This is a long reply to Terlin's previous short questions. Anyone with more advice, please jump in!
Hi Terlin. Do you have primary
Sjogren’s or is your Sjogren’s secondary to another autoimmune disease? I ask
this because, as far as I know, heat intolerance isn’t associated with Sjogren’s,
but I have terrible temperature problems from Lupus (my primary). Maybe someone
else has insight. I do know it’s very common in lupus.
An interesting thing that
happened to me when I became sick was shortness of breath (SOB) and
neurological problems. I saw a psychiatrist (and still see him regularly 10
years later) because I developed anxiety and depression. Mine was quite severe
and it took a while to find drugs that set my mind straight, but ultimately
some of my neurological problems and my shortness of breath were from anxiety.
Pushing my tongue against my teeth to the point of making the edges of my
tongue scalloped was also anxiety related.
Dry skin is the most common
skin problem in Sjogren’s. This includes scaling, redness, itching, and
cracking of the skin. To help this take short, lukewarm baths or showers (try
to avoid Hot water); use gentle bath bars (Dove, Basis, Cetaphil, Neutrogena
glycerin) or liquid cleansers (Cetaphil, Purpose, Olay). Trap moisture in the
skin immediately after bathing by applying a thin layer of Vaseline, bath oil
(RoBathol, Neutrogena) or even some cooking oils (safflower, canola, Crisco).
To repair the skin’s protective barrier function ceramides are used (Cera Ve,
Aveeno Eczema Care). Lastly, avoid fabric softeners and use detergents free
from dyes, fragrances, and preservatives; drink plenty of water; and use a
humidifier. Swimming is okay, just immediately shower afterwards and oil up.
As for sinuses, Sjogren’s
drying can cause crusting in the sinuses which leads to sinus infections. After
I required sinus surgery I learned lots from my ENT. I take Mucinex 600 mg
twice daily and sometimes saline sprays to loosen the snot and prescription
Nasonex twice daily to reduce the inflammation in my sinuses. I used to be addicted
to Afrin, but two docs said No Afrin and no antihistamines. It was really hard
to go from Afrin to Mucinex and Nasonex, but I did it! I rarely use Afrin now. I hope this helps! Love, Butterflake