Welcome Fern!

Welcome Fern,

First of all having a support system and educating those closest to you is very important. It took awhile for my husband and my family to understand my bad days because I looked normal to everyone. Now my husband is so supportive and is such a help to me. I'm also in my sixties and have decided to go back to school part time which gives a reason to keep moving. You must learn to balance your life and listen to your body when it says rest. I am on Plaquenil and have had no side effects, it helps somewhat with the tiredness. I have neuropathy due to the Sjogrens and at this time have not wanted to go on stronger drugs due to the side effects. I also have a strong faith and spend time in quiet meditation which keeps me centered. My prayers go out to you, with support and keeping centered on things that you love you will get through !


Thanks for your thoughts, Phoebe. I wonder how you and other members ever felt scared, when you were first diagnosed. I too have a good support system, but there are times when I am lying in bed, so fatigued I cannot move, that I feel really alone and really afraid. I would welcome peoples' thoughts about how they cope with all the dark feelings that come, no matter how hard I try to maintain a positive outlook. Any strategies? Words of advice? Gratefully, Fern

Hi Fern

welcome,,, Fern to you I am glad that your husband is supportive to you,, going back to school good on you,,, Just because someone has a diagnosis of SS it does not mean the end of anything,,,,I went and got a degree and I had been diagnosed with SS for 8 years then,, Although I do not work now I would love to do some part time work later,, Learning to listen to your body is the key,,, I do not take any medication at all,,except for one pill to sleep at night,,, I do not believe in the long run of taking medication,, is not the right answer for me,,,as it brings much more side effects,, I try things that are natural, and also control it by a natural diet , I have been diagnosed with SS now for 21 years,,,, and have done many things in that time,, You will be up and down in mood due to your circumstances I always believe take things a day at time do not think about tomorrow as it is a sleep away and you will be there soon enough,, learn to accept things the way they are,,, accepting you for you,, what you can do and not constanting thinking about what you can"t do,, I have worked in mental health for 11 years and just in the last 2 years had to leave work,, most depression, light or medium is caused by unspoken words,, of past events in ones life , or people want to change their situation past or present but cannot , but clinical depression where you have suicidal thoughts you should be on medication for a while,,,This is what I do,,,, live in the moment,,, deal with the past if you have issues from it,,, keep thinking about positive things,,, the blessing we already have,, and if I feel down I think there is always someone worse off than me,, I also nearly died last year due to complications of phumonia and asthma so I am just grateful for everyday that I have ,,, rest and stay in bed,,, if you have to,,, listen to your body, I treat myself with kindness and respect,, and I treat others with kindness and respect , this is what has worked for me ,,,,,

I also have neuropathy. My podiatrist put me on a prescription med (which is mainly a vitamin supplement called Metanx (generic called Foltanx RF) which has made quite an improvement. The neuropathy has not gone away completely but it is much improved. It works for me.