Lupus Arthritis

I asked my 14-year-old to give me one of my Lupus symptoms that affects him most, other than my fatigue since I wrote about that already. He said, "the arthritis". Asking him helps me because it shows what he knows about Lupus and it lets me know what bothers him the most about my disease so far. These boys see me in pain on a regular basis and two of the most terrifying events for them so far were when I was in the wheelchair in 2012, and when I lost the use of my hands last year.

Side note - I know how I feel because I live with Lupus, but I tend to get so wrapped up in my own issues; I forget the impact Lupus has on the rest of my family. So, it’s good to check in with how they’re doing here and there.

The pain in my hands started gradually. It started February of last year and I thought it had something to do with my Reynaud’s. At first it sucked, but was manageable and only lasted a couple hours. Over the next few months, the pain in my hands gradually got worse, lasted longer, and started to move to my elbows and shoulders. Eventually, muscle weakness accompanied the pain and I had to adjust how I did things such as changing the cups I used because I had no grip so I bought one with a re-usable straw and large handle my hand could fit in so I could drink on my own since I couldn’t lift much of anything. At the time, I had been diagnosed with Lupus by my family doctor, who was amazing, but not by a Rheumatologist yet so getting help was difficult. One fateful August Sunday last year, I woke up and the pain was excruciating. My hands were red, swollen, and well; I couldn’t brush my teeth let alone change my clothes or feed myself.

I, being as stubborn as I am, had my husband start driving me to the gym because my dumb ass was going to attempt sparring (boxing and kickboxing). Now, I couldn’t dress myself, but I was gonna go hit people, and get hit by people because, I’m brilliant. Hahaha! My husband loves me, but he knows better than to argue with me about these things because I’m obstinate and have issues listening when it comes to doing what I want to do. Needless to say, I’m not always the brightest when the stubborn kicks in and I have issues with this thing called, “limitations”. (That’s made Lupus fun). On the way to “sparring”, I break down in tears and say, “let’s go to the E.R”. Those are BIG words for me because I HATE going to the E.R. I can’t stand going in because I’m so tired of doctors telling me that I may not have Lupus because healthy people can have a normal ANA. This was not the day for that sort of shenanigans and I wasn’t about to put up with it again. Not today

I arrived at the E.R. crying, with red, Mickey Mouse hands, walking like I was auditioning for “The Walking Dead”. I walked in stiff armed, elbows at my sides with my limp Mickey Mouse hands dangling in the front of my body, T-rex style. My arms were saturated in Lidocaine gel (so much better than patches) so they looked like they were slathered in Vaseline. So there I was, a lubed up Mickey Mouse handed T-rex zombie waddling into the E.R. crying because of the pain and feeling shafted that I couldn’t spar.

Let me tell you, I am a sarcastic person who does not like to show when I’m in pain unless I absolutely have no choice and I have a high pain tolerance. For example, I smiled and joked throughout most of each of my labors. I crack jokes with my head in the toilet while throwing up (thank you Lupus), and I giggle when I get hit in the face (it just happens). So, if I’m not sarcastic and joking, shit has hitith the fan. Well, I wasn’t in the mood for joking and my husband knows how I feel about the E.R. so he entered behind me with our youngest son, face pale, looking like a deer in the headlights. Of course, he feared for the safety of the hospital staff had I been given another crap doctor so his blood pressure skyrocketed as he braced himself for possibly having to calm me down without actually saying “Honey, calm down”, because we all know how well that goes over. Imagine my husband’s relief when the doctor was kind and wanted to help. I was relieved to an extent but at the same time I was already amped and ready to go head to head with yet another doctor. I honestly was kind of hoping for a verbal confrontation since hitting is only allowed at the gym, post liability waiver. Just wasn’t my day.

I gimped into the hospital room, sat on the gurney, reached out and showed the doctor my shiny, red, Mickey Mouse hands and explained the situation. He admitted he didn’t really know much about Lupus and sent me to another doctor in the E.R. who could help me better. It turns out, the first doctor works at my clinic so I get to see him every once in a while, good guy. Anyway, I go to another agreeable doctor, they get me pain meds, prednisone, and I’m joyfully on my way watching the walls sway back and forth as we walk out of the hospital. I ended up being on Prednisone from August to the end of October and it’s been off and on since then. I’ll bet that’s a shocker for you fellow Lupies out there. Lol! FYI, my pants don’t fit anymore so thank you Prednisone, but I have my hands back; give and take I guess.

Honestly, if I had to choose between hands or legs, I choose hands. There is nothing more degrading to me than having my husband feed and dress me. I could push myself around in the wheelchair. I could crochet, paint, sew, cook (though I burned my forearms a lot on the burners because I was fun sized from the wheelchair and had to reach up to cook) but I could otherwise keep myself busy and be somewhat constructive. Without hands, all I could do was sit there watching tv feeling completely helpless. It was awful but it’s part of what I have. More than likely, it will happen again, but for now I have my own stash of Prednisone and taper instructions so hopefully I won’t ever have to be handless for long.

Lupus arthritis is interesting in that it doesn’t always cause damage to the joints. It causes inflammation in the synovial fluid between the joints resulting in pain; sometimes extreme pain. The inflammation from the joints aggravates the muscles around them causing muscle spasms and yep, more pain. It’s a domino effect of awful and the worse the pain gets, the worse my fevers and fatigue get as well.

Working out and massage can help with the Lupus arthritis when it’s not a severe flare up. When it is a severe flare up, working out and massage makes it so much worse. Actually, the other day I had a massage and had the lady work on my hands, neck, forearms, and shoulders. Holy cow! I paid for it later. My arms were so aggravated I was stuck on the couch for the rest of the day and most of the next day. But, you know what? The day after that was morning boot camp and I did it.

Lupus arthritis is painful and can totally deplete your motivation to do anything. I get it in my arms, hands, knees, ankles and toes. I love lidocaine gel because it helps with lower adipose areas like hands, shoulders and such and you can put it all over instead of just one place like the patch. I also take anti-inflammatory medications, and though it’s bad, when I need it I use marijuana. That doesn’t exactly help with my fitting back into my pants however. I know doctors say you should exercise but most of the times they have no clue what it’s like to live with. It’s easy to talk when you know the symptoms but have never actually lived them. When you’re not in pain, do what you can. Walk, run, do Zumba, do what you love while you can because, you’ll feel better getting out of the house and working on reducing the prednisone weight. When you can’t workout or get out, rest, relax, don’t let it get you down and don’t let anyone else make you feel bad about it. Your body will tell you what you need and that’s all you need to listen to.

I’m gonna get going for now. Enjoy your day, don’t let Lupus get you down if you can help it, and feel free to comment.