View Full Version : Not sure if lupus, but pretty sure

04-17-2009, 07:06 PM
Hi -
I'm a bit nervous to be writing, since I have not been diagnosed yet, but I have been reading these posts, and felt that this was a safe place to start.

I am a 43 year old woman who has suffered since I had my son (14 years ago) with a range of annoying symptoms, mostly related to digestion and skin. The digestive issue mostly resolved when I gave up gluten (though I've never officially been diagnosed as celiac). My skin (rash on trunk) has never resolved.

A couple of years ago I had surgery (ruptured ovarian cyst), and after that time I have been plagued with weird symptoms. Sore upper abdomen, sore throat, fever (off and on), and my diahhrea came back. So, back to the gasto (nothing conclusive), etc.

A month ago I caught a cold. A week after I "recovered" I noticed a weird tingling an buzzing in my left leg. This has never stopped. Then it moved to my right elbow. Then I had a incidence of Raynaud's (finger tips went white), then mouth sores. Then a few days ago I developed blurry vision, and was just diagnosed as having "retinal vasculitis". Then I developed a fever, and a sore throat, and now my heart hurts. And I'm weepy.

I see my doctor again on Monday, who has - of course - being treating everything as a one-off. But my body knows that these things are all connected. Any thoughts on how to survive this dark unknown time while everything feels scary and uncertain?

Thanks for listening.

04-17-2009, 08:17 PM
Hello Vancouver and Welcome :wavey:

No need to feel nervous here...everyone is welcome. We actually have quite a few members here who are, as yet, undiagnosed. We call it 'in limbo'. And we all understand how extremely frustrating it is.

You've found a good place to learn, ask questions, and be supported by a group of very compassionate, understanding people. So many of us showed up here because we were scared and confused and lonely, and trying to figure out what all of our symptoms mean. So let me assure you that you're in the right place. We even have a few wonderful members who thought they had Lupus, only to be diagnosed with something different, but they have stuck around because of the supportive environment.

I'm Lori, and I'm a 46 year old woman that has lived with Lupus for 27 years. I'm married and have 2 children....a son, 16 and a daughter, 12. I thought I might mention that quite a few women started having their first symptoms after a pregnancy. I happened to be in a remission when I went through both of my pregnancies.

I'm so sorry for all that you've been through...you've really been having a tough time. Sending you caring, gentle hugs of understanding. :hug: Having all of this come on you, and not having any answers as to what's going on can be very frustrating and scary. As you've probably been reading on here, auto-immune diseases can cause numerous symptoms, and each and every person's case is different...their own. And you've probably also been reading that sometimes it can take quite awhile to get to a diagnosis. That can mean lots of random symptoms, lots of doctor visits, and lots of tests. And many times, lots of waiting time to get answers.

What type of doctor are you seeing? A Rheumatologist? The mouth sores, fevers that come and go, sore throats are something that many of us suffer with...but when you say your heart is hurting. That concerns me. Do you mean actual pain in the heart, or does it hurt in your chest when you breathe? Does it feel like someone's sitting on your chest, like it's hard to take a deep breath? Or is it a sharp stabbing pain in your heart area? With Lupus, you can get Pericarditis, which is inflammation of the lining, or sac, around the heart. And you can also get Pleurisy, an inflammation of the sac lining around your lungs. Both can be quite painful and serious, is left untreated. If your pain gets worse this weekend, you should definitely call your doctor.

You've already taken the right step in coming here...this is the place where many of us deal with the uncertainty and the scared feelings. It helps so much to be able to ask your questions in a place where there's no judging, only true understanding. We all help each other get through the tough times and the wait between the doctor visits and tests. And when you have lab tests, we have a few very knowledgeable members who are great at helping us understand the meaning of them. One of these ladies is Saysusie, who's one of our Moderators here, and the one that started this site. I know she'll be along very soon to welcome you and help you feel at home. And I wanted to add that you are right in feeling that you know your body best, and that somehow all your symptoms are related. They sure don't feel like random symptoms do they?

