i have a lot of the symptoms of ss dry mouth, joint paint in hands and fingers but also have cheek pain and sore ribs. Will see a rheumologist in October but not sure whether to mention all these things they seem so disconnected. Also i am a diabetic. Has anyone had cheek pain with ss. Also I had an ana blood test and it was negative which does not seem to be conducive to ss.
I have the sore rib , but not cheek pain.
Let me know what your doctor tell you in October please 😀
Not sure about SS with your symptoms but the cheek pain sounds like it could be sinus infection or TMJ perhaps?
I would mention the whole list . Write it down before you go and if its long photocopy it so you can leave a copy behind.
I think you have to have raised ANA for SS
Hi Heather.
I have soreness/aching from time to time along the side of my face.
Apparently it's swollen salivary glands, common with ss.
Massage the soreness and drink lots of warm water and it should ease off.
If not, you could have an infection.
Hope this helps.
Hello Heather,
I have SS, and I have the soreness in the face along the sides, this would be in the salivary gland area. This would be pretty normal for us SS sufferers. I kind of massage the area, it is important to do this, as one can get hard nodules, and some have to have them removed, and rubbing them can help keep them soft or even eliminate them. I also get these under my chin in the lymph nodes, and these can be very painful! I would write down ALL of your symptoms and make sure to give it to your doctor. They need to know everything. My wrists and joints are very painful, and I too have RA, but the wrists for some reason are also part of the SS. This SS has also gone inside to my organs, so you really have to keep a list of any, and everything you notice going on! I have kidney, liver, intestine and stomach issues, and now issues with my feet and legs. It's just crazy what we go through! It's not always JUST the dry mouth and eyes, it can be so much more. The doctor will tell you from your notes, what things are part of it, and what are not to worry about. There are meds that will help you out. There is no cure, but there are meds that can at least help some. It takes a very long time for things to show up in the blood work, so it may not show up for months, or years, so don't count on that. I wish you good luck Heather! Hope this was of some help! God Bless!
I too have rib/flank pain. At times very jolting. My ANA was positive as was my RO/SSA and I had elevated ESR. I am diabetic also along with Hidradenitis Suppurativa, and Fibromyalga. From what I understand SJS or SS is hard to diagnose and many other disease mimic it. I guess it is important to figure out if it IS what you have possiblty through a lip biopsies because treatments for the other possibilities can make you worse. BEST of luck getting a dx and never give up 
How was yours diagnosed from symptoms or blood work. Thanks for all your comments.
Hi Heather,
At first it was from symptoms, then they tested my eyes, and they were very dry. (some sort of paper test they put just inside the lower lids) I also had, still have the Ranauds, I guess it comes along with it. Then it was the lip biopsy. Then it finally showed up in my blood work. But I have had Auto Immune issues for years due to the RA. And now all the issues with it going inside to my organs. You will also need to make sure they keep an eye on your lungs, as that is also one of the places it hits when it does go inside. SS can be a real bugger, but hopefully you will not get all the stuff I have, as not eveyone does!! But they do have meds that can help us live with it, and the support groups! Just make sure you write everything down, even if you think it may not be important, like I said, let the doctor decide what is, and is not important. You would be surprised what actually is!! I wish you all the best of luck!!!
Sometimes I feel I am imagining it and I am just a hypocondriac and then I t think this dry mouth is not in my imagination and my other pains my ribs and cheeks and fingers did you ever feel like that
Are you have dry eyes also?
Oh yes! It sure does make one feel like that!! I have thought that this can not possibly be part of SS, but surprise, it ends up being part of it. When the Peripheral neuropathy in my feet and lower legs hit, I thought the same thing, but oh no...it IS part of it all. So frustrating!!! I very often can not tell where I am putting my feet when I am walking, so I am always tripping, and am always off balance now. BUT, like I said, you most likely will not end up like me, and some others, as not everyone gets this bad. The sooner they can get it diagnosed, and get you on some sort of meds, you should be ok for a very long time!! I'm 61 now. My eyes are getting better, as my RA doctor put me on Imuran, and it seems to help with the dry eyes and mouth. It is the best it has been in a long time!!! I have tried the mouth wash, and tooth paste, and none of it has worked for me. Your dentist will give you some names of things you can use for the dry mouth. Some can be purchased over the counter...if you can find them, others you can order on line. I chew gum all the time, but I am able to ease up on the gum now. Thankfully! I do have to use the natural tears a few times a day. BUT JUST the saline, nothing else. There are a lot of things on line you can look up. There is a lot of info there on line, but it is best to talk to your RA doctor, and reading the support groups will help too.
