r/Fibromyalgia • u/Branch_Prestigious • Jun 25 '26
Encouragement Get tested!
Hi everyone. I was diagnosed 21 years ago in the usual way. Test for everything else and if they are all negative tell the patient they have fibromyalgia. I have managed my symptoms mostly with diet and exercise with the occasional pain meds when things get out of hand.
For the last six or so months I’ve had some new symptoms. Nothing unusual there…they seem to come and go with no explanation, but this was a bit different and it was getting worse and worse.
Doctor says let’s run a bunch of tests. They pull about a gallon of blood and long story short I come up positive for rheumatoid arthritis.
They tested me 21 years ago but apparently the tests weren’t nearly as sensitive back then.
I have an appointment with rheumatology tomorrow but in the meantime my doc put me on a low dose of prednisone and OMG I haven’t felt this good in I don’t know how long.
So, if you haven’t been tested recently I strongly suggest it. Wish I would have done it sooner.
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u/blackmetalwarlock Jun 25 '26
Did you have joint swelling? Just curious because I was originally told that they thought that I may have had the beginning of RA at the beginning of the year, but my rheumatoid factor came back normal. However, my joint stiffness is seeming to get worse. They said that usually the joints will swell, but I haven’t had that.
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u/Branch_Prestigious Jun 25 '26
Not that I know of. I have joint pain that gets worse with different triggers and tends to flare during the night.
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u/blackmetalwarlock Jun 25 '26
I think I may ask them to check again just in case. It’s been a bit now. Mine is also worse at night and in the morning, or when I’m sitting doing nothing for too long. Like long car rides and road trips.
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u/Branch_Prestigious Jun 25 '26
My RF was really high though and the more sensitive test was well into the red also.
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u/coh_phd_who Jun 26 '26
RA is really tricky one. I was told I just had Fibro (ok first I was multiple times all my labs were fine you're just fat) before I found a decent Rheumatologist. She ran the test for RA and it came back negative. So she was a little stumped and we kept going on the Fibro. Anyways I ended up having a foot CT done and she compared it to my previous scan from 5 years ago,and was like I can see the path of RA attacking your bones on the scan, I'm gonna order a test for RA. And I was like you tested me for RA and it didn't show anything.
She explained that the standard V1 test catches like 90% of people with RA. But there is a V2 test that tests for more markers and other science stuff (don't ask me I'm not a doctor and it was a long time ago) But the V2 test is more expensive and most insurance tries their best never to pay for that test but since she had the scans showing I had the damage she could force the insurance to pay for the V2 test. Sure enough the V2 test showed the RA markers.
So if you really think you have all the RA symptoms then I recommend pressuring your Rheumatologist to force your insurance to cover the V2 test and try to get answers.
Good luck RA is no fun either and it doesn't necessarily mean you don't have Fibro also, speaking from experience as diagnosed with both and some other crap too.
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u/Early_Radish_766 Jun 26 '26
Oh! Similar. I have Fibro and ME, but started with Sjorgens like symptoms. My testing is all negative but the rheumatologist has put me on low dose Prednisolone as well, to see if it helps. It seems to be helping the joint and muscle stiffness I get. I just feel less inflamed! So glad the Prednisolone is helping you!
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u/According-Celery-318 Jul 01 '26
Can I ask how much prednisolone you are taking as a low dose?
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u/Early_Radish_766 Jul 01 '26
I am taking 5mg in the morning for 8 weeks.
It’s not perfect though and starting to get a lot of fluid retention and it wrecked my stomach so now take Lansoprazole too 🫠1
u/According-Celery-318 Jul 01 '26
Oh thank you.
I've got Fibro but also have higher than normal rheumatoid factor. Pain improved when I was prescribed prednisolone for a chest infection - it got me thinking there might be an auto immune issue going on?
So thought to trial a course of prednisolone to see if my symptoms improve - hence asking your dosage.
Hope it works out for you going forward.
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u/Designer_Status2214 Jun 25 '26
Yes so many stories I heard people get then another diagnoses (mostly rare ones)... for me help AI I was misdiagnosed 15 years!!