I have been trying to deal with the pain of Rheumatoid Arthritis also known as Rheumatoid Autoimmune Disease or Rheumatoid Disease since I fell out of “remission”. RA is a hard disease with pain, fatigue, brain fog and many other symptoms. The pain can be very intense and some of the other symptoms can be very annoying. Some may handle it with grace (RAwarrior.com) but I am a little more clumsy. I am the one that trips, stumbles, slides down stairs and runs into things along the way. I have been on that RA roller coaster of drugs this past week and let me tell you it is not fun. It is hard to decide which drug to take. Is it working? What is next? When will I have to get joints replaced? Will my joints survive better then my mothers joints? What other damage is it doing? Lloyd says I am more in tune with my body than anyone he knows; I have to be. I cannot just ignore the pain, stiffness, mouth and throat dry, having to urinate, having my nose feel clogged/swollen. I wish it was that easy! I would love to do that. I try to do that all the time, it usually does not work out if I ignore it. Since my Rheumatoid Arthritis began I have found it very hard to follow along with conversations, if any pain starts or fatigue then I will miss parts of what people are saying. I learned to make list so I would not forget what I needed to do. Sometimes I forget I have a list.
The Flexeril I was taking was not working very well so the doctor gave me a prescription for Zanaflex. Usually when I get a new drug I do some research about it. This one had side effects that included vivid dreams, seeing things and some patients were having nightmares. One mentioned fighting spiders that were not really there. I told Lloyd these side effects, someone should know what could be causing someone to see things or what if I am fighting a big spider in the middle of the night, that might not help my shoulders much. The first night I took the Zanaflex I did have a vivid dream and it was a little strange. I felt like I was just waking up, trying hard to see the writing on the wall above the sliding glass door. It looked like chalk art on a bright white wall with some writing. I was trying really hard to get my eyes fully open to see that writing. Then another part of my brain kicked in, I realized I was dreaming. I remembered the wall was not a bright white wall, but the dream was still vivid as I felt like I laid my head back down as I realized I was dreaming.
I found the Zanaflex only helped me sleep around 4 hours, then I woke up with some pain but felt wide awake. Still it felt like the best 4 hours of sleep that I have had in a long time. The Flexeril just did not seem to do that for me. The 4 hours of sleep was not enough for me to be able to function throughout the day but it was nice to feel like I slept great; it has been a really long time since I slept “great”. Back to side effects. One day we were out having dinner and very small ants started crawling across my plate, I grabbed my napkin and pointed it out to Lloyd; he saw the ants. I wasn’t sure if I was just seeing things, my mother did get kicked out of a restaurant for seeing bugs and ended up in the hospital, so side effects of the drugs concern me.
Just when I think I have the dosage figured out and I am heading in the right direction I get knocked down again. Lloyd had pain in his lower leg, I could feel the tightened muscle, so I grabbed the high CBD coconut oil and started massaging his leg until I could feel it was looser. When I stood fully up again I could feel the stiffness in my lower back. Then the pain in my shoulders that had gone away after the Zanaflex came back and came back hard, my shoulders were on fire with pain. I could not sleep so I waited until the next dose hoping it would help. At some point Lloyd called the doctors office and a new prescription was called in. I do not think the Cimzia is helping enough, if it was, I would not need to be on the muscle relaxers.
The last couple days have been pretty good and pain free most of the time. Still having trouble laying down flat, my nose feels like it swells in the inside and my mouth and throat dry out. I am on Amrix ER and Flexeril and it seems to be working, just makes me sleep too much. I use medical marijuana to help get relaxed as well, I can’t focus that well after using MMJ but I usually cannot focus well by the time I use it anyhow. Not sure what is next. My lung function tests were good, the Thyroid function tests came out fine I guess, scheduled tests for January to check up on it again. Still having trouble breathing the last few evenings.
I did learn a few new habits that were causing me to have more pain. First was my shoulder strap on my purse broke so I was hanging it on my wrist, I noticed extra pain when I did that so I switched to a new purse. I also learned pain my my shoulders and neck increased when I used bar stools. Evil bar stools definitely increased my pain to levels to high even with Flexeril. So I will not or will try not to sit on bar stools.
I also learned something strange, when I find the right way to lay my head and neck the pain would be lower and other symptoms would end as well. Those symptoms are the swelling of the inside of my nose, feels stuffed up but isn’t, dry mouth and throat would be over (like my glands are working again), pressure in my forehead would go away and at times it seem my thoughts were on fast forward, but they would stop if I found the right way to lay my head. (see The Art of Sleeping with RA and Bad Week, Hard Lessons pressure in my head)
I have no doubt that Rheumatoid Arthritis Caregivers or Lovegivers have extra stress just from watching someone they love in so much pain as well as everything else that comes with RA. During the harder pain thinking gets scattered, I might think of something important but by the time I get to my desk and grab the pen it is gone. I have had to ask Lloyd if I took muscle relaxers because I don’t remember if I did or not. Now I let him know when I take one so if I ask he knows.
