Dealing with alot of Pain,Is this a flare?

[sandie_beach]

I have a Dr,s appointment next week,,because I went off all my meds about 6 months ago When I take the plaqunil,and cymbalta,I have daily diarehea.I just got plain tired of it,and was feeling ok otherwise. Now,I have been waking up all through the night,with such bad pain in my hips,legs,elbows and arms. At work,I can hardley walk up steps.I am a homehealth care worker,and at times,I feel just as bad as my patients,At times I get tingling in both of my hands. I have a question,since I,m only into SS a year. Is this a flare? I,m afraid I,m getting Neuropthy. Is Neuropthy assoicated with Sjogrens? Thanks so much for your replys in advance.
                                                                                                                    Janet

[Poochie]

Hi Janet,
I'm no medical person, just a fellow sufferer of Sjs and numerous other things.  However, I have been through what you are talking about.  I too became fed up with all the meds and stuff and just plain chucked the whole mess. 

I speak from experience when I say, that was dumbest thing I have ever done in my life.  I have never been in so much pain, so fast in my life.  Even when I broke my ankle in 4 places was the pain that severe. 

Yes, neuropathy is associated with Sjs, and a lot of other things.  I would suggest you see if you can move your appt. up for tomorrow or Friday.  Perhaps get on the cancellation list.  You really need to get back on the meds, but let your doctor know about the difficulties you had with the Plaquenil and Cymbalta first.

Good luck and please let us know how you are doing.

Hugs, Pooh

[sandie_beach]

Thank you Poochie,Yes,I will let my Dr know whats all going on. feel so bad,I was suppose to go to my Grandsons baseball game tonight,I called my daughter after I got off work and told her I was too tired,She said I knew you weren,t going even before I talked to you.I wish she understood.I don,t think anyone does.
Ya know,Its a dry eye and mouth thing they say. Its so hard to let myself show how I feel,I think they will think I,m just paranoid. Again thanks
                                                       Janet

[Rhonda]

I understand Janet.  If you find someone who does know anything about SJS they think it is just dry eyes and mouth.  Boy, if only that is all that it is. 

My family is very understanding, but my grown children (ages 24 and 28) are still having a difficult time realizing that I am not the same mother I was 6 months ago- meaning I just do not have the energy and get up and go I had even 6 months ago.  My daughter said the other day that I don't laugh anymore.  I realized she is right- I am working on that...it's just been so hard to laugh and act as if I feel great when all I really want to do is go crawl into bed and sleep. 

[lesmom]

It is hard to keep up as if nothing is wrong. At work you have to keep up the "I'm great =) " attitude and at home you hope to be able to let your guard down a bit and share with them how you feel. People who don't have SJS just don't get the pain, the strange feelings, the fatigue and everything else that goes along with it. The weather I am finding is really a nasty thing to set flares off.
Hang in there and a big hug for ya. Hope you feel better soon.
Leslie

[dbab]

Hi Janet,  I don't know about the Cymbalta because I never experienced it but I know what you are saying about the Plaquenil.  I did have diarrhea too with it when I first started taking it but it eventually went away.  How long were you on it?  Would a lower dose make the side effects less?  I hear so many people talk about how bad they felt after they stopped the Plaquenil which has made me so scared to even think about stopping it.