So Tired of the Run Around....

I was diagnosed 11 years ago (after years of compaints to my family dr and orthopedist) when the rhuematolgist I had been refered to called me at home and told me I had lupus. He didn't explain what it was, how to handle it, or what I should do to prevent flares. After a few years, with research on my part, when I started feeling better, he said I did not have lupus, but a non-specific mixed connective tissue disease. Then a couple of years later, I had lupus again. Then I had a lupus-like connective tissue disease. Then I had only fibromyalgia, when I really learned how to take care of myself and avoid flares and was in remission. Now, I have lupus again! Doctors are idiots!

They are the ones who learn that lupus has different phases and can go into remission and reacts differently in every patient, yet they seem to forget this. And when you attempt to remind them of this, of course you only insight anger in them, which is the last thing you want to do in your health care provider.

The best thing you can do is keep a detailed record of every symptom you are having with the date. Call this your lupus diary. If you are having fevers, take it every day around the same time, or two times a day and record the time and temperature. If you are having raynauds, record when and what color, ie red, white, blue, and how long it lasts? Do you have morning stiffness, is it every morning, if so, how long into the day does it last, does it lessen with a long hot shower? Do you have nausea, diarrhea or vomitting? Do you have mouth or nose ulcers? Etc, etc, etc.....

This way the next time you go see your Dr. He can compare your list with the lupus list of criteria. It would also help you if you are really not that educated in lupus to go to the national library of medicine.Org or lupus now.Org.

Mia

I know how it is to feel frustrated as your diagnosis goes from one thing to another. I'm lucky to have to great doctors to work with. They explained from the very beginning that it would take years to come up with a diagnosis that would stick, but I should prepare myself to dealing with an unnamed enemy. I'd love to have a name for it, but having the doctors explain why the diagnosis changes with the change in test results makes it easier to bear.

Hang in there! There is something pysically wrong with you and it doesn't matter what name you put on it as long as your doctor is listening to you and treating you in a way that you're comfortable with.

Chronic diseases are not fun! Especially diseases that can't be seen by the rest of the world. Unless there's a rash or something swollen, this disease is hidden most of the time. Frustrating as heck, huh????

You're not alone!

Thanks for the ideas. It would be nice if the dr's would just listen, rather then double booking their days so that they can get in their rounds of golf. We pay them out the wazoo to see them for what 15 or 20 minutes???? I just have gotten to the point that I only go when I am really sick, like to the point of being put in the hospital. That way I know that they can't just ignore me. But that makes it hard on me and my family, but what can I do? Thanks again for the ideas, and for responding!

Jen, i've done what you're doing now. For years! There were times when I was convinced by doctors who just didn't care, that this whole thing was all in my head and all I needed to do was to get up and forget the pain. Yeah..........Right! I even had an orthopedic doctor tell me that there was no such thing as fibromyalgia and he was pretty sure lupus was over reported because it's just a female hormone thing. (this is the same doctor who said my daughter was feeling physical bad because of guilt when in fact she had a huge case of mono!!)

i went to a lot of different doctors before I was finally sent to a rheumatologist just to appease me. He was and is great. He spent 90 minutes with me just talking and did all the necessary tests after that. That was 17 years ago. He was such a good doctor that I asked him to recommend a good primary care doc. Another winner! They're both kind, competent and patient. I don't wait for appointments. I'm not pooh-poohed off when i'm feeling terrible.

I know i'm lucky!! But finding a good doctor isn't an easy thing. They've got to be out there. I can't believe that i've found the only 2 good doctors on the face of the planet. It's hard to go from one doctor to another when you're feeling terrible, but unfortunately that's exactly when you need to do it. The good ones will listen.....For as long as it takes.

Good luck jen! I hope you find a doctor or two that will listen. It's up to us to be good patients. Tell the doctor whatever is important until you're sure he/she understands. Follow the instructions your given for taking meds or having follow up tests. Inform yourself by reading as much as you can about what you have. Being sick is a difficult job for anyone, and when your life is already full, as almost everybodys is, there seems like there's precious little time to be dedicated to getting well. Take the time kiddo!! Good luck!

I am new to lupus and have lots of pain and fatigue. I look well and have a high pain threshold, I guess that's why my doc added darvocet to my bextra when I told her the pain had increased to all over. I too can barely get up in the morning to get myself and the kids all dressed, and sometimes I don't. My 3 boys are 5 1/2 yrs, 4 yrs, and 10 months, so I don't even get a break during the day. My doc's response to the fatigue is basically that I will feel better when the pain is relieved and I can sleep better at night. With which the darvocet will help and when the weather calms down (when summer comes) my pain will recede some and I will feel better. That's great news! There is no school in the summer and here in fl it is too hot to play all day. Plus, aren't I supposed to avoid exposure to the sun?