Sjogren's Syndrome.... I need your help with treatment and Pain Management

I was diagnosed in my early 20's just After dealing with a miscarriage. Im now in my 40's. Dry eyes, constantly sweating , oh can't forget the dry mouth thay took all my teeth. :( Now onto the the PAIN! Wow! Let me just say that when you can't put your own pants on without falling!! SO someone has to help because you can't lift your own leg!!! I also have Generlized Seizure Disorder, Grandmal, and Stress Induced. That's right stress induced.

I am 32 years old and diagnosed with Lupus and Sjogrens disease. Wow it took me about six years before being diagnosed and the only reason, I was diagnosed, was because I am a nurse and I'm also in med school trying to be a doctor and had to self diagnosed myself. at first the doctor thought I was making the whole thing up, even the labs until he checked my labs, and even before seeing him I was put on pain management about 5 years ago, around 25 or 26 years old, I have been through a lot of people thinking very bad things about me thoughts like I was a drug addicted and I was way to young for prescription drugs but if you have ever had lupus and sjogrens disease, let's just say it feels like cancer everyday and ms all rolled into one disease and your suppose to function and act normal and try to work and you don't even have enough energy to even brush your teeth. It's funny because doctors help write books and see people in pain and read these symptoms of people in a lot of pain but don't want to help relieve the pain or give something strong enough to stop the pain, would you not give a cancer patient pain medication? Would you even have to ask are you in pain ? Stupid! I'm so serious it's not even funny. Not only do you have pain, but you have pain in all your muscles my heart and liver, my brain my bowls my neverous system my penis etc. are being attacked in my body as we speak and my eyes are dry and feel like rocks and I'm not sure if it's just me but I hear a sound like a kinck or a fluid sound in the middle of my head and my mouth no matter how much I floss or brush it bleeds and my breath stinks And if I don't brush early in the day I'm so tired I don't have enough energy to brush before bed. I can't move for hours when first getting up and I get so stressed out, I have to go to bed early or you feel so dizzy like your going to pass out and oh and don't stand up to fast or you will pass out. I was first diagnosed with anxiety depression and bipolar, its funny now but at that point then I almost jumpt off the building, ok I didn't but it was that bad, I was hallucinating and seeing things and very low and depressed. I also was diagnosed with ibs/ibd fibromyalgia devics ,migraines oh god everything. I haven't started treatment yet so that's probably why my comments are all negative and oh also I tell the truth and I try to explain it so that everyone can understand me and maybe it's the nurse in me. I have to say one word that sums it all up, I would say the one word would be HELLLLLLLLL. Lucky for me I found it early, so treatment can prevent further damage to my organs and my Lupus and sjogrens loves my liver right now and so I'm at risk for liver cancer or cirrhosis of the liver. I believe your at risk for cancer anywhere your also at risk for heart attacks and cirrhosis of the liver and strokes and I also seen something about it all turning into MS later down the road. I consider this to be cancer, cancer it does Almost the same thing, just randomly attacks an organ and can spread to other organs if that makes sense. It feels just like ms but probably won't be hospitalized, unless you have a rare or more severe case and in my case, I have both lupus and sojgrens which makes my condition 50 times worse, than just having Lupus or sojgrens by itsself. I think there are 3 really bad disease one is MS two is Lupus and 3 is sjogrens disease. I read something that said if you have sjogrens disease the your 60% chance of having an overlapping disease or autoimmune disease the other two are lupus SLE or MS. In my case it's lupus and Sjogrens. Also wanted to tell everyone and give them hope becuase even though you may not test positive on some test but have the clinical symptoms you can still have and be diagnosed with that autoimmune disease there is no one kind or type of disease it's not like your average disease like cancer or diabetes etc. so don't give up but don't be a hypochondriac or make up symptoms or continue with something if you don't have at least 4 5 or even 6 of the 11 or 12 symptoms also your body is unique so for me I just got a small patch on my face I didn't get the whole butterfly rash thing so I was almost mis diagnosed again until i remembered the rash I had 3 times. Anyways on a positive note I would be willing to offer support for people that are newly diagnosed or not sure if they have it or confused or where to go get labs and what labs to do or where they can do cheap blood lab work, I have done it all I am not a doctor but I am close and give good information and love to help. I would be willing to help people that have love ones or that don't have a medical background and are unfamiliar or confused with this disease particular disease. I am familiar with most diseases and if I'm not I can look it up and have an answer in a couple of days, it's fun and I feel like I'm helping while I'm sick in the bed

I became symptomatic in 2007 it's been an educational journey that's for sure. I currently take plaquinil/Carbamazaphine/Nadalol/
Cymbalta and have IVIG treatments every two weeks. Also just started medical Marjaauana.

With all levels this I am able to control my pain so much better. I will never be pain free this I know but at least I'm much better then I was and can function so much better. I have Sjogrens with cranial and perifrial nerve involvement with small nerve neuropathy and trigeminal neuralgia. You need to have a doctor that is a Reumetoid Immunologist. I went through a variety of different medications before finding what works for me. Some meds the side effects were worse then the disease. You need a doctor that works with you to find the right combination. It's a long journey but keep fighting

I take morphine 3x/day. They had me on hydrocodone, but eventually I couldn't take the pain and ended up in the ER. Sometimes you have to advocate for yourself by pushing and not taking no for an answer. Protest! Cry in front of strangers! Tell them if the pain is TOOOO much. I was admitted and they could see that my pain was real, but I had to let all my frustrations out and be an emotional mess for a bit, which I do NOT usually do to strangers. Also, for those with mouth pain, there is a prescription mouthwash in a little brown medicine bottle called Magic Mouthwash, and it truly works! Rinsing a few times starts mending the worst sores. You have to have your dr prescribe it. Another thing, IVIG is not a drug. It's the result of 1000-1500 blood donations, which are then used to extract immunoglobulins that are part of and a boost to the immune system. That's why it's so expensive.

I got some relief from a butrans patch (10 mcg) but also use nuycenta, hydrocone, and oxycodone on occasion. An alprazalam with the pills will help, the mildest. And still the pain can just be grinding. You cannot think of two things at one time, so watch a movie, do needlework, anything to concentrate on something beyond the pain. It is a challenge. My pain has gotten much more severe, and Dr.s act like you are making it up. Mine is in nerves. It is miserable, and dictates what I can do every day.

Hello there! I hope this finds your friend suffering from Sjogrens doing well. I was diagnosed with Sjogrens almost 4 years ago. I do take pain medication as my joint and muscle pain are a serious problem. However, I also have issues with skin rashes, failing eyesight and my teeth are falling out. I believe that this disease is very misunderstood and one that someone must experience to understand. The doctor's are not compassionate to the pain associated with this disease. Much more research needs to be done. Hang in there. don't give up your search for a competant doctor. Best of luck.

I am like your friend. Live in Australia. Noone can help me-please help. PAIN IS UNBEARABLE. dry eyes and dry pleurisy out of control. i see no point in going on.

My poor mother was diagnosed yesterday with this awful syndrome. She went to 10 doctors who told her she had Lichen Planus, and finally one took the time to figure out what was going on.
She does not want to live, given her mouth sores, pain and general diminished quality of life.
Her mouth sores are ongoing and painful, has anyone found anything that can help? She goes through a tube of Orabase daily and nips on gin to take the sting out of her sores so she can eat. Not a great solution. Thanks in advance for any and all suggestions as to how we might find relief!