Now that I have detailed my experience with the acute phase, in this section of the blog I’ll focus on the sub-acute phase.
I felt the virus take three distinct phases. The first phase, the acute phase, was the initial phase that is most physically debilitating, where I had the craziest symptoms such as the rash, fever, loss of taste, worst joint pain, gum bleeding, etc. The sub-acute phase, according to me (ha!), is everything after that initial bout of crazy symptoms until the chronic phase starts; from after those initial 11 days, until about the 3-4 month mark. Those first 11 days were rough, but I wound up going back to work right into the same swing of things as I had prior to getting the virus. I was back into working 10-12 hour days (M-F), and was feeling the stress of tight deadlines, shifts in management personnel, and had 7:15AM meetings every day for the project I was on, forcing me to take the first commuter train in the morning, the 5:51AM train. I commute 1hr 25 mins each way, so my days were incredibly long. I also tried to keep up my fitness by going back into my normal routine. I’d say on average I probably slept 6-7 hours per night. Ultimately, this schedule lasted 2 full months (made it until the end of September – note that I first came down with symptoms July 12th), until I got so tired, depressed, run-down, and miserable that I decided to take a leave of absence from work. My joint pain had plateaued and I felt I was not getting better. During this leave of absence, which lasted 3 more months (until January), I believe that I transitioned from the sub-acute to the chronic phase. In this section of my blog, I’ll only be discussing the sub-acute phase with regard to three main areas:
- The physical aspects of the sub-acute phase
- The emotional/mental aspects of the sub-acute phase
- Some remedies/coping mechanisms I tried (or was prescribed)
- The physical aspects of the sub-acute phase
After the initial phase of chikungunya, my joint pain persisted in the following joints (in order of decreasing pain – so the worst is first): wrists (symmetrical but worst on right), ankles (symmetrical but worse on right), SI joint in my hip (left side only), elbow (right side only), shoulder (right side only), lower back pain, base of neck (where the neck connects with the top of back), and select finger joints (the middle joints). I found that, for about a month or so after the acute phase ended, the pain was pretty consistent. After that initial month, for the following 2-3 months of the sub-acute phase, the pain waxed and waned. It came in bouts of ~4-5 day duration. So if I woke up with excruciating pain in my wrist, I knew it would last a few days, and then subside. I tried testing theories of what caused these “bouts” as I call them, but nothing was conclusive. I tried logging pain against weather, paying attention to what I ate and how hydrated I was, by logging physical activity, sleep… nothing proved conclusive.
I also found that I had a lot of tendon pain that was more painful than the joint pain itself in the sub-acute phase. The worst tendon pain that I experienced was the side of my right wrist. This pain was excruciating, and probably the worst pain over the course of all of the chikungunya. It hurt when I moved the wrist back and forth, side to side, or when I was typing and stretching my pinky finger (the “o” and “p” keys were especially painful). Turning the shower dial was especially painful. When I had this pain, I also had physical swelling of the wrist, on the outer side, from the base of the pinky throughout the wrist joint to about where I keep my hairband on that wrist (maybe 2” below the joint). For the most part, this swelling and wrist pain lasted the entire duration of the sub-acute phase, with maybe a few days of relief here and there. I had this pain in the left wrist too, but not nearly as bad. Additionally, I experienced tendon pain in my right ankle, which was exacerbated by my own stupidity, which was basically me trying to get back into running too soon. The pain radiated from my outer ankle bone above the sock line all the way through the outer side of the foot to the base of the pinky toe. The pain was worst when I pointed my toes, or when bending my ankle inward (as if I was going to stand on the outer edges of my shoes).This pain was also worse on my right side, but also did exist on the left. Physical swelling appeared as well on both sides. Wearing high heels was painful (I was wearing sneakers to work with my dress pants like a big dork), as was generally putting on and taking off any shoe. Putting the shoes on was more painful since I had to point the foot.
I also had random muscle pain. I had it in my quad for about a month in the upper half of my right thigh. This would hurt the most in the morning when getting dressed/putting pants on, and when doing squats or lunges in the gym (I’ll talk more about my exercise later in this post). It only lasted about a month after the initial phase, and there were no stretches that would alleviate this. Foam rolling helped slightly.
The pain in my SI joint lasted the entire sub-acute phase into the chronic phase. This pain was worst when I was lying down on my back, especially on a harder surface (a hard couch, the floor, or a hard mattress). Once lying down, it was hard for me to lift either leg to sit up. It also hurt if I was going up a big step, like the ones I needed to step up on to get into the commuter train.
