A post on being a sickipants
I posted something very similar to this on rheumatoid, but since it's something I haven't really shared here, I figured I'd edit a bit and repost to my own journal.
Unless something wonky (there's my super technical terminology) comes back in my second lupus test (I had an abnormal Anti-SSB antibody the first time), I was diagnosed with Rheumatoid Arthritis and possibly Sjogren's syndrome two weeks ago.
As best as I can put together, here is the progression of my RA.
I developed Reynaud's phenomenon (my fingers turn blue in the cold) about 2 winters ago, and although painfully annoying, I thought it was actually a side effect from moving home to Chicago from Yuma.
For the last year or so, I was having what I termed random pain, like someone punched me in the arm when I hadn't done anything or wrists that wouldn't open jars or bottles, or twinges in my knees climbing stairs. Sometimes these were mild, other times they were debilitating, but they never lasted more than a couple days, and I tried advil, aleve, tylenol, nothing really worked on them. I was beginning to think they were all in my head, I figured that since I had pain for no reason, there was nothing for the pain relievers to work on.
About 6 weeks ago the wrist pain was so bad (in both wrists) that I had to go get an Ace wrist brace so I would stop moving them. The left wrist swelled up making it impossible to move. This was the first time there was any physical proof that there was something wrong with me, so I made a doctor's appointment right away, because finally I had some proof that is wasn't psychosomatic, and I wanted to make sure my wrist was still swollen when I got in (no worries there, it has gone down some, but is still swollen now)
The doctor thought it was carpal tunnel from my description, but after an examination, decided that was definitely not it. When I told her that I had Hashimoto's (more on this in a second), she agreed that it might be an autoimmune disorder, and ordered a bunch of blood tests. I don't remember what my rheumatoid factor was (I need to start writing the numbers they tell me down), but my GP said it was "high, but not that high" and I was told it could be RA, it could be Sjogren's (which is basically an autoimmune disease where your body attacks your moisture producing glands... which as thirsty as I've been this weekend, I'm starting to wonder). It might be both, or it might be nothing at all.
Except that it's definitely something since other parts of my body have started doing it too... The best way to describe RA is that I feel like I'm about 70. Sometimes my fingers and the joints in my hand swell up so that when I'm trying to grip things, my skin looks like it's going to pop, sometimes they don't swell but typing or holding a pen or a fork feels like shit. Sometimes when I'm sitting down I need to hold something to lever myself up to stand. Or take one step at a time up the stairs like I am elderly. And sitting indian-style or with 1 foot tucked under me (which is how I ALWAYS sit) either hurts to do, or more likely, hurts to straighten out from. I mean most 70 year olds feel joint pain like this and still have an okay retirement life, but I thought I had like 40 years before I'd feel like this.
Anyway, the GP referred me to a rheumatologist, who was relatively certain from my test results that it is in fact RA, although Sjogren's is a tag-along autoimmune disorder, so she said that if I don't have that right now, it's likely to develop. I haven't been prescribed anything yet, because she wanted to wait for the results of the second lupus test, even though her hypothesis is that the antibody that was high is because I also have Hashimoto's thyroiditis. She also wanted me to do some research on the medications on my own so we could talk about them and decide what's right for me.
She also told me to call her if I have a flare before my next appointment (Dec 4), and she would get me some steroids. Which is great, except that i have no idea what a flare is. Like how bad does it need to be? My dad is freaking out about me using steroids (he had bad side effects from a topical steroid he used on his psoriasis), and he's beginning to make me feel like the pain and swelling isn't so bad.... even though it really is bad. And except for my left wrist, the swelling/inflammation still seems to come and go. Every time that I think I'm miserable enough to call her, the pain has turned to just a little sore and I feel okay for a day (I'd never really go so far as good), then it hurts somewhere else.
I have to go for x-rays, and more blood tests, and I'm honestly beginning to feel a little like a lab rat. Right now besides anything pain related, I have Hashimoto's (autoimmune hypothyroidism), PCOS, and my endocrinologist is convinced I'm insulin resistant (even though I had a perfect GTT like 6 months ago), because my cholesterol test came back with high triglycerides (granted 404 is really high, but triglycerides can be affected by a ton of things, like not fasting long enough, or having alcohol much earlier than the 12 hour fast....) I'm redoing that bloodwork because I think it's a glitch, but I am getting tired of tests and prescriptions and diseases. I need to figure out how to deal with this in a way that will let me stop feeling like a list of diagnoses
Unless something wonky (there's my super technical terminology) comes back in my second lupus test (I had an abnormal Anti-SSB antibody the first time), I was diagnosed with Rheumatoid Arthritis and possibly Sjogren's syndrome two weeks ago.
