Venting

General
1

Hello everyone! I am fairly new to this support group and to Lupus. I was diagnosed back in August after having a 104-105 fever for 4 weeks along with a horrible headache, joint aches/swelling, and just an overall feeling of ick! During my 5 day stay in the hospital I endured 2 spinal taps, a bone marrow biopsy, a lymph node removal, countless blood work and cultures, 3 MRI's, 4 CT scans, 2 x-rays, and endless questions. Finally, a diagnosis came....Lupus. I am a 27 year old mom to a beautiful 4 year old little girl.

As if having Lupus isn't bad enough, I have completely lost faith in my doctor. I'm sure most of you have had issues with finding a good doctor who will listen and respect what you are telling them! I haven't found a good one yet. My PCM is not understanding, my Rheumy is but he is EXTREMELY hard to get a hold of and get in to see when you don't feel well because his practice is so busy.

I finally got in to see my Rheumy last week and he informs me that my PCM thinks I'm addicted to Narcotics because I asked her for something stronger than Tylenol. I'm so frustrated right now! I can't stand for people to look at me like I'm crazy or a drug seeker. When I was in the hospital, my PCM thought I was in bad enough pain to put me on Morphine but now that I don't have a fever she assumes that I don't have pain. I'm so mentally exhausted because I just don''t know what to do and how to address the issue with her or if it's just something that I have to let go. What do you guys think? Any suggestions will be greatly appreciated!!!

2

Depending on where and why your pain but if due to lupus then narcotics are not the drug for pain Getting your lupus under control is key to managing pain as well as NSAIDS to treat the inflammation which is driving the pain as well. Why has your rheumy not prescribed treatments for your pain? Many of us know the frustrations of having symptoms and not having a doctor we can relate to- either have a heart to heart with your primary or find a new primary that you can communicate with better

3

I agree with poobie. An anti-inflammatory was one of the first meds my first rheum gave me. Tylenol does nothing for inflammation, and in my case, nothing for pain.

I also agree that narcotics are not the answer. Getting the lupus under control will lower your pain.

I have found that it is an absolute MUST to have docs who will listen and work with you. I have fired 2 rheums and a PCP in the last 4 years. I now have an internist who is amazing and aggressively treats my symptoms, and I feel better than I have since this all started 4 years ago.

Good luck to you.