Thursday, September 2, 2010

Not Doing Well

I don't know why, but I have been wondering if I might have Lupus instead of "possible" psoriatic arthritis or undifferentiated spondylarthopy. I know that It was ruled out from previous blood tests many months ago, but from what I've read it is diagnosed by having a certain number of symptoms. I don't have the list, but I think I'm pretty close.

I've never gotten answers about the strange rashes that I keep having. I'm getting little circular sores that are raised and scaly. I'm a picker and these drive me crazy because I just want to get the flaky, peeling skin off. But--regardless--they are something that is new to me. I had never seen little lesions like this before I started getting sick.

I, also, get small patches (typically on my arms) that itch intensely and are hot to the touch. They usually are gone within about 15 minutes. They remind me of hives. I see no pattern in these. I get anywhere from 1 to 10 of them a week.

I'm not sure if it's the mtx or not, but I have to pee way more often than normal. Sometimes I go 5 times in an hour! It's not just a little each time either It's a normal amount. It's very annoying and I find myself avoiding drinking water so I don't spend all day in the restroom.

My tummy is a little upset lately as well. And the's no better yet. My knees are the worst offenders these days. I take two pain pills a day so I can function.

Stress level here is high as well. (sigh) That can't be helping me.

I sure hope all of you are doing better than I am this week! Hope you have fun plans for the holiday weekend.

- Posted using BlogPress from my iPhone

Location:Crestwick Dr,Murphy,United States


  1. I'm sorry your feeling awful. Any pain is awaful but to have all over pain it becomes almost daunting to handle. Have they checked you for any typical skin conditions that your illness might make worse. could you possibly have rosacea. I too had elevated bumps on my arms, neck, back and head. It hurt like hell to touch my scalp or comb my hair. I found out my illness has kicked me into the disorder and it can hurt the area it affects. Just thinking outloud for you. HUGS tammy

  2. Part 2-
    I asked my rheumatologist if this is it, this is how it's going to be. He told me that the goal is to get into remission and it will take time and possibly med changes etc. but that is the "goal", I say hmmmpf!

    Hey, don't feel bad about the pain meds. I take 1 to 2 a day a lot of Mon-Fri. I work in software, my fingers are excruciatinly painful some days and if I didn't have pain meds, I wouldn't have a job. Remember. they were invented for people like us with chronic painful diseases and conditions and not the junkies that are so prominent these days that it makes some people feel awkward taking them for medical reasons.

    Just be very careful and aware, and keep yourself in check because they can become addictive. I know that I can take 3 a day per the script, but I don't because when I did...I didn't get anymore pain relief, I just got icky feeling. I feel crappy enough and don't need to add to it.

    Accept that the pain meds can get you to a tolerable level but do not expect nor reach for complete relief. They will not take your pain away because that is an unreasonable expectation, they DON'T. Nothing can, but yes they can help.

    These are very frustrating diseases. Denial is a big thing for me too. I have RA. You have psoriatic arthritis, it's RA with skin manifestations as well as the other issues. It is an auto-immune disease as is Lupus and RA and the rest of the bunch. They have many crossover symptoms and alot of the same pains, so I can defintely relate to your wondering if you don't have "something else". I do it all the time! Also, as your disease progresses your diagnosis may indeed change due to changes in your BW. As long as you're aware of that you won't feel so blindsided.

    I so wish there was something that I could do for you, my heart truly goes out to you. The best I can do is send you :STRENGTH: and :HOPE: I do honestly know what you are going through and I'm sorry :(

    Please, keep blogging! Let us know how you are doing with this journey. All of us that follow you do so because we care and support you and wish nothing but the best for you.


  3. Fast forward 2 years, last Nov. pain that I ignored it as long as I could (about a month) and had gotten so bad I went to the dr,. The knucklehead said I had something (don't remember what it was but later found out it was something that wasn't diagnosable from an x-ray) and sent me on my way with a week worth of pain meds.
    By January, yes I am the queen of denial (they made me that way lol) and was pretty much "over" the treatment by my regular dr. (oh, are you depressed because you're in pain? answer: uh, yes...I've had chronic pain for 3 months now, you haven't tried to figure out why and have been patting me on the hand like a child, wouldn't you be?) "Thanks for the cymbalta, this is going to fix my body eh?"
    In March, my ribs hurt so bad and I was short of breath. To the ER I went. I was admitted and a bunch of tests were run. After 3 days, the diagnosis was Lupus, with a referral to a Rheumatologist. I said wtf? We talked yesterday about my having RA dignosed 3 years ago and you're saying I have Lupus? The dr. looked at me stupidly and said that all of my stuff was being caused by "inflammation" and I needed to see a rheumy. I had infl. of the lungs, ribs, joints, eyes etc and I was a mess.
    Back to my old rheumy whom I hadn't seen in a LONG time. Who knew that all of this was caused by RA? Why didn't either the ortho or regular dr. ever connect this? Especially since all of this stuff was clearly visible: redness, swelling, bleeding, rashes, low ox levels, screwed up BW I could go on.
    First, right on to MTX. I had to take it for 4 mos before my insurance would pay for an add-on if it didn't work on its own. The pills made me sick, switched to injection. By the way, you don't absorb as much into your system with the pills and they are much worse on the GI tract than the injections, I'm just sayin'.
    I was doing marginally better, but nowhere near good enough. It's weird though how "marginally better" meant so much to me at the time. I could actually measure feeling good in minutes, like 5 or 10 at a time. In hindsight, it ticks me off that I even noticed 5 or 10 mins of being comfortable. It shouldn't be that way.
    Today, I'm on my 2nd month of Enbrel, added to the MTX. Again, I am doing "marginally better" gosh I love that day or two of being comfortable (insert sarcastic tone here), but I truly am grateful I have that much back.
    The bottom line is that this is a frustrating, painful disease. It is a fight. The meds suck, but can help. You may have to try different combinations if one doesn't work. They can work for a period of time and then stop, then get changed again. This is a fact of life as I have had to come to accept it. I don't always like it, but this is the best I can do.
    On to part 2