Icish
Thank you for the post . Wonderfully put.

Why then does certain people ALWAYS call me out on the board. So lets get this straight I guess you figure I am all wrong . Right. LMAO!!! I have this kerap longer that most on this board. None of it is fun! Fibro CFS lupus sclerederma raynauds RA and suspected polymyoitis (sp) I have researched the internet for myself for years. I am not stupid! Play away my friends. You think this is so funny .Some people have to be right all the time or nasty messages come their way from certain people. I have been wrong and apologized. Anyone else like too? LOL. Oh forgot to mention sjogrens back there which with me is severe. Why can it not be a support group instead of every one fighting this war of words. We are all sick and in pain. Why are some members revered as gods when their info is not always right. Do they apologize? No they attack. Some people put up good info only to be slammed for it as another s persons is supposedly best even when it is not necessarily the best. There is some very special kind and helpful people here. Others simply boost and brag and whatever.. I guess the word was control I was looking for. Why don't we stop the nonsense work together and help one another.

Dallas, you know that's not possible as long as two extremely narcissistic drama queens insist on being the "experts," the only "experts," and legends in their own minds. Check out the vicious "hug" I received. Someone doesn't have the balls to challenge my auto-immune patient status in public, because she knows DS will shoot her down, and rightly so.

Hi Barbara,

Welcome! I wish I could tell you the pain eventually goes away, but I've been dealing with this disease for close to 13 years and have not had much success with the pain. I currently am seeing a pain management doctor, which is the best move I have made in a long time. I'm not sure what you are taking or how long you have been taking meds to help control your lupus, fibro, etc. so I'm not sure if you have given the meds adequate time to begin working, you might want to discuss pain management with your doctors and if they cannot assist you seek a pain management specialist.

Getting your medicine cocktail tweeked is half the battle we tend to have. Having a good report with your rheumy and other docs really does help keep things moving along as well. I hope you have a good doctor that will continue to help you get your pain under control.

Hugs,
Melissa

the rheumy i had was no help, it was like he didn't want to address my pain. went to him for like 3 years and just changed last week. new dr kept me on same meds. plaquinil, cymbalta up'd to 60mg just started it so not sure, but he also gave me a cortisone shot and i have had 5 great days and counting..lol..everyone take care!

So happy Barbara that you have had some good days and keep on counting. lol. hugs It does take a while to gwet things sorted out.

Here we go again.....

Wolfgang is talking about ME and let it be known that I only responded to her because of the RUDE and unecessary "shout out" message she sent me FIRST. Check out the hugs I have been sent by her so you can see who the mean one is. All because I tried to help someone. Why should I include a whole support group and cause arguing/fighting when no one else needs to be involved in a dispute between two members? I dont know....To me, that is having good manners. I was only trying to help someone NOT get sicker then they already are. That makes me a naraccistic know it all drama control freak???? Trying to pass on information and experienced I have had/have learned the hard way? I dont know....in my book that shows a person who truely CARES about another persons well being. Dont put me in a category for which I dont belong. I have never said anyone was WRONG or corrected anyone. Go read thru the posts....You will not find one.

I could say the same thing and bash a couple people in the group, call them names, and make them look like trash to everyone else in the group like they do to others. Yet, I dont do that unless I AM CALLED NAMES and bashed first. Then, I still do not name call, I just defend myself which is completely useless and a waste of my time to the couple of people who have it out for me.

My dad is very sick....I am sick....I dont need to read negative posts about myself by another member posted to the entire group. if you have something to say bad about a person, message them personally. Dont drag the whole group into it like you are notoriously known to do. NO ONE needs it. You have no clue as to the kind of person I am. So, stop your non-sense name calling and analysis of me when it couldnt be further from the truth.

Textbook bullies are people who start things, and then when they get it thrown back in their faces, they claim THEY are the VICTIMS.

Poor Melissa. Evidently she doesn't remember that she started it first, which anyone can verify by seeing the time stamped on the posts and hugs.

If you can't take it, don't dish it out.

I have also been struggling with the pain and fatigue more than all my others problems, these are the 2 that ahve always affected me day to day. I do believe everyone on here is supportive, and here for the right reasons, I just think all our body chemistries are different, for instance, I know alot of people with Lupus on MS Contin for pain and they have great relief. For me, I did not do well, alot of side effects that did not go away, for whatever reason, I do best on percocet without the tylenol. I think we can all give our best advice, many from our own experiences, good and bad, and you have to continue work with your doctors until you find the right mix for you personally. We are all suffering, worrying about our future, many raising families, or trying to work, or both, and its just nice to know that when you come to DS we all can relate to one another. I hate to see anyone get upset on here, because all and all, everyone is so sweet with great hearts, and we all want to help each other. That is what is important, that we can count on each other on the good and bad days to remind us that better days will come, and better meds will come in the future. It seems most of us have a mixed bag of autoimmune diseases. I too have secondary Sjogrens, MS, and Ocular Myasthenia Gravis. My rheumy has ALWAYS referred to my muscular and bone type pain as " fibromyalgia" even though he states I do not have any trigger points. I think at least for him in Boston, he lumps all that unexplained pain into a generalized fibro catagory. Who knows? Does it mean I do have it? Does it really matter to me, no, it hurts, and its going to hurt regardless of trigger points or no trigger points. Sorry I am rambling, very tired tonight. trying to get all my thoughts out. I still play around with my meds and its been 5 years, so just keep with it, keep yourself educated as much as you can, and make lists of questions and stuff when you do go to the doctor, that way if you read something on here that you find relevant, you will remember to ask. I myself have been on plaquenil for 2 years, and I know for so many it helps the pain, but for me I notice absolutely not difference on it, not sure why, but my doctor wants me to continue with it. Some people get relief from Neurontin, something maybe worth trying, similar to lyrica without the visual side effects in most. Be well and stay strong!
Hugs to you, Mary