new to lupus, scared

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julie83
New Member


Date Joined Mar 2014
Total Posts : 11
   Posted 3/1/2014 2:25 AM (GMT -6)   
Hi. My name is julie and I am on here for the first time. I recently had some blood work down due to swelling in my hands and sharp pain in my feet. I got the results back a few days ago and so far its looking like lupus. I am scared, and a friend of mine sent me a link to this website so I thought id see if maybe this could help me thru this difficult time.

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2608
   Posted 3/1/2014 2:17 PM (GMT -6)   
You're among friends who understand. I suspect thet most of us have experienced the trepidation you're feeling, and we'll be there for you while you go through this.
SLE, fibro, renauds, restless leg?

julie83
New Member


Date Joined Mar 2014
Total Posts : 11
   Posted 3/1/2014 2:20 PM (GMT -6)   
Thank you so much patty. I feel so alone with all of this. I keep getting results and everyone seems to be worse and worse. How long since you were diagnosed? What symptoms did you have to start out if u dont mind me asking.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/1/2014 3:00 PM (GMT -6)   
Welcome to HW.
I've been diagnosed for over three years. I was where you are when first diagnosed. It's overwhelming at times wondering what's next. I try to do it one day at a time and don't fret over the future.
It's not a death sentence, just a readjustment in our lives...

Are you covering up from the sun and fluorescent lights? about 60-70% of us are photosensitive. You can find protective clothing at coolibar.com.
UV rays make me feel worse.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

julie83
New Member


Date Joined Mar 2014
Total Posts : 11
   Posted 3/1/2014 3:19 PM (GMT -6)   
Thank u for sharing ;) I live in Washington state so we are in the rainy season right now. Right now im dealing with swollen hands and really bad pain in my heals. My wrist's feel broken in the morning and my joints r so stiff for the first few hours im up, and when I get home from work at night. I tested positive for my ana test, my set rate was high, and so is my wbc. I have a few others tests that had high levels as well. I havent gotten the actual diagnosis of lupus yet but its all pointing to it. Any thoughts on my labs?

julie83
New Member


Date Joined Mar 2014
Total Posts : 11
   Posted 3/1/2014 3:20 PM (GMT -6)   
I forgot I also have really bad fatigue. My energy level is about a 4 out of 10.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/1/2014 4:10 PM (GMT -6)   
Sounds familiar....
Today my hands are swollen and I have various joint pains.
Once you get on medications the fatigue will ease some. There's always some pain and swelling going on though.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 3/1/2014 4:36 PM (GMT -6)   
I live in the very northern part of California, on the coast, and I can totally relate to what you are feeling. My symptoms are worse when it gets rainy and cold. I felt pretty miserable on Friday as the barometer was dropping and the rain finally came. With me, it's my hands and feet mostly. Lots of arthralgia and stiffness. I don't have as much swelling as I used to have. And the fatigue. It can often kick my butt, especially after a stressful week at work. You have wonderful support here and lots of people who understand. I love it here....and even though I don't see these people, I feel their love and healing energy.

Laura

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2608
   Posted 3/2/2014 5:02 AM (GMT -6)   
Julie83, I was diagnosed 8 or 9 years ago. Your symptoms sound much like mine. Joy's right that being on the right meds will help. Lupus can be a very isolating disease, which is why the support you'll receive here is so helpful. Keep us updated on how you're doing.
SLE, fibro, renauds, restless leg?

julie83
New Member


Date Joined Mar 2014
Total Posts : 11
   Posted 3/2/2014 1:55 PM (GMT -6)   
Tha k you all so much for all the support. Its nice to talk to people that understand how im feeling. It gives me hope that I will be ok. ;) I find out ttomorrow hopefully the full diagnosis. Im so nervous

julie83
New Member


Date Joined Mar 2014
Total Posts : 11
   Posted 3/2/2014 2:02 PM (GMT -6)   
So how old were u all when u were diagnosed? I just turned 31 2 weeks ago but have had symptoms for like 10 yrs. Just recently they have gotten worse.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/2/2014 3:19 PM (GMT -6)   
It was just two months before my 42nd birthday when it hit me bad. I felt like I had been stomped on by a whole football team. For a year before I had been feeling off but I just chalked it up to working too hard.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 3/2/2014 3:23 PM (GMT -6)   
I was diagnosed in 2002, at 44, after having severe fatigue for about 2 years.

