@lisalucier Lisa Lucier, Connect Moderator My first symptom of sjogren ’s was 23 years ago. One side of my face and neck swelled huge and was painful even to the touch. I was coming back from a trip when this occurred. As soon as I got home I went to a new doctor that I had seen only a couple of times (my doc had retired) He said I had an ear infection and put me on antibiotics. A week later I was back. in his office with a very dry and painful mouth, lips and swollen tongue. He then said that I needed to see an IM doc which I did immediately and she sent me to a rheumatology department at a regional diagnostic hospital. I went for about a year before I saw a doctor. (a 200 mile round trip)They did a type of X-ray of my right parotid gland (a sialogram??) and it showed a lot of inflammation. They decided to biopsy a lip salivary gland. 1st try they couldn't find any 2nd try they couldnt find any. 3 rd try they thought that they found one, but it turned out to be a nerve. My lip and a part of chin was numb for 10 yrs! Anyway my lip glands had atrophied and been reabsorbed by my body. Since that time, my mouth has been dry and painful, although I do have some saliva, from the left parotid.SJS also causes very dry nasal passages and sinus problems and dry and painful eyes. I use artificial tears eventually it causes a number of other systemic problems. Sjogren’s was the second autoimmune illness that i have. I had Sarcoidosis in my lungs within 2 years of having Legionaries disease. It iscommon for a severe infection to cause autoimmune problems. I will write more about sjogrens ,my search for help,and what treatments that I have had and how i manage it now, tomorrow. I am going to bookmark this post.It is difficult at times but it can be managed. Tomorrow, Gem

@ Right now the nails on my right hand have decided to rot and peel away. Somehow they are not painful. This happened last year. All the nails crumpled up and slowly fell off. When the nail bed was exposed there was great pain. It took a long time for the nails to grow back. So.......here we go again but i think that only the thumb and the pinky will be affected this time,l I have a boyfriend and darn it I have the skin peeling off of a portion of my nose. A medicated cream seems to be working. I am 80 an the boyfriend is 85. Grab on to the world it will not stop turning around. Have a good ride. There are nice people and then there are the others. Be a good guy and be there for yourself and others. Never stop helping others and yourself. Whjy? Why not. What else is there ? More of the same agonies so work with it and cry when you have to it seems to be a good release of tension and heartache. With love Peach414144

I forgot to add. Thje doctors here do mot know what to do. perhaps there is nothing to do. But the doctors can not even say a work of consolement. I do not even think they look up in their medical books for a way to help with the pain WITHOUT OPIOIDS . When I was at the dermatologists with a great skin rash over the entire foot I told the doctor there was great pain with the rash and was told there is no pain with psoriasis. Theyw ere wrong and the horrible pain lasted for three months. I was fairly a cripple as I live alone. The doctor should have ordered medicare to send me hekp for a while. Well, I did need to lose the 15 pounds. It can get horrible. But hang on the good times will come soon enough and we will know how to appreciate the god days. Shame to some of the people in the medical field when a person comes to them with peeling skin a[most exposing the bone and tell you they cannot help you but come back in 3 months for your next visit. WHAT THE HELL IS WRONG? ARE THEY OUT FOR THE MONEY AND NOTHING ELSE.? What a screwed up world. But still. you must be strong AND believe in yourself. Continue to hang in there and you will win. peach414144

My wonderful husband was so weak. I took him to doctor. We we're waiting in waiting room for what seemed like forever. I got upset and walked back and told them he was very sick. I told the Dr I thought he was dying. He said...he is NOT dying. My husband passed the next evening. I think doctors are not what they used to be. They thought they were God and found out they were not.

@gemmax, Hello Gem. Thank you for sharing your Sjogren experience. My sister also has Sjogren's along with Systemic Lupus and vitiglio. Autoimmune diseases run in my family. I have congenital COPD and have a fragile immune response system, my daughter has Raynaud's Syndrome, and a first cousin with Sarcoidosis. Do you find that others in your family also have autoimmune issues?

Oh, @oregongirl -- I'm so sorry to hear about this painful experience and for the loss of your wonderful husband.

@windwalker Oh yes. There are several family members with autoimmune illness. I have done alot of studying and it seems that all of these illnesses are becoming more prevalent or perhaps doctors are learning how to diagnose them better.We have 3 with Sjogren’s, 1 with psoriatic arthritis, 3 with RA, 1 with Lupus just in recent times. I have an interesting ancestry which I have often wondered might play a role in the tendency to have these illnesses. Honestly, over the period oftime that i have been ill, I have seen some improvment in the knowledge that is available to doctors, but it is still slim. Most people become autoimmune after a serious event such as an infection or other illness. With me, it was Legionaires disease. Did you have an event or an illness that you can point to as a starting point?

@oregongirl I care and I’m sorry for your sorrow.

Really sorry for your loss @oregonngirl
That must have been so terrifying.

I have been in ER recentl several times and I would not want main Dr. for anything. I begged him to keep the woman I was helping at my home after a terrible fall (broke wrist and groin tear) social severcis had me take her to their sister hospital where they did help her get to rehabilitation place.
Hugs, julie

@ dear oregonwoman IT IS A SHAME TO THE MEDICAL FIELD FOR YOUR HUSBAND TO BE MISTREATED THIS WAY. I AM SURE THAT ALL WHO WILL READ THIS WILL FEEL THE SAME. My husband could not rise from the bed. When I called his doctor she said in a nasty way "If you think he ts that sick then take him to the ER". We did......'he died six days later." sO i KNOW HOW YOU FEEL. sHE WAS HIS FAMILY DOCTOR FOR YEARS. wHERE IS THE COMPASSION? the humanity?