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Hi! My name is Lisa and I am 39 years old. I have been married for almost 20 years and have two wonderful sons. 16/13 I have been lurking about in here for a few days and decided it was time to join. So many of your stories sound so familiar to me.

I started noticing symptoms about 3 years ago. First it was the rash across the back of my scalp. This has continued for the whole time with sometimes it getting worse than other times. I have had a redness across my face for as long as I can remember. It goes across the bridge of my nose and on my cheeks.
Then about a year and a half ago I noticed that when I got up in the morning I felt very stiff and sore. I at first thought it had alot to do with me getting older.:lol:As time went on, this discomfort would last throughout the day. Sometimes my pain even seemed very severe. I was popping ibuprofen like it was candy.

I finally went to see my GP and he ran some test. One was checking pressure points which I was positive for 12 of them. On top of the pain and discomfort, I also have alot of fatigue. I have absolutely no energy most days. My GP ran blood work checking for arthritis etc. All the test for arthritis came back negative. One test that he did was an ANA. It came back positive. He then wanted to send me to a Rheum. He wanted me to be checked for Lupus and Fibro. The first Rheum. he set me up with couldn't see me for 5 months. He found another one that could see me in 2 months.

I went to the Rheum that could see me the soonest and the oddest visit I have ever experienced. He examined me and said that he was positive I didn't have arthritis. He then said he was going to treat me for Fibro. and do test to rule out lupus. He sent me home after blood work with a prescription for Lyrica 75 MG - 2 x a day. (Which makes me very loopy!) The nurse called me a couple of days later to tell me that my Vitamin D was very low and that I needed to start taking some. I asked how my other test turned out and she said that was all that he had run. :worried:

So a month goes by and I go see my GP due to a pain I am having in my side. He runs more blood test and orders a CT. Talk about FUN! 450 ml of fruity fun to drink.:lol: He called me the next day to tell me that I had a cyst on my kidney but that he didn't think that was causing the pain. He did tell me that he was a little concerned that my ESR was elevated. He told me to make sure I mentioned it to the Rheum when I saw him this same week for a follow up that I was scheduled for.

:mad:Okay..the follow up appointment didn't go so well. He read to me the letter he sent to my GP. It stated that I had Fibro but that he had ruled out Lupus. I point blank asked him how he ruled out Lupus. (from everything I have read, there are many test that have to be done to do this) The Reum tells me that he has been doing this long enough that he can tell when a patient has lupus or fibro. Talking about annoyed. I was. He also told me that the rash on my scalp was just a severe case of dandruff.:worried: I told him about the elevated ESR and he didn't seem concerned. He asked me how I was doing and I told him that I was still in alot of pain and my energy level had dropped. He doubles my medication and says he wants to check my vitamin D level. While I am having blood drawn, I asked the tech what test they are running. She says that he has ordered a Vitamin D level and an ANA. I found that very interesting. ANA is not a test you do for Fibro. I should also say that both my appointments with the Rheum. last no longer than 15 to 20 minutes including taking blood.

Needless to say, I kept my appointment with the other Rheum on the 24th of November and I plan on going to him to get a second opinion. I am sorry if this was long.:( but this is the first time I have been able to talk to anyone who is going through what I am. Any thoughts on all this. I welcome anything.

Thank you for listening!;)
Lisa
 

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Hello Lisa and welcome,

I'm sorry to hear that you've been having a slightly maddening doc time but it sounds like you have the right attitude and that you won't let it drop.

Yes, definitely keep that other appointment. Even among rheumatologists, not many specialise in autoimmune diseases so finding a good one isn't always plain sailing.

One thing that strikes me though is "I can tell whether a patient has lupus or fibro". What an odd statement. Many patients have BOTH. It sounds like you might well have fibro (those pressure points for example).

You also have quite a few other things going on and enough odd blood work coming back to warrant far more thorough investigation.

Anyway, I think that confirms what you already know :lol:

Keep that appointment and keep us posted,
hugs :hug:

Katharine
 

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Hello Lisa, I am firmly with Katharine on this one. I have both Lupus and Fibro confirmed by Dr. D'Cruz in London who is respected world wide. Many of us do indeed have both conditions. Myself and many others here have found out that not all Rheumatologists specialise in Lupus.Many may only recognise an absolute textbook case complete with livid rash etc. Many people only have slight flushing visible. Joints often hurt but do not swell and sometimes the blood tests are slow to show positive results. More enlightened Consultants would treat this as Lupus like illness, and help you anyway.
x Lola
 

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Hello Lisa,

Welcome to the lupussite. I'm glad to see you still have your wits about you when it comes to your health. You will definatly need it with all you may go through.

