Wide spread pain going on 12 years.

Hello there. Sorry you are going thru this. Firstly, i must say that the treatment you explain by the nurses seem very hard to believe. trust me, I have been treated poorly before by a nurse when learning about my diagnosis, but b=never to the extent that you describe. I could see one nurse being an ass, but all of them there? Possibly you coud explain that further, if you want to, as it may be "off putting" to some. People with important info to add. I do not think that you are not being truthful for sure, but it takes away from your questions imo, from the answers that you want.

That said, I relate to all of your symptoms and I tested positive, via bloodwork for sjogrens. and other ai disorders. Iit has been very difficult and I relate to your frustration and pain. Just wanted to say hello and that I think I understand what you are saying, 

In my experience, you will have good days and bad days. This disease sucks, but what helps me is knowing that it certainly could be worse. But yes, it is pretty bad. Most times, but not always. I take plaquinil and I believe that it helps stop progression.  I wish you well. It is very rare for a male to have sjogrens so possibly it is something else. I only wrote to try and answer your questions, yet I feel that I didn't do a good job of that. :-) I hope to hear back from you in order to share my experience with this disease and offer any help that I may be able to in this forum.

  " I do not think you are being untruthful, for sure"

It's ok I was just speaking with my mother and we both realized what you said and how unbelievable it truly is. Why were all the nurses mean. They didn't treat the others that way. I never lashed out or complained. I was in too much pain I just cried and laid in my bed. When they changed the sheets which also was weird because they did not start doing that until around the 3rd day. I did not have a neck brace and each day when they rolled me I just new they were going to snap my neck. But they did not change my sheets roughly they were gentle there. I just laid many hours on a bed pan or had the bed pan on my bed next to me. This was a teaching hospital and the only time I saw a doctor was a resident who yelled at me to get up. It took 4.5 years to walk again and 6 to get a job. The pain is still with me. My muscles give out from time to time. I have good and bad days. I have arthritis everywhere, bad knees, ankle, my hands and shoulders hurt. Not really sure what is going on. I cannot hold down a job most of them are just too painful to keep. I do not even know if I have Sjogrens and already I am off to a bad start for moral support. Do not get me wrong. I am not depressed. I am frustrated. I feel like a hypochondriac. My jaw hurts, my ears hurt, my feet, knees, shoulders, hands and stomach. My siblings tell me to shake it off and others say you really have no pain tolerance at all. Then I begin to think damn I went a week in the field during war games with a broken leg because I did not want to lose. I crushed my left ankle and cracked 2 ribs and never shed a tear. I was in a field for hours. I had to drag myself to a road and try to flag a driver down but that just never happened. This was when I was younger. So now I'm thinking damn I have become a wimp I can't take pain any longer. But then my brother gets one little ol bulging disc and has to get it fixed right away because he cannot tolerate the pain. I have 3 in my neck and 3 in my lower back. I was getting injections all it did for me was weight gain. My sister suddenly is struck with autoimmune and needs help so I help her. She is impossible to be around. She is much better now her ordeal lasted 1 year. She has Celica disease. I then thought maybe I am not a wimp. When I came down with pacreantitis and refused morphine because I was convinced morphine did not help me I lasted 3/4 of a day before I said ok give me the morphine. I left for the hospital at 2am and received my first shot around 1pm. Oh so I guess it was half a day. After that I no longer thought I could not handle pain. I am not unhappy, sad, or depressed. I am excited that i have a doctor who is interested in trying to find out what is happening to me. I appreciate your comment it did make me think. Thank you for your time have a blessed day.

😀

Venita, i am so sorry for & appalled by Chris's remarks. I hope both you & Chris read this.

I have no trouble believing how the nurses treated you, Venita. My mom was on the neurological floor of John Sealy Hospital, Galveston Tx. The nurses were brutal and vicious. My mom had to have one of us with her 24/7 or she would've been left for hours on the bed pans, too. Metal then, plastic now -- makes no difference: to be left on one when you can't do anything about it is torture. I've had surgical recovery nurses do the same thing to me 5ehile keeping me 6 hours in recovery, "waiting for your blood pressure to rise." Ha! Should've asked me what normal was ,,,

Back to nurses throwing around patients: the woman sharing my mom's room ('71) had been shot in the head and wasn't supposed to be jostled, nudged, or more than very gently touched. Nurses were throwing her around in the bed, in front of the woman's family. Family complained. Treatment became 10 times worse. It took weeks & complaints to governor & state representatives & senators to get the woman moved to a different floor. It was the flagship teaching hospital for the state university's medical school. I arrived, a teen in high school, after both my mom's disasterous surgery and the other woman's family's complaint about nurses' brutality. As soon as i got there, my sister took me aside & said that no matter what the nurses or doctors did or did not do, i must not react. Write it down, write down everything: how many hours it takes for a nurse to bring the morphine (during which time you've noted 3 nurses sitting at their station, painting nails, reading women's magazines & arguing w/boyfriends via the phone), write down every snarky remark by the prima donna head neurosurgeon who should NEVER have done that surgery on my mom & who lost all interest once it was obvious to all that his surgery had failed & there would be no "i cured spasmodic torticollis with thoracic replacement" journal article, no unending fame & accolades.

I mention him, Chris, The Great Dr. Tindall, because he set the tone for that floor. He was the one who refused to discipline or fire those nurses when our "neighbors" complained. The only reason that woman succeeded in being moved to another floor was because Tindall wasn't her neurosurgeon.

Thus we had no recourse and no escape. If the governor, etc., applied pressure, Tindall would still have been my mom's doc.

Chris, i, too, was appalled at your reply. It was cruel. I am happy for you that all of your medical experiences have been so gloriously wonderful. But they've left you gloriously ignorant of reality. As to VA hospitals, Venita's experiences are the sad norm. I do know one person whose experiences were great, but he lived in a military city AND his retired nurse wife never left his side. When she saw something wrong, she forced them to fix it. Most folks in the VA system aren't so lucky.

Also, Chris, i don't know why you would assume that someone named Venita was a man? That, too, was offensive, as were all remarks flowing from that. You basically said that she couldn't have SS because she was a man. That is utter BS.

By the time people find a site like this, Chris, they've often been through all the Circles of Heck with the medical system if they have anything less straightforward than a cold or erectile dysfunction. Women suffer the most, with the pats on the head and remarks such as "This is all your imagination, honey." In our initial posts we often recite our entire medical history and here, in this very forum, that often includes a lot of abuse from docs and nurses. Why this would set you off on Venita and not others is beyond me.

Venita, nerve conduction tests and EMGs are a nightmare. I too would find it quite odd if the machines always conked out at the same point. I am sorry for that.

I'm also so sorry for the reception you got on your very first post. Usually folks get a warm reception, empathy, acceptance and help in this group, and i'm so thankful that no one here has ever told any of our male Ss folk that they can't have the disease because they're men. Between you & me, based on his remarks i have always assumed that Chris was himself a man.

Hope you come back. If anyone ever says anything offensive again, report it.

Aitarg

And to date 10% of people with Sjögrens are male. I never said s/he had it or didn’t. I just wrote that I hoped not.  

I think that this last poster is a troll and offers only negativity. I don’t think she has Sjögrens at all Looking in to her profile.just a mean and hateful person. 

I think you should both stop right now!

Aitarg. Immediately after her initial posting Chris apologised for any musunderstanding she may have caused to Venita and Venita graciously accepted her apology. That's where it should have stopped. However you continued it. That is not acceptable.

Megan