Sjogren's Syndrome Support Group

Hey, sorry, I haven't been writing and thanks, Sonni, for sending me a hug. I really needed it. I've been feeling really, well just awful, but I keep trying. So I just wasn't even able to stand sitting in front of the computer and writing.

Besides the SJ, it's the fibro and the arthritis, too. It just gets to me more than ever lately. Well, I am getting older, but I just didn't plan it this way...ha..ha..who does.

I've stepped up the tramadol, not really wanting to, but no other choice.

I have a question for you guys. Just at the start of my cheeks, under the eye section, I have these two --looks to me swollen spots and really, they've been there for years, but never ever this red nor swollen. Anybody have this? And my entire body feels really dry, but I really am trying not to wig out and just handle this. I called my rhummy and told him about this---ready----says doesn't sound like SJ to him. He's never heard of the entire body becoming dry. And he asked me why didn't I start the plaqunil? I said cause it has sulphur in it and I am allergic to sulphur. He says NO!!! Take it----hey guys---give me some feed back...What da ya think....

My throat is sorta sore too and my voice, to me, feels like it is getting lower or a bit hoarse, too. But is this in my head???? Cause as far as the doctor, I am just a shrinks dream (that's not what he said, but you can hear it in their voices) And, as the song goes, I am NOT CRAZY, I am JUST A LITTLE UNWELL(well maybe a lot, but I'll go with a little).

And one other thing, the strange feelings in my feet and like something is going up them is weird---anybody--doc says 'What?????" And, of course, the bone pain, that he acknowledges...

Just interested to know, if anybody at all has some of these things....

I'm back and happy summer to all...

Sandy =)

Hi Sandy, I'm sorry you haven't felt well lately, me neither, must be in the water, huh? My fibro's acting up too. Yuck, yuck, yuck.

Tramadol, me too. Like twice as much as the doc ordered, still not working. I've thought at times I was ready for morphine. Not quite yet, I guess.

I don't know about the eyes, could it be allergies? I know when my daughter's having a real bad allergy attack her eyes get real puffy, kind of like that. Are your eyes itchy or watery? I could be completely wrong, just kind of thinking.

The body being dry all over, dry skin all over is definitely a Sjogren's symptom. Put on a heavy duty lotion. So far my skin responds well to just the Vaseline Advanced Healing but they were talking about some other products in another thread just the other day. I can't remember what they were though. I'll try to find the thread in a minute.

My voice is almost always hoarse from the dry mouth. I have to constantly take drinks if I am talking. Like every couple of sentences I have to take a drink. My dry mouth goes all the way down my throat. Yes, that's a symptom of Sjogren's.

The way you were talking about something going up your feet it could be the buzzing, tingling feeling of the neuropathy that we get with both fibro and Sjogren's.

I read up a little on the plaquenil and on sulfa and I think it's ok to take it. There are different components in sulfa and only certain ones of them cause the allergic reactions. From what I could gather the plaquenil doesn't have it. If you get these things all filled at the same pharmacy, the red lights will go on if they know you're allergic to sulfa and you get something filled with sulfa in it. I think if I were you I'd ask my pharmacist. Since the dr. says it's ok, ask the pharmacist and if he/she says it's ok then I'd feel sure that it was.

I'm glad you're posting again. I hope you feel better soon. I'll try to find the name of that lotion they were talking about in a few minutes for you.

Hey, Rhonda, thanks for the input. Ya know, I think you are right on the money---I believe the puffiness is allergies cause even though I am dry, I can still feel like I'm having sinus or something else going on so it is definately agllergic.

And thanks for the advise on the plaquinal .

I'm hanging in...Oh, and I am going to Kmart right now to get the lotion. thanks lots..

Sandy =)

I finally found the thread I was telling you about. First my computer froze up...twice. Then I just couldn't find it. So, finally, here is the cream they were talking about, it's Udder Cream, used on cow's udders. And one brand name is Bag Balm. I hope that is helpful. Keep on hanging on. Hope you feel better.

Is anyone on Tramadol? Is it a narcotic? Dr. wants to see if he can give me Tramadol at the time of my weight loss surgery, I don't know what it is and need info from all of you who are on it...

Hugs

Sonni

Hi Sonni, I have been taking Tramadol off and on for about four months, but, I have STRANGE reactions to meds. And I have had some of the side effects. Actually, it is generic for ultram. But it does HELP with the pain. I have fibro along with Sjogren's and, of course, a thyroid problem, too. So, you know, I am going to have a different reaction than your average person. Cause my body is just weird!!!

I checked in the Prescription Drug Reference book I have and it says the generic name is tramadol hydrochloride. The book says it is used to relieve moderate to severe pain. And it does work.

I have anxiety and one of the side effects I've experienced is that it does increase my anxiety, BUT, again it does work. So, for me, it's not one of the worse drugs I've taken and it does very well,again for me, for the pain I experience.

Wow, again, I can never be short and sweet.

I wish you all the best and I know the entire group does the same. You are a wonderful person and we all give you soft hugs and know all of us are sending you our "BEST." Hugs, Hugs, Hugs.....

Sandy

Hi, Sonni. No, it's not a narcotic, it's not addictive. I don't know what class of drug it is, I'm ashamed to say. I read all these things when they first perscribe them to me but I don't remember them. It's not a narcotic and it's not an NSAID. It's stronger than your average ibuporfen but won't tear up the stomach like an NSAID will. I have taken it for a long time. I guess it works. It seems to. I still have pain but I guess it would be worse. I never had any side effects from it at all. Except that maybe it might be what keeps me up some nights. My rheumy says it will do that, to not take it late in the evening. I hope if you get it it helps you.

Thank You Sandy and Rhonda for your posts. Tramadol might be the answer to my prayers.

Sonni