My short (but long) journey with RA
First, the middle of my story. I was diagnosed with RA in July 2017. It had taken over 18 months of various tests, even with a different Rheumatologist than the one who finally gave me a diagnosis, to determine what was really wrong with me. I had been feeling fatigued, always had disturbed sleep – almost to the point of being immune to sedation, and could not stop yawning during the day. It was embarrassing as a Senior-level employee in my company. It was also beginning to make me think I had something “not right”. This continued into bilateral pain in my muscles and surrounding structures – many times in my forearms, wrist joints, pectoralis, shoulders, and legs.
So, we started with testosterone, thyroid function, and a few other things. Everything was normal. I suggested a sleep study, and we found I have severe obstructive sleep apnea, but even with a CPAP, which I use every night, I continued to feel fatigued throughout the day, and my sleep was disturbed and non-restorative.
We continued other blood work, including any type of tick-borne disease imaginable. I was treated with 2 rounds of doxycycline just to ensure that was not the cause. Nothing was abnormal, except for my SED rate, which was 31 on a 0-15 scale. I had been plagued with recurring diverticulitis for years, and based on a colonoscopy and discussion with PCP, I had 10 inches of my colon removed. This resolved the inflammatory bowel issues I had, but still could not explain the chronic pain, fatigue and mental fogginess that I experienced on a nearly daily basis. We started gabapentin as a possible way to reduce the pain I was feeling. My RF was 24.5 on a 0-30 scale, but we didn’t think that was it.
I was sent to a local Rheumatologist as I mentioned above. He gave me a quick exam, talked about my symptoms, and told me he believed I had Fibromyalgia and that I should go back to my PCP and get a prescription for an anti-depressant. I was horrified as how I was essentially told, “This is all in your head”. He didn’t even bother to check my RF in the 7 vials of blood I had given him. They took x-rays and an MRI, found nothing conclusive, and away I went back to my PCP.
We started anything that could relieve pain. Gabapentin was increased, I suggested clonazepam because I had done some research that said that could reduce the pain of Fibromyalgia, I took muscle relaxants. Nothing worked. I saw my PCP 10 times in a six-month period, and he said, “I’m going to refer you to the Mayo Clinic and see if they can help.” And off I went.
So, the start of my journey with RA… within 5 days of tests and other lab work, I was given a conclusive diagnosis of sero-positive Rheumatoid Arthritis. From the x-rays, it was clear I had bone erosions on my metatarsal bones and in my wrists, the MRI I was given conclusively showed I have synovitis in my wrist and metacarpal bones. It was absolutely evident. My RF was slightly elevated at 17 on a 0-14 scale, and my CRP was elevated at 8.3 on a 0-5 scale. I hated the diagnosis, and my wife was not able to be with me the day the diagnosis was given.
I was prescribed MTX, and took it for a bit, but got a stomach virus we thought was a reaction to the medication. I was prescribed Arava, and that was the nightmare of nightmares. Severe anxiety and panic attacks all day and all night. The moment I stopped, the condition went away. When I tried taking Arava back up, within 1 hour I had panic attacks again. We went back to MTX.
I began to look back at my symptoms, and noticed that I was always rubbing the 4th and 5th metatarsal bones on both of my feet. I was beginning to not be able to open jars on my own. I had pain in tendons and ligaments – I even tore my hamstring while playing softball. I had done weightlifting all my life, did yoga, did P90X twice, had tried to start running, and I couldn’t do any of it anymore. I thought about all the other little symptoms I had had throughout the last decade, and it was clear that RA had been with me for all of that time.
In late September, we had a temperature swing of 30 degrees in one day with a corresponding drop in barometric pressure. I had my first “flare”, was put on Prednisone, and would follow up at my next visit in October. At that visit, I was told I had an SDAI of 36.00 and a CDAI of 35.70, and had “high disease activity”. I was placed on triple therapy – Plaquenil, sulfasalazine, and the MTX – in the hopes that would calm things down. Really, this didn’t do much for me, as my symptom log shows many days where I worked from home or was in too much pain, too foggy, etc. to work.
In late December, we visited family in Colorado, and I was nearly symptom free, with exception of the day after I took my MTX. I was able to go hiking, did yoga twice, got a massage, etc. On Friday, it was 66 degrees in Colorado. When I came home the next day, the wind child was -38. On January 1, I began having symptoms of a flare, but didn’t think it was too serious. I worked on 1/2, and then was WFH or in bed for the next 5 days. I worked on 1/8, but was in terrible pain – primarily in my feet, ankles, and knees, plus my hands, wrists, and elbows. I went on Prednisone again, and I actually asked my wife to get her mother’s cane out of our garage because I feared I was going to need to use it. I came home Monday night, exhausted, in debilitating pain, and to a wife who had done enough research during the day that she now started to really understand what a flare is, what kind of pain I was having, and how even Tramadol was not touching it.
I see my doc at Mayo on 1/18, and I expect I will be placed on a biologic plus MTX injectable at that point. I asked for a sonogram or some other imaging so we could tell if things are progressing, but the doc thinks we can have a good plan without.
So, what is next? I don’t know. I am the primary breadwinner in the house, and while I am at work today and feel better than previous days (despite severely disturbed sleep – I got up at 3am), I am not certain I can continue working in a stressful environment like I have. We talked about many things last night, including the possibility of selling our home and moving into a townhouse or a condo. We talked about my not being able to work at some point – perhaps sooner rather than later. We will have to see, but I am beginning to think that disability could be an option if we can’t get this under control. I’ve gone from walking around the Mayo campus with some pain, to nearly needing a cane in less than 6 months.
I will continue to stay up on the latest here at RheumatoidArthritis.net, and see if there is anything I can offer the community. I thank you for your support and willingness to read my story. I hope you have something to share as well, because we’re all in this together, right?