Tuesday, September 22, 2015

Something is Fishy

Image found here. 

I hate it when my taste buds go ga-ga. Do yours ever get seriously weirdo? It seems as though when I'm at the bottom of the energy barrel, which is where I am over the last few days, my sense of taste goes either missing or out of whack.

For example.

I was crunching a few potato chips yesterday. And they tasted like sardines.


That was new. And seriously strange. Most often when my sense of taste just doesn't seem right, everything has a bitter aftertaste. But like sardines?

The Sjogren's Syndrome Foundation addressed sense of taste in one of it's Tip Tuesdays, found on the SSF Facebook page, here. While I found the tip useful in that it validated my experience, the numerous comments that followed were even more interesting.
Tip Tuesday: A diminished sense of taste may occur with Sjögren’s because of the lack of saliva. While there is no specific treatment for taste disorders found in Sjögren’s, using liquids to wet the food in your mouth may help increase the taste. 
We encourage you to share this tip on your page and comment below about your own experience(s) with this tip. Continue reading comments here
Readers shared their experiences which included tasting dirty wet shoes, salt, strongly sweet, and many other unusual sensations.

Do your tastebuds ever go crazy?


Marion said...

Sometimes food tastes extremely salty or overly spicy. I'm more likely though to get phantom smells. Cigarette smoke, burnt toast or plastic burning. Weird.

Nicole said...

Sometimes I smell mold on my food when it isn't there.

Anonymous said...

Just found out I have Sjogrens. Bit of a shock - I'd never heard of it. I'm a 32 year old female. They put me on Hydroxychloroquine but it made my platelets plummet and I've just gotten out of hospital after several days of immunoglobulin drips to increase my platelets and a bone marrow biopsy which confirmed my marrow and blood production is fine - it was just the Hydroxychloroquine and my immune system that was killing off my platelets. 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 - having Sjogrens? You can still have a good, long, fun life? The more I Google it the more frightening it seems.
Are there any groups I should join?

AnnaDe said...

A few years ago I developed burning mouth syndrome, also called burning tongue syndrome. At its worst leaves me with what feels like a scalded tongue and affects both my taste buds and sense of smell. Comes and goes. Some good info about it here, even mentioning Sjogren's as a possible cause: http://www.nidcr.nih.gov/oralhealth/Topics/Burning/BurningMouthSyndrome.htm

Unknown said...

Five years ago I had a horrible taste in my mouth all the time - like burnt leftover coffee. It had been going on for months. My tongue was red and cracked. No one here in Portland had any idea. I went to the annual SSF meeting in San Francisco. I kept sticking out my tonue to various people - especially those in the dental field. I had erythematous candidiasis. Like thrush without the patchy white blobs. And frankly hurts a heck of a lot more. It took three weeks of fluconazole 150 mg daily to clear it. Wow - what a relief. I still use it twice a week as I have been on steroids for 14 years. When I skip it the tongue gets worse. Seems most hygienists and dentists here are not really informed about Sjogren's.

Kate Stout said...

Anonymous - two excellent resources are the Sjogren's Foundation, http://sjogrens.org, and a very knowledgeable and friendly support group called Sjogren's World at http://sjogrensworld.org.

Everyone's path varies. Some people have "just" dry eyes and mouth, some have occasional fatigue, and some have a large number of troubling symptoms. There's no way to know what your path will be, and after the initial shock is over, you'll find a way to deal with whatever your particular details are.

Best wishes!

LM said...

Anonymous -- I've been down that platelet 'road'. Mine wasn't caused by the plaquenil, but by the Sjogren's itself. Some people have a mild set of symptoms and issues, some of us have more serious problems. I was diagnosed 4 years ago and things progress further each year for me. Educate yourself because you are your best advocate. I've learned to buck the doctors on things I don't agree with. They get over it or I find new ones who will take my two cents into consideration. I am one who is still having a hard time adjusting and I was diagnosed 3 1/2 years ago. Things are ever-changing for me. I TRY not to dwell and allow it to take over my life, however I've found that by not reading as much as I can I've missed things and failed to learn what I should have. The issues I encountered this year taught me that I must educate myself as fully as possible. For me, it has been substantially life altering. However, I've been humbled and I am far more grateful for the good things in my life. I also realize the small stuff isn't nearly as important as I thought it was. Wishing you the best as you begin your journey!

LM said...

Sardine chips! What a combo. :)
I've also have taste issues, also usually when I'm not feeling so well. I taste a lot of metallic type things (especially in tomato based foods) or food tastes overly salty to me. Then, of course, there is the "this tastes like cardboard and it is scraping off the inside of my throat effect".

I can't tell you how many times I've baked something and had to ask my family if it is too dry or I over-baked it. I made some zucchini bread not too long ago and it was nice and moist. I thought to myself, "If this tastes moist to me, I wonder if it tastes soggy to them?" haha! I love to cook and have always been told I'm pretty good at it, but sometimes when I taste things I question myself.