View Full Version : New here

07-16-2007, 08:43 AM
Hi everyone

I'm not officially dx'd with lupus, but have been suffering for quite some time now with symptoms of some sort of autoimmune disease. By sometime I mean probably about 10 years.

Waaay back when I was dx'd with lyme disease and was told that I had an elevated ANA but that it didn't mean anything. I was treated for the lyme with antibiotics but it never did anything at all...and then they went on to tell me I had fibromyalgia. That was back in 95. The elevated ana only meant that the lyme probably caused it...okay. I don't remember ever being bit by a tic nor did I ever develop the bullseye rash. Never. I know not everyone gets it.

Anyways, the years trudge on, I have joint issues here and there, no big deal. No one really does anything for me. Then five years ago...BAM I get hit with a serious fever, and later on in the evening I start getting pain throughout my chest. Felt like pneumonia to me. But what was weird was that it was much much more. I had pain throughout my body that was unexplainable. Fevers cause aches. My joints all through out my body were so wracked with pain I had to have help getting up out of my reclining chair. It was horrible.

Went to doctors, er, 6 different antibiotics, chest pain never went away. Had EKG's done, chest xrays that only showed some fluid around heart and some fluid in lungs with some scarring and enlarged lymph nodes.

Got on board with a pulmonologist who though maybe lyme was kicking back in. Nope that wasn't it. Sent me to a specialist for communicable diseases(lyme) and he could find nothing. Did a bunch of testing too.

Finally they said, the pain is in my head. On deep breaths I had such terrible pain it was unreal. No one cared or wanted to hear me.

I finally had a mediastinoscopy and that did nothing. They thought possible sarcoidosis...what a pain.

Now I'm seeing a rheumy, have been on plaquenil for almost three years and here I am back in a huge awful flare that only prednisone is helping. I dont' even know what is wrong with me if I even have lupus. I get the butterfly rash on my face, but it's rosacea. So thats not lupus. I get it really bad when I go out in the sun or am exposed to intense heat, shower etc. I also had it this time around with my fevers when my flare set in. What the heck?/

The only thing in my bloods that came back elevated were my sed rates. I don't get it and probably never will. But as long as my rheumy beleives me and keeps medicating me and helping me That's all that matters. I can't take the pain any longer. I don't get a lot of fevers, but the first time I flared up five years ago and it never went away I was getting a lot of them.

This time around the flare hit me weirder. I was , I admit it stressed over a lot of different things that were going on. I think that and the fact that I was in the sun more than usual brought on an attack.

This time around what happened was the last week in june I started with waking up one morning with pain in my thumbs, then the next morning it was my hands, then the wrists and then waking up with fever and pain into the elbows...make any sense? Then one morning got up all pain and fever was gone all on it's own...but guess what? It came back like two weeks later and hit me hard and fast...fever and chest pain without the joints being hit. How does this make sense? Does it sound autoimmune? I have no clue anymore.

Right now I'm on plaquenil and 60 mg of predinsone. I also take in halers and have a nebulizer, I also take blood pressure meds and nexium.

Anyone want to talk or just offer advice, I'd love to hear from you.

Thanks for listening to me


07-16-2007, 01:39 PM
Hi MissLisa1017!

Welcome to the Forum! :D I'm glad that you found us! :D

Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!

I have a Nebuliser at home too and am also on inhalers and steroids for pretty bad Asthma. I suffer from chronic Costochondritis as well and I've had nine chest infections (including six episodes of Bronchitis, Pneumonia, Pleurisy and Whooping Cough) in the last six and a half months! :shock: My doctors are very worried because my lungs can't cope with this for much longer... My doctors don't really know exactly what's wrong with me either, but they know that there is definitely something Auto-immune going on (the Rheumatologist was considering Behcet's). I have been diagnosed with Sjogren's Syndrome, Raynaud's and Cutaneous Lupus Erythematosus for the moment (in the Rheumatology block; I have other auto-immune disorders as well).

Don't worry; most of us have heard the "it's all in your head" story WAY too many times to count! :mad: Stupid people! :mad: They don't want to admit that they don't really know what's wrong, so they tell you it's all "in your head"! :mad:

Keep well and feel better soon! :)

07-20-2007, 06:44 AM
Hi, Lisa. So sorry your road has been rough. Diagnosis is so difficult, and it can take years for doctors to finally agree that the symptoms present are enough to say 'lupus'. Check out the Lupus Foundation of America website and click on 'diagnosis.' www.lupus.org It'll provide you some info on what to expect. I, too, had symptoms and problems for years and years before a major flare finally caught the attention of a clever young doctor who looked back in my history and suspected autoimmune problems. I'm much better now, but am still on lots of meds.

I hope your meds are controlling your symptoms. Sometimes the meds themselves can cause a lot of side affects that seem almost worse than the illness. Be aware of what they are so you can tell your doctor if you are having those side affects. Sometimes a shift in meds can help.

Please drop in to this board often - you'll find lots of helpful people here who will try to answer questions, or just be supportive.