Sticky Blood-Hughes Syndrome Support

Sun, Fatigue, Rash

It's just starting to get nice here in New Jersey. We have had a few days that have reached the 60's and 70's -- and hooray we won't be seeing snow again for at least five months.

The issue is that for many of us we have Raynaud's in our fingers and toes when it's cold outside and then when it gets hot the excruciating painful fatigue and also the rash can set in. There are at least two weeks in the autumn and spring where it's just the perfect temp for me. When I'm in that zone, I always presume that the good feeling and high energy will continue. But alas......

I was thrilled the other day to start sitting in the sun for 15 minutes a day and stop taking my Vitamin D3 supplements. All was going well until yesterday when I walked inside from my 15 minutes of sunning my legs, arms and face and I could feel the brutal fatigue growing as if the blood was being drained from my body. I had presumed over the winter that since I had gotten my blood serum Vitamin D into the normal range over the winter and I was no longer needing naps due to the excruciating fatigue (but still needing lay downs), that the excruciating fatigue was gone and in my past.

Wrong, the fatigue came on quickly and despite a laydown inside after the light sunning, when I went to take my daughter to the park for the town's tennis camp, the fatigue was so painful that I had to go back into my car and lay down instead of waiting on the bleachers with the other parents. Grrrrrrrrr. I miss a lot of social interaction because of fatigue. Brutal. I haven't had to lay down in my car in months, where I used to have to do it everyday. Hoping, fatigue doesn't come back today.

I realize the fatigue is multifaceted. Vitamin D3, iron, thyroid, sun, heat, now this gastroparesis nutrition issue ...... There are a dozen things that can set it off and trying to maintain the balance can be complex. It's just so nice when I have more energy and I can get rid of some of the "to do list" because the fatigue has gotten somewhat better only to see the fatigue creep back in.

So today I am left with deciding whether to try 15 minutes in the sun again or go back to vitamin D3 supplements. It's clouding up, so I might have to test it tomorrow. In the end, every summer I end up brutally fatigued with any sun/heat. I then end up going from air conditioned house to air conditioned car to air conditioning in order to have any energy. The summers of 95 degrees and high humidity can be brutal for us. Yet, I am always surprised when the fatigue gets worse with season changes. I guess the brain fog and forgetfulness keep the hope alive.

3 Replies

One theory for the seasonal, UV ray, and heat/cold issue is that we are severely impacted by the "heat shock protein". Here is a link to wikipedia on heat shock protein.

Under google scholar, there are many medical studies related to "heat shock protein" and APS, MS, and Lupus.

In the mean time, I'll continue to listen to my body and test the nice weather and go inside and nap when needed. :-)


I really hope you feel better soon, and it was a blip as you adjust to the outdoors etc. MaryF


I do Not tolerate temps much over 80F. I get weak, dizzy, exhausted -- and it happens quickly. I went to college in Nashville TN and summers there were Dreadful! I passed out an,d woke in the ER many times. Finally a dr. Told me to start salting my food. " Salt?!" I asked, "Salt?! You think that just a sorinkle or two of salt a day is going to cure this?"" But, ya' know? It did. And to this day at age 60 I have to remember to start salting my food again around this time of year. My tolerance for exercise in the heat is still bad, but much better.

Hope this helps. And make sure your BP is not elevated ( mine tends to be low.). And, of course, run this by your doc first. The vast majority ofAmericans eat too much salt -- not too little.


You may also like...