One more thing...I also had hair loss, but have come through that now with help from Biotin. It is a Supplement. And a great shampoo called Nioxin. Thankfully my hair has returned, and is shiney and thick once again!!
Hi Deidra - I have same problems as you with my SS. I am more unlucky than you in one respect - Imuran/ Azathioprine landed me in hospital twice with pancreatitis last year and I have failed to tolerate three other DMARDs. Have you tried Mycophenolate Mofetil/ Cellcept yet? I'm hoping to get to try this before the year is out.
Hi Tumtum,
I am sorry you have the sam problems!! I don't wish this on anyone!! No, not yet on the Mycophenolate Mofetil. I was on Methotrexate for a year, and it made me so sick, and it really aided in the hair loss, not to mention the awful skin issues!!! I just felt sick all the time, so they made me go to shots, and that was even worse. I just told them I could not take it anymore. So went off of that for 6 months to get it out of my system. I was put on the Plaquinel (sp) at first, but it damaged my eyes in the first 3 months, which is too bad, because it really helped the symptoms. But they took me off that right away!!! I forgot to tell Heather she will have to have her eyes checked by an Opthamologist every 3 months at first to make sure what ever meds they put her on, there is no damage!!! That damage can not go back to normal again, once the damage is done, there is nothing they can do. I will have to read up on the med you mentioned. I just get so tired of all this stuff going on! I think we finally have my adrenal glands and kidney's under control with the meds, along with my blood pressure...yes, this darn SS can cause problems there too! Boy, sometimes I feel like I've been through the washing machine and rung out! LOL It seems if it's not one thing, it's another! I sure wish you all the Best!!!! Keep me posted if you try that new med! I am going to look it up!
It is hard isn't it. I had a very similar response to methotrexate to yours but managed two years on it and I believe it chased off my RA symptoms at least. Then there was Plaquenil/ Hydroxichloraquine which gave me analhylaxis after 18 good months. Same for Sulfasalazine after only 3 weeks. The nerve pain drugs have given me severe reactions too. So the only options possibly available to me now are Mycophenolate/ Cellcept or Rituximab perhaps or IViG. It seems my Sjogrens might have given me small vessel disease of the brain - just had an MRI to assess whether or not this has progressed. I'm under rheumatology, neurology and endocrinology now and they are working together on my case hopefully. This is all very new for me as I've been disparaged and misdiagnosed for six or more years until I got to a new hospital with excellent rheumatologists.
What happen if we not taking all that medications?
I haven't been able to take any for over a year apart from a six month spell on steroids - which only mask things. Slowly I've been getting more dry sgd more fatigued and my CRP has been rising and dizziness/ vertigo/ hoarseness etc all a bit worse. But I still think I would rather try to find alternatives if I possibly can. For example I'm on BP meds which I don't think are really helping and I think it would bench better if I could lose weight, help myself through exercise and be sure to keep using topical medicines such as Lacrilube, hyloforte drops and mouth sprays etc. I'm very drug averse now and doctors are very wary about medicating me after four hospital admissions last year.
Ps sorry for typos!
Oh Dear...the problem is...these meds can be worse, or cause more problems! It really is hard to say the least! Have you had your adrenals checked by chance? My BP was all over the place...in extremes!! They finally sent me to a Urologist, and he is the one that found mine were not working right, and neither were my kidneys. I had a feeling something was wrong, as my kidney area was hurting, but no other sign of kidney infections. And my BP meds were not working, they just could not get it under control. Just a few tests, and he found out what it was right away. I have been going to him since the beginning of the year, and was in acute kidney failure. I saw him yesterday, and my bloodwork has been getting better each week. I feel like a pin cushion, but it had to be done weekly to make sure the meds were working, and they were! I now don't have to see him, or have blood work until Feb of next year, or see him!!! I am so excited! I really like him...but I am glad I don't have to see him! LOL My doctors are all working together as well. RA doc, Urologist, Gastro doc, heart doc, neurologist, and my GP. I am still thinking of going to the Endo doc, as they can see a lot of things going on in our bodies as well. I sure hope they take good care of you now!! I can't imagine being misdiagnosed all this time!!! My Heaven's!!! I do know it is very difficult to find, but 6 years is a very long time! My Mom has Lupus, and it can take a very long time as well, and she has been healthy all of her life, until now. It came on for her at age 79, she just turned 84 today. She gets very sick, and does not know how we all handle this. LOL I try to tell her it is not easy, but we need support, friends and family that understand, good doctors, and for me, lots of prayers for strength! I try not to sit and feel sorry for myself, and remember someone else always has it worse than I do! Like you!! You can't take a lot of the meds, and have to suffer even more!! I hope your results from the MRI come back good news for you!! NO progression!!!! Love & Prayers for you!!!