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Old 05-17-2007, 07:59 AM   #1
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Lupus & Other Autoimmune Diseases

Hi!

I was just recently diagnosed with Lupus by my PCP who is also a Rheumatologist. She has put me on Plaquenil so hopefully in the next couple of months it can bring the flares under control.

To make a long story short - Over the past three or so years I have been diagnosed with Fibromyalgia, IBS, and Celiac Disease. My gallbladder was removed a couple of weeks ago because the bile duct no longer functioned. Shortly after surgery I met with my PCP and received the Lupus diagnosis.

I also have a bump on one side of my thyroid. In addition to that, I have a 1/2" "nodule" on my left adrenal gland. After having bloodwork done that said my thyroid was "normal" I decided to take a saliva test on my own. It came back that my TSH was high and my cortisol levels were not normal. I'm seeing an endocrenoligist on Monday to check for hypothyroidism and to check out the adrenal glands.

It just feels discouraging, at times. My recovery time has been slow due to the unknown Lupus flare before and after surgery and being sick from the gallbladder issue for over two months. Though I'm starting to feel better, I still feel so run down. Does anyone else have another autoimmune disease besides the Lupus? Can you let me know how you have dealt with the emotional and physical aspects of it? Thank you for your help!

 
Old 05-17-2007, 05:48 PM   #2
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Re: Lupus & Other Autoimmune Diseases

Hi Angie10,
I have Lupus (SLE), Fibromyalgia, Hypothroidism, Diabetes, Peripheral Neuropathy, restless leg syndrome, high blood pressure, high cholesterol....and a few more things, with the symptoms of some of these at times being overwhelming. Tiredness that comsumes me, terrible pain from the neuropathy, infections and other related problems from the Lupus at times so bad that I don't know what to do so i pray a lot. BUT, having said that, there are also times when i feel almost normal, pain from Fibro. and arthritis is minimal and my husband actually has to tell me that he can't keep up with me, hehehe. Other times I am in a wheelchair brom the pain and shortness of breath, so go figure. Please don't think for a minute that your life is over. At times you will have a cross to bear, but other times you will honestly feel pretty good. Hang in there....just pace yourself, rest when you need to and in the good times while you are in remission, enjoy life to it's fullest!!

Connie

 
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Old 05-17-2007, 05:59 PM   #3
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Re: Lupus & Other Autoimmune Diseases

Dear Angie, Welcome. I'm sorry you've had so many things going on. In answer to your question, I've only been diagnosed with one autoimmune, lupus. My big sis was just Dx'ed as hypothyroid and was put on Synthroid. It took awhile, but she'd started to respond well, is sleeping better, has more energy, and is finally seeing light at the end of the tunnel.

I had episodic problems from early childhood. By my 30's, I was so disgusted, discouraged, but dismissed by my local drs. It took my getting rashes to open up a new line of inquiry. I was finally Dx'ed at age 47 (!), by a teaching hospital rheumie, with lupus, and started Plaquenil---and it's helped a lot.

I read a lot. Before I was Dx'ed, I borrowed lupus books from the library, by two authors: one by Dr. Daniel Wallace, and others by Dr. Robert Lahita. These books helped me understand that all was not lost & that I really needed to push harder for better help from better doctors. Reading these books helped me gain perspective. Posting here has also helped, as I can see how NOT alone I am.

FYI, Plaquenil can take as long as 3-4 months to reach its full effect. So if you started it only recently, it may be "early days" still.

Good luck with your endocrinology consult! I hope you get your thyroid & adrenal concerns answered & addressed. Let us know how you make out, when you have the time, OK? Meanwhile, sending best wishes! Sincerely, Vee

 
Old 05-20-2007, 09:15 AM   #4
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Talking Re: Lupus & Other Autoimmune Diseases

Connie and Vee:

Thank you so much for sharing your experiences and for your support! I'm just trying to take it a day at a time now and deal with one issue at a time. If I think of everything, at once, it can me mentally overwhelming.

I think the hardest thing for me to do is to pace myself. It seems like if I feel good, I go, go, go, until I'm exhausted at the end of the day. For some reason I also sometimes feel guilty for resting. I'm getting over that, though, because I'm realizing that I care about other people's health and well being - why not myself!

I'll keep you posted about the endocrenologist. I will see her tomorrow and am hoping she will hear me out about my concerns. It seems that a few of the symptoms of lupus are the same in hypothyroidism, so maybe I would have more energy if my thyroid were better regulated.

Take care, ladies! Hope you are both having a great weekend!

 
Old 05-20-2007, 01:54 PM   #5
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Re: Lupus & Other Autoimmune Diseases

Angie10....I forgot to mention that my husband also has a lump on his adrenal gland, they check it periodically but the doctors are saying nothing to be concerned with unless it starts growing. I have also been sent to endocrinologist and when he walked into the room, he said he took one look at me and thought "Well, I know what her problem is, she has Addison's Disease. Thankfully, after some testing twice everything is normal. He said it can come and go in your body when your cortisol levels will raise and then go back to normal. I sure hope you do well at your doctors appoinment and get answers to all your questions....................and I hope you feel much better soon. I think we can all relate to what you are experiencing.

Connie

 
Old 05-22-2007, 02:28 PM   #6
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Re: Lupus & Other Autoimmune Diseases

Connie:

The visit with the endocronoligist was one of those - we will probably find nothing but will run tests to make sure. However, if something is found, I'll deal with it then.

