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mdawncooper
10-05-2011, 03:22 PM
The new pain management doctor really listened to what was going on. From looking at my original blood work he had no issue agreeing with the original Lupus diagnosis. I mentioned my frustration that every time I went to the rheumy that she seemed to change her diagnosis and now she acts like I am not sick at all. He was able to offer me some comfort and made this comment:

"I think rheumatologists have a very difficult job because they never have confirmed answers to their diagnosis." He also said that he thinks they don't know how to recognize pain in people. Some people look really sick so they don't have a problem diagnosing them but those of us who don't look to be in pain must not be sick.

I see what he is saying but I think it all goes back to listening to your patient. He is starting me on Lyrica and suggested I stay on the meds the rheumy gave me. He promised to help keep the pain under control.

Now for the next question, how do I find a rheumatologist that won't change their diagnosis every time I walk i the door. I thought I found it in this rheumy but I guess not. The Plaquenil was working although it does cause stomach issues. She said she would leave me on it but she didn't think being on it for 4 months was long enough to tell if it was really working. Another words, if I am feeling better it is not the meds but you are not sick.

Can you still I am still really frustrated?

Melanie

sharpiessave
10-05-2011, 04:45 PM
Hey Melanie. I wish I could fly you to KC to see my SuperRheumy. Southwest had a $59 special from here to Houston last week. ; )

I was wondering if you could give me some advice about how to prep for my 1st pain management appointment on the 20th. Did you take copies of your records with you, or did the clinic already get them from your docs? For all my joint and muscle pains I've been taking Vicodin and Ultram, plus Aleve and Ibuprofen. I just started Cymbalta, which the Rheumy says should help with pain. For the last week I've had uncontrollable sciatic nerve pain, but today (WAH-HOO!!) I got a miracle in the form of Lidoderm patches. So I guess my main question is, what more could there be, pain control-wise? Did the new doc have any recommendations other than the Lyrica?

Sorry to pepper you with questions. I just have no clue what this pain management thing is gunna be all about. I'm trying not to get my hopes too far up, because the idea of someone actually caring about the pain aspect of this Mess still seems so foreign to me. I guess I still expect people to just roll their eyes and give me that "all you want is pain meds" look I'm so used to.

Anyway, any words of advice you could give would be awesome. And again, I wish you all the luck in the world with the Rheumy situation. Argh, dumb doctors. . .

Saysusie
10-06-2011, 09:53 PM
Hi Melanie; I am glad that you had a good doctor's visit and that you are starting the Lyrica. I do hope that it works for you :-)
Just a word about Plaquenil..it does take this drug up to six months before you will see any significant improvement. That's probably why your doctor said that four months was not long enough. Plaquenil is a cumulative drug and must build up in the system before it can be truly effective. Perhaps you can give it a bit more time :-)

Peace and Blessings
Namaste
Saysusie

mdawncooper
10-07-2011, 05:45 PM
Namaste: I know you are right about the six months but I actually started having some positive results about the 3rd month but oddly enough my Rheumy told me there was no way it was the medicine and launched off on looking for something else. I asked her to please leave me on the Plaquenil because I was feeling the difference. Even though I am hurting much more now I think it would probably be worse without the Plaquenil.

Sharpiesave: I was fortunate enough to have a good friend's husband who is a pain management specialist. He knows me and has watched my life change because of pain so I didn't have to fight for help. I actually have friends and family near Kansas City so if I don't have a better appt in December I may be asking for info. I just don't like that my rheumy is not giving anything time to really work before she launches off into some other disease. I think I am frustrated too because I don't feel good.

Melanie