View Full Version : Scared and frustrated

08-09-2009, 04:34 PM
I stumbled across this site quite by accident.

I am a registered nurse who is ashamed to say I knew very little about Lupus (specifically the variations!) until my recent health issues.
Approximately 2-3 weeks before Easter week-end, I felt extremely tired (as though fighting off a particularly nasty virus) as well as having excruciating pain in my wrists and fingers, ankles and toes. Being a busy shift working mom, I was just happy to be able to get through my 12 hour shift and come home to throw a load in the washer and fall into bed.
My bubble burst at 12:45 a.m on Easter Monday. I woke up thinking I was having a heart attack the left sided chest pain was so intense! Immediately, I went into nurse mode and started assessing the probability of that being the case. After trying numerous things to ease the pain (taking acetaminophen and ASA --just in case it was my ticker!) I awoke my husband at 3 a.m for a trip to the ER department. Initial thoughts were it was cardiac, then pulmonary. A sketchy x-ray which looked incredibly clear (except for a small opaque area at the TOP of the left lung) lead the radiologist to diagnose a "possible pneumonia". This lead to a 6 night hospital stay on IV antibiotics. Chest pain never improved, no coughing. But HORRIBLE night sweats, necessitating nurses to change bedding. Then the joint inflammation became obviously noticeable to everyone. The doctor was still concerned about the "crackles" that were heard.
I was discharged with some pain meds, prednisone and told it was most likely reactive arthritis d/t the pneumonia! I know it was NEVER pneumonia. I instinctively knew it was pleuritis/pleurisy. The doctor remained unconvinced. A trip to a specialist (internist) lead to another tentative diagnosis of sarcoidosis (no symptoms other than the chest pain on inhalation and some shortness of breath).
All labs revealed at this point was an extremely high C reactive protein level of 98. A subsequent referral to a cardiologist to ensure no cardiac involvement.
Finally I start researching all the symptoms and voila! Lupus causes everything I am feeling! Fatigue - check! Joint pain - check, foggy mind - check! Memory loss - check! Mouth sores - check! and then, after going off the prednisone, the dreaded red rash!
I have tested the photo -sensitivity theory and that checks as well! Two days on the beach proved to give me two days of increased joint stiffness and more fatigue. Then discovered that the lights at work (all fluorescent) made me feel worse than sun....so sunscreen to work!
All this has led to me being off work for 4 months and returning to work not feeling 100%.
Most recent labs have shown an elevated ANA and elevated CRP once again. So we have drawn for the ANA sub tests. Hopefully a definitive diagnosis is in the near future.
In the meantime, I am taking Celebrex 200 mg twice daily along with Prevacid 30 mg daily. I have just begun taking Plaquenil 200 mg twice daily and feel like I have made a deal with the Devil himself d/t all those side effects. I have recently returned to work and hope that I can manage on all fronts. Now I wait for those test results as well as for October to roll around to see the rheumatologist for an initial assessment.

Thank you all for being here and allowing us a place to gather and share!

Angel Oliver
08-10-2009, 03:48 AM
Im sorry to hear of all your pain and ER visits but so glad you are now on the correct meds to help you through this. Im so glad you found us and welcome to this wonderful site full of caring,compassionate and very knowledgeable members.Thanks for sharing your story and let us know what they say in October.Take it easy if you are able to at work.You are now NOT Alone,we will supprot you always.

love and gentle hugs

08-10-2009, 10:22 AM
So sorry for your struggles. It can take a long time to get a diagnosis, as lupus can mimic so many other illnesses. It is frustrating. Hang in there. Give the plaquenil some time to work. Hopefully, you will see some improvement in the fatigue and joint pain by the time you have the October appointment. In the meantime, you will find lots of loving, supporting people here.

Take care,


08-10-2009, 06:22 PM
Boy do I feel like I am reading parts of my life story in your story. Had a lot of similar steps. Just going through a Sarcoidosis diagnosis now too (had a bronchoscopy & mediasomethingoscopy this Weds), but I know that doesn't explain ALL my symptoms (ie: hair loss, light sensative, mylar rash) so I am betting that Lupus isn't too far from the near diagnostic future since, like you, almost all of my symptoms CLICK with Lupus. Really wish I were wrong, but we just know when it fits, don't we?
Like you, I also found this site by accident. It's wonderful here! Everyone is super friendly and supportive and full of great advice. Welcome!

08-10-2009, 08:47 PM
hi nursemeesh,

you have been on quite a whirlwind these past few months, and all while in so much pain...i am so sorry that you have had to endure all that is been happening. You should be proud of your diligence in getting a diagnosis....you have already learned to be your own advocate, and this is sometimes the hardest lesson for some people to learn, so congratulations.

Plaquenil side effects are very hard to tolerate, but i will tell you that they are short lived. hopefully you side effects will start to lessen very soon. And many people get a lot of relief from plaquenil.

i hope you start to feel better very soon....please keep us posted on your progress.

08-11-2009, 03:31 AM
Goodmorning Nurse Meesh,

I am also new to this fantastic family. Welcome and nothing but good wishes for you! I myself just started Plaquenil, so we'll find out together if it helps.

Love and hugs,

08-11-2009, 04:48 AM
Nurse Meesh,

Welcome...trust me, we ALL know how scared and frustrating it can be. I just started Plaquenil a few weeks ago, and am very happy with it thus far. I hope it works just as well for you!!

Enjoy the boards...I'm looking forward to getting to know you better!!