Wednesday, December 21, 2011

We Need The Words...

You can buy your very own thesaurus t-shirt here. 

Yesterday, I received this letter from a reader:

I just did a search for a link between Sjogren's and sweating which led me thank you. I was diagnosed about 5 years ago with primary SS and am also having major problems with sweating (hot and cold)but it makes my skin feel very strange - almost as if I am covered with a layer of plasticene and my skin can't breathe through it. It makes me feel so ill I can't do anything at all. Sounds from your comments that it may be connected to SS. Thank you.

Reader, what an excellent description of the skin/sweat/Sjogren's connection. Anyone who has experienced it, knows just what you mean, myself included. I used to try to describe it as a slimy sensation, but then that's not exactly right either. Some of these very annoying and perplexing symptoms just defy description.

Do you have symptoms that are difficult to explain yet have somehow found a way to describe them?

And when you do, share your vocabulary with the rest of us!


SjogrensStyle said...

It's so difficult when we can't find a way to explain our symptoms. I don't have exactly this skin sensation but I definitely have periods of clamminess.

My very first symptom of Sjogren's was what I now know to be dyspnea ("air hunger"), but I couldn't explain it well to my doctor. My GP is amazing, but he still misdiagnosed me with asthma. It took another year (and two bouts of pleurisy along with one case of walking pneumonia) before we realized that I had some sort of AI issue.

Jenny P said...

SjogrensStyle - I never heard of that, I have to tell my mom (who has pulminary issues they don't seem to be able to treat well)!

Two of my symptoms I have found ways to describe (maybe not that creative, but it took a few tries) are PVCs and what I now know are a type of cluster headache. For PVCs, I describe it as someone thumping a mellon from inside my chest - not painful but very disconcerting and leaves me short of breathe. The headaches I described for years as "head strikes" - the pain would come on suddenly in a linear pattern on one side of my head or the other, and felt like someone had a balloon such as for balloon animals in my skull that was suddenly inflated. The pain would strike suddenly & was similar to being struck on the "head strikes" seemed to get the message across.

Blogger Mama said...

I am having an issue with "tender spot", which shoots pain into my hand when it's touched. It gives me the same zingy pain/uncomfortable feeling you get when you stick your tongue to the top of a 9V battery.

Connie said...

To this point the best way I can describe my lowered energy level is the story of the tortoise and the hare. I used to be the hare, multi-tasking, thinking on the fly, getting lots done go,go,go. Now I'm the tortoise, it takes me much longer to get things done, if they get done, I need longer to plan- last minute plans would throw me into a panic, and the feeling of not wanting to do things that need a great deal of energy in a short burst. The odd thing is that in the hare days, if I couldn't get everything on my list done I would be upset. In my tortoise days- OH well...