The pain in the base of my neck was not an acute pain, but more of a general “I need to look up in order to relieve this pressure/discomfort” pain. It hurt when sitting, but not laying down. This pain lasted through the chronic phase as well.
Last but certainly not least, I had a headache… one constant long headache lasting about three months. The headache was mostly in the top/front of my head, but was not acute pain. It was more of a dull uncomfortable headache that would not go away no matter how much I hydrated, slept, or moved around. It was not a debilitating headache, but was consistently annoying, uncomfortable, and distracting.
What really stinks about this phase is that nobody can see your pain, so everyone thinks you’re ready to go back to 100% effort, living a normal life. Most of my work colleagues thought I was fine, and hence piled on the work. I almost wish the rash lasted longer so that people could see how much this entire phase hurts on the inside.
- The emotional/mental aspects of the sub-acute phase
Second to the pain in my wrists, emotional disturbance/depression/inability to concentrate were probably the next most debilitating symptoms of the sub acute phase. I have never had issues with depression, and I have always been a stable and rational person. I’m an engineer, and in my job, I solve problems for a living. When confronted with an issue, I am trained to immediately figure out how to fix it (and follow through) rather than dwell on the issue itself. I apply this to my personal life as well, and even in times of transition or crisis, I generally get over it without becoming overwhelmingly depressed to the point where I need help. (Of course I get sad – I’m human – but insomnia/hopelessness/misery is not something I’ve experienced before.) I also have no family history of depression of mental health issues.
During the sub acute phase of chikungunya, I felt my ways of thinking shift. I became depressed in that I was no longer interested in talking or spending time with my friends or family, which typically makes me happy, and I also was no longer looking forward to the weekends or any fun activities. Any issues at work or in my personal life suddenly became huge insurmountable troubles. I felt like I had no hope about my future (this was a biggie), and I was so stressed out at my job. I was emotionally not resilient to life’s normal stressors and troubles, and it all weighed on me heavily. I had no appetite despite me being quite the foodie, and I had insomnia, waking up in the middle of the night for hours without being able to fall back asleep. Also, I had been Googling chikungunya, and the information I saw told me that a lot of the arthritic pain I was feeling could possibly be permanent. Me? An athletic 27 year old in excellent health? Perfect yearly blood panels? Flosses daily? Who puts in so much time at the gym to take care of myself? How could I develop permanent arthritis at this age? Acceptance was a major hurtle. Additionally, I could no longer comfortably do the things I’m most passionate about such as yoga and running. Running hurt my ankles too much, so I gave up for a few months, and yoga was hard on all of my joints, especially ankles and wrists. I stopped for a couple of months, then continued to do yoga throughout the end of the sub-acute phase even though it hurt. I do feel like this was therapeutic, and I do feel that putting the joints through full range of motion through yoga was helpful; afterwards, I would see relief. However, while actually in the yoga class, it was painful, so it was not as enjoyable as it used to be. I also used to deadlift heavily and had pull-up goals, but I had to let these go in the short term because these heavy-weight activities were not recommended by my doctor, and they were hard on my joints… pull-ups especially on the elbows and wrists.
I wound up spiraling into a depression. I had been seeing a psychologist since June (before the chikungunya) to discuss other issues related to my career (I am considering a career change and need help navigating that transition), but the appointments took a turn to treat depression during this phase of the illness. The psychologist – a generalist — also happens to treat patients with chronic pain, and his advice on pain meditation was AWESOME. I found an effective meditation guide on youtube that I’ll post later in this blog post in the “remedies” section. He also uses CBT to treat patients, which really helped me change my thought patters around my pain and around the sadness I was feeling. I was also referred to a psychiatrist by my infectious disease doctor. The psychiatrist tested me on some memory/concentration skills (which he did see small deficiencies on during month 3 of the virus) and he also prescribed antidepressants. You would think, being that I’m in the biotech/pharma industry, that I would readily take antidepressants; however, I ultimately chose not to take them. My personal beliefs were that I wanted the cause of the depression to go away, and I didn’t just want to treat the symptoms. I also read about the side effects of antidepressants, specifically around withdrawal, which concerned me. What I was prescribed was Cymbalta, which, to the psychiatrist’s credit, was probably the perfect prescription since it treats both depression and chronic pain/fibromyalgia. Still, though, after much thought, I decided not to take it.
