Tuesday, May 19, 2009

Summertime Sjogren's

Image by zenner

Here in the Pacific Northwest, we have been blessed with a few days of warm temperatures and glorious sunshine. I know that this delightful weather is just a tease - typically our winter rains hang around until June - but it is a good reminder for me that summertime brings challenges as well as good times. 

Early on in the summertime, my initial response is to rush headlong into the sunshine sans sunblock, wide brimmed hat, or common sense. And always, always, I regret my impulsive choices as I retreat indoors to deal with the inevitable discomforts that follow. 

Everyone who deals with autoimmune disease in some form has their own unique mix of symptoms, kind of like those bins of coffee in the grocery store. Some have caffeine, some have chocolate or cinnamon flavors added, some are whole bean, and some are ground. But all are coffee, as all of us have underlying autoimmune disease. 

My special blend of Sjogren's syndrome "coffee" symptoms include sensitivity to sunshine, as do those dealing with lupus, scleroderma, and rheumatoid arthritis, among others. This sensitivity for me manifests as a painful red rash. Others may also experience a flare of their disease. Why? This very good article from the Arthritis Today online magazine describes the mechanism: 
..it turns out the sun’s dangers are more than skin deep. The sun’s rays – particularly deep-penetrating ultraviolet-A (UVA) rays – can damage the DNA within the nuclei of the body’s cells, inhibiting their ability to control how and when cells grow and divide....Problems can range from an immediate redness, burning and stinging of the skin to a systemic flare of the disease, characterized by inflammation of the joints, blood vessels and internal organs.
Sometimes the medications used in treatment of Sjogren's and other autoimmune disorders can also be the culprit in causing sun-related problems:
Several medications that people take for those and other inflammatory diseases, including rheumatoid arthritis (RA), can also cause sun sensitivity and lead to problems such as skin rash or rapid burning. Some of the most common culprits are nonsteroidal anti-inflammatory drugs (NSAIDs) and some disease-modifying antirheumatic drugs (DMARDs), including hydroxychloroquine (Plaquenil), methotrexate and sulfasalazine (Azulfidine). Tetracycline antibiotics, some antidepressants and diuretics can cause sun sensitivity too. 
Protect yourself from these UVA rays by using sunblock, wearing protective clothing, such as a hat with wide brim, and light-colored long sleeve blouses, and carefully monitoring the amount of time spent outdoors. 

"But Julia," you may ask. "What about the enormous benefits that you get from the sunshine vitamin - D?" Good question. There's no doubt that vitamin D is beneficial in several ways. I get my D from a supplement. You can read my previous post about vitamin D, it's benefits, and suggested supplement amounts here

Another summertime related symptom that is problematic for me is in dealing with the rise in temperatures that come with the summer season. Our bodies regulate our internal body temperatures with a complex homeostasis mechanism:

image found here

When my body reacts to warm outdoor temperatures, I feel nauseous and generally unwell, which could indicate problems with the autonomic nervous system sometimes experienced by those with autoimmune disease. Careful attention to symptoms and length of time in warm temperatures as may be found in hot tubs and direct hot sunlight may head off these symptoms. When the symptoms do present themselves, it is helpful to reduce body temperature by heading indoors or into the shade to cooler air temperatures, drinking cool liquids, using a fan, or if all else fails, a cool shower or bath. Plunging oneself into a frigid tub or any other source of ice-cold water will only make the body try to heat itself even more by promoting a shiver response. Gradual decrease in body temperature is the safest and most effective response. 

Rarely, symptoms are extreme, such as a rapid heartbeat, the absence of sweating, and a change in consciousness levels. These symptoms may indicate that heat stroke may be present, which requires emergency response.

For some, increasing the time spent outdoors can also result in increased tear evaporation. Wearing protective eyewear helps, as does increasing the use of preservative-free eye drops. You may also need to increase the use of skin moisturizers to keep dry skin under control. 

If reading the above makes you want to hibernate inside an air conditioned cocoon for the summer, don't despair! Using common sense, sun protection, a keen awareness of your body's symptoms, and a tall glass of something cool and tasty will keep all you Sjogren's summertime babes rockin' all summer long. 

Bring on the slush


Denise @ Sunflowers, Chocolate and Little Boys said...

You write such informative posts about Sjogrens. Thank you!!

Lisa Wheeler Milton said...

Here's the irony: My special brew responds WELL to warm weather. My raynaud's gets better and I have more energy as long as I stay hydrated.

I went on a balmy island vacation last summer and fretted that the humidity would do me in.

I was amazed that all the MOISTURE made me feel great - sticky - but great.

Best I had felt in years...

I hope you enjoy the sunny days ahead, because you are right: we have to enjoy them while we can.

Unknown said...

Julia, I love your blog, feel free to post anytime on my site. The heat is a big factor for Jenna and I and your described everything perfect. Thank You Jonnell

Anonymous said...

You are describing me to a tee. Or...maybe TEA. So my brew is tea instead of coffee.

Anonymous said...

Un saluto dall'Italia.

Daniela (con sindrome di Sjogren).

Cindyjolinn said...

I can relate to the overheating. If I am in a room that gets to warm I get nauseated.
What is interesting is my body really reacts to the cold! Air conditioning can be my demise. I start experiencing pain in my arms , neck and hands. I become lethargic and muddle minded (more than usual). I have learned to always have a scarf and layer clothing even here in Arizona. Living in the Pacific NW would be my end...anyone have similar experience with cold

Anonymous said...

Dx sjogrens syndrome
i wondered if the way I was feeling might be resultant of extreme heat and humidity on the east coast.
spending a lot of time outside lately, soaking up vitamin D, as I have a severe deficiency; but, on monday, down for the count: tired, painful body, achy and shivering. thank you for sharing this info, it all makes sense now. and i will limit time in the sun, drink water like it is going out of style... hoping to avoid this feeling of "illness" during the best time of the yr at the nj shore!

Anonymous said...

Just found out I have Sjogrens. Bit of a shock! They put me on Hydroxychloroquine but it made my platelets plummet and I've just got out of hospital after several days of immunoglobulin drips and a bone marrow biopsy. Now we have to work out a better medication to treat Sjogrens without losing platelets. My questions are a) Does anyone else with Sjogrens have associated ITP/platelet issues? And b) Generally do we all get by? I mean we might have day to day issues and flare ups occasionally but it's liveable right? You can still have a good, long, fun life?
Are there any groups I should join?

Kacy said...

Just dx'd yesterday after 4 months of intermittent red rashes (although the dr describes this as blood pooling under the skin: purpura), fatigue, and extremely painful joints and muscles. All seemingly out of nowhere. I am 46. I don't have the dry eyes but have been experienced dry mouth and mouth sores, and a persistent, dry cough. I've noticed the pupura (along with itching and heat) in my legs after a day of wearing leather boots, and a night of dancing or a long walk at the mall leaves me almost unable to walk the next day. I can't imagine being out in the hot sun this summer now. I'm now taking Paquenil so hopefully I'll have relief from the pain. I came across this blog by accidenta and will definitely be reading more! All information helps. :)