# Fibro or lupus?



## UTSophie

I've had IBS since I was in high school. I am now 22, but last summer, actually, a little before, I started experiencing other pain than in my stomach/intestinal area. I would get horrible dizzy spells if I didn't sleep right, then I started having these shooting, electrical type pains all over my body, primarily my legs and hands. I went to various doctors, and I was finally referred to a rheumatologist after a doctor discovered, via a blood test, that I tested positive for antinuclear antibodies (these tend to signal an autoimmune disorder like lupus if they are present in one's bloodstream). Anyhow, I had more blood tests, and everything came back normal, but the rheumatologists noticed that my fingertips were purple/blue from being cold. He said it was called raynauds, which is another symptom of a autoimmune disease, like lupus. He decided that I either had a mild case of lupus or fibromyalgia; he also said I would have to wait to see what other symptoms would develop later on down the road. It's a year later, and so far, I haven't had any new developments, other than the "break-down" and removal of my gallbladder, along with exacerbated IBS-like symptoms, and ovarian cysts (which I've had for awhile). I know how to control the body pain; the doctor gave me a prescription for Neurontin, which works quite well. I also notice that when I don't do enough physical activity, or I do too much, I tend to have more body pain. I just don't know if I should follow-up with more doctor visits to see if anything has changed...because if I do end up having lupus, I could start developing organ problems...would digestive problems fall under that category? I'm really trying to figure out what to do next as far as my increasing stomach pains are concerned, and I'm wondering if my digestive problems could be related to the possible lupus or fibromyalgia diagnosis?


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## Rowe2

Hi Sohphie..my mom has lupus and fibro..I have R.A. and Fibro. Mom has the type of lupus which effects the skin tissues. For instance, she has the butterfly rase across her nose at time. That is the milder form of Lupus. The more serious type involves the organs. All the auto immune disorders have so many similiar symptoms, so it is hard to tell what is what. I would seek a second doctor with more tests if I were you. I pray for the best for you!


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## M&M

Hello, and welcome to our forum, Sophie! I really do not know that much about Lupus.One thing I can tell you is that IBS is SUPER common in Fibro patients. But, beyond that, I know painfully little that can help you in the situatino you're in.The Lupus Foundation of America, however, has a GREAT website, loaded with lots of great info about Lupus. This is their home page:http://www.lupus.org/newsite/index.htmlThey have some great information on Lupus symptoms, and the kinds of lab tests that are used to help diagnose Lupus.I definitely think it is VERY important for you to get a diagnosis NOW, and start treatment NOW. The earlier you get diagnosed and start treatment, the better your long-term outcome will be! With most illnesses, Fibro and CFS included, the longer you wait to start treating it, the worse you'll end up feeling long-term. With ME, for example, the longer the symptoms go unchecked and untreated, the patient is more likely to end up sicker, than a patient who was treated early. (If I'm saying that in a way that makes sense. lol)I think Rowe is right, you may need to get a second opinion from a different doctor. I think it is a very bad idea for your doctor to tell you you'll just have to "wait and see" what other symptoms develop. Early, effective treatment is important because it can minimize your symptoms, reduce pain and inflammation, and help stop the development of serious complications. I'm glad you haven't developed any new symptoms in the last year and I think that also indicates that with good treatment, you can really do well with whatever illness(es) you are dealing with! Please stick around, and keep us posted on how you're doing!


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## UTSophie

Thanks! I will definitely start doing more research. I really don't feel like waiting around, either, it seemed like a silly suggestion from the doctor...but I didn't know what else to do, because I'm trying to get my IBS/post gallbladder digestive problems under control...now I'm starting to think all these symptoms are related somehow. Anyhow, thank you for the response and welcome!


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## Rowe2

Hello again, Sophie! I love your avatar..really cool!I noticed I spelled a word wrong in my first post. My mom has the butterfly RASH across the nose and face, not rase! Goodness, where was my brain? Your symptoms sound so much like Fibromyalgia, but don't take my word for that. A second opinion from a rhuemy doc is a must. I wouldn't trust any doctor who says, "Let's wait and see." What was the doctor thinking???


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## Titania

I know this is an old post, but as I have lupus and antiphospholipid syndrome I can tell you that you can't do anything to speed up your diagnosis, you need to be patient. That is the thing with lupus, it takes a long time to make the diagnosis because many times the symptoms are not clear and they may mimic other conditions. Mine was conclusive 3 years after my symptoms started, and, believe me, I had a second, third and fourth opinnion and it wasn't until my lupus really flared up, that it was clear it wasn't something else (every doctor that i went to thought it may be lupus, but there wasn't enough evidence at the time). Of course, as lupus is a weird disease and it has a verry wide range of manifestations, there are those who, from the begining, have very evident symptoms. Antinuclear antibodies can be high for different reasons, not only autoinmune diseases, f.e., you can have possitive ANA's from sun expossure. I most clarify that during the time I was waiting for my Lupus diagnosis, I was on treatment with anticloting drugs and hydroxicloroquine. What worries me most about your symptoms is:


> my fingertips were purple/blue from being cold


That is reynaud's syndrome, but it doesn't mean that you have lupus, what is sure is that you have a vascular sympton, that may be present not only in lupus . Have your doctor ruled out anticardiolipine antibodies (present in antiphospholipid syndrome)? You can have primary antiphospholipid syndrome, or secondary to lupus or other conditions. From my point of view the above should be your number one worry right now. Maybe you don't have lupus, but there is something wrong with you. To have vascular symptoms is a dangerous thing, I also think you should find another doctor.Let's all hope that is not lupus (You would never want to have that).Good luck!


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