Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 05-09-02 21:35
Sun Can Cause Sarc Relapses
This has been a year of challenges. I was diagnosed with sarcoidosis, and then two months later, my mother had a stroke, followed by open-heart surgery. After working three months on repairs and handicap adaptations to their house, I finally had my parents in their house again. I was looking forward to a vacation. My husband and I wanted to get away from work and stress to celebrate my health improvements, how well we had held up to working with my parents, and the completion of the projects. Unfortunately, when the vacation arrived, I was so sick, I didn't feel like traveling. The first sign of trouble had been a “tight feeling” in my throat. Eventually I had trouble swallowing food. My swollen abdomen was so uncomfortable; I didn’t have an appetite, anyway.
That was how it started. Slowly, over about three days, my symptoms turned into a full-blown episode of headache, nausea, blurred vision, body aches, abdominal, muscle and joint pain, chest tightness, dry mouth, irregular heart beat, constipation and coughing. Once the pain began easing, I needed several days of rest before I began to feel human again, so I stayed mostly indoors.
I try to wear protective clothing (long sleeves, long pants, hat, gloves and sunglasses) if I know I will be in the sun. I have known for some time that I had a sensitivity to the sun. I certainly didn’t think, however, that sunlight could actually provoke an episode of fatigue, pain and suffering – until I began to pay closer attention. This is a description of what it took for me to understand how sunlight affects sarc symptoms. Please understand that I am not describing enough sun exposure to get a sunburn. I am talking about a few minutes in the sun with each exposure.
About ten days after the first flare-up of my sarc symptoms, I felt well enough to check in on my parents and their garden. Clouds were rolling across the sky, blocking visibility of the afternoon sun. With no sun, I wasn’t worried that I wasn’t wearing my sunglasses. I was dressed in denim jeans, a long-sleeved shirt over a short-sleeved, and a baseball cap instead of the full-brimmed hat I usually wear. I stayed only long enough to survey how things were growing and make suggestions. The next morning, I checked on my own garden. Once again, I skipped the hat and sunglasses, planning to be outside only a few minutes. I may have become distracted, because my son came by and we chatted. He was only here a few minutes. That afternoon, I went outside to accept a package. The pain must have showed in my face, because my guest asked if I was okay. I made two quick observations:
1) I was standing directly in the afternoon sun without a hat, sunglasses or long sleeves, and
2) I already had a throbbing headache.
I knew I was in trouble. I hadn’t noticed any warning (like tightness in the throat) this time. I walked in the house feeling weak and shaky. My abdomen was swollen and uncomfortable. I could sense this headache was going to be a bad one. I began having trouble talking. My brain would stop me in mid-sentence, while it continued searching for a forgotten word. I was drowsy. That night I was tired, but I found it hard to sleep because of pain all over my body.
Arising the next morning, I immediately realized my headache was intensifying. My neck, shoulder and upper back felt like a giant bird of pain had snatched me in its claws and was carrying me, suspended by my neck and shoulder. My spleen felt like it was expanding. The girth of my upper abdomen was tender and my lower abdomen hurt, too. By evening, the pain in my back was worse. The talons of pain had sunk deep into the base of my skull. I felt the effects up the back of my head, down to my mid-back and across my right shoulder. While it seemed everything in my body had joined this orchestration of pain, my heart was out of sync. It raced and skipped to find its place. This odd heart rhythm wasn’t painful, only a little disconcerting.
The body pain was more intense on one side. My right arm and leg felt like fire was consuming and expanding them from the inside. They felt ready to explode. I lay in bed in pain, glancing down, expecting to see my limbs approximately the size of the “Michelin man.” I knew my limbs were swelling, but my eyes could see that they were not. I continued to check for swelling limbs, and I was disturbed each time my eyes didn’t see it. I described my swelling limbs to my husband, asking if he saw the "Michelin effect." His reassurance that there was probably a “little difference” in the size of my legs - but not the Michelin effect - only troubled me more. I was annoyed that he didn't see my swollen limbs and was trying to reassure me. I was angry and confused that my own senses seemed unreliable, but I was more sure of what I could feel (swollen limbs) than what I could see (no swollen limbs). I think this neurological symptom is called psychosis.
The same burning, swelling pain was in my lower abdomen. That made sense, because I could see that my clothing was tight around my waist. I tried to remain still, to combat the nausea and headache pain. I awakened a couple of times during the night because the inside of my lips and mouth were so dry they stuck to my teeth and gums. I got up to drink water and urinate several times. I placed my hand on my torso and noticed heat waves like you can feel from a burning light bulb.
The next day my headache was beginning to decrease. The muscle/joint pain went from my head down to my right ankle and heel, and I could walk only slowly. My right hip had burning pain in the joint and muscles. I limped when I arose from sitting. After another day, the pain in my arm and leg was decreasing. I still had the burning fullness in my lower abdomen, and I wondered how I would get rid of the pain below my waist, across my back. I was frustrated doing simple tasks. I would loose track of what I was doing and forget where I placed things. Sometimes it felt like my mind was “floating away.” I drank a lot of water. I hadn’t realized I was constipated, but each time I eliminated waste, I felt a little better.
Strangely, as I began to feel better, hopelessness engulfed me. I tried to reassure myself that it is normal to have such feelings after an episode of debilitating pain. It seemed like the last thread holding me together was close to a breaking point. I was startled by everyday sounds, such as the telephone ringing. I got my feelings hurt talking to a friend on the phone. With my perception, thinking and memory so unreliable, I was full of self-doubt and frustration.
Reflecting on this experience, I still feel a bit bewildered. It had taken two or three days for the pain to build to a crescendo. It was about a week before I began to feel as I usually do, but I had lingering muscle pain and a cough. The final part of normalizing was regaining my sense of well-being and waiting for the hip pain to subside so I didn’t limp.
I have had these episodes before. The time lag between cause-and-effect, the number and intensity of symptoms, and my difficulty in thinking clearly, are all reasons I couldn't correlate the episodes to sunlight exposure – until now. I didn’t want to believe it! I LIKE the sunshine! I didn’t want to sacrifice any more of my life to sarcoidosis. Now, however, I realize that admitting and understanding this cause-and-effect means I can have more control of my life, not less. I may be able to avoid losing another week due to pain, because I can avoid the trigger: exposure to skylight! I may be able to understand what makes my symptoms worse and why they get better!
I suggest to anyone having symptoms similar to mine that you pay attention to sunlight exposure (how long, time of day, cloud cover, amount of shade, clothing protection, reflecting objects nearby, etc.) If you have an episode of symptoms, think about your exposure to daylight during the previous three days. Maybe you are like me, and you didn’t notice. You may not be able to decide about sunlight until you stop all exposure for several days, allow some sunlight exposure, and then evaluate your symptoms for the next three days.
I’m sure I don't understand everything yet. There may be other symptoms I haven’t recognized. I have changed my thinking, though. I used to think that the daily work commute was killing me from freeway air pollution and my own fatigue/exhaustion. Now I think the sunlight streaming through my windshield was probably making me sick! I am seeing possibilities for myself that I haven’t considered since my diagnosis. Maybe when my next vacation arrives, I will be able to enjoy the time set aside for fun and relaxation.
Belinda
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Don't overlook, however, how easy it is to provoke flares of symptoms from too much light when you have active sarcoidosis. I found it best to wear protective shades year-round. Summer sun can really surprise you, so it is best to wear the shades. The best shades I've found are from 