I was diagnosed a week and a half ago with an overlap of Lupus and Sjogrens. The doctor who diagnosed me was a nephrologist and did not seem to have a lot of awnsers or time to answer all my questions so here I am- I hope they are not studip questions- I am new to this.
1- What kind of doctor do you see for Lupus regularly 7 hoe often- do you have to take tests on a regular basis?
2- The doc gave me plaquinil- will this help with any numbness/ neurological issues (I have optic neuritis and my left leg is numb).
3- Do most people work full time? I am so exausted all the time and am still working full time but have no energy for anything else.
4- How long does a flare last?
5- I have this swelling of my ribs - costochondritis (sp?) - it hurts and makes breathing difficult- has anyone had this and how can it be treated?
I have so many more questions but these are the ones that are on my mind right now. Thanks for your help with these questions!
Hi Meg, hope I can call you that! I will answer your questions from my POV.
1. You see a Rheumatologist for Lupus
2. Plaquinil should help you, but since everyone is different who has Lupus, it might work for other things. I hope it works for you. You could see a chiropractor for the numbness in your leg-mine helps me with that. As for the optic stuff, I was just put on prednisone a couple months ago for that.
3. I haven't worked full time since 93. I worked part time till 95, then got too tired to keep it up. I have noticed that the prednisone helps me feel stronger, so I would ask for that if I were you. You might be able to work longer taking it. I take 10 mgs.
4. Some of my flares only last a day. In the past, before I began taking the plaquinil, I had them for seeming months at a time.
5. I am sorry, I don't have any knowledge of the costochondritis to help you with. I hope someone else jumps in with info about it.
Hi Meg, I am a lupus/sjogrens overlap as well. I have had the neuro symptoms like you and the plaquinil does help, actually the plaquinil has been like a miracle to me. It got me out of my bed after flaring two months. I see a rhuematologist who is amazing and very kind and understanding. I also have been dignosed with costochondritis and it hurts like hell! Mine mostly sits right there in the front of my chest where the cartilidge is, but also hurts around mt left side as well.
This place is amazing with the most supportive people. You will like it here I too am newly diagnosed, in June. I was ok one day and the next I was very sick. My first symptoms were numbness, they actually thought I had a stroke. I couldnt balance I was walking like I was drunk. The neruo symptoms have been the scariest.
Glad you are here although I wish you didnt have to be.
Hi Everyone- Thanks so much for your help with my questions. I am hopeful that the plaquinil will work and i am trying to get am appointment with the rheumatologist but there is a big wait.
Jen- I am glad that you shared your story. It makes me feel better to know that I am not the only one to be diagnosed with two overlapping autoimmune diseases. I also has a lot of stroke type symptoms- I was convinced I had MS. You are right they are the scaryest syptoms. I had a lot of vauge syptoms like fatigue, joint pain, strange "flu" where i had fevers aches ect but the doctors only started to take my concerns seriously after I got the optic neuritis and my left arm lost all feeling. I know it sounds funny but I was more relieved than upset to get the diagnosis.
Meg I too thought I had MS but had MRI and my brain is fine. They didnt take me serious either, they actually treated me like I had a mental illness. They kept pushing antianxiety meds at me, I was even beginning to think I was crazy too. My husband even doubted something was wrong. Jacka$$es!!! can you tell Im still a little pissed off. Its so wrong what happens to us. I was relieved, but I knew deep diwn inside that something was seriously wrong however I wasnt prepared for what I heard. I have been through an emotional rollercoaster, grieving for the “old” me while I feel better and acceptance is coming I dont know if I will ever be the same. Things like this change people, if you go through the emotional parts just remember that is a normal part of the process. One of the members here Ann has been amazing in helping me cope with the emotional aspect. If there is anything you need help with come here everyone is so helpful and really care. They have made me feel like Im not alone.
