Scared

[Cindy]

Every time Sjogrens progresses I get scare but I dont think I have been this scared before.

My mouth dryness went from Ok to really bad in like 3 weeks. I honestly dont know how to cope with this.

Knowing that is actually progressing its frustrating. Im scared for my family future.

I used to consider my self stable and just cope with the symptoms I had,

How do you cope with the disease progressing, knowing that you will get worst....

 

[Navigator]

Hi

Sorry to hear you are feeling so down.   Did something change in your medications?   When things get worse for me they do not necessarily stay that way forever...SJS can flare up and then tamp down.

I try to remind myself of the good things in my life no matter how small to help coping with what has been lost by having a chronic disease.  This may work for you. 

[Joe S.]

Water: Sip, Swish, Spit or Swallow. This is what I use. The personal mister by my chair helps get me through the night. I am sorry that your symptoms got worse.

Recent pre-op oral surgeon suggested that I did not have dry mouth after watching me do this routine three times.

[SjoGirl]

Cindy, deep breaths. It may not be a long-term change, rather a short-term issue based on some change in your life whether that be added stress, a diet change, etc.

As for how you cope, that is personal. I found that after I got over the initial fear that you have expressed and I lived with the disease for years I came to just live with it and manage it. I have very good times and bad, e.g., I'm in a terrible flare right now. On balance over about 8 years I've had about half as many good days as bad and more good days in recent years now that I found great doctors.

It may help you to know that according to the Sjogren's Foundation (which is a very helpful resources) that in the majority of people SjS progresses very slowly. People with SjS are more likely to die from something other than the disease than they are from SJS.

This group is also a very safe and helpful place to vent and ask questions. Knowledge is power so read and rely on the people here who have lived with this disease, we are here for you.

[jazzlover]

I agree .. Did anything change? Meds, foods, anything?

Mine has not progressed very much in the past 10 years. I'm very grateful for that.

I will say that finding out I am sensitive to salicylates really helped. Now that I eat low sals, I have less eye pain and they are not as dry.

[WhatYouSjo]

Have you had any stressful events in your life of late? Stress is the enemy for autoimmune patients; many of us have experienced initial symptoms or an increase in symptoms during a particularly stressful moment in our lives. It creates a vicious circle, with new symptoms causing increased stress, which leads to symptom flares, which continues into a downwards spiral.

Relaxation and meditation techniques help many of us to deal with the stress. More and more clinical offices are now offering counseling services for patients with chronic illnesses; these are increasingly being covered by insurance. Finally, I like to focus on the myriad of new treatments working their way (slowly) through clinical trials. I myself have seen my health improve since my diagnosis due to my treatment regimen, which includes alternative therapies and lifestyle changes such as diet. I hold onto hope that one day in the not-too-distant future a treatment will come along which acts as a functional cure.

[Cindy]

Thank you for your comments! It means a lot to have somebody that understands what I'm going through. My family is not understanding. My stress level has been the same. I already did a prednisone round but it's not helping. Will see how I feel in the upcoming days.

[Maria3667]

If anything, Prednisone makes me feel like a mental case. Not the stuff I need beside the mountain of other debilitating symptoms. My family isn't understanding either; they think I'm being a whimp... So I just battle in silence and try any cure or supplement out there. Dryness took a turn for the worse when I hit menopause.

Against oral dryness I find 2 things are most beneficial. Low dose dhea (2.5 mg intravaginal capsule) and/or low dose pregnenolone (just 1 or 2 mg cream).