Newly Diagnosed with SLE Lupus

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ATM1965
New Member


Date Joined Mar 2008
Total Posts : 2
   Posted 3/2/2008 7:15 AM (GMT -7)   
This is my first time here and was just diagnoses with Lupus (SLE). Looking back at all the sx i think i've had this 10+ years. I've experienced everything from the tingling sensations up/down my arms/legs, memory loss, SEVERE joint pain, headaches, butterfly rash, vision problems, changes in behavior, IBS, life threating allergic reactions, SEVERE, SEVERE fatigue, protien spilling from my kidneys, the list goes on.
My OLD PCP (DR) would just treat the sx with the end results of me taking 10 pills to wake up with and 10 pills to go to bed with. I switched Dr's only to be diagnosed in a week with the new Dr.
IM UPSET/ANGRY and CONFUSED. Crying outload!
What am i in for? Im in a active flare up now. How long do they last, what will i feel when i start to come out of this? How often do they come back? How will i know another one is coming?  Please HELP i must find out!!!!
My daughter also was tested last year with a +ANA. She is a freshman in college, a chemistry/PRE-MED major. I need to become knowledgable of this journey I've been given. I will walk the walk but let me know the trail before my daughter has to wallk it with me. Please pray for me i'm trying to be strong.

Newly diagnosed with SLE, confused, scared and overwhelmed!
 
Breath.... This too shall pass!
Remember Yesterday!
Deal with the here and now today!
Look towards the future for tommorow!


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 3/2/2008 9:21 AM (GMT -7)   
HELLO: ATM1965
I'm glad you found the right doc.it useually does take several yrs. to be diagnose,and several docs. Mine starts when I have anxity, push myself to the limit,stress, sun. When you get on the right meds. you should see results. I still cry and get stress out. My docs. think I should be in thearapy, I'm just glad I found this sight, alot of info. here even if I don't post I read them. Sorry to here you were through so much. You will be in my prayers.
 
 
           
 
 
 
 
 
 
_______________________________________________________________
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Reglan,Protonix,Synthroid,Plaquenil,Quinacrine,Flexeril,Zetia,Zoloft,Xnanx,Celebrex,Abuterol,  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     
 
 
 
 


Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 3/2/2008 10:40 AM (GMT -7)   
Greetings! Welcome to HW. I am sorry we had to meet this way but lupus can be quite an experience for all involved. Unfortunately there are no definate answers to any of your questions. You are fortunate you found a diagnosis so quickly so that treatment can begin ASAP. We have a lot in common. My daughter is a sophmore in college and is a physiology/pre-med student. She, also, has many of the same symptoms as I had when I was her age and we are watching her closely since autoimmune disease seems to run in our family. She is actually going to intern with my rheumy this summer because she would like to become a rheumy herself.

There are many things you can do to take care of yourself so that you can avoid flares and to get over your flares more quickly. Sometimes, however, a flare can be stubborn regardless of what you do. I work hard to keep my stress levels under control, get enough rest, stay out of the sun, take my medicines exactly on schedule, make it to every doctor appointment and complete all bloodwork testing right away. I also call my rheumy a lot if my symptoms don't improve or if I sense a flare coming on. She is a great rheumy and her office staff is excellent.

As you become accustomed to your diagnosis you will be able to sense when things are just not right and you will know when you need to contact the rheumy. As the others introduce themselves they will share their tips, too. Keep informed and read all you can about lupus to help you feel more in control. The most annoying part of lupus is that it is basically in control and this can make you feel vulnerable. I have had many ups and downs myself for the past three-five years with this disease but the ladies and the guys here are fabulous for support and encouragement.

Find some time to check out the "Resources" thread at the top of the posts. This post is full of suggestions and information on how to deal with everything to do with lupus.

Good luck! My thoughts and prayers are with you!
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 3/2/2008 11:23 AM (GMT -7)   
Welcome ATM, so sorry to hear all you've been through, we all understand how this road can be frustrating (((((hugs)))). You have come to the right place, this place is filled with caring and knowledgeable people that are very willing to help one another.