Before that I owned my own software development business (not a home consultant, a real company with real employees!), ran marathons, and was doing the final research for my PhD...wasn't a lazy person by any means!

It got worse before it got better - aches, pains, burning in joints, and worst of all, measurable cognitive dysfunction. Couldn't drive a car safely or follow a 20-minute sitcom. I was on plaquenil and prednisone from the start. Next are the 3 regular meds - Imuran, Cellcept, and MTX. Imuran did nothing for me personally and Cellcept was my miracle drug that gave me back my brain; so I didn't have to try MTX. Slept, rested and hurt my way thru the 2000's.

Today I am med-free. Not able to manage a company or run a mile nor finish my PhD, but my brain is back and physically am doing fairly well.

So, in short - it can get better, it can get worse, some meds that help others won't help you, some meds that won't help others will help you. It's a disease of 10,000 faces -- every case is different! -- so getting a good match in a rheumy is essential, as you may be working together for a while.

Good restorative sleep (you may need a sleep study or sleep medication, esp. if you are on prednisone), fairly healthy eating (regular, balanced, nothing extreme), and regular mild exercise (maybe just a daily walk to the mailbox) can help a HUGE amount.

Be careful with OTC meds/supplements - despite what the marketers say, they may be counter productive with your body and your personal med regime - always check with your Dr first, including if you drastically alter your diet.

Stay calm & don't panic!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

threegirls
New Member


Date Joined Mar 2014
Total Posts : 1
   Posted 3/3/2014 5:24 PM (GMT -6)   
Hi Julie,
I wish I had found this site when I was first diagnosed. I was diagnosed with Lupus on 11/26/13 and my world has been filled with millions of questions. So, I understand the fear of this new diagnosis. In hindsight, I think about the symptoms I had prior to being admitted to the hospital for shortness of breath. I know my body and I went to 5 doctors about unexplained itching, dizziness,anemia, swelling in ankles and feet, and shortness of breath,no resolution. I have learned that Lupus is very difficult to diagnose,but I felt like,especially with anemia, why not do an ANA test. I want people to know to push for answers, especially if you know that something is not right. I was told by pcp that I was depressed and this was why I was having these symptoms, so she prescribed meds. The next day I was admitted to the hospital for pericarditis (fluid around the heart), this lead to the discovery of lupus. Be patient and asks lots of questions :)

Bree38
New Member


Date Joined Mar 2014
Total Posts : 3
   Posted 3/5/2014 12:21 AM (GMT -6)   
Hello everyone. I have been having a lot of problems. A few of my symptoms are extreme fatigue and I take adderall every day. I have painful swollen joints. I have swelling in my hands, feet, ankles and knee caps. I get a red rash on my face that I was told was roseca. I have had a lot of hair loss. I have problems it my toes and tips of my fingers turning purple and white and being very cold. I am unable to keep them warm it seems to be they are always like this but I have great pulses. I am very forgetful. I have dry eyes and mouth. And I just started menopause 2 yrs ago due to a complete hysterectomy. I had my doctor to order some labs and they cam back as:
AST: 11 Low
CRP: 9.5 High
ESR: 25 High
ANA Titer: 1:160 High
ANA Pattern: Homogeneous

I really thought this was Raynauds. I see you guys here are very willing to help. I am scared and worried Any information will help. Thanks

julie83
New Member


Date Joined Mar 2014
Total Posts : 11
   Posted 3/5/2014 12:30 AM (GMT -6)   
Hi bree. Im so sorry for what your going thru. I am waiting to hear back for my final diagnosis too. I know how scared and alone u must feel. People on here have been so great to me and have made me feel at home. Have u had an ana test done yet?