I see you have also learned not to take what the doctors says just because they say it. I like asking a lot of questions as well.
I love it when the doctors say they have been doing this for a number of years.
I always reply,, I have been in my body for 46yrs. I think i know when something is wrong. They can never trump that.

I hope you get your medications tweeked by the proper rhuemy soon. You will find that you don't have to live in such pain once they administer the right cocktail of meds custom made for you.

Please, take care of yourself, take it slow and dont push yourself too much, it can get worse if you do.

Again welcome,
I hope to chat with you soon.
 

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Discussion Starter #5
After years of taking care of my parents, I know to question the drs and often. I sometimes feel like I am a hypochondriac but I know I am not. I usually tell the drs that I can't do things I did a year ago. That isn't normal. And when I over do it, I have absolutely no energy at all.

Thank you all for your support and anything you can share with me is welcomed!

Lisa
 

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Welcome to the site but sorry for what brings you here. It sounds like you already have a lot of background knowledge and will make sure you are cared for appropriately. It often seems the case that the rheumy a person can get into soonest is also the worst one - I've heard a tale eerily similar to yours many times now! Two months is still a long time to wait too! Better luck with your next rheumy - but at least you're getting a good med for the fibro now.

You definitely have symptoms and apparently blood test results that are more common with lupus (+ANA especially if it's positive at a high titre and the elevated SED rate).

Welcome again and take care...
 

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The Other Illinois Tammy
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Hi Lisawhiz,
I am sorry that are getting mixed messages from your doctors. It sounds like you have a strong knowledge of what you are doing and it might of worried your doctor a little.
When you see that rhemy again I would let him know you know what tests he ran and that you are active in your care and would like to in the future not be only be partly informed on what is going on. I would also talk with the other rhemy but a word of advice don't share the visit with the first rhemy only to see what he really thinks on his own. Doctors don't like to be pitted against each other and no will not most of the time form their own conclusion if they know what the other has said. As for he has been doing this a long time does not change your questions and desire to have them answered with respect. I find his response to be, well be littling to you. I wish I had a better reply but it is your health not his so you have every right to know what is going on and also for him to be honest with you about test and other things.
Tammy
 

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Jen
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Before my symptoms really flared I had a similar experience, I only had joint pain and + ana back then. As soon as you mentioned one doc had a 5 month wait and one a two month wait a red flag went up for me. This isn't always true but the docs with the longer waits are usually the good ones.

I believe you said you were going to see that doc soon, I'd ask for a full lupus blood panel just to cover everything. Things could be negative now that later turn positive which I experienced.

So glad you are getting a second opinion. Good luck.

Jen
 

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Discussion Starter #9
I had a really good week I thought until I woke up Friday morning. All week, my hurting seemed to be at a minimal and I seemed to have more energy than usual. Friday morning I woke up hurting. As the day went on it seemed to get worse. Friday night we went to my son's football game and it was cold outside. My fingers and toes felt so weird. It was kind of a tingly pain. Yesterday wasn't much better. I ended taking a 3 hour nap.:blush:I was just sitting there watching Tv and woke up 3 hours later. I wish you were able to know ahead of time what days will be good days and what days will be bad.
 

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Hi Lisa,

Just want to wish you good luck for tomorrow :luck:

Make sure you have a look at the criteria used to help diagnose Lupus which is stuck at the top of the Not Diagnosed Forum. See if you can identify with any of those things, i.e mouth ulcers and lots of other little things which may seem unimportant but all help the doc to try and work it out. They don't have to be present all at the same time but can be things that have happened in the past forming part of your health history.

Also mention your blood results so far and if there is any family history of autoimmune disease in your family (doesn't have to be Lupus specifically).

Jot down your symptoms starting with the most troubling first.

Once again good luck and let us know how you get along.

love
Lily
 

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Hi Lisa,

Well I am hoping that today is going to be filled with a lot of great information from a competent doctor whom your seeing for a second opinion. Sorry I am late getting to your post but certainly getting a second opinion was smart. Please let us know how you make out today.

Your not a hypochondriac at all. I have heard so many woman think that of themselves and I believe that these crazy doctors help us as women come to that conclusion.

You find a good doctor and you will get answers!!! Your symptoms warrant findings and a positive ANA is a good sign something auto immune is going on. Do you have any idea what the ANA titer was?

Well, we will wait for you to post about today's appointment. Good Luck and hope it all goes well. By the way I love how your proactive about asking questions and calling a spade a spade with doctors. I have done this for years.:rotfl::rotfl::rotfl:
 
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