Internalizing Pain

I'm sure I'm not the only one that downplays RA pain at times. Meaning, I throw a smile(even a half smile) on my face when I'm not feeling good. Having lived with RA nearly my entire life, I know people get tired of hearing me complain of hurting. And, I don't always want to be labeled as "that person". You know? Maybe it's not right, But, it's just how I feel. I may feel like screaming that day. Or just crying. Sometimes, at work, I actually will close my office door and have a good cry when I'm in really bad pain. I just don't feel the need to  bring other people down.

Right now, I'm struggling with gallstones. If you've ever had to deal with this, then YOU KNOW. I am trying my best to internalize this pain. The best that I can do at work, is basically starve myself right now, which is not good.

Common Misconceptions

"It's Summer, you should be feeling SOOOO much better now". No, unfortunately, RA isn't controlled by seasons. I wish it could be controlled by something though! When I was younger, summertime was the WORST. Living in California, we get triple digit weather, I always wanted to just dip my legs into a pool. RA'rs know what happens when you go from extreme heat to extreme cold. PAIN! Needless to say, I never learned how to swim!

The same happens when you turn on the air conditioning. Yes, it cools me down. But, after a little while, it starts to make me ache. When I drive in my car, I have on the AC and the windows down. I'm sure to "normal" people it doesn't make sense. To me, it's my balance. I wear sweaters a lot in the summer because of the AC. I'm sure people look at me strangely, but I honestly don't care. I need to be comfortable.

"Why are you so tired?"

This is a question I seem to hear a few times a week. Despite my best efforts to describe chronic fatigue and RA, people think if you "look well", you shouldn't be tired. I work full time, so I look forward to napping on the weekends. Sometimes I'll wake up from a nap, have lunch, then nap again. To me, I'm recharging. That's what my weekend is for. I know if I have too many days where fight through the fatigue, I flare. I have lost friends over this because they simply did not understand, or just did not want to take the time to understand. RA fatigue is real and cannot be controlled. I sometimes wish people could take turns and be in my shoes for 24 hours. I wonder if they would look at me differently?

Neurologist

I went to see the neurologist today. It was my first appointment. I was referred to evaluate my hand tremors, which of course are better. But, I've waited two months for the appointment, so I figured it was worth going anyway. We talked about the hand tremors and how/when they occur. They only seem to happen when I lift my hand, not at rest. I mentioned how I had been having really bad headaches. Bad enough, that my doc had ordered an MRI. The MRI was fine, but I keep getting this sharp stabbing pain in the left side of my head. The neurologist is ordering a anticonvulsant medication. Basically, to slow the activity in my brain. I took the first dose today. The side effects don't look awful. I always worry about stomach upset or fatigue. Those things really get to me. It does say I could possible get fatigue and/or dizziness. I'm going to keep a close eye on it. The interesting thing is, that the doc today was figuring that these symptoms began when I started Enbrel. Right now, it's not enough for me to say I want to stop Enbrel. It's doing more good than it could potentially be doing bad.

RA update

It was absolutely amazing to take time off work. I went with the family to Hawaii. I'm in love with their weather AND beach! It was so nice to take time off work and just relax. Even though I was able to relax mentally, I wasn't physically...but that's ok! We walked a lot and saw a lot. I loved being somewhere that had stable temperatures. Their high and low only vary by around 10 degrees!



I realized something while I was on vacation. NO headaches. It has to be caused from stressed. I was completely relaxed AND even slept in. I suppose this is good news, but I'm still going to keep my neuro appointment.



Last week I started physical therapy for my knees. I do NOT want knee replacements in my 30's if I can help it. It turns out, my hips are really weak. I could kick myself for pushing for physical therapy after my hip surgery. The doctor didn't recommend it, so I didn't push for it. They are recommending to completely stay away from the treadmill and running/jogging all together. It gets me so discouraged. I was just starting to get the energy for jogging and started working on my endurance. I drop weight so fast when I run. I know its for the best, my knees kill me after the treadmill. Maybe the bike and I will learn how to be friends.


I think I'm pretty good at controlling my pain. I get "achy", but rarely is it unbareable. I get a massage every week to 2 weeks. I try to get to acupuncture at least once every few weeks. I'm thinking about throwing chiropratic care in there. Not sure if I'll get anything out of it, but I suppose it's worth a try.

BIG headache, little answers

I have had headaches and migraines for as long as I can remember. Normally, from stress or lack of caffeine. Last week, after my fun trip to the rheumy for cortisone injections, I thought it was time to ask about my increased head pain. For the past couple weeks, I've been getting sharp stabbing pains in the left side of my head and eye. Nothing brings them on, and nothing helps them. It doesn't last more than a few seconds, but once it starts, I seem to have episodes every few minutes. It was bothersome in the begining, now, I'm scared. I am STILL waiting for insurance to approve an MRI. My thought is, they'll probably approve it next week, and by the time it'll get scheduled, I'll be out of town on vacation. I didn't go to the gym at all last week. Partly because of my knee injections, but also because of my head. My doctor told me it could be from a couple different things. One being a seizure disorder, but I don't think that's likely. The other thing is something called Tic Douloureux. Basically it's nerve pain that's not harmful, but it HURTS. I'll feel better after the MRI and know that it's not something else.

It's not a day full of rainbows and unicorns

For the past week or so, I've noticed my fatigue to slowly start creeping back. 2 days ago, my knees starting to hurt when I walk. No swelling though. The swelling is all in my feet. I have cankles, and they hurt. I'm feeling so discouraged tonight. I tasted what it feels like to be normal. I don't want that to go away. I had cortisone injections in both knees today. They are absolutely killing me right now. I thought I was bummed when the doc said no gym for 2 days....reality is hitting in that my Enbrel injections aren't helping like they did in the beginning. It's only been a couple months.