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. Continue reading
Last week I had my first visit with the new Rheumatologist Mariko Ishimori at Cedars-Sinai Medical Center. We discussed my medical history, current medications, she checked my joints and believes the Cimzia is working, it did not feel like it was working fully yet. We also discussed the muscle relaxers and I changed to doing two at night and one in the morning. This has helped improve sleeping through the night. We discussed my thyroid issues and she checked out my swollen lymph nodes and she has referred me to an Endocrinology doctor. After the visit we went across the hall for blood tests checking thyroid and Vitamin D again to see if the 2000 IU is working to bring my Vitamin D levels back up. Lloyd was able to take some photos during the visit at the doctors office and while I was having blood tests done. I will be going back for the results and see the Endocrinology doctor in about 2 weeks. I am not really looking forward to seeing another doctor.