Hi. I was just diagnosed with SS about 2 weeks ago. Actually, I was just relieved to know that I’m not going crazy. I’m so happy to see my hometown on here, as I am very homesick. I look forward to learning how to cope with my exhaustion, and my body aches and pains. I don’t feel like myself at all anymore and I don’t know how to deal with any of this. Thank you for listening to me.
I’m sorry you have to be here in the first place, but I am glad you connected with us. Your diagnosis must be such a relief. This is a private message between yourself and moderator support, but I would be happy to move your post to the discussion page so the rest of the community can see it. I’m sure they have a ton of advice about dealing with exhaustion and pain (and getting help).
Let me know if you would like me to move your post. Hope you’re having a pain free day
Meli, Seenie and TJ
Hi! You are so right. I am happy to have a name for this condition. I thought I was going crazy for a while. The pain and the fatigue is unbearable. Yesterday I slept until 3:00. I got up, but just relocated to the couch.
Ian really looking forward to hear some advice, or what has helped other people. Please feel free to move my msg to public. I feel so blessed to have found this group.
Welcome to the group. I know how hard it is to get past those symptoms. If it helps any, mine ebbs and flows. It helps to know that a flair up is just that, and it will pass. Also, now that my med regimen is stable and I have a clearer idea of what triggers me, etc the flair ups don’t happen as badly. Please feel free to talk about any of it. Its what we are here for.
I asked my doctor that because I have secondary Sjogren’s if that meant that there was a primary autoimmune disease and he said yes. I have been tested and tested and tested and we can’t figure out what it is. Do you have any suggestions on how to find out what your primary autoimmune disorder is?
Hi Lanahana1! My understanding is that primary vs. secondary doesn’t really make a difference. I’m curious why your doctor is saying that you have secondary Sjogren’s anyway. The treatment should be the same regardless.
See if this helps you out any - http://info.sjogrens.org/conquering-sjogrens/bid/359061/Ask-the-SSF-Staff-Treating-Primary-vs-Secondary-Sj-gren-s
Hello. Yes, plz transfer my post to an open site. I would love to hear from other people and get their advice.
Hi Stoney, my Dr. Firsttried me on Minocycline. I didn’t really notice much of a change on that medication, so he switched me to something called Sulfasalazine 500 mg twice a day. I’ve been taking it for about 2 weeks and I haven’t really noticed a difference yet. I’m just so exhausted all the time and that all I want to do is sleep and the cane throughout my whole body is just overwhelming. I asked him about Prednisone and he said he didn’t want to try that yet. I had somebody else tell me that maybe I should go on estrogen and progesterone oh, any thoughts on that?
The disease modifying meds can take time to start working. Prednisone isn’t a good option for long term.
As to the hormones. . . why? What was the logic?
Done! We’re now on the New Member Check In that all everyone can see.
I don’t know. I’m 54 and I thought maybe HRT would give me some energy. I talked to my family dr and she is against hormone therapy. She did say that she would put in a recommendation for me to see a gynecologist and to talk to her about it. Do you not think that it would make any difference in my symptoms?
Note from Seenie: I changed “hurt” to HRT … that’s what you meant, right?