View Full Version : Frustrated...Lupus pain w/ negative MRI's
08-10-2011, 08:51 AM
I am new to this site. I was diagnosed early this year with primary SLE secondary Sjogren's. So far, I have loved the rheumatologist, but I continue to tell her where my joint pain is and she continues to order MRI's which all show "negative." How can this be? I am beginning to think this is all in my head and I am going crazy.
Hi there csdamann! Welcome to the forum (:
The thing about Lupus, is that it's called an "invisible illness" for a reason.
The people who have it don't look sick, sometimes you can't tell that they are sick, tests will show up with false negatives at times... etc. But that doesn't make the pain and fatigue, the sickness, go away. That doesn't mean that it's not there. It really is there, you just have to learn to listen to your body and do the best you can, living with the illness, and trying to do what you can to make yourself feel better.
It's important to know that it's not all in your head - you're not crazy, you just have an invisible illness.
Sometimes, tests will show up with a negative ANA, even when people are in an extremely high flare with Lupus... it's tricky, and hard, and freakin' annoying, but it is what it is, and you have to stop beating yourself up or second guessing your body and your symptoms.
We all do it - especially before we get diagnosed. I think everyone goes through a stage where they start to doubt themselves, and that they're really sick. So many people tell us we look fine, and we don't look sick, and it's all in our heads...that we start to believe them. But it's important that we don't -that we remember how horrible we feel, and that the pain, the sickness, is all real.
It's wonderful that you have a rheumatologist that you like (: That can be one of the hardest steps, so having it down is a good one.
I'm so glad you've fuond us here on our WHL forum, there's so many great people who are extremely experienced and supportive, so it's a great place to be. Especially because they know what you're going through, when so many healthy people in your "real life" just don't understand.
Anyways, sorry for the novel, i'll be shushing now.
08-10-2011, 01:26 PM
Welcome to WHL. As Elo told you, we've all been through those negative tests. I had one neuro who was sure that I had MS, but when the MRI and the lumbar punch were both negative, he dropped me.
I also have Sjogren's, and it is a devious AI disease with a lot more to it than dry eyes and dry mouth. It can have a lot of neurological symptoms, but it never shows anything on the MRI. I would suggest that you do some reading at Sjogren's World - http://www.sjogrensworld.org/articles.htm
I know that the symptoms that the researchers in those articles are reporting about sound very familiar to me.
So, you're not crazy - you're just like the rest of us here.
P.S. I attended a Sjogren's conference in April, 2010 and I posted notes from many of the sessions I attended. If you do a search on Sjogren's, you can find them.
Hi and welcome to WHL! We are so sorry that you are having to go through this but, as Elo mentioned, it is not uncommon not to be able to pick it up on on the MRI of the joints. Sometimes that is because the pain is new and hasn't had time to damage the joint yet and sometimes it is simply because huts but doesn't show. LOL I am sure there is not one person here that hasn't been where you are. Trying to explain a pain that the doctors cant see. It doesn't mean yo are crazy it just means you have Lupus. also, many of us with Lupus also have Fibromyalgia and that has its own share of issues and body pains.
Try and relax because stress will make it worse. Don't down yourself and try to get some rest. Welcome to the WHL family. We are really glad that you are here!
08-11-2011, 04:11 AM
hi, and welcome
08-11-2011, 01:02 PM
Thank you for the warm welcomes. My blood tests showed positive ANA, whatever the Sjogren's blood test was showed very positive, I have had a skin biopsy that was positive for Cutaneous Lupus so I guess I know it isn't in my head, but it is hard to feel that way when the doctors continue to look for something they are not finding. What are they looking for? Thank you magistramarla for the additional link on Sjogren's. I will look that up and do some reading.
Since I have been diagnosed and apparently developed a severe flare end of February, I have not gotten back to normal yet. I guess I have to learn what my new normal will be, but what do you do to help with employers? I'm fortunate to have had the same employer for 16 years who has been more than generous with me, but he isn't young and I know that job won't last forever. How do you hold down a job when you don't know if you can get out of bed tomorrow? I'm frustrated. I have a 4 and a 5 year old who suck most of my energy just getting them ready to get out the door in the morning let alone actually putting in a day's worth of work or even a few hours worth of work for that matter.
Oh, one more thing, I have been on Plaquenil, Cell Cept, prednisone, and soma. All of a sudden I developed side effects the doctor said was caused by the Plaquenil so she will not let me take it any longer. I haven't been to see her since she took me off it. Has anyone else had trouble taking it? From what I understand it is one of the best long-term meds. If anyone else has had troubles, do you recommend an alternative I should ask the doctor about?
Thank you again for the welcome. I know being a part of this community will be wonderful for me and hopefully someday I can help someone as you guys have me already!
Hi and Welcome to WHL. Since none of us are doctors we can't recommend doctors or medicines. You are correct in the fact that Plaquenil is one of the best drugs for long term use however there are things that your doctor can work with you on. While I have never had any issues with Plaquenil I have met people that have (some of them in here). It is not very common but it does happen.
Now as to the diagnosis. I know it sounds strange but be THANKFUL for the cutainious LupusSjogren's. It is because of these things that your doctors have had you on meds already. You have no idea how long some of us go without a diagnosis at all! As strange as it may sound having the diagnosis that you have already is as good as having a Lupus diagnosis. So many times the diseases overlap so getting a diagnoses of one while the doctors are still looking for another is actually good medicine (and that doesn't happen often).
Try to take a deep breath and to remain calm. Stress only makes us more ill.
08-11-2011, 08:34 PM
Mari is right! Be thankful that the doctors are still interested and concerned enough to look. We usually have to beg to keep a doctor involved. It doesn't mean something terrible is wrong, just that they want to get the diagnosis right! Wow, it's been a good day for doctor and OT visits - maybe we should all go buy lottery tickets!