View Full Version : My first appt. with a rheumy...Updated

09-24-2008, 10:15 AM
I miss my old doctor.

She says that I definitely have fibro but is unsure about the lupus diagnosis. They took ten vials of blood and will x-ray my hands next week when I get back from my mini vacation.

I am so confused. How can one doc say that you have this and another say Im not sure. I have lived almost a whole year with the assumption that I have lupus. I was in such pain and so many yucky things came into play with new issues and the like. I was so sick, didnt get out of bed for 5 months cuz of the pain. Now what?

Kasey all confuzzled

09-24-2008, 11:31 AM
Hi Kasey,
I don't quite know what to say. I don't know that much about Fibromyalgia, but from what I have heard others say that it is very painful. I think that it is pretty close to Lupus, but I am not sure about it. Has the doctor put you on Lyrica? I wish I knew more about Fribromyalgia. I hope that the blood tests will give you more answers. Keep posting ok. Oh and I think that Saysusie would have more information about the Fibro.


09-24-2008, 11:38 AM
Unfortunately, the symptoms of Lupus and the symptoms of Fibromyalgia are very similar.
Fibromyalgia is characterized by widespread pain and fatigue. Fibromyalgia means pain in the muscles, ligaments and tendons - the fibrous tissues in the body. There is also a substantial symptom overlap between fibromyalgia and chronic fatigue syndrome (CFS). Some experts even believe that fibromyalgia syndrome and chronic fatigue syndrome are one and the same. As with Lupus, however, FMS presents a wide range of symptoms which can wax (flares) and wane (remission), and can differ from person to person.

Lupus is a widespread and chronic autoimmune disease that causes the immune system to attack the body's own tissue and organs, including the joints, kidneys, heart, lungs, brain, blood or skin. In lupus the immune system, for unknown reasons, loses the ability to tell the difference between foreign cells and the body's own cells and tissue. Once this happens, the antibodies attack different areas of the body. Symptoms can range from mild to life-threatening and can vary greatly from person to person. Approximately one third of patients with lupus also develop fibromyalgia (I, myself, have Lupus and Fibromyalgia). Lupus can also have periods of flares (attacks) and remission.

Lupus is a disease that can be life threatening, Fibromyalgia is a condition and can never be life threatening. Lupus is a very difficult disease to diagnose because its symptoms also resemble those of other auto-immune disorders. Also, symptoms come and go, old ones may go away and new ones may appear, blood tests can be positive one month and negative the next. So, it is not uncommon for one doctor to be positive and yet another to not be so sure.

Keep track of your lab results, keep a journal of your symptoms and what affects them, keep a journal about your medications and how they affect you. Also, keep yourself as informed as you can about both issues (Lupus & Fibromyalgia). In doing this, you can go to your doctor with information that can help both you and him to make informed decisions.

I wish you the very best!
Peace and Blessings

09-24-2008, 01:20 PM
gentle hugs to ya Kasey

Wow what a mixed bag of nuts. On one had you might be able to scratch lupus of your list of ickies.

But on the other hand...is it ever truely scratched off. One doctor says one thing ... another doctor says another. Hmmm maybe this doctor should call the doctor that diagnosed you and let them duke it out :lol:

It seems that there is so much about diagnosing lupus that is left up to guess work. Untill you are in crisis when all the pieces fit together.

I wish they could come up with better testing and treatments.

When your blood tests come back go in to see your doctor and ask for a photo copy of "all" your results and ask her to explain them to you.


10-06-2008, 09:52 AM
Went back today for the follow up. She says yes you do have lupus. She is putting me on another round of steriods and plaquenil.

So I guess that my old doc was right. I am not crazy to think I have lupus and now we dont need to keep hunting for what is wrong.

She was more personable today, didnt talk so fast and let me speak to her.

So there we have it one more poor unfortunate soul on the IT bandwagon.



10-06-2008, 05:04 PM
Hugsss Kasey

I'm glad that you have a clear answer, even if it is IT.

I would like to know for sure, but fear I will not get an answer. The wheels move very slowly here. But I'll keep pushing.

Hope you get relief soon.

Have they ruled out fibro or are they still checking for that as well?

When you take your plaquenil ask the pharmasist if you can take both pills befor bed with a small tub of yogart.

It will help to ease the side effects. Nausean dizzyness and diahrea :shock:

Plus if you take it right before bed, then you also sleep through the worst of it.

Once my doctor told me to take my pills together with yogart before bed, I've had NO problems with it at all.

10-06-2008, 06:23 PM
Oh yeah I have fibro also. Thanks for the info on taking plaquenil. I will talk with the pharmacist. K

10-07-2008, 05:49 AM
Glad to know you have some answers, Kasey. I really DO believe it's better to know, even if the news isn't what we want to hear. Hugs...