HealingWell
Search Close Search
☰

New here.

Support Forums
>
Lupus
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/24/2007 10:59 PM (GMT 0)
Although I am new to posting, I have been reading everyone's posts for many months. I have been diagnosed with Lupus, undiagnosed with Lupus and then diagnosed with UCTD. I recently had more blood work done and my ANA came back positive. This is the second time it has been positive. I have already left 2 rheumies because they mainly told me I had to live with all the pain and suffering. They did not want to give me any pain medications and would not let me take Prednisone when I needed it. Anyway, I have an appointment with a new rheumy this next week. I really hope that he will be more understanding.

I also have Fibromyalgia, depression, RLS, migraines, any many others. I am a middle school teacher and I am getting to where I can not work anymore. I have been working for the last 3 years with all THIS STUFF. I have already used up my sick leave days and they are now deducting money out of my check. I have disability insurance, but I do not know if a doctor will say that I am disabled enough to quit work. I am always soooo tired and sore. I think for me that the Lupus is always active. I may have a day here and there that I feel somewhat normal, but not usually. Some days are worse than others, but I am in constant pain. I also have a lot of problems teaching. I teach an Algebra class and I find that I can not remember how to do math problems that I have done for years. I also have a bad problem of remembering things. My husband will ask me if remember something and I try, but I can not remember it.

Well, that's enough for now. Thanks for listening.

 

Posted 11/24/2007 11:29 PM (GMT 0)
Hi Doxiemom, welcome! I am sorry to hear of all the problems you've had trying to get a proper dx, it can be very frustrating! I really hope this new doctor will take the time to get to know you and the problems you have been having over the years. I too went through several rheumy's before finding the right one, there is nothing wrong with that! Here are some helpful hints that I learned during my dx process... make a list of every symptom you have that is not normal, make a note of when it started and anything makes it better or worse. Pay close attention to your joint pain, the exact location and type of pain and also any and all lab results you have over the past couple of years. It may also help if you don't wear makeup to your appt, this allows the doctor to see your skin. Your doctor should spend at least 30-60 minutes with you, asking questions, examining your skin, hair, joints, lymp nodes, etc.

I am sure you have all this information together but just in case and also if we have any new members that are in the process too.

I was a lot like you before I was dx I felt terrible every single day, there weren't many days that I felt good. Once my doc started me on Plaq I started feeling a little better, then as new meds were introduced (NSAIDS, Imuran, Flexerill, etc) I began feeling better and better. Now I have more good days that bad but it took a couple of years to get where I am at, however I still have joint pain and a stiff back every single day but it's nothing compared to how I once felt. I still flare from time to time too, I just have to make sure I continue to listen to my body and take good care of myself.

I hope some of rambling made sense and I pray you get some answers at your appt, please let us know how it went. Take care ~ Stacie
Posted 11/24/2007 11:36 PM (GMT 0)
Thanks for your reply. It really helps to have others that understand what lupus is like. I forgot to mention that I have been taking plaquenil for 3 years now. Also, recently I have noticed that my eyesight is getting very blurred and I have a lot of eye pain. One doctor told me that I have Sjogrens also. Anyway, I seem to feel better when I am on a lose dose of prednisone. I hate the way it makes me feel at first, but then I finally feel somewhat decent again.

Well, thanks again.
Posted 11/25/2007 12:53 AM (GMT 0)
Hi DoxieMom:

Welcome to the lupus forum. Like Stacie said a lot of us have been through several Rheumys before finding the correct one. I'm sorry you're having so many problems. I hope your new doctor finds a good treatment plan that works for you. I saw you mentioned that you have blurry vision, did you know that taking prednisone can cause cateracts, which can cause blurry vision. I've been on pred for 7 years and I've got cateracts in both of my eyes and have difficulty with blurry vision on and off.

I too suffer from chronic pain, between my Lupus/Fibro/RA/MDS I've got tons of pain. I'm sorry to hear that you're having a tough time working too. I've not worked since 2001, I'm currently awaiting a judicial decision on my SSDI case. I had my hearing in front of a judge 8 weeks ago, still no answer. I know how hard it is to work and feel bad all the time. I wish you the best. I just wanted to welcome you. Take care and keep up posted on what your doctor says.

