If not Lupus, then what???

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New Member

Date Joined Feb 2011
Total Posts : 3
   Posted 2/21/2011 11:33 AM (GMT -6)   
I am new to this forum, and I will try to condense everything that I have been through regarding my "issue".
Four years ago I woke in the middle of the night with chest pain, it hurt too much to breathe! At the time I was 49 yrs old. I went by ambulance to the ER. Cardiac work-up, (showed normal), they did a cardiac cath anyway. Spent 2 wks in the hospital having tests and basically just pain management for what they called "plueritic pain".(IV narcotics). At the time I saw every specialist in the hospital. Rheumatologist said that I tested positive for Lupus, but re-did the bloodwork because it was "borderline". He confirmed at that time that it was Lupus and started treatment (Plaquenil, etc.). However, my Primary Dr said that he wasn't convinced that it was Lupus and he also diagnosed with Fibromyualgia.
Now, 4 years later; I have spent at least 5 weeks per year in the hospital for the same symptom (chest pain so intense that it's impossible to breathe). I have most symptoms of SLE, the only exception is the "butterfly rash", but intermittent rashes everywhere else! I realize that many of my symptoms could be attributed to Fibromyalgia, but my Rhuematologist still says Lupus and my Primary says no! I am so confused and frustrated. Of course it goes without saying that I don't want to have Lupus, but who do I believe? End result for me is obviously when I get a flare-up that I am treated and back on a somewhat road to recovery. I told my Dr's that I always feel like crap, it's only when I feel like death that I seek help LOL.
Well, now that I've given the long version of my condensed version (LOL), my question is, if not Lupus, could it be just Fibromyalgia? If so, is pleuritic pain such as mine common? What else could it be.....are my Dr's missing something???
Thanks for reading my 1st post!

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 2/21/2011 1:15 PM (GMT -6)   
One general rule that a lot of doctors seem to agree on is this: Predisone improves lupus pain, but increases fibromyalgia pain. Also, Lupus generally has a positive ANA and it's complements, fibromyalgia generally does not.

Otherwise, I would tend to trust a rheumy over a general practice dr as rhuemy's are the ones specially trained in lupus & it's treatments. However, the dx is not as important as you receiving help. (And you may have both lupus & fibromyalgia.)

Have they checked for Costochondritis (Tietze's Syndrome) - it's an inflammation of the cartilage in the chest. Several of our members have had it and it becomes very painful to breathe.

Hope you find pain relieve soon, even better to find the cause & outwit it!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

New Member

Date Joined Feb 2011
Total Posts : 3
   Posted 2/21/2011 1:27 PM (GMT -6)   
Thank you Lynnwood! Now that you mention Tietze's I seem to recall at one point my Dr mentioning it. I have an appt. tomorrow (after just getting out of the hospital on Saturday). I am definitely going to bring it up to him and never would have remembered that if not for you!!!

Regular Member

Date Joined Aug 2006
Total Posts : 142
   Posted 2/22/2011 9:14 PM (GMT -6)   
I have had similar problems with one doc saying one thing and another saying something else for the past 8 years. I havent really pushed the issue as long as I am getting treatment. You are opening a whole can of worms by having a diagnosis of Lupus with insurance companies! I really have just been working with my rheumie to get good treatment, as many AI diseases have similar treatments anyhow. Does the plaquenil help? They can monitor you by your symptoms and see what medications work for you. Many people with a diagnosis of Lupus (or Fibro) have to go through months and years of seeing what medications work for them as well!
Seronegative autoimmune arthritis
Currently taking Tylenol & Ultram (due to pregnancy- due August 2011)

New Member

Date Joined Feb 2011
Total Posts : 3
   Posted 2/23/2011 10:13 AM (GMT -6)   
Thanks Snickerdoodle. I have been through all of the tests, bloodwork, etc., as I'm sure that we all have. It's been about once every 3 months that I end up so bad with chest pain that I end up in the hospital and all of the tests are repeated. This last weeks hospitalization, I was of course treated with IV steroids and pain relief. I was also taken OFF of plaquenil (not sure why, I was out of it and didn't even ask why.....I know, sounds stupid of me). I was discharged on Prednisone but after today weaned off of that. I spent 4 years on Pednisone and it took it's toll with side effects (I've broken bones for no reason).
As for your question whether or not Plaquenil helped, I'm not the Dr but I'm guessing that it may have. Since coming home on Saturday, my chest pain is subsiding and manageable, but my whole upper body feels BRUISED to the point where I can't move. Even to take a shower - the water feels like it's beating me up, and to be dressed hurts (wearing a bra is even too painful!). I see my Dr tomorrow, so I'll see what he says about that. I'm hoping that it's because he took me off of the Plaquenil because at least then he could put me back on it and I'd get some relief. I can't function at all like this and I can't take it! I had learned to deal with all of the other daily symptoms as long as I knew what was going on. I have a lot of neuro symptoms that have developed as well (right side weakness/numbing), but all neuro tests show okay.
Wish me luck at the Dr tomorrow, and thanks for all of your help!
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