Registered: 1489526746 Posts: 14
Sorry for the delayed response... I took my kids on vacation for Spring Break and I haven't been on my phone much. My answer may be quite lengthy as I've had mixed feelings about this, as well, and I'm going to try to clarify the explanation of my muscle pain too.
First off, my initial rheumatologist visits were less than helpful or productive. He was very focused on "pain" as soon as that word came out of my mouth and discounted any mention of my other symptoms: Reynauds, skin rash and lesions, fevers, extreme dry mouth, GI issues, hair loss, inflammation within internal organs being diagnosed from other specialist etc. He flat out told me he believed that I ONLY had fibromyalgia and when asked about my other symptoms he said they were unexplainable. He brushed off my blood work as well even though I have a positive, speckled ANA at 1:640, positive inflammatory markers, my C3 is off, RBC and WBC counts are not where they should be along with some other basic levels such as carbon dioxide, chloride and glucose. The ANA and inflammatory markers in no way have a bearing on diagnosing fibromyalgia. I've been told that by this rheumatologist and my PCP. But when I questioned his diagnosis alongside the bloodwork he said because my lupus antibodies/antigens were borderline or negative, he would not diagnose me.
With all that being said, from my own personal research and speaking with people who are lupus sufferers, I do know that it is very likely that lupus patients ALSO get diagnosed with fibromyalgia. That is a diagnosis that I, myself, could've accepted. Or any AI disorder along with the fibro because it would've explained my bw and symptoms. A stand alone fibro diagnosis does not and I felt like was a cop out to a very over booked doctor not wanting to do further testing and follow up, etc. So... I guess in your case, I wouldn't necessarily be 100% concerned with a fibro diagnosis IF you feel you are getting the care you need for all your underlying issues and someone isn't trying to just treat you for pain! He was trying to push narcotics and large doses of nerve pills (which I had been on once before when I was diagnosed with a large cyst in my brain that was causing stroke and seizure like symptoms) and I was completely intolerant to them. You have to do what feels right for your specific case and I believe a good working relationship between patient and doctor where you can speak up and ask questions and be heard is crucial! While the doctor should have the final say in what is most important in your care, if you are completely uncomfortable or have questions that shouldn't be brushed aside.
Lastly, I wanted to clarify the nature of my muscle pain. I only have widespread muscle PAIN when I've done a lot of physical activity... I.e. Walking, housework, yardwork, etc. And it mainly coincides with whatever area has the worst joint pain. So say my left leg and right arm joints are in excruciating pain after activity... Those muscles will have the most pain. And on a bad day, the majority of the rest of muscles I would classify as more of a soreness and overall tiredness. On a good day, I'll either have no muscle issues or what I would call muscle weakness and fatigue just from working and being mom. My left leg and right arm are ALWAYS the worst, but again, those are my worst areas for joint pain with the exception of my hips and my neck where it meets my skull.
I hope this helps you in some way... Or if not you, someone else reading. I know I have a tendency to be a bit wordy! Lol I apologize... I overshare and am super detailed!
Enjoy your day!
Registered: 1486503899 Posts: 158
Dmgentry79 that really makes sense my pain in my left shoulder would make me have pain in my left arm muscles, in the muscles in my left thigh hurt t knee is the worst or worse than my right knee thanks for your input that really helped me.