Last week I had a bad flare, one that made it at times hard to sit and hard to hold my arm up to the keyboard and mouse. We had 4 or 5 days of rainy weather, I lost track. Friday through Sunday was my worst days; I am not sure why cold or rain aggravates my Rheumatoid Disease (previously known as Rheumatoid Arthritis) but it always has. It was pretty frustrating because I had work I wanted to get done and the rug was pretty much pulled from out under my feet with the “flare”. Rheumatoid Disease is not something I can control; even medication does not make me “flare” free, even during a “remission” period.
During the flare the pain was so high I started to experience anxiety which was high during that weekend and took over a week more before it was completely gone. Even more frustrating was today when I realized I had Flexeril muscle relaxers that would have probably reduced the amount of pain I was in but I did not even think about them. To try to explain how bad the anxiety from the pain is, I started watching just the food network. How can that cause additional anxiety? Well the cook was making some chips and some were from sweet potatoes, but they were white. I had never seen white sweet potatoes so I was feeling upset that she was smiling and cutting up these sweet potatoes that did not look like sweet potatoes to me. Also Lloyd mentioned to me that he picked up a TENS unit for me to help reduce pain and I was upset that he was getting me something that would electrocute me. I really wish I would have thought of the Flexeril hidden in a drawer but the pain went up so quickly and I was too exhausted to think about them.
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
This week I have felt a little blah a few times. I am working on filling out paperwork for the new doctor as well as gathering all the documents, test reports and history for my appointment tomorrow. I know I have rheumatoid arthritis, I know I will continue to deal with pain, doctors, tests, fatigue, weight loss and everything else that comes with dealing with this disease for the rest of my life. I hope for “remission” from this roller coaster ride but it seems to be stuck on a never ending track. It has been almost 2 years since it was clear to me that I was no longer in remission and it took over 3 years to get in remission the first time around. It is hard to continue to have hope at times.
I guess I am just missing the remission time I had, the type of remission that most do not get (see Why say a patient #FAILS treatment when RA treatments fail patients?). But I still hope, hope for that morning I wake up and feel no stiffness, fatigue or pain. I have had that happen before so I hope for it again. I started Cimzia hoping for less stiffness, but the Flexeril seems to be the thing helping the most at this point and I still feel some stiffness throughout the night and in the morning, it feels like I have “sticky” joints. I have noticed a few good days and less swelling in my lymph nodes, so there is still some hope. I have been sleeping a little better since I started on Flexeril (see Art of Sleeping with RA).
I feel a little blue when I want to exercise the way I did while in “remission”, I miss it so much. It is hard at times to see posts on social networks about running or working out. I miss the way it made me feel happier after exercising. Right now I walk at night with Lloyd and the dogs. I could walk more and try to lose weight like my last doctor suggested to me, but to me the weight loss that happens with this disease at times is scary. I felt warm a few times this week, so I stepped on the scale this morning. I lost 4 lbs, I do not know why because I have had a few Starbucks and chocolate and desserts. I have dropped 20 pounds in 2 weeks and over 40 pounds in 2 months during bad flares; I would rather have the extra 20-25 pounds on me to lose or be in remission and be able to work it off.
I am not really looking forward to the appointment tomorrow with the new doctor. I get a 1 hour appointment to give her 8 years of history with the disease. I know I can see her until the end of October, then I hope to have health insurance so I can continue to see her.
It has been awhile since I did an update. I have been feeling good, not much pain or stiffness in joints but I have still been dealing with my back. I did finally get off the Flexeril in the last week.
I have added a this stuff called take charge that I can add to my yogurt and it gives it some crunchiness, it is a multi vitamin. I did notice there was not any Vitamin D in it so I picked up some Calcium Plus Magnesium and Vitamin D-3 from GNC. While I was there I grabbed MSM, Omega Complex and Glucosamine the non shellfish kind. A few days after starting them I noticed my back pain went down some but not all the way. I tried no Flexeril and the pain was down enough that I did not need the Flexeril, but I did need to do more stretching. I found doing enough stretches at night before going to sleep and I wake up without any pain. If I do not do enough then I wake up with stiffness so I do more stretches. It has worked so far!
I am in Los Angeles visiting my boyfriend. We went to Sequoia National Park, Kings Canyon. and Yosemite National Park to take some pictures. So I did get more exercise this last week. We are back at his house and last night I went for a walk with him and Buddy.
My feet did swell up after a walk down and then back up a hill in Sequoia and the pain was around a 3. The next morning they were fine. When we went to Yosemite they got a little swollen by the end of the day but just a 1 on the pain scale. I am still dealing with back pain if I do not take the three Flexeril.
I have noticed more sweet cravings since I started on the Flexeril.