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beverly_butterfly
12-03-2008, 10:14 PM
Hello all! I'm going to be a crybaby if that's ok. I have been in so much pain since last Friday. I woke up Friday with every one of my joints hurting. My knees especially. And the wierd thing is my knees have never hurt before. I can barely walk and I have a 17 month old little girl to chase after. Lupus hurts so bad. I wish it would stop. I have an appointment with a new PCP on Friday. I hope and pray that she will give me some kind of NSAID. My idiot rheumy only prescribes the Plaquenil, and Salagen and restasis. I have sjogren's along with the lupus. My rheumy told me that he will only treat the diseases not the symptoms and my old PCP won't treat anything that he thinks is lupus related. "That's the rheumatologist job". So I am praying that the new PCP will help me. I am in so much pain that I could cry, but I don't have any tears so what's the use. And I am so tired. More tired than normal. I don't know what is going on. I was diagnosed with lupus in May of this year. My rheumy never even told me what lupus or sjogren's was so I have no idea what a flare up is or feels like. Everything I know about both of issues I had to learn on my own.
Thanks for listening and sorry for being such a cry baby. No one else seems like they want to hear me complain again. It's nice to have people to talk to that understand what your going through.

sits_inthe_corner
12-04-2008, 05:36 PM
Awww hugs to ya beverly

Sounds like you are in a flare. Ice your knee joints for no more than 10 minutes at a time and buy yourself one of those cloth pull up sports knee braces. Buy one for each knee if both knees are hurting. That will help with chasing your whirly girly around.

You can alternate hot and cold compresses. Most people find the cold compresses work best.

Whining is not only allowed here, it's perfectly acceptable :)

KathyW1958
12-04-2008, 05:55 PM
Hi Beverly,

Welcome to the site. I hope that your new PCP will give you a prescription for an NSAID to treat the inflammation and pain that you are having. I think that it is sad that the Rheumatologist acted like that to you. He should have at least explained the illnesses to you. I hope that you keep posting and feel free to ask anything you like. I am sure someone will have an answer for you. Don't worry about complaining, because we all do that from time to time. Lupus is a horrible disease and sometimes you can not help but complain.

Hugs,
Kathy

Saysusie
12-04-2008, 08:24 PM
OMg!!! I have never heard of a rheumy who WILL NOT treat the symptoms. Half of the disease is THE SYMPTOMS!!! How on earth can you treat a disease without treating the symptoms!! AM I CRAZY OR DOES THIS SOUND INANE TO ANYONE ELSE????
These are some of the most common symptoms of Lupus:
* skin rash - Treatment for this symptoms is usually Plaquenil and/or Prednisone.
* pain and swelling in joints - treatmemt for these symptoms are usually NSAIDS, immunosuppressants, corticosteroids
* muscle aches - Treatment for this symptoms is usually NSAIDS, muscle relaxers, Plaquenil.
* fatigue - Treatment for this symptom is usually Plaquenil and/or Prednisone.
* hair loss - Treatment for this symptoms is usually Plaquenil
* lesions over the bridge of the nose and cheeks, and sometimes on the scalp. Lesions dry into scales that fall off the body, leaving scars (DLE only) - Treatment for this symptoms is usually Plaquenil, Prednisone, steroidal creams.
* Raynaud's syndrome (a condition in which a sudden, severe reduction in blood flow causes fingers to turn waxy, white and blue and painfully cold) -Usually treated with many drugs used to treat high blood pressure or angina pectoris.

Perhaps you should think about finding another rheumatologist. Because the symptoms of lupus vary not only in type but also severity, the treatment may also need to vary. It may take time to find the right combination of treatments for each individual. Treatments are prescribed in order to alleviate symptoms and to avoid flares. Treatment can include: rest, exercise, physical therapy for muscle weakness,
avoiding sun exposure, AND using medications such as:
anti-inflammatory drugs such as aspirin for symptomatic relief (note the word symptomatic), corticosteroid drugs such as prednisolone for inflammation (a symptom), antimalarial drugs such as chloroquine phosphate or hydroxychloroquine for rashes, arthritis and malaise (all symptoms), immunosuppressive and cytotoxic drugs such as Immuran (azathioprine) and Cytoxan (cycyclophosphamide) are prescribed with vital organs are involved and/or corticosteroids aren't effective.

As you can see, treating the disease "Lupus" involves treating the symptoms of Lupus! I don't see how you can do one without the other!

I hope that you can find a doctor who will provide you with adequate care and who is willing to prescribe treatment to relieve you from your symptoms.

Peace and Blessings
Saysusie

sits_inthe_corner
12-05-2008, 10:17 AM
Hey beverly_butterfly

How are ya feeling today?

beverly_butterfly
12-05-2008, 10:10 PM
I'm feeling a little better today, well mentally not physically. I'm still hurting and grocery shopping didn't help my poor knees at all. But on a happy note I went to the new PCP and was pretty pleased with her. She was quite shocked when I explained my whole situation to her. She couldn't believe that the rheumy won't treat the symptoms only the disease. She wrote me a prescription for Celebrex (yeah!!!). She asked me a million questions regarding my health. I told her that I have something wrong with my right ear, but every other doctor just puts it off to sinuses or allergies and low and behold she said there is something not quite right. My ear drum is retracted. So she is sending me to an ENT. She asked about my fluid intake with the sjogren's. I told her that I'm constantly drinking and have just recently discovered that I drink in my sleep. I'll go to bed with a jug of water and when I wake up in the mornings to get a drink its empty. She asked if I pee alot and I told her not really maybe 5 or 6 times a day. So she's going to test my kidney function. She said she wanted to start from scratch so she re-ran the ANA panel, sed rate, CBC, liver panel and some others I don't know. Plus she wanted to check me for lyme disease. She is definately thorough. I think I have finally found a doctor that cares. I'll keep everyone updated on her findings. And hopefully I can brag about how much better the pain is. I took Celebrex before. Just long enough for it to start helping before no one would give me another prescription.

I hope everyone else is doing well.

sits_inthe_corner
12-06-2008, 04:17 AM
YAH beverly!!!!!

I'm so happy for you, that's great. Finally a doc who listens and checks things out!!!!!!!

Good luck getting sorted out...I'm very happy for you.