Am I glad that I decided not to take antidepressants? Well, I obviously don’t know how I would have fared on them, but about a month after I was prescribed them (but didn’t take them), I basically hit rock bottom at the psychologist’s office. What a perfect place to hit rock bottom!! I just kept repeating “I just want to be happy!” through sobs. I just couldn’t understand why I was not happy. I have a great life – I’m newly married, I own a house, I have a stable job that I take pride in, I have a loving family, friends, a busy social calendar, I had just taken an awesome vacation to Turks and Caicos… I have everything I want and need. Why couldn’t I just be happy? Why was all of my idle time spent just thinking about existentialism and life’s purpose? Why was I put on this earth? What’s the point of getting up every day and doing the routine? Why am I in so much pain? Will it ever go away? As I was sinking into rock bottom in his office asking these ridiculous questions, the psychologist asked the question, “after you leave my office and go home, are you going to be safe?” That question hit me like a slap in the face. It said, without actually saying it, “pull yourself together!” From that point, it was uphill, thankfully – although a very slow, gradual uphill.
On top of the depression, one other mental symptom I experienced was concentration problems. I was taking the GMAT during all of this, and I had started studying before the chikungunya. Beforehand, I was my normal studying self, reading on my commute, reading at starbucks, doing flashcards during commercials, etc. Once I got sick, my concentration was off. I couldn’t focus. I’d have to read paragraphs again and again to absorb them, and I was easily distracted by either “shiny things” or by depressive thoughts. Even when people were talking to me, I had trouble following what they were saying if they were speaking for more than, say, 30 seconds. My ID doc had heard that concentration can be affected by chikungunya also, so at least I felt validated. As I mentioned, the psychiatrist performed some concentration testing on me, and the testing did show deficiencies during month 3 of the virus.
Overall, the depression and mental aspects of this virus hit me hard, and lasted through the first couple of months of the chronic phase, as well. Now that I’m 7 months into the virus, and writing this, I feel as though I’ve successfully come out of the depression and am back to myself again. One thing I need to share is the psychiatrist’s two theories on why I was depressed. He specializes in the intersection of infectious disease and mental illness, and he was the perfect person for me to have been referred to, as he had great insight: his first theory is that, if the body needs to rest because of a severe illness, such as chikungunya, it will start shutting down parts of the brain such as emotion and concentration, in order to force you to want to rest. This shutting down ultimately creates a “fertile ground” (in his words) for depression. My body needed rest, and, although I had weddings, baby showers, parties, and dinners in my social calendar, which I no longer wanted to go to (and was a no-show at a few things), that was my body’s way of telling me to slow down. REST IS KEY (I can’t say this enough), and that was my body’s way of telling me that. I was fascinated by this, especially because I had trouble identifying a root cause for my depression/helplessness, and I believe this theory is absolutely true. His second theory was about inflammation. There is a lot of substantiated research about the cause-and-effect relationship between inflammation and depression. Does inflammation cause depression? Google has a lot of information about this topic, and ChikV certainly comes with some inflammation. I found this PBS article on the topic to be pretty interesting: http://www.pbs.org/wgbh/nova/next/body/depression-may-caused-inflammation/
I wanted to also add to this blog one thing that the psychologist (the CBT guy) said that, at the time, didn’t really seem all that important, but it helped me even though I didn’t realize it. I was telling him about how I was sort of wishing the days away. I just wanted the joint pain to go away, and on top of it I wasn’t feeling that my job was all that fulfilling at the time… I felt a little stuck from a couple of angles. I felt like I was running on a treadmill doing all these great things for my health, but was still in debilitating pain, not really moving forward at all. And while I was working really hard at my job (and kicking ass at it if I may add 😉 ), I wasn’t feeling fulfilled at the end of the day. I was having a mini “existential crisis” as I like to call it. His response was, “well, there are two ways of looking at your days. You can treat them like a tear-off calendar — and basically throw away each day as it passes, or you can treat each day like gold.” He then added, which I thought sounded absolutely ridiculous at the time, “You can look at the day ahead of you and think to yourself, ‘wow! Another day to live! What’s in store for today?'” Although in the moment of hearing this I didn’t think much of it, I’ve thought about it a lot. Especially in the midst of being in horrible physical pain, it is so easy to wish time away. But I really had to force myself to continue living my life and spend time doing the things I love, like seeing family, friends, going out for walks with the dog, going to zumba (even if I had to take it easy), making plans, studying for going back to school… doing happy things. It may sound stupid, but forcing myself to shift my way of thinking made a big difference for me during the sub acute and chronic phases of this virus.