Take care,
Barbara
Posted 11/25/2007 2:15 AM (GMT 0)
Welcome to the forum Doxiemom, I see the others have given you some good advice. Just wanted to add my welcome and let you know that you may find some help in the "Lupus Resources" link at the end of my signature. The members wrote suggestions to new members and there is a post in that topic giving all that friendly advice. Blessings!
Posted 11/25/2007 3:58 AM (GMT 0)
Greetings! I have read your post and want to encourage you to keep trying to find a rhuemy who will help you. I had the same type of experience and it took almost four years before someone took me seriously enough to treat me. As for your teaching, just keep doing your best and let them dock your pay if you need a day off. Is it possible to take a voluntary leave until you can get things under control? I'd hate to see you lose your seniority or years of experience. Good luck to you and you are in my prayers!
Posted 11/25/2007 5:22 AM (GMT 0)
Hi Doxie,

   Another welcome coming your way. This is a wonderful group of people that are very supportive and caring. It sounds like you have been through alot. I hope you get the right dx soon and on a good treatment plan to help you feel better..

   Like the others said, with some of us it took a few years to get our dx and others got it fairly quick. Hang in there and keep us udpated. You will be in my thoughts and prayers.

                                                            Babs

Posted 11/26/2007 1:14 AM (GMT 0)
Hi Doxie,
Just wanted to say hi!
Boy, does your story sound familiar. My PCP diagnosed connective tissue disease (ANA 1:1280) about 10 years ago. So I started the "rheumy rounds". It took 4 years and 4 rheumys but I finally found a great doctor who LISTENED and ran every test in the book, and diagnosed SLE. The first rheumy didn't believe the ANA test could possibly be right because, if it was, I couldn't have walked into the office under my own power. The next two rheumys refused to consider that the first rheumy was wrong (how dare I question a doctor?). At that point I begged my PCP to help me. We tried Celebrex, Vioxx, and Bextra. I continued to worsen and my blood pressure went through the roof. I started Benicar for the blood pressure and had a severe allergic reaction (I had been having a lot of allergy problems). Allergist checked and I was allergic to aspirin! No more Celebrex, Vioxx, or Bextra. Luckily my PCP was getting almost as fed up as I was. She called a doctor friend of hers from University Hospital in Cleveland. I went and talked to this "friend" and she went to another department in the hospital and came back with one of the rheumys from the hospital. Between those two doctors I swear they saved my life (at least my sanity).
Stick with it. You will find the right doctor. It just takes too darn long!
Sorry for the long post!
Fran
Posted 11/26/2007 3:11 AM (GMT 0)
Hey Fran (FW)!!! I think we are neighbors. I live about 30 minutes east of Cleveland!! How close are you???
Posted 11/26/2007 2:12 PM (GMT 0)
AlwaysRosie,
Hello!
I am from North Canton (about an hour south of Cleveland). Nice to "meet"you!
Posted 11/26/2007 3:05 PM (GMT 0)
Wow Fran... thought I was the only one with the med allergy issues! I carry an Epi pen and liquid benadryl in my purse. You might ask your allergist to test you for mastocytosis. Its where our immune system makes too many mast cells and our bodies react violently to the slightest changes. Mine is mild, but can be debilitating at times. The ER docs (all three shifts) know me by name!

Blessings!
Posted 11/26/2007 3:07 PM (GMT 0)
DoxieMom....

welcome to te forum. (BIG HUGS) If you are located anywhere near Opelika, AL... there is a wonderful Rheumy there, Dr. Christopher Adams. Hard to get in, but worth the wait.


Blessings!
Posted 11/26/2007 10:21 PM (GMT 0)
Victoria,
Thank you for the info. I see my allergist next month and will definitely mention the mastocytosis. I don't think he ever checked for that. Does this tie into the lupus? I guess it makes sense - just another weird immune system thing. I self-inject small amounts of epinephrine - whined to my allergist that I was tired of going to the ER, so he wrote me a prescription for a bottle of epinephrine and some syringes - and then taught me how to self-inject .2 cc. As long as I am careful and see improvement after the .2 cc, I can skip the whole ER trip! Most reactions I control with the "melt in your mouth" Benadryl, but the epi is a good last resort.
Thanks, again.
Fran
✚ New Topic ✚ Reply