Newbie

[Simba0123]

 Hi, I'm new to this forum however I have had Sjogrens for 5 years that I knew of and probably 5 years before I was diaognosed. I am on plaquenel, pilocarpine, restasises, eleve, prednisone, diazepam to help sleep and oxycodone as needed. Recently after a stressful day at work about 5'weeks ago I had this huge whistling in my left ear that has not gone away 24/7 and no hearing in that ear. Has anyone experienced this before? Went and had hearing test, I lost 80 percent of hearing. Went with steroids orally and did not improve so had tube put in ear and now having injections of steroids in tube. I feel so alone. I have not been back to work. With the fatigue, extreme joint pain, arthritis in knee and now the ear issue. I am working with my rummy, pcp, audiologist to try to stay status quo but it is so hard. Thinking of disability now.

[Joe S.]

AI diseases like to bring their friends: Meneires (sp) disease?

While I am glad that you found us, I do not like it than 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.

Sjogren's – 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. Don't 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 Sjogren's 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 S's of Sjogrens.

[Simba0123]

Thank you for the information. It was informative and I had not thought of ss bringing their friends. That in itself is scary!

[Sleepy In Seattle]

I know how you feel! I have Lupus, Sjogren's, APS and Raynaud's....in April, I went suddenly deaf in my right ear. I went to the doc immediately, afraid it was a blood clot from the APS, but instead it was Autoimmune Inner Ear Disease. I was on high-dose prednisone for a month, which titrated down over the following 7 weeks as I ramped up to a maintenance dose of methotrexate.

SOMEtimes, methotrexate helps regain some hearing. Inn my case, I regained maybe 5-10%, but I am still severely-to-profoundly deaf in my right ear. I can hear things that are very loud and low-pitched, but then it drops off pretty sharply. High-pitched things like birdsong, etc I cannot hear at all. The main problem is that I do not have good speech recognition, even with lots of amplification. Everything sounds distorted, like somebody's talking to me through a tin can. I have a hearing aid now, but it only helps under certain conditions, and in noisy environments like a restaurant, a crowded party, etc it actually makes things worse. It really sucks....but apparently I just have to live with it.

My Rheumy did take it as an indication that my diseases were sort of ramping up, which is why I now take Mtx in addition to Plaquenil. I am lucky, as I have not really had any serious problems with either medication.

Losing an ear is so difficult, isn't it?! It's not like having an earplug in there - there's just no way to imagine it unless it happens to you. I can't say I really have come to terms with it or made any kind of peace....but I do sympathize with you. The way I try to look at it is that at least it's just an ear - the disease could have chosen to attack my lungs or my kidneys or even my brain - so I guess in a way I am grateful it was only my ear this time. And now hopefully being on the Mtx will prevent it from attacking anything else! You just never know.

Please know that at least you are not alone.

(((((hugs....)))))

[Simba0123]

It is a relief to know I am not alone and thank you so much for your words of encouragement!! It seems like out of the blue weird things happen to your body and nobody except the unfortunate one like us can understand.  My rummey says we have to treat the things that happen and be prepared for the next round. I hope u r well and having a great weekend!