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Undiagnosed. Between Rhem. appts, need to vent.

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Old 03-20-2013, 04:38 PM   #1
Join Date: Mar 2013
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NikkiNatasha HB User
Undiagnosed. Between Rhem. appts, need to vent.

Hi everyone. This is my first post. I haven't been diagnosed with lupus but my rheumatologist suspects it. I don't know if I should be posting here since I haven't been diagnosed yet but I really need to vent.

For about six years (maybe longer) I have been experiencing a ton of weird symptoms on and off. I kept going back to my family doctor for each individual one, not knowing they could possibly be related. Flu-like symptoms with fever but no flu; sore throat with no other cause; rashes on arms with seemingly no cause; EXTREME fatigue; joint pain, stiffness and swelling; hair loss; dry eyes; chest pain; mouth sores; serious brain fog, trouble finding words and remembering things; headaches and just generally feeling horrible all the time... after about four years my family doctor diagnosed me with fibromyalgia, and prescribed me amitriptyline. I am a personal trainer and live a very active life that was being seriously affected by how I was feeling... he told me to accept this diagnosis and change my lifestyle. This didn't sit well with me so I made another appointment and told him I would like to see a rheumatologist.

Within ten minutes of seeing me, the rheumatologist said I most certainly did not have fibromyalgia. I have been seeing her for 7 months now and she has sent me for a bunch of tests... all coming back normal except for a positive ANA (tested three times, positive every time) and anemia (despite being on iron pills). She also detected a heart murmur and sent me to a cardiologist. Turns out I have a valve defect with regurgitation. She also sent me to an opthamologist and I have very slight dry eye.

The test results are not matching how I'm feeling. I will be relieved if I don't have lupus but there has to be a reason for how I'm feeling. My rheumatologist says that there's definitely something going on and lupus is "flirting" with us.

I have a three-year-old daughter and my symptoms got severe when she was about five weeks old lasting until she was about a year old. (they are back on and off now but that period after my daughter's birth was the worst stretch of severe symptoms I've had). I had no idea what was wrong with me and thought it was normal for being a new mom... normal sleep deprivation feelings and hormones. Now that I look back, it wasn't normal. I feel like I missed out on the first year of her life, and I feel like now my symptoms sometimes hold me back from being the active, fun mama that I know is inside of me.

I see my rheumy again in May and she said at our last visit that she was going to start me on Plaquenil. So I'm hoping that makes a difference.

Thanks for listening/reading. There is no way to explain it to anyone (my husband, friends, parents, etc... most people who know me have no idea), the extent of how terrible I feel... so I came here. If you can relate, I'd love to hear from you.

Thanks. Nikki

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Old 03-22-2013, 05:08 AM   #2
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Re: Undiagnosed. Between Rhem. appts, need to vent.

Nikki, hi & welcome. Gee, I think this board is perfect for you to post on... but sorry that you're having the kind of problems that bring people here.

Have you seen the "sticky posts" (permanent info posts) located above the user threads? They have basic info & are a good place to start. You'll find lupus diagnostic criteria, symptoms, skin problems seen in lupus, etc.

I want to ask more about your arm rashes, if that's OK. The two lupus rashes that most doctors tend to know right off the bat are (1) discoid, which tend to scar and/or depigment, and favor the face, ears, etc.; and (2) the classic malar butterfly, across the ridge of the nose. Who knew---I sure didn't---that there are perhaps a dozen more lupus-specific rashes beyond those two?!

Like you, I had arm rashes, also lesions on my back. Lupus wasn't on my radar either, despite recurrent problems over many years that I now realize were probably early flags for developing lupus later on. (There's a "sticky" with "alternative criteria" that lists these early flags. I matched on most.)

My rashes didn't scar or depigment, or itch or hurt. For the first few years, they were only raised red papules---like juicy mosquito bites that didn't itch---that appeared, then faded. Then those same papules would recur but now EXPAND into perfect red circles with clear centers, then further expand into larger non-circular shapes. Then fade. A few months later, the whole cycle would start again. My rash was finally dx'ed as subacute cutaneous lupus erythematosus, the annular (targetlike) form. To confirm, I had deep-punch biopsies with immunofluorescent stain tests done by a dermatopathologist.

And there's a second SCLE rash that looks totally different. It's called SCLE psoriasiform (or papulosquamous), and it looks a lot like psoriasis (but isn't). Like the SCLE annular, it favors arms/back but can go more widespread.

People with the SCLE rashes can meet fewer than 4, 4, or more than 4 of the ACR criteria for systemic lupus. Like many with the SCLE rashes, I eventually tested positive for *anti-Ro*, the same autoantibody seen in Sjogren's syndrome. But this took awhile: my initial labs came back revealing nothing.

(Interesting that you mention dry eyes. That's a hallmark of Sjogren's, the other AI in which anti-Ro is seen.)

Weirdly, of the people who get the SCLE rashes, approx. 2/3 are ANA-positive BUT the other 1/3 remain ANA-negative---meaning the 1/3 are EXCEPTIONS to the "general rule" that ANA is positive in systemic lupus. This can confound doctors who aren't familiar with the SCLE "subset".

My rashes were extremely photosensitive, which is typical of the SCLE rashes. For me, UV brought on all my other symptoms, too, not just rashes. Plaquenil and sun avoidance have helped me a lot.

I was often B-12/Folate anemic. This cleared once I started Plaquenil. Now sun avoidance depletes my Vitamin D.

Hope something above rings bells, not that I wish any kind of lupus rash or lupus-like symptom on anyone, and I hope you post again soon. Sending my best wishes to you, sincerely, Vee

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