What you are in for is a life long illness that will need your attention every day. As the others said it's very important to keep all doc & lab appts, take your meds, rest, eat right, stay hydrated, stay out of the sun and just simply don't over do it, don't push your self to the limit. I think that last one was the hardest for me. I have always been able to go go go and then all the sudden I couldn't. After being on the right meds for several years I am able to do more than before I was dx but still not what I once could, but I am ok with that. I can still do things just not all at once.

Flares can last a couple of days or a couple of months. I can tell I am going into a flare by mouth sores and GI problems as that is how lupus attacks my body. I will also have increased fatigue & joint pain but remember lupus is the disease of 1000 faces and no two people have the same symptoms but over time you will learn a lot about your body, how to listen to it and when you are headed into a flare.

What meds have the doctors put you on? It may take a while to get your lupus under control but hang in there and be patient. Communicate with your doctors about everything you are experiencing and don't be afraid to go into each appt with a list of questions and concerns. If you feel a med is not working for you let him/her know. How often are you seeing your rheumy? I go every 4 months and have labs every 2 months to monitor my liver, kidney function and CBC because of the Imuran and Methotrexate.

Bless your heart, I know this is very overwhelming but take a deep breath and feel free to ask more questions. Take care
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 3/2/2008 2:46 PM (GMT -7)   
Hi ATM and welcome. I see you have gotten some great advice from Audrey Ann and Stacie. It can be very overwhelming to hear that you have lupus and I very much remember feeling scared and overwhelmed when doctors mentioned it to me. We have some great lupus resources on this site - you can click on some of the links in my signature and find some good information.

Hopefully now that you have a good doc and a diagnosis, you will get put on a combination of meds that will help you get out of your flare. Try to be patient though, it can take a while, especially if you are in a bad flare.

I'm sorry to hear about your daughter and I really hope she does npt have lupus. My son, who's just 10 has a positive ANA and a lot of joint pain. Right now docs think it's probably juvenile arthritis, but there is also the possibility of a connective tissue disease.

Please ask any questions that you have and know that we are here for you if you are having a rough time. Take care and I'm glad you joined us.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 3/2/2008 2:57 PM (GMT -7)   
Hi ATM

Just wanted to welcome you to the forum. The others have given you some great advice. I'll just add that there is A LOT of information in the links at the end of my signature. As Audrey and Hippi have suggested "Lupus Resources" contains a lot of tips from all the members here.

Welcome to the forum!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


ATM1965
New Member


Date Joined Mar 2008
Total Posts : 2
   Posted 3/3/2008 12:45 PM (GMT -7)   

Thank you very much to everyone who stopped by and commented on my cry out load moment. I am a nurse and work in the operating room with some of the best neuro and orthodedic surgeons in houston texas, we specialize in Brain and spine surgeries. I was a oncology nurse for 8 yrs and used to tell my patients that the first day we would cry together all day if they wanted to, but if the showed up the next day it was to get down to business and start the biggest fight of there life. I just never thought that i would have to use my own words on me!

I am the type of person that can handly anything as long as i knew it was going to END!!!!!!  I haven't seen the rheumy Doc. yet for this. I seen him 2 yrs ago for the same sx but he tested me for RA and thats all. My PCP dr is the one who is following me until i can see him in April. Im currently on a coctail of meds.

Prednisone 10mgs (and crying/kicking with each dose); Wellbutrin my GI doctor said my stomach is in knots; Claritin and singular for my allergic reactions, OHH and i have to carry a epi-pen at all times due to anaphylaxic shock, Protronic and Zantac for my hiatal hernia and GERD, The PCP Dr. just took me off my hormones (Hysterectomy 2001) not happy about that eather. I Have IBS and take Miralax, Adderral for my unability to stay focused along with short term memory loss Im just a tired mess.

As i read the comments, questions and replies i ask how long and bad do i have this. All the symptoms i have are on the money plus protein spilling from my kidneys scaar tissue in my liver probably due to the numerous abdominal surgeries i have had. Its affected my nervous sx, unable to take a deep breath ETC. Will i still be able to work in my field with all these sx. ive noticed it is just getting worse. IM ONLY 42 YRS OLD!!!! Here i go crying out load again confused mad

Sorry everyone JUST MAD AND SCARRED


Newly diagnosed with SLE, confused, scared and overwhelmed!
 
Breath.... This too shall pass!
Remember Yesterday!
Deal with the here and now today!
Look towards the future for tommorow!