Right now I'm just trying to find a job in a field I love and trying to better pace myself every day. The rash on my face when I interview just looks like a nervous blush, so that works out well! I was becoming more ill at my last job, having challenges concentrating, and feeling so run down. Eventually, I resigned. By January, the undiagnosed Lupus was starting to gain momentum. A month later my gallbladder began to malfunction and I just worse than I had ever felt before.

Now that I have the diagnosis of Lupus and have had my gallbladder removed, I finally feel emotionally better for the first time in months. Yes, I have moments where I still can't believe that I have Lupus or become angry that I do, but I'm really trying to focus on the positive and work on being good to myself. I am also trying to shift the focus of my health away from my family and friends so that it is not the only thing we discuss.

Thank you for your support. It is nice to talk with people that understand what this process is like. I hope you are having a good day, today!

 
Old 05-22-2007, 08:10 PM   #7
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Re: Lupus & Other Autoimmune Diseases

Quote:
Originally Posted by Angie10 View Post
Connie:

The visit with the endocronoligist was one of those - we will probably find nothing but will run tests to make sure. However, if something is found, I'll deal with it then.

Right now I'm just trying to find a job in a field I love and trying to better pace myself every day. The rash on my face when I interview just looks like a nervous blush, so that works out well! I was becoming more ill at my last job, having challenges concentrating, and feeling so run down. Eventually, I resigned. By January, the undiagnosed Lupus was starting to gain momentum. A month later my gallbladder began to malfunction and I just worse than I had ever felt before.

Now that I have the diagnosis of Lupus and have had my gallbladder removed, I finally feel emotionally better for the first time in months. Yes, I have moments where I still can't believe that I have Lupus or become angry that I do, but I'm really trying to focus on the positive and work on being good to myself. I am also trying to shift the focus of my health away from my family and friends so that it is not the only thing we discuss.

Thank you for your support. It is nice to talk with people that understand what this process is like. I hope you are having a good day, today!
Angie10,

I don't like to discuss my Lupus and talk about it all the time either. I try to tune it out as much as possible because when it flares, you can't tune it out....it is just so in your face with the fevers, pain, infections, etc., etc., etc. What type of work are you looking for? I hope it will be very non-stressful. Good luck in your search.

Connie

 
Old 05-24-2007, 04:51 PM   #8
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Re: Lupus & Other Autoimmune Diseases

Connie:

I'm trying to get back into Higher Education in a staff position. However, it is hard going on interviews and them asking why I haven't been working since December. "Oh, I felt lousy and didn't know why. Now I have an illness that may, at times, affect my work day" Noooo! Can't go that route. I had an interview the other day with 5 people, at once, and lo and behold, I developed a beautiful butterfly rash during the interview. Ooops!

Hopefully I will get work soon and start to feel better. Too bad the Plaquenil takes awhile to kick in. Actually, last night I was having dinner with two of my friends. The wife of one of my friend's co-workers also has Celiac, Fibromyalgia, and Lupus. She told my friend to tell me that people with Fibro often show positive results for Lupus but it doesn't mean the person needs to be treated for it.

I was baffled by this and did not neccesarily agree. I should continue to endure tremendous (never in my life this tired) fatigue, joint inflammation, rashes, and hair loss without medication? It was also hard to hear that because there is a small part of me that is still in denial.

Did you have a time, in the beginning of each diagnosis, that you did not want to believe it was true or thought that maybe the doctor was wrong? Since Fibromyalgia and Lupus have so many similar traits, it has been bothering me but I don't want to call up the doctor and say, "Are you sure?" because I keep reviewing the criteria. Sorry to ramble on, I'm trying hard to accept the new diagnosis, but still feel some resistance. Thank you for hearing my "woe is me".

 
Old 05-25-2007, 04:53 AM   #9
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Re: Lupus & Other Autoimmune Diseases

Hi, Angie. About your friend's comment that people with fibromyalgia often show positive results for lupus without really having it: . I wonder where she read THAT, or what doctor(s) said that to her? Yes, SYMPTOMS may overlap. But SYMPTOMS and TEST RESULTS are different things, yes?

It doesn't make much sense for a layperson to question something so complex. And even DOCTORS do this, astonishingly. My new GP (old one retired) announced within 1 minute of meeting me that I couldn't POSSIBLY have lupus. She could tell just by LOOKING at me, she claimed. I started laughing. She & I didn't exactly get off to a good start with one another!

So you just hang in there, OK? Sending my best wishes, Vee

 
Old 05-25-2007, 05:59 AM   #10
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Re: Lupus & Other Autoimmune Diseases

Thank you, Vee!

Can I make a suggestion? Find another GP fast! External examination cannot be the only criteria for examining a patient. Also, if you were in remission, there may not be such pronounced symptoms such as a butterfly rash or walking with stiffness.

I have had doctors before that said they thought I did not have Celiac disease or a mild form and that I could go back to eating wheat and gluten containing foods or that fibromyalgia didn't exist. I ended up finding new doctors because I need support, not denial of what I had. I also didn't need advise that would make me sicker. Just as I have had to educate myself about everything I have, doctors need to keep current and consult other doctors who specialize in these specific fields. It can be very frustrating but I have found that I wasn't being assertive enough in the beginning. Now, I speak up and push for more answers. That hasn't been easy!

Thank you for your support, Vee. Also, hope you can find better support in a GP. Take care!

 
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