Potential Lupus diagnosis

[Perfumeflower57]

Hello, I have just joined this site and would be very grateful for any advice given. Sorry this might be a bit long winded🤪

So… my ethnicity is of Asian origin and ever since I can remember I don’t think a day has gone by where I don’t suffer from joint aches , muscle pain body stiffness and chronic fatigue. The type that doesn’t get better with any amount of rest or sleep. It probably goes back all the way to my childhood, school was exhausting and I was always making excuses to get out of P.E and games🫣☺️All through my teenage years and adult life (20yrs to 50yrs) I have constantly gone back and forth seeing many different resident and locum GP’s. Probably more than my fingers and toes added together. To no avail.

Then in 2014 I had a high Serum C reactive protein result come back which GP said it pointed to my body having an inflammatory reaction of some sort. My readings between 2014 and 2022 were from between 19mg/l to 11mg/l. My serum creatinine readings have been between 103umol/l to 66umol/l.

My GFR (kidney function) is between 60ml to 82ml. Mildly decreased function

Finally, when it was around 2016 while I was really struggling with my full time job, I saw yet another GP who was willing to listen and I presented with same symptoms together with other various symptoms as-well. The list is as long as my arm. He referred me to a Rheumatologist who initially diagnosed me with Fibromyalgia. No particular blood tests were done for this, just a physical exam.

The year 2022 was the very first time I had the (anti-nuclear) ANA blood test which came back as a positive (1/160 - 1/640) homogeneous pattern, chromosomes positive.

This month (July 2024) I’ve had another positive ANA at 1/80. My GFR is 63ml ( normal is between 90ml to 120ml) and serum creatinine is 87umol/l. (Normal range is between 44 to 80.)

So with keeping all of this in mind I’m really wondering with the possibility I may have SLE. Either with the fibromyalgia or instead of. But I’ve read on some websites that people diagnosed with fibromyalgia also go onto being diagnosed with Lupus.

[MusicalFurbaby]

Hi Perfumeflower and welcome! The signs and symptoms you describe certainly sound autoimmune to me, and I’m glad you have found a supportive GP to assist you.

Rheumies often do repeat bloodwork to see if things fluctuate and to see if positive results hold over time. It’s probably worth going back for another visit; their first diagnosis might be right, but many of us were initially misdiagnosed and/or our true diagnoses took a long time to surface, so it’s worth reviewing the bloods and the initial diagnosis. Your rheumy should see you a few times to see if the diagnosis and treatment are a good fit for you.

Good luck!

[Perfumeflower57 in reply to MusicalFurbaby]

Hi MF,

Thank you so much for taking the time to reply☺️

I think the one thing that bothers me is that although there have been so many problems within the NHS they still do a fantastic job. In my case, there have been so many missed opportunities to follow up my symptoms and signs which are quite significant to come to the correct diagnosis. Over the years I don’t think I have seen the same doctor repeatedly so there is no consistency.

I’m going to turn 60 next yr and have spent so many years struggling with my symptoms. My work life and social life have suffered so not much of a quality of life going on.

I so glad I found this site to share my problems and to also get a better insight into SLE from others.

[MusicalFurbaby in reply to Perfumeflower57]

Yes, I’m glad you found us too. It’s certainly hard to get clarity on your illness with the constant switching of doctors, but it sounds like your experience of the NHS has been positive overall, which is great! Hope you get more clarity, and quality of life, going forward.

[Oshgosh]

hi,your life history resonates strongly with me,it sounds like my life history.

I need to sleep,so will contact tomorrow or Monday x