Can't taste or smell anything!

[Joy]

I have an apt with an ENT consultant next week as I cannot taste or smell anything. As parotid glands are both swollen is all this connected to Sjogrens?

I had to ask my GP for referral as my Rheumy didn't send me!

Any help/advice gratefully received.
Thank you.

[Joe S.]

It sounds like it Joy. I do not remember if I sent you my welcome message so I am sending it again.

While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogrens: Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read Spoon Theory on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Do not Panic: Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book Feeling Good by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe: For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate: Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think I am as you breathe out, think calm. Repeat as needed. Meditation can be as good as sleep.

With Sjogrens we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.

Sip-Swish-Swallow are the three Ss of Sjogrens.

[THE BRIT]

  You did do it right.  If you look on page 4 you will see acer 455 with the title Need advice and that looks into that too.  With being in the UK the hospitals mentioned aren't for you, but I am sure one of the UK people on the site will be able to help you.

[acer 455]

    Hi Joy sorry for your probelms as it seems like it doesnt get better!  I lost my smell and  taste four months ago and im miserable !  I have also dry mouth eyes ears skin !  I still have some saliva but not a lot. I been to lots of docs but not many know about this diease. I found a rrhummy who suppose to deal with this but hes sloooow to give meds. My whole  life is messed up from this! 

[acer 455]

    Hi Joy sorry for your probelms as it seems like it doesnt get better!  I lost my smell and  taste four months ago and im miserable !  I have also dry mouth eyes ears skin !  I still have some saliva but not a lot. I been to lots of docs but not many know about this diease. I found a rrhummy who suppose to deal with this but hes sloooow to give meds. My whole  life is messed up from this! 

[acer 455]

      Joy  just wanted to know what other symptoms you have?

[quietdynamics]

I have reduced taste as well, still always feel like my tongue has been burned after a hot beverage, and I am careful when using seasoning when I cook so I do not over season. I have been playing with spices.  I haven't eaten hot foods in years, preferring to wait for them to be room temp, even coffee.



My sense of smell is heightened, however I do have neuro issues.. so that is probably  the smell connection, as well as sensitivity to sound.

search: smell taste sjogrens
http://www.arthritisinsight.com/forum/forum_posts.asp?TID=23903

[gurs]

This is quite common...learning to love playing around with spices etc. My rheumy has SS and says the same thing. We both love our
mustards..dont think we can do a whole lot about this. I know hormone issues can cause this, especially menopause.

Gursie

[Joy]

Hi Acer, thank you for your responses, I am so sorry to hear of your problems with dryness. I can honestly say that I have not got such severe symptoms as you and my heart goes out to you. The only reason that my Rheumy wanted to do a lip biopsy is because we have looked at a lot of things to pin down what the problem is.
My other symptoms are swollen parotid glands, bilaterally. Getting some pain in them and now have a rash at the bottom of my neck, both sides, weird. Body feels like I have been kicked around the room, especially in the evening and the morning, sometimes I wake from this in the night. My hands feel like they have swollen in the night and can get joint pain in them and I'm tired. My eyes were very itchy, red and sore, but that has subsided now, which is great. Not sure if symptoms will come back as the more I read on this site the more I get a bit concerned that it might.
My RF factor is 153 and have had high results on my RO and LA antibodies, think that's what you call them. My loss of smell and taste has been about a year I guess, give or take, but it's now starting to get to me. I don't have bad tastes from food, just no taste! My tongue can detect if something is hot, heat wise or spicy, but no taste. Weird isn't it. We all seem to be so different on this site.

Quietdynamics - thanks for the link, I will check this out.

A lot of people seem to say that if you have one AI problem, you will probably get another? Really.... urgh!

I don't wish anyone the above problems, but it's sure great to have others that can relate to these horrible issues. I too have found that not many people have heard about Sjogrens.