Now, at 7 months, I’m feeling a lot better physically, and mentally, I feel myself. After this roller coaster ride, I now have a much greater appreciation for mental health, and a greater respect for those who suffer with chronic pain and/or depression. For all of you out there who are experiencing depression with chikungunya, hang in there. It will get better (I promise).
- Some remedies/coping mechanisms I tried (or was prescribed)
Here, I want to discuss some of the remedies that I tried. I’ll discuss what I did and did not find effective:
- Mobic (Meloxicam)– this stuff works for joint pain, but at a price. I was prescribed 15 mg/day. On the third day of taking this, I felt incredibly nauseous. I also found it difficult to drive at night because of vertigo, and I felt that I had some depth perception issues (potentially caused by the lightheadedness). I talked to the doc, we lowered the dose to 7.5 mg, and I ultimately wound up taking it on an “as needed” basis, sort of like Advil. I still take it throughout the chronic phase on “bad days”, which is rare now. However, during the sub-acute phase, I took it a few times a week.
- Fish oil supplements(I take 1500mg tablets I got at GNC) – I personally felt that my joint pain finally stopped plateauing once I started taking fish oil. I can’t say conclusively that the fish oil did the trick, because there may have been other factors at play, such as rest, but I believe that it helps. I stopped taking it for 2 weeks over Christmas when I fell out of my routine, and the joint pain got worse, then got better when I started taking it again. It was my personal trainer who told me about this stuff, and I’m still taking it even now, 7 months into the virus. I’ve accepted that I will take this forever. (GNC membership here I come!)
- Advil/Tylenol– Advil and Tylenol did nothing for my joint pain or headaches. NOTHING. Plus, during the initial phases of chikungunya, my liver showed elevated enzymes, so you’re not supposed to take ibuprofen during this phase. Once my liver was back to normal, I took it, and, as I said, nothing,
- Coconut water– I drink one of these EVERY day, and I think it helps lubricate the joints. I don’t know if it’s actually the coconut water or perhaps just the overall benefits of hydration, but I think it helps. I drink the Goya brand with the coconut chunks in it. I think it tastes good (plus it’s the cheapest at my grocery store).
- Exercise– this is a biggie, and I think it’s pretty controversial among chikungunya doctors and patients. I am a huge exercise enthusiast and chikungunya definitely got between me and my passion. I talked to my doctor who gave me the best advice of “do what feels good”. My favorite workouts are the following, and here’s what I did/how it made me feel throughout the sub-acute phase:
Yoga — I had to give up yoga for a solid 2 months after contracting chikungunya. Yoga is intense on the wrists (via the vinyassa poses — especially down dog), and it’s also tough on the ankles and elbows. (Ankles kill during upward dog.) It hurt, so I stopped. I started up again about 2 months after contracting the virus and I believe it helps, because the relief I feel afterwards is great. I would feel great for the rest of the day, and I recommend it to anyone who is towards the end of the sub-acute phase.
Running — I stopped running, and still, after 7 months, am very cautious, and am not running more than 2 miles in a given run. (I used to do one 10k/week.) Running hurt not only my ankle joints, but also flared up the tendons in the side of my foot which never happened before chikungunya.
Zumba — I never stopped Zumba. I did it the whole way through once the acute phase was over. Don’t get me wrong — I was really out of breath and had to modify some moves that bothered the joints — but I managed. I just stood in the back. The best part about Zumba is that it makes me smile. 🙂 The key was to stop or modify when I felt pain.
Spin – I never did spin as frequently as my other workouts, maybe 2x/month before chikungunya. I did manage to keep up this frequency throughout the subacute phase since I couldn’t run for cardio, but the ankles and wrists hurt a little bit when doing it. Again, though, afterwards, I saw some relief. I also really hate being “that girl” in the class that is obviously on a lower resistance than everyone else, but that was me for a while. A girl’s gotta do what a girl’s gotta do.
Heavy weights — I actually did not stop weights workouts (a lot of doctors will probably disagree with my choice here!), but I did decrease my weights across the board and stopped incrementing. Deadlifts, however, I did stop for a longer duration because these are risky even without having chikungunya. Now, at 7 months, I’m just starting to increment my deadlifts again. With exercise, I want to stress that the warm up is SO IMPORTANT. I put the joints that hurt through full range of motion warming up. I did moving stretches, like ankle rocks and easy jump squats just to get the body warmed up. Even arm circles and “stir the pot” were great for the joints. The warm ups did hurt a little, but really eased off the joint pain afterwards. Sometimes it hurt so bad I had to stop… I really had to be careful. Foam rolling also really helped me as a warm up. Again — I stuck with the “do what feels good” mantra.
