How long will this go on?
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robertafive posted:
According to my PCP, he thinks I have had lupus for years (all my drs think that actually) But it wasnt until Nov '09 that I began to swell in all my joints and I had such bad pain all over. Nothing was helping with the pain. After one blood test in Jan '10 I was immediately diagnosed with lupus. The pain is almost always there. I can get it under control at times but if I slack on my pain pills then I spiral down back to were I started. The rheumatologist says that my inflammation levels are some of the highest he has seen. But even on 30 mgs of pregnisone it doesnt go down. Since this is all new to me I am just curious, is this what I have to expect for the rest of my life? Or is this just a really long flare?
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jessi19661 responded:
Hi Robertafive. I am sorry to hear you are going thru this in this way! It is very similar to me and my symptoms.

I also have swollen joints, lupus rash on my face, different skin problems everywhere, I swell up too, even my face, all the time. And the joint pain, arthritis, and tendonitis. It is horrible, hard to control, and for me it has stayed for over 2 years there has not been one day without pain and different problems everyday with this disease.

What I can tell you, is that for me, this is lupus, on an everyday manner, not a flare lasting forever. A flare is when my symptpoms all suddenly increase to an intolerable level. A lot of the time brought on by an infection, cold, or stress and overdoing it for me! You need to try to find a balance of activity level that allows you to rest whenever needed, be it only 20 mins. And not too much rest, or too much activity. And it is different each day. Starting with a 15 min hot bath I am able to do a lot better with a lot less pain. My #1 ti[ for you.
Good luck, and we are here for ya. You will adjust to your new life, and maybe you will feel better some day. jessi
 
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jessi19661 replied to jessi19661's response:
"Starting with a 15 min hot bath I am able to do a lot better with a lot less pain. My #1 ti[ for you"...

Oops- I meant to say,"my #1 TIP for you"...

:)
 
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pugpuppy responded:
Welcome, i am so sorry you are in so much pain. I invested in a paraffin wax spa, you can order it on line at walmart health and beauty area for as low as $25.00 and it helps my hands alot, it feels great!! It isn't easy to learn to deal with a new way of living, just take it day by day and try not to let it get you down.
waves of hugs sent your way
There cannot be a crissis next week. My schedule is already full. Henry Kissinger
 
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squirmy1963 responded:
oh you will have times of wellness. That's what get's us thru the pain, knowing it is temporary. But you will likely have recurring episodes without any forwarning. Continue to make plans and live life the best you can, and when your sick and have to cancel, you will find out who your real friends are. Stick with the compassionate ones, they don't need to understand, who does?? But have that support from the good people, and forget the others. And keep drama a stress to a minimum. Rest when you are ill, exercise lightly when well, it will help. And that pain you have with swelling, get cortisone shots before it gets too bad. I waited and ended up with a contracture that took months of therapy to straighten out my arm again.
 
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jessi19661 responded:
Squirmy said it better than I. She is a very smart one, take her advice. She has been thru soooo much and is very strong and WISE.

I am also in the type of severe flare, with the joints all swelled, horrific pain, and 30mgs of pred just barely holding it back, not getting it though.

They always say when in a flare call your doctor. I called my PCP because my rheummy is far away and I have appt next week, but I finally knew it couldnt wait when I could not walk. He helped me alot and it was well worth it. He increased my pain meds, doubled them actually. It is already much more bearable. I have to totally rest for the next few days --not do anything-nothing. And call if not a lot better by Monday. I am also still learning what to do with this illness, but I think you should call one of your doctors to let them know how bad you are. Hugs, jessi
 
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jessi19661 replied to jessi19661's response:
I should say he spent a lot of time speaking about lupus and how it works and just a lot in terms I could certainly understand. He even reassured me if I ran oout of pain meds he would not let that happen, so dont stress over the meds, he said, There are times we nee MORE care and meds to make it thru a flare, but it will not last foreverr. I gotta call him and let him know how I am tomorrow, I already think I am on the road back to "my normal"............YAY! Good docs are out there, but I am finding they are the older, much more experienced ones have helped me most, and they LISTEN.
nite nite