Take care everyone and thank you for your replies. x

[Deegee]

Joy:  I have been experiencing the same troubling issues.  I have swollen parotid glands, which just recently became infected and needed to be treated with an antibiotic.  I have also lost most of my sense of taste, and cannot eat foods with spices because it burns my mouth.  Most troubling is the loss of my sense of smell, i cannot tell if food has gone bad, if there is smoke or a gas leak in a room.  I have an appt with a Taste and Smell Clinic, I hope that these senses will return.  Thanks for posting.  I thought it was just me.

[Joy]

Hi Deegee, nope, you are certainly not alone my dear. My husband gets frustrated because I don't smell the dustbin, trash to our American friends, when it needs emptying! Can't smell gone off food either, need to ask hubby if I have put conditioner on the clothes if I can't remember, the list goes on and on. I have to laugh sometimes, but it's very frustrating at the same time. As I have mentioned previously about both parotid glands being swollen and the rash that looks so pretty, not, at the bottom of both sides of my neck, I am a real treasure right now. I am however, very grateful for every blessing that I do have, I should not complain. Will be asking about Glandular fever in another topic as my daughter is going to be tested for it and I want to know if this could affect me!!! Reading this back, that sounds selfish, sorry.

Thank you for replying.

[Daisy1234]

Hi Joy:

I have severe Sjogren's and pretty well lost my sense of smell completely and with that barely had any sense of taste for about 17 years.  In my case, I couldn't really find anything that improved that condition and I did see an ENT as well as my other specialists. 

I don't know if this would be the same case for you, but, I was put on some high doses of prednisone last year for a long while and surprise, surprise, one of the very good things that happened as a result were that my sense of smell and taste returned in full!!!

I recall eating my first "real meal" after my sense of taste came back and marvelling about how tasty each crumb was lol.  All of a sudden, I also started noticing that a number of women were wearing strong perfume, and the flowers in my garden were extremely fragrant when I had no clue before. 

In retrospect, the inflammatory aspect of Sjogren's in my sinus and taste buds must have been addressed to some respect by the prednisone so that really was an unexpected surprise.  As I am not a physician, I wouldn't know if this would be a common response to prednisone, or I just happened to get lucky.  I was taking some large doses before things changed however.

Not having a sense of smell can be a big deal and I wish that everyone could keep their sense of smell and taste, and not just so they could enjoy a nice tasty meal.  It was a concern of mine that one day I might be home alone and there might be a gas leak and I wouldn't be able to smell a thing.

Daisy

[jazzlover]

I hate to be the bearer of bad news, but this can be neurological. My father lost his sense of taste and smell. He had Parkinson's.

[Joy]

Hi Daisy

I am so pleased that you regained your sense of taste and smell, 17 years must have been awful for you. I do hope that you still have the ability to savour every meal and enjoy the flowers with their aroma in your garden.

I would love to say that because I can't taste I was a lovely size 8 or something, but alas no, I seem to eat lots because I stupidly think that if I eat enough of something like chocolate for example, I will EVENTUALLY get some kind of taste, but no. Will I ever learn?!!!

Is prednisone a steroid? I think it is and it's what I took when I was in hospital with pneumonia earlier this year. I no longer take it.

Jazzlover - Would my ENT specialist be able to tell me if it's neurological?, if so will this take lots of tests or could he tell me at my first apt? I have waited so long for all these apts to come I kinda want to know like yesterday.

[Daisy1234]

Yes Joy, prednisone is a very strong steriod and not to be taken lightly.  There is a number of wonderful things it can do for a person with autoimmune issues, but at the same time, there are very strong side-effects which must be taken into account.

Also, I would second what Jazzlover said, about the possibility that losing your sense of smell can be linked to neurological issues and your ENT may end up referring you to one depending on what your appointment exam reveals.  Sometimes people can even get strange recurring smells like things burning when nothing is burning.  That can implicate Neurological involvement which can be part of Sjogren's.  I do have neurological issues in my case, but please don't be concerned at this point, because neurological involvement isn't the norm for everyone with Sjogren's. 

Your ENT should be able to rule out some things or rule in some things during your appointment but further testing might be required.

Please do let us know how things go and I wish you the best of luck in getting this resolved as soon as possible.

Hugs,
Daisy