Lupus Community
1.43k Members
Avatar universal

I was diagnosed as fibromyalgia, but things have changed/worsened. Is it a surefire thing I don't have another disorder if my arthritis/lupus blood tests returned negative

I have seen a rheumatologist in the past, for what started during my second pregnancy with a rash on my forearm and bad hand pain/wrist pain (I am a medical transcriptionist, so I know this may contribute for the wrists). Before I ask anything, I am going to give you a little bit of history on me medically. I had a maternal grandfather with rheumatoid arthritis so bad it crippled him/bound him to a wheelchair in the latter part of his life. I was run over when I was 15 (14 years ago), after being struck by a car (so traumatic I don't know where exactly, but my suspicion is my right hip, leg area somewhere; it was a sedan) and was shocked once approximately 8 years ago by my mother's old vitiligo lamp she sold me to tan with (never mentioned the last one to a doc so far), and I have fallen on my bad right side many times. The only thing that has ever been positive is an ANA on me, but the rest of the arthritis stuff was all negative last time; I have had a back x-ray showing a compression fracture, and have had UTI. But to make a long story as short as possible, things have changed. I have got a bit of a hunch back starting, and now my neck pops when I turn it (crunches/cracks), and I can make several vertebra pop at any given time between the cervical and thoracic vertebrae. I am getting things like bursitis and tendinitis, but almost always these types of problems happen on the right. I get dizzy very easily, especially moving my head, and I have heard of something like this before (?benign positional vertigo), I am so tired it is ruining my life; I am literally addicted to sleep, and the  rheumatologist has a strong suspicion for sleep apnea. I have hallucinations too, but I haven't had a sleep study as yet. I'm in pain everyday. I have peripheral neuropathy and sciatica. I have recently noticed after I walk at the park that my left abdomen and my back, both sides, hurt so bad that I can't lift my legs after running (to get back in the car) and I'll hurt a while after. Most of my pain is in my ankles, feet, and back (center), tailbone, and hips and my right hip grinds too by the way (alternating sides usually), and down my right arm, but sometimes my whole right side can flare up. I realize this is a LOT of info, but any help is greatly appreciated on whether this could be something more than just fibromyalgia. X-rays of hip have been negative, as well. I have always had abdominal pain (watery diarrhea about once a month) and problems with my periods with heaviness and very large clots and my nerve pain comes on right in the start of my period for some odd reason. I have also noticed that there is a popping on the right side of my throat like a rubber band lately. I don't like to keep telling all of these things at once to a doctor, b/c they easily get flustered if you don't just tell them one thing, but I feel pain every day that is very real. It's not just the type of pain like muscle pain of fibromyalgia where I can pop a pill and sleep; it's the kind that hinders me at work and wtih my kids, doing daily tasks with my hands and back (I apparently pull things easily) and that keeps me up at night!! I also have a finger that is weird looking (don't know if you call it trigger finger or what). It will not flatten; it is my ring finger on the left, my dominant hand.
4 Responses
Avatar universal
Sorry, I meant my hands and wrists too where I said most of my pain. It is worst of all in hands/ankles/back.
483733 tn?1326798446
What did that rheumatologist say?  If your ANA was elevated it does mean something is going on.  It can take some time for your blood to reveal all.  Based on my symptoms and where the blood tests seem to be pointing my rheumy is treating me for RA and Lupus and will be testing for Ankylosing Spondylitis next week when I go back since I just found out it is running in my family.  You know your body so keep pushing.  Early treatement is key to a less painful and disabling life.
Avatar universal
Thank you, Trudie. :) So you were diagnosed without the blood tests? Yes, the ANA was positive back when I first complained, but that was 2003, and later it was negative. The doctors say it is not significant in itself, because even a normal healthy person without lupus can have a positive ANA at some point. I agree with you, though. I know my body, and I know that my pain goes beyond just the muscles aches of fibromyalgia. I feel like I wake up everyday with a new problem, and when I go to the doc, I always have more than 1 complaint (although I don't always mention them). I've been getting those white mouth ulcers since I was a child, too, but I'm not sure how common that is.
483733 tn?1326798446
I didn't get copies of my blood tests but will when I go next week so not sure what showed and what didn't.  Apparently enough for him to diagnose plus the symptoms.  My symptoms have gotten much worse since I saw him 3 months ago so suspect my blood tests this round will show much more (much more pain in more areas, fatigue worse, mouth sores, eye issues, rashes).  Just found out Ankylosing Spondilitis is in my family and having many back and neck symptoms so am pretty freaked and now wonder if he had diagnosis correct - could be that instead of the RA.  

I find that I think back to symptoms and issues I've had over the years and wonder if they were early manifestations of the Lupus.  
Have an Answer?
Didn't find the answer you were looking for?
Ask a question
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Here’s how your baby’s growing in your body each week.
These common ADD/ADHD myths could already be hurting your child
This article will tell you more about strength training at home, giving you some options that require little to no equipment.
In You Can Prevent a Stroke, Dr. Joshua Yamamoto and Dr. Kristin Thomas help us understand what we can do to prevent a stroke.
Smoking substitute may not provide such a healthy swap, after all.