be soothing, I discovered that my skin was extremely sensitive. Thirdly, as the attack faded, I realized my joints were all very very tender. It was exhausting and terrifying. If the ibuprofen hadn't taken affect, or if I had had to wait longer before taking it, I would have considered the ER, that's how badly I hurt. It made my heart race and made my stomach churn with acid.
The second pain attack was less intense and painful, but it happened well after I'd taken one of my ibuprofen, so I'd like to think that's what kept it from being so horrible. It still hurt though, and I still was very sensitive to touch. (Poor son, he was trying to make me smile by just barely touching the seam of my shirt... and about five seconds after he placed his finger there, I had to pull away because it hurt. He was dismayed and aplogized all over himself.)
Anyone have any idea why these pain attacks are so different from my usual joint pain?
Sorry to be soooo long, but I obviously waited too long before talking to y'all, and ended up with a book. I have a lot to tell my doc at my appointment in a month, but thought I'd let y'all know what was going on and seek advice.