Please stick around and let us help answer your questions and help you feel like you're not so alone in this. I'm glad you found us.


Lori :heart:

04-17-2009, 08:31 PM
Welcome! You have definately come to the right place! There are many people here who have great knowledge about lupus (and other things that are related). We all are either sufferers, or know someone who suffers. You will find a great understanding and a sincere compassion here. I wish you the best of luck in your quest to find answers. You always have a friend in me!

04-17-2009, 08:36 PM
Hi Vancouver,

My name is Rob, and I'm a Moderator here. I was diagnosed with Systemic Lupus five years ago. You need not have Lupus to be a member here. This site is open to anyone seeking info, and support for Lupus. Family members, the yet to be diagnosed, the old timers, everyone is welcome here.

One thing you can do to get through this very uncertain, and scary time, is to trust you instincts. You know your own body. Like you, I knew all my odd symptoms were not a one off, and were in fact related. Don't be afraid to be assertive with your various doctors and specialists. You know yourself, you know something is going on with your health, and you need to figure out what it is in order to treat it.

Another thing to do, is learn as much as you can about the disease you believe you have. There are an awful lot of people in the medical community who know little or nothing about Lupus. With knowledge, you can become an advocate for yourself. I find that the knowledge gives a person a very real sense of being in control of their situation, and with that, much of the fear and uncertainty will go away.

And there's one other thing which you are already doing-talking to others about your situation, and possible Lupus diagnosis. There are alot of people here who are now, or have been where you are right now. Talking to others, and realizing that many, many people are able to manage Lupus, and thrive despite it can help make the fear subside. Anyway, welcome to our group, and please make yourself at home here.


04-17-2009, 10:32 PM
Hi just wanted to welcome you.You will find a lot of support here.

04-18-2009, 08:15 AM
Welcome Vancouver,

Lori and Rob have done an excellent job of reinforcing your feelings, and giving you some guidance.

I was first diagnosed with fibromyalgia 12 years ago....this whole time, my rheumy kept saying she felt like something else was going on...My ANA always came back positive, but i did not have enough symptoms to meet the criteria for a diagnosis.

After i joined this group, i started reading about the symptoms that others were experiencing, and i found out that the symptoms are intermittent....i started thinking back, and i have identified symptoms that started 30 years ago...when i went back to my rheumy, we discussed the symptoms that i had experienced, and she confidently diagnosed SLE. I realized that i had been answering the questions about symptoms incorrectly...i thought the questions pertained to only symptoms that i was presently experiencing.

So, keep reading, educate yourself, and this will help the dr. determine what is going on....think back, make a list, and make a copy for the dr.

good luck, so glad you found us, and a huge welcome to you.

04-18-2009, 11:30 AM
Thanks everyone for your kind words of support and welcome.

I am seeing my Family Doctor on Monday, and I will tell him it's time to start putting these symptoms together; I'll ask to have the blood tests for SLE.

I have a question: why rheumatogoist for lupus? I understand for folks with joint issues, but I don't have any joint symptoms. The reason I ask is in Canada all referals to specialists have to be made by your GP, so I'd have to be able to explain why I wanted to see a "rheumy" when I don't have any joint pain.

[My heart pain is more like a tightness, and my heart rate is quite high (about 90 bpm), has been for a few days now. Does lupus lead to an elevated heart rate? It kind of makes sense if your immune system is in over-drive.]

Thanks everyone.

04-18-2009, 11:47 AM
jhey vancouver,

you know, that is a really good question....i know that the rheumatologist treats arthritis as well as lupus, both involve inflammation and pain. Someone will be along who can answer the question for both of us.

If your dr. suspects anything like lupus or any auto-immune disease, he will automatically refer you to a rheumatologist....that is just what is done, and it is the next step.

hope your weather is nice this weekend

04-18-2009, 11:58 AM
You've received GREAT advice from the GREAT people here but i did want to say WELCOME and im glad you found us:cute: