Another New Member, with a question

[m003270]

Hi Bob,

My name is Elizabeth.  I'm now 33 yrs old and was diagnosed summer of last year.  I have been on Plaquenil and have noticed a big improvement.  Knowing what I do now about the disease, I know that I've had it for many years.  My last half ironman was in the fall of 2005.  I started going down hill shortly after that.  I just attributed all the exhaustion and nerve, muscle and joint pain to my work schedule and over use.  But I just couldn't bring myself to exercise anything like I did to train for tri's.  So I didn't do another one until the summer of 2009 (when my son was 7 months).  It was all I could do to finish a sprint.  I was glad I did it, but extremely hard on myself for my terrible performance. 

Now that I feel a bit better I'm getting in to training again.  My week looks nothing like yours, as I have three kids to take care of, a full time job, and a dirty house to come home to.  I just don't have the energy to put in the time anymore.  I can't bring myself to get up early enough to work out before getting the kids up.  I still have bad fatigue, some nerve and muscle pain, arthritis in my ribs and collar bones, and bursitis in both my hips.

What I have found about exercise is that it exacerbates my flares.  I'm on the tail end of a flare, so I decided to run outside.  At the end of three miles, I felt terrible.  My nervous system is affected by Sjogren's.  I get that intense butterfly feeling in my extremeties, especially my arms, that won't go away.  And you know that feeling you get right when your hair is standing up on the back of your neck, or you're getting goose bumps?  I get that intense feeling all over, and it won't go away.  It happens whenever I run outside.  And that feeling stays for at least an hour after I get back inside.  I used to think it was a side effect of Evoxac (and it may be), but it's the UV light.  Like lupus sufferers, photosensitivity can trigger or increase a flare in several autoimmune diseases.  I work in an office building with fluorescent lights, and during my flares I can barely bring myself to work in there.  Being outside in the shade (or being in the dark) makes me feel better within minutes.

I have also found that, physically, exercise makes me more tired and therefore less able to forget about pain and discomfort.  Sometimes I know that I just shouldn't work out, and instead just make myself go for a walk. The biggest battle I still fighting is comparing my old abilities to my new abilities.  I still haven't accepted the fact that I will likely never run a half distance again.  And if I do I shouldn't even be bothered with the time it would take me to race.  I still find that I check my watch after every workout session, only to be disappointed that I'm so slow (compared to my former self).  I have two sprint races coming up next month and am seriously worried that I will spend most of the race walking.

So my comments to your problem with working out are: 1) It's possible that your outdoors workouts are really making you sick.  For days you're not feeling right, I would stay inside (away from fluorescent lights), or run and bike at dusk (with reflective clothes  ).  2) Stressing your body does make you feel worse.  I'm still working on changing my mindset that I can't do everything I used to; that even a little is better than nothing; and that some days it's better to go for a walk.

I wish you all the luck with your upcoming races (I'm jealous).  And I'm very glad you do have the energy to do what you are currently doing.  I would suggest that you look in to altering your workouts to take advantage of drills and other practices that increase the quality of your workout.  You may be able to cut some time/miles while still achieving your pace and distance goals.  And less sun exposure, and less stress on your body, may help lessen the negative aspects of your exercise routine.

Elizabeth