- Anti-inflammatory Diets – I am adding #6 to this blog after having ChikV for a year (this wasn’t originally in the blog). I have read many articles about how certain diets can help with rheumatoid arthritis and inflammation. Now, I understand that RA and chikungunya are not the same thing, but there are many similarities, and the cause of the “bad days” seems to be unknown for either cause of joint pain. There are a lot of health benefits to diets that reduce or eliminate sugars/carbs/processed foods (diets like paleo, anti-candida/yeast-free, Mediterranean etc.), so why not try it as a solution for ChikV, especially if you’ve tried EVERYTHING else? Here is a link to the diet that a nutritionist gave me (this diet will make you feel awesome by the way and will make you so “regular” it’s nuts!) I didn’t actually do this diet until I was towards the end of the chronic phase, so I don’t know if this had any effect on my pain. HOWEVER, when I started cheating on the diet, I noticed some of the pain returned. If anyone tries it and has success (or it doesn’t work at all) please let us know on the blog! This is definitely worth a shot. Here’s a CNN article about anti-inflammatory diets and RA, and here is a link to the diet my nutritionist gave me, which eliminates all sources of yeast including sugars, carbs, caffeine, and vinegar.
Nutritionist gave me this: Yeast-Free-20131 (1)
- Therapy/therapeutic things– Psychotherapy definitely helped me with the depression, as I mentioned before. If you feel signs of depression during the sub acute or chronic phase, please go get help!! My health insurance even covers most of it. A listening ear is a wonderful thing, and you don’t even have to tell anybody. Also, the psychologist suggested pain meditation, and this REALLY helped with my wrists, in particular. I didn’t used to be a person who invested a lot of time or really believed in meditation, but I have a new respect for meditation. It’s about imagining the colors of painful parts of your body versus the healthy parts of your body, and changing your perspective on the painful parts. Here’s the link – please don’t knock it till you try it!! https://www.youtube.com/watch?v=XwiiWrt3Ld8
Also, my husband recognized how lonely I was during the day when he was at work. We had been discussing getting a dog after we moved to the suburbs months back, and while I had 3 months off for my medical leave, and was incredibly lonely, this was a perfect time to do so. We got a puppy, which cheered me up SO much. He’s a golden retriever, and he’s the best. He’s a little bit of an older puppy (we got him at 5 months), so he was already potty trained, but I had time to train him behaviorally. It got me outside walking him during my time off (outdoors=theraputic), and I had a new purpose. Plus his unconditional love and happiness is so awesome. Dogs are so therapeutic. I know not everyone has the bandwidth to just get a puppy when they have chikungunya, but even just spending time with a friend’s pet can be extremely therapeutic. Our puppy rescued me, not the other way around!
I found that massage also helped. Not directly with joint pain, but was very therapeutic, helped my mood, and did actually ease off my neck pain.
Finally, therapy-wise, spending time with family was important. Even if you don’t want to, go talk to your parents/siblings/spouses. Laugh, cry on their shoulder, do something fun. That’s what family is for.
- REST!!!Rest is by far the MOST IMPORTANT remedy in my opinion. Once the acute phase was over—10 days after symptoms started — I went back to work. I went back to my normal schedule, and couldn’t sustain it. I was too tired, depressed, and was in too much pain. I talked to my employer, who agreed to allow me to have 3 months of a medical leave (short term disability). During those three months I focused on sleeping at least 10 hrs every night, eating well, staying hydrated, moving, and doing a whole lot of nothing. I got really lonely during the day (hence the puppy), and my pride also took a hit no longer being a productive member of society. However, after the leave was over, I can now say, being back at work, that I feel lightyears better than I did before my leave. I’ll later discuss further how much better the chronic phase is than the sub acute phase, but overall, a lot of my joint pain has subsided/only hurts sometimes, and my depression has lifted. Some of the joint pain I have accepted as potentially being permanent, but I’m OK with that at this point. I’m no longer “disabled”, and I personally believe that this is because of rest, and also a combination of all of the other remedies I tried.
Overall, I’d say that of the three phases of this illness, the sub-acute phases is the hardest. The initial 10 days (the acute phase) are tough in that the symptoms are the most debilitating, but my spirit wasn’t affected at that point. I took each day as a step closer to feeling better in that initial phase. Once my pain plateaued, however, and my depression kicked in, the sub-acute phase destroyed my spirit. It’s so long that you lose hope. For those of you out there reading this in the sub-acute phase, once again, I promise that it will get better. Be sure to stay positive, get help if you think you need it, and REST!!