Sjogren's Syndrome Support Group

Hi all

Ive been having some severe pain everywhere. My latest is pain in my vaginal area. My bloodwork showed red and white blood cells. I went to urologist who did a cystoscope and found no bladder issues. I'm going for an IVP with dye. I don't know what this is supposed to show as I think I need to see a nephrologist. I suspect kidney stones and have been drinking a lot of water to pass them! I'm so frustrated. I have primary sjogren's and it is now causing me renal issues which I fear!!! Sjogren's can totally dehydrate the organs and throw off the metabolic balance of everything causing a host of issues. On top of all this kidney mess, I also have PCOS and the cysts on my ovaries are paining me!!! Im a train wreck right now. My hands get numb and burn. I also have bone degeneration in my spine which is killing me right now. I'm 42 yrs old with all of these problems. Omg

Sjofrown,

Sorry to hear you are in so much pain

I had pain like yours but now I have little to no sensation and I don't know which is worse.

The pain/burning and numbness in your hands could be neuropathy that is common with Sjogren's symptoms.

Are you seeing more than one doctor for your symptoms?

What kinds of tests have you had?

Post edited by: twistedDNA, at: 01/13/2012 12:37 PM

sjofrown... Having pain in the spine is awful...I have it too, causing me sciatica. Nothing can be done. In fact, I just got home from seeing a Nephrologist, and he said I was "ok". So Im glad about that because I thought I might have Distal RTA - but he said no. I faxed a slew of blood test results to him, which in hindsight, I think wasn't a good idea. I should have let him run his own tests, b/c he may have been able to check for other things, of course. But, he looked at what my GI and Rheumy took, and said all seemed ok. He's aware I'm going for a cortisol stimulation test monday, so there was really nothing for him to do but look over what my other dr.s have already done. But he's close by-just in case. He did say that SS wreaks havoc on the kidneys, so I guess I'm just very lucky at this point, which I am very thannkful for.

I'm sorry you're in so much pain...It's so frustrating. I also have numbness, and tingling you described, and I agree with TwistedDNA's comment, that it's something that perhaps we'll have to just deal with, as it's a sjogren's symptom.

I hope you feel better soon...Will keep you in my prayers.

Take care.

Thanks so much twisteddna and you too gemini. I appreciate your replies and encouragement. I know that you know all too well what Im dealing with! You guys are so supportive and thats refreshing especially in this day and age