As best as I can put together, here is the progression of my RA.
I developed Reynaud's phenomenon (my fingers turn blue in the cold) about 2 winters ago, and although painfully annoying, I thought it was actually a side effect from moving home to Chicago from Yuma.
For the last year or so, I was having what I termed random pain, like someone punched me in the arm when I hadn't done anything or wrists that wouldn't open jars or bottles, or twinges in my knees climbing stairs. Sometimes these were mild, other times they were debilitating, but they never lasted more than a couple days, and I tried advil, aleve, tylenol, nothing really worked on them. I was beginning to think they were all in my head, I figured that since I had pain for no reason, there was nothing for the pain relievers to work on.
About 6 weeks ago the wrist pain was so bad (in both wrists) that I had to go get an Ace wrist brace so I would stop moving them. The left wrist swelled up making it impossible to move. This was the first time there was any physical proof that there was something wrong with me, so I made a doctor's appointment right away, because finally I had some proof that is wasn't psychosomatic, and I wanted to make sure my wrist was still swollen when I got in (no worries there, it has gone down some, but is still swollen now)
The doctor thought it was carpal tunnel from my description, but after an examination, decided that was definitely not it. When I told her that I had Hashimoto's (more on this in a second), she agreed that it might be an autoimmune disorder, and ordered a bunch of blood tests. I don't remember what my rheumatoid factor was (I need to start writing the numbers they tell me down), but my GP said it was "high, but not that high" and I was told it could be RA, it could be Sjogren's (which is basically an autoimmune disease where your body attacks your moisture producing glands... which as thirsty as I've been this weekend, I'm starting to wonder). It might be both, or it might be nothing at all.
Except that it's definitely something since other parts of my body have started doing it too... The best way to describe RA is that I feel like I'm about 70. Sometimes my fingers and the joints in my hand swell up so that when I'm trying to grip things, my skin looks like it's going to pop, sometimes they don't swell but typing or holding a pen or a fork feels like shit. Sometimes when I'm sitting down I need to hold something to lever myself up to stand. Or take one step at a time up the stairs like I am elderly. And sitting indian-style or with 1 foot tucked under me (which is how I ALWAYS sit) either hurts to do, or more likely, hurts to straighten out from. I mean most 70 year olds feel joint pain like this and still have an okay retirement life, but I thought I had like 40 years before I'd feel like this.
Anyway, the GP referred me to a rheumatologist, who was relatively certain from my test results that it is in fact RA, although Sjogren's is a tag-along autoimmune disorder, so she said that if I don't have that right now, it's likely to develop. I haven't been prescribed anything yet, because she wanted to wait for the results of the second lupus test, even though her hypothesis is that the antibody that was high is because I also have Hashimoto's thyroiditis. She also wanted me to do some research on the medications on my own so we could talk about them and decide what's right for me.
She also told me to call her if I have a flare before my next appointment (Dec 4), and she would get me some steroids. Which is great, except that i have no idea what a flare is. Like how bad does it need to be? My dad is freaking out about me using steroids (he had bad side effects from a topical steroid he used on his psoriasis), and he's beginning to make me feel like the pain and swelling isn't so bad.... even though it really is bad. And except for my left wrist, the swelling/inflammation still seems to come and go. Every time that I think I'm miserable enough to call her, the pain has turned to just a little sore and I feel okay for a day (I'd never really go so far as good), then it hurts somewhere else.
I have to go for x-rays, and more blood tests, and I'm honestly beginning to feel a little like a lab rat. Right now besides anything pain related, I have Hashimoto's (autoimmune hypothyroidism), PCOS, and my endocrinologist is convinced I'm insulin resistant (even though I had a perfect GTT like 6 months ago), because my cholesterol test came back with high triglycerides (granted 404 is really high, but triglycerides can be affected by a ton of things, like not fasting long enough, or having alcohol much earlier than the 12 hour fast....) I'm redoing that bloodwork because I think it's a glitch, but I am getting tired of tests and prescriptions and diseases. I need to figure out how to deal with this in a way that will let me stop feeling like a list of diagnoses