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Old 08-05-2002, 08:22 PM   #1
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Join Date: Aug 2002
Location: Calgary, AB, Canada
Posts: 2
bricks63 HB User
Unhappy Just diagnosed with Lupus

I have just been diagnosed with Lupus and I am not sure what to do. I am unable to work due to the pain and swelling of my hands, wrist, knees and feet. Both my arms from my shoulders to my elbows to my wrist and then my fingertips are swelling and cramping. I feel like when you foot falls asleep and you get the pin and needle feeling. I get this all day long. Sometimes I think I am OK and then I am exhausted and then my arms start to swell up. Is this the early stages of this disease? I have been complaining about not sleeping, hands and feet swelling and feeling depressed. They just thought I was going through a depression stage, then I had control of that and then my body started to quit. What is next? What do I do? I was a very active person before and now I am unable to do stenous things. If you know more about Lupus and the stages and how I can help myself through this please write me back.


 
Old 08-06-2002, 06:01 AM   #2
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Join Date: Apr 2002
Location: Atlanta, GA , US
Posts: 311
scbagrrrl HB User
Question

Hi Brick -
I'm sorry you've been saddled with the Lupus diagnosis and all that you are going through. Got a bunch of questions for you...

First of all, how old are you? You mentioned "they thought it was a depression stage" - who's they? What sort of doctors are you being cared by? Do you like them/feel comfortable with the care you're receiving? Have they witnessed the swelling occurances - how long has that been going on? What sort of meds do they have you on? How long have you been on the med? Has your doctor reviewed any OTC meds/supplements you're taking? Made any suggestions about modifying your diet? Do you eat well - what about caffeine, sugar, water, junk food? Any sort of regular exercise? (I know, there are days you don't feel like brushing your teeth)

I understand your frustration with the fatigue and feeling like a shell of the person you used to be. I was diagnosed 3 years ago this month. You will have good days and sometimes you'll have bad days. It's essential to take care of yourself - the worst thing you can do is let stress get to you - number one thing to make your disease go haywire.

This disease is not a death sentence - it's a disease that can be managed somewhat and most of the time, you can live a relatively normal life. The key is having a great partnership with your doctor, take your meds, take care of yourself, body and soul, and have a good support system around you.

There are lots and lots of resources for you to read up on the disease. A good place to start is the Arthritis Foundation (arthritis.org) and the Lupus Foundation (lupus.org). You may want to see if there are any local offices near you - they often offer a lot of support, information, and resources. Once you're up on the "basics", many of us can recommend more places to read.

Keep us posted - we'll try to shed as much light as possible.
<hugs>

 
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Old 08-06-2002, 04:33 PM   #3
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Join Date: Aug 2002
Location: Calgary, AB, Canada
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bricks63 HB User
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Thank you for your reply. I will be 39 yrs old next tuesday. When I was talking about "they' I meant my doctors from the same office. I have seen three from the same office and another doctor for another opinion. But he didn't do any research, check me or request my test results. I am being referred to Dr. Abu-Hakima a rheumatic disease specialist in September. I have been to a active release treatment doctor, but that was for fibromyalgia and I am worried about permanent deep tissue damage. The doctors did some more findings and my DNA test came back positive with Lupus. My sympotoms have been bothering my since last year. I am on Naproxen, amitriptyline, Prevaid(Lansoprazole) and novo-hydrocort 1% cream. My doctor has said to up the dosage for amitriptyline, because I am unable to sleep again at night. and to increase my Prevaid, because I get upset stomache aches.
Well my diet is usually very good, but now I no appetite. The doctors has told me to stay away from salty foods, shelled seafood, red meat(whatever that means)alcohol, and something else, which I can not remember. My memory has become like swiss cheese and I forget things, unless I write it down.
I was very inflammed on Friday. I was unable to move my upper half and my knees, and feet swelled too. I was rating my day today as a 5/10, but now after 5pm I can feel my feet swelling, wrist and hands swelling too.
My doctor says I am in the early stages and to watch what I do because the late stages is kidney failure. Is this what I am to expect? What can I do, I am not able to work. One day I am fine the next month I am in rough shape. Please write and inform me with whatever information you know.

Thanks

 
Old 08-09-2002, 08:08 PM   #4
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Join Date: Aug 2002
Location: Maryville, TN USA
Posts: 1
TN Girl HB User
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Hello, I am sorry about your poor health. I am 37 years old and was diagnosed with lupus last October. The rheumatologist immediately gave me a steroid shot (wonderful!) and then started me on a low-dose steroid plus Plaquenil which is a long-term med. She then had me take a 24-hour urine test which showed high amounts of protein (1500 and it should have been under 200) and so got me an appt. with a kidney specialist (nephrologist) and he did a biopsy which showed some kidney damage. I am on Imuran also but expect to come off that pretty soon, I hope. And I hope to come off the steroid (Dexamethasone). Please keep aggressive with your doctors and getting answers - I know everyone is different but I am in hardly any pain now and before I could not get out of bed sometimes because of swollen joints and had no energy to play with my daughter. The internist I used to go to just told me to take Advil! Good luck!

 
Old 09-22-2002, 07:27 PM   #5
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Join Date: Sep 2002
Posts: 5
Friends HB User
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I found out that I had Lupus last November. I was very scared but I didn't have time to deal with it because I was too sick at the time. Lupus is a very frustrating disease. I am 34 and I get so angry sometimes because I just can not do some of the things that I want to do. But I am trying to learn to deal with it. I pray alot and ask the Lord for daily help.I have the pins and needles feeling alot. Sometimes I also tremble and vibrate inside of my body which is very frustrating.I am learning to do the best that I can,but it is not easy. My Grandma has Lupus and she is 76 years old. She was diagnoised around 9 years ago. I do believe that she has has had active lupus at other times in her life do to past symptoms. SHe is a very good role model.SHe has had a rough time,but continues to keep the faith!!!!! I wish you the best. Try to learn as much about lupus as possible and you may want to purchase Dr. Daniel J Wallace's "THE LUPUS BOOK" it is very helpful!! GOD BLESS!!!!

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Wendy
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Wendy

 
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