Lupus joint pain - my breaking point

I've alluded to the joint pain that's been hanging around for several weeks now...and I can finally say I think it's on its way out. Thank goodness! It was a little touch and go there for awhile. Even upping my prednisone per my doctor's instructions wasn't working. But it wasn't until I combined the increased medication with a decrease in errands, an increase in rest, and more routine exercise that I noticed a difference. Ah, the value of the three-prong approach. I'm glad I've had 12 1/2 years to develop the strategy!

I had a scheduled doctor's appointment last week. So when the joint pain kept hanging around morning after morning at the end of August, I just kept telling myself that I just had to make it to the appointment. But about a week and a half in (still almost two weeks until my appointment), I hit my breaking point.  Not my threshold for pain, but rather, my threshold for how disrupted my life can become because of the pain. Over the years, I've found it easiest to gauge my joint pain by my ability to function (or not) on a daily basis - if I can't do "x", it's not so bad, but when I can't do "y", I know it's time to reassess.

So before I tell you the accommodations I made (I know you'll be on pins and needles until Friday's post), here are just three of the simple benchmarks I hit, telling me my joint pain was getting in the way, and I needed to make some changes:

1) I couldn't open the plastic of a new cereal box. Ugh! My weak, arthritic hands just kept slipping off the plastic. I couldn't get a grip, and it was painful to try and do so. And when I tried to open a second unopened box (telling myself General Mills simply sealed their cereals too tight), I couldn't open that one either. (Turns out Post does the same thing!) Of course, in this case, no food company is at fault. I just had to admit that my joint pain was causing too much trouble.

2) I couldn't do the girls' hair - which was really a bummer. Deirdre came three mornings in a row to ask me to put her hair in a ponytail, but trying to open the elastic band and grab her hair at the same time just wasn't possible. Spreading my fingers in directions they didn't want go caused excruciating pain,  and I had to pass her off to her dad each time. Watching her walk away dejected, and feeling rather inadequate, I knew I couldn't let this level of pain continue.

3) I couldn't lift the covers over my shoulders while sleeping. How annoying! Anyone who's experienced joint pain at night knows the frustration this causes. You're in bed, trying to sleep because you know that's the best thing for your disease, and you innocently try and pull the covers up over you and experience horrific pain that leaves you wincing for several minutes. Double ugh! I absolutely hate when that happens...and it was happening every I knew I needed to take my disease activity seriously.

Now - could I do all of these things after a few hours once my increased medications kicked in? Most of the time. Was the rest of my day unaffected after that point? Pretty much. Have there been times in the past where these inabilities were just part of the lupus deal? Unfortunately yes. But I'm not willing to settle for a couple of hours of pain every single day, when I know how good it's possible to feel. I know lupus can flare, and I realize there may be a point where some degree of pain just has to become part of my day. But I'm certainly not going to accept that new "norm" without exploring every option for keeping the pain at bay, be it lifestyle changes, medication adjustments, or both?

So stay tuned for Friday's post, where I talk about the three "lifestyle limitations" I had to put into place in order to try and combat my joint pain. I knew I wasn't doing everything I could to rest my body, so I had to enforce a few rules to ensure that I was. And oh, how they're working!


jenji said…
I have a lot of joint pain with my disease. But it's usually my hands, fingers, hips, knees and heels. Then, this summer all of a sudden I couldn't pull the covers up as you said. The act of getting out of bed, that is, pulling the covers up and off of me was excruciating for about 6-7 weeks. Also, brushing my teeth hurt my shoulder, as did turning the wheel on my car to make a left hand turn. Weird. I'd never had that kind of pain in my shoulder before. I was trying to figure out where I had injured it. I'm glad to know I'm not the only one with pain in that particular place bc it didn't seem all that common in lupus from what I've read.

It always amazes me how joint pain jumps around, comes an goes with no rhyme or reason sometimes.

Great blog.

Sara Gorman said…
Oh, those exact examples you cited appear in my book - so know that you are very much NOT alone! Those touch points are my sensitive spots, too. I almost always feel it in my hands, fingers, and wrists first, and I'm always amazed at how much pain two little hands can cause. Ugh! I've found submerging them in hot water, up to my elbows, helps. At least for awhile. :) Thanks so much for sharing - we will continue to be "amazed" by our joint pain together.
shikha said…
I read your blog on joint pain. Its really good. you have nice contecnt and very good information. Its very helpful to all.
Victoria Grantham said…
I love your blog! After several years of various illnesses (joint pain and deformity, type 2 diabetes, severe fatigue, never ending pneumonia, eye sight changes, anemia, etc...) my family physician finally did an anti double strand DNA test for RA and it came back positive....for SLE. He says I have SLE with "rheumatoid factors". Ironically, the diagnosis came this last May during Lupus awareness month. I'd noticed a slight malar rash off and on for years but never seriously considered Lupus, as it's supposed to be a rare disorder. Apparently, I've had the signs/symptoms for well over a decade but the ANA came back negative so the only diagnosis I got (back in 1991) was Fibromyalgia. Your difficulty opening the cereal bags has been my problem as well, and not being able to open my bottles of water is beyond frustrating. The helpless feeling one gets at not being able to open a bottle, bag, or jar is scary and depressing but, with the help of your blog and other information I'm finding on this disease, I hope to find ways to feel more empowered and less helpless. My list of priorities has changed drastically. A spotless house is unreasonable now, but asking for more from my family has become a little easier. I'm no longer given to "perfectionist" tendencies, but mentally it's hard to rest when I see chaos all around me. Learning to pace myself has been the most difficult struggle and it really hit home when this current flare hit me. I have a guest bedroom that is 3/4 painted and waiting to be finished...when the next good day appears.

Thank you for all you do and share to help the rest of us find our way out of this maze that is Lupus.

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