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?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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