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 3/3/2008 3:55 PM (GMT -7)   
Go ahead and cry and vent all you want to. This is an awful thing to deal with and like you said, it can be upsetting because there is no cure. I'm 41, so I can relate to how you feel about the age thing. I used to be a very healthy and active person. Now I'm very overweight and get out of breath walking around my house. However, there is hope. I've had some time periods where I actually felt pretty good, so even when I'm feeling really rotten, I hold out hope for some good days to come. It's hard not to get down about it sometimes though.

I have come to think of dealing with lupus as kind of like an ongoing grief process. Sometimes I'm mad as heck and other times I'm sad about how much my life has changed and the things I've had to give up. Then other times I'm at a place where I'm okay with things and have tried to adjust my life so that it still has meaning and I have found new things to enjoy that don't take a lot of energy. If nothing else, lupus has made me appreciate the little things in life.

Hang in there and know you are among people who understand what it is like to live with this everyday.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



jessierose
Regular Member


Date Joined Jan 2008
Total Posts : 102
   Posted 3/3/2008 5:27 PM (GMT -7)   
take everyday as they come. Thats something I had to learn, it's not easy. I still have days when I say to myself this isn't fair, but I find coming here to this web site everyone is going thru the same thing and understands you and what your going thru. its like family.. and a good place to vent and ask questions....

best wishes,
jessie
JessieRose
 
 
SLE, APS, Food Allergies, Gerd, Migrains
Prilosec, zoloft, Plaquenil, asprin, predisone, Imuran, noratriplyine.


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 3/3/2008 7:52 PM (GMT -7)   
Hopefully once you see the rheumy and they get to know you and your symptoms they will get to the bottom of this and start you on an effective treatment plan. Once the meds get in your system you should start feeling better, it will take some time to find the right combo but it will be worth it. I am 36 and have always been very active, I know how you are feeling right now, just hang in there and take a day at a time. Take care
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 3/4/2008 8:17 AM (GMT -7)   
Hi ATM,
   Welcome to the forum. The others had some wonderful advice for you so not much really for me to add. We all do understand what your going through, so vent or cry all you want. We are here for you...((Hugs)).
   As far as working, everyone is different. I was dx'd when I was 32 and kept working till I was 40. I do work part-time now and I'm on SSD.  I started having symptoms when I was 19 but, tried my best to ignore them and go on with my life. Even when I was dx'd I refused to accept it. I was a very stubborn person and thought I had control of my life and I could beat this disease. After years of the battle between my mind and body, I finally realized I have to slow down, stay out of the sun, limit stress, take my meds and see the doctor regulary. I still struggle with these issues at times and have to have a good cry.
   This wonderful group has helped me through some tough times the last 4 years. They are awesome! So much love and support here. I'm glad you found this site.
   If you haven't read the "Spoons Theory", its a great way to help you learn to pace yourself and will also help your family and friends understand what you go through on a daily basis. This is the link: www.butyoudontlooksick.com   I hope you like it.
   Please take care and keep us updated. You will be in my thoughts and prayers.
                                                                                Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 3/4/2008 10:32 PM (GMT -7)   
Welcome ATM,

It is definitely not a place you want to be in, but you are. It's ok to grieve. I think we all do. I can't think of the stages of grief right now, but someone said this diagnosis is something like that. We go through the process and may revisit any one of them at any time; we may not go through them in order either.

As many have said, we all still have our poopy, crying out loud days and that's ok. We also have our ok days and also some good days. You won't always be so confused and scared.

Start writing down all of the questions you have for the rheumy along with any symptoms that you are wondering if they are part of lupus or not. This gives you some direction and will also be quite helpful when you see the doctor. Try to rate your most bothersome symptoms with the worst being #1 just in case you don't have time to get them all in. This way the dr. will at least hear the most important.

Sorry you're here, but you really did find a terrific group of people that will help you in any way you need it. It's also a great place to come to cry and/or let off steam!

xoxo emmie
Limited scleroderma with lupus overlap, Sjogrens, Hashimoto's thyroiditis, Raynauds, GERD, Hashimoto's (or Autoimmune) Enchephalopathy, seizures due to encephalopathy, migraines, fibromyalgia

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