I must seem pretty crazy during these hard times. I rotate from seats to bed to walking to reduce pain. I find myself crying then laughing from things I think of while I am dealing with the pain. I remember when me and my little sister would hold the phone out and beg our mom to come pick us up for the weekend. She had called to let us know she wasn’t going to make it because she didn’t feel well. We would beg her to come get us because we wanted to see her, sometimes she would give in and come get us. She probably shouldn’t of been driving. So in those crazy painful times I can’t help but cry when I realize how she felt. I also do crazy things that my daughter probably does not understand. Like sitting on the bleachers to watch her graduate, instead of picking a seat on top so I can lay against the wall, I went for a seat closer to the stage so I could get better photos. I also put on my heavy lens and flash, even though I know I will not sleep that night because the pain will be so bad. But I was able to get a few great photos of her graduating so it was worth it to me.
Lloyd says I am not driving anymore. I can tell how I feel and if I can drive or not. I missed a couple stop lights back in 2007. Since then I have paid attention to how I feel before driving. This past winter I was dealing with more stiffness than now, so Lloyd drove us to the store to shop and I usually only made it out once or twice a week because I was dealing with some fatigue as well. So when I am good, I can’t help but enjoy the little things like getting out of the house to do things, even grocery shopping. It is like the first time I could stand to do my own dishes back in December of 2007 when I had B12 shots added to my cocktail. The next day I stood at the sink washing my dishes and crying because I could, before the B12 shots I could hardly move from the couch I was so wiped out.
This week I also remembered getting ready to move to California from Indiana. I had to do a garage sale to get rid of some items. Some family members said they would come by to help get stuff out for the sale. One of the mornings people were showing up to take a look at what was for sale, I slid the boxes out to the tables, started picking things out of the box and putting them on the table. It didn’t take long before I was in to much pain to do anymore, so I had to tell them the stuff was in the boxes and let them just look through them. At some point I sat down in a outdoor rocking chair, I felt some relief rocking in the chair. I remembered my mom loved rocking chairs and had realized part of the relief she was getting in a rocking chair.
When my family came over to help pack up the trailer they figured out a way to get everything in it including the rocking chair. I don’t think they could understand why I cared about a stupid rocking chair that probably only cost around $50, I could not explain why I wanted it either because I was dealing with fatigue. I had it for 4 years, nothing special about it. This week I couldn’t help but laugh at wanting that stupid rocking chair and then cry as I remember the feeling of relief and understood more of the pain my mom was going through. Funny how such strong feelings made me so attached to a rocking chair my mom had never used. We had to repack the trailer so it is still sitting in the garage in Indiana. I know I will still have that feeling when in pain and sitting in a rocking chair. I wonder if any other Rheumatoid Arthritis patients have a rocking chair and find it to be a helpful tool when having stiffness? I would say that in a rocking chair is probably the place I seen my mom be able to move fast and easily, sitting and getting up from it was a different story.
So far I have had only 1 great week while on Cimzia, so I do not know if it will get me back into remission. Needing muscle relaxers just tells me that the Cimzia is not working enough. The first time I went into remission was in the summer of 2007. I just had Enbrel added to my cocktail, Arava was not doing enough. As my remission started I still felt bruised, usually around my hips and my feet were weak as well. I had been “flaring” since December of 2003. The bruised feeling went away after a few more months on Enbrel, but I still felt weak from being sick for so long, makes sense who could just jump out of bed and be 100% after spending years laying down or sitting down and not doing much at all. During the first part of my remission the most exercise I got was flying out to California to meet Lloyd. During that first year I still had fatigue, improved in December of 2007 when I had B12 shots added to my cocktail. Anyway I would drive to the airport, make it through security and get on the plane wiped out so I would fall asleep right away and wake up when we landed sometimes stiff but it would go away after I was moving around. Then I would get picked up by Lloyd, sometimes we ate before making it to his house. Every time we made it here I would pass out right away for hours. So remission was not just having the right drugs, it was having the right drugs and then rebuilding your strength from there. My “remission” was best between 2008 to the beginning of 2010.
In the beginning of 2010 I was going to try to do a video a day (did not last long, instead I stuck with doing photos each day). But during the first part of January Lloyd dared me to make a snow angel. So I decided to make a how to make a snow angel video. First I went shopping for some snow pants, after 3 stores only having kids and men’s I gave up and just went with layered clothing. This video was on the CBS Chicago news, they just used the making the snow angel part. Anyway when I put the video up my 16 year old daughter was like MOM why did you have to say you had thermal underwear on, I just thought she should be happy I did not mention they were men’s thermal underwear because I could not find any for women. During the best part of my remission I could workout an hour a day, stay on my feet longer, walk farther and had very little aches and pains. I hope to be in remission again and I hope others will find it as well.
Don’t forget the Rheumatoid Arthritis patient online support group on Twitter Sundays via TweetChat – #rheum at 12:00 P.M. PST. Also if you are a patient, caregiver or part of the medical community and are not a member of Rheumatoid Patient Foudation please join today and gain access to much needed educational information and patient feedback.