Bree38
New Member


Date Joined Mar 2014
Total Posts : 3
   Posted 3/5/2014 1:07 AM (GMT -6)   
Oh yeah my ANA was 1:160 and pattern was Homogenous. Sad part is I did clinical research for a rhematologist and Lupus was one of my study. We did get a new drug approved which I am very proud of cause now I may need it. I keep getting the run around from my doctors and sad part is I know how it works but I sure forget a lot when it is me.

julie83
New Member


Date Joined Mar 2014
Total Posts : 11
   Posted 3/5/2014 1:09 AM (GMT -6)   
I got my ana test back and it came back positive. How did u get ur titer test? My lab results didnt say that. So how did they diagnosis lupus?

julie83
New Member


Date Joined Mar 2014
Total Posts : 11
   Posted 3/5/2014 1:10 AM (GMT -6)   
I have my first rhuemothoid appt. On the 18th and im super nervous.

Bree38
New Member


Date Joined Mar 2014
Total Posts : 3
   Posted 3/5/2014 1:36 AM (GMT -6)   
I have not been diagnosis with lupus. I ask for them to do a ANA Titer being in the medical field and working with clinical research I know the test to do.

julie83
New Member


Date Joined Mar 2014
Total Posts : 11
   Posted 3/5/2014 1:38 AM (GMT -6)   
So have u asked them to do a full panel to see if its lupus?

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 3/5/2014 10:38 AM (GMT -6)   
Remember, lupus is NOT diagnosed by tests. It is diagnosed by having 4 of 11 symptoms, only 1 of which is the blood test. Check out diagnosing lupus in my signature.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/5/2014 3:22 PM (GMT -6)   
Welcome Bree,
Sounds like you're enjoying the thrills of Lupus right now. :-P

What medications are you on? Once the meds kick in a lot of the miseries you're feeling will fade some.

Make sure to protect yourself from UV rays. A lot of us are photosensitive and UV rays make us sicker. I'm very sensitive and have to wear special clothes to block all UV lights.
Sunlight, CF bulbs, Fluorescent lighting, Tanning beds, and halogen lights all emit UV rays. I can't be in the same room with a halogen bulb or I will feel so sick and weak.

Hang in there and stick around.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

ImaSURVIVOR2014
New Member


Date Joined Mar 2014
Total Posts : 4
   Posted 3/9/2014 3:02 PM (GMT -6)   
Hey. I was originally diagnosed with lupus in May of 2013. I was so scared. I had all the symptoms of lupus; swelling, fatigue, joint pain and even the rash on my face! When I first started taking my medication, I thought that it would get better but it did not! I felt worse! They had me on a high dosage of prednisone and it caused me gain a lot of water weight! I gained 15 pounds in 2weeks! The Celcept that I was taking, caused me insomnia and it was messing with my eye vision. I also had pain in my hands and feet. I was I this high dosage of medication for 6weeks! One of the worst 6weeks of my life because I didn't really know what was going on!

I eventually switched doctors once I got better insurance and I love my new rheumatologist. I recently went to the doctor and got blood work done and my results are great! They have now completely taken me off prednisone. I am just now taking plaquenil (200mg) and I am only on 1000mg of Celcept for a full year and after that year is up, I will completely be off Celcept.

I wrote all of this to say, DONT be scared. Yes, you will probably go through the same thing I experience when first taking the medication but that is just your body reacting to the medication. It will get better! My body only reacted like that for the first 6 weeks and after that I was fine! No side effects. I also suggest that you make sure you have a good rheumatologist!

julie83
New Member


Date Joined Mar 2014
Total Posts : 11
   Posted 3/11/2014 6:51 PM (GMT -6)   
So im wondering on an ANA test, what does the hep2 cell range indicate?
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