Usually a rheumatoligist sees Lupus patients, but then they farm us out to whatever kind of specialist we need. Currently I have a neurologist and pulmonologist in addition to g.p and rheumy. I am also in counselling to help manage pain and stress
If I could have known at the very beginning the magnitude of the effect food has on my pain, I would have wanted to know that a lot of Lupus people have an intolerance to dairy and gluten. Once I stopped those two food groups I have gone from using a Walker to get around and taking pain meds ever night to walking on my own and hardly ever needing pain meds.
don't know if it is true for everyone--but it has turned out very well for me
Yes, food has mega effects on me! I am allergic to the Night Shades, which was one of the first allergies I was made aware of. Then shellfish, coffee, alcohol, sugar. (That last one is tough to avoid, I love my goodies!) I am also allergic to chlorine, so have a chlorine filter on my shower. Most of our water evaporates the chlorine, since we store our water in our own tanks. But, whatever is left is filtered out. I was bad just last week, ate some french fries for lunch, and really paid-was up for hours during the night, and felt really hungover during the entire next day. No more french fries for me!
janice said:
If I could have known at the very beginning the magnitude of the effect food has on my pain, I would have wanted to know that a lot of Lupus people have an intolerance to dairy and gluten. Once I stopped those two food groups I have gone from using a Walker to get around and taking pain meds ever night to walking on my own and hardly ever needing pain meds.
don't know if it is true for everyone--but it has turned out very well for me
Wow, this just reminded me that my Dr at the time, (past tense!) tried to get me to take those SSRI drugs too! Nothing doing, said I! I changed Drs over that. I am not crazy, just tired! He thought I seemed sad, because I had to give up my job, as the BOD at my company changed, and wouldn’t allow a disabled person to work there anymore. DUH! Of course I hated to give up my job, and was a little sad about it! Didn’t mean I needed to be on crazy people meds! What an idiot that Dr is. I too, am obviously still pi&&ed about it. LOL!
Fairykissez said:
Meg I too thought I had MS but had MRI and my brain is fine. They didnt take me serious either, they actually treated me like I had a mental illness. They kept pushing antianxiety meds at me, I was even beginning to think I was crazy too. My husband even doubted something was wrong. Jacka$$es!!! can you tell Im still a little pissed off. Its so wrong what happens to us. I was relieved, but I knew deep diwn inside that something was seriously wrong however I wasnt prepared for what I heard. I have been through an emotional rollercoaster, grieving for the "old" me while I feel better and acceptance is coming I dont know if I will ever be the same. Things like this change people, if you go through the emotional parts just remember that is a normal part of the process. One of the members here Ann has been amazing in helping me cope with the emotional aspect. If there is anything you need help with come here everyone is so helpful and really care. They have made me feel like Im not alone.
Should I ask for allergy testing? How did you know you had allergies or intollerances to foods? I know that gluten makes me feel sick but I tested negative for celiac so I guess it is a sensitivity?
Hi, Meg! Welcome to the group! I’m a newbie also (Aug. 31, 2011), mine effects my joints but the fatigue is what reallu gets to me. I’m also still learning & trying to answer questions but I can tell you that I also experience costocondritis & it’s very painful & annoying!! As a matter of fact I just went to the dr today for it because it has spread & I was concerned that it could be something else. My dr gave me presciption strength naproxen. I had been taking 2 over the counter aleve twice a day & that just wasn’t taking care of it. She offered steroids for the inflammation but I avoid those all I can. I would suggest asking your dr what they suggest you take for it just to be on the safe side. Prayers for you!!
I sure recommend getting food allergy testing. You should probably get a whole bunch of allergy tests done.
MegLupusNewbie said:
Should I ask for allergy testing? How did you know you had allergies or intollerances to foods? I know that gluten makes me feel sick but I tested negative for celiac so I guess it is a sensitivity?
I too am newly diagnosed, in June. I was ok one day and the next I was very sick. My first symptoms were numbness, they actually thought I had a stroke. I couldnt balance I was walking like I was drunk. The neruo symptoms have been the scariest.