Anybody had autoimmune condition misdiagnosed as fibromyalgia?

[florenceandthemac]

Also posted this on the Autoimmune board, sorry.
I'm currently undergoing tests to 'rule out' psoriatic arthritis, but the rheumatologist said she thinks I have fibromyalgia.
However, I don't have the all over chronic pain that's described as a symptom of fibro, or the exhaustion.

I have joint pain, in multiple joints, not all at the same time. It's mild, but it's there every day in one joint or another. My finger joint pain is pretty much constant now, with stuff fingers.

In addition, I have severe nail psoriasis and dry eye which many people have before a psoriatic arthritis diagnosis.
From feeling my joints, she doesn't think I have any inflammation. So I'm booked in for ultrasounds, X-rays and (another) MRI in the next two weeks.
She did say even if I don't show signs of inflammation now, and therefore no PsA diagnosis, "doesn't mean I won't have PsA in future" because I do have the signs of it as I've mentioned above.
But is that not like saying I might have it now but it's too mild for a diagnosis, so we will call it fibromyalgia?!

Anybody else been in this position?

Have they ruled out Sjogrens syndrome? That can cause dry eyes/mouth and joint pain. Primarily in finger joints.
Blood testscan be false negative and the gold standard is a lip biopsy

I have RA, with some PsA traits and would have felt brushed off with a Fibromyalgia diagnosis and these symptoms - is there really no inflammation in your blood tests?

The arthritis diagnosis will lead on to a lot more treatment options, so it does matter.

The pitted fingernails is so specific to PsA, it does sound likely. The co-morbidly with Sjogrens is also indicative of autoimmune arthritis.

I don't think it's Sjorgen's, but obviously can't say for sure.
Everything points to PsA, but if it's not that, it's definitely something!
I'm 35, and I feel like my body is giving up on me, despite being so fit and active.

I've had numerous blood tests via my GP, but I can't recall which ones exactly.
I've just this week had more blood tests via my private rheumatologist, and I've made sure to take photos of the blood forms so I can look what they are testing.
Honestly I'm hoping the bloods or scans show something, as crap as that sounds, as I honestly don't think this can be fibro

I have a connective tissue disorder that means all my collagen / cartilage is faulty and I have arthritis in all my joints. It doesn't show up in standard blood works etc. It shows a bit on x-rays / MRI but not that much.
Sorry you're feeling rubbish.

My DD was diagnosed with fibromyalgia and then a few years later with Hashimotos. I suspect it's quite common for fibromyalgia type symptoms to be properly diagnosed some time later.

I was diagnosed with fibromyalgia. Turns out I have psoriatic arthritis, Lyme disease, ATTR Amyloidosis and a whole host of other things. Took me 15 years fighting to get the right diagnosises

Thanks everyone.

Sorry it took so long @Atmytethersend
Was that 15 years between a fibromyalgia diagnosis and your PsA diagnosis?

Yes it was, absolute shit show to be honest. Hence my name on here

How are you now? @Atmytethersend

To be honest not great. I honestly thought getting my diagnoses would be a turning point, but because of how rare one of them in, doctors will not even try to help as they don't know enough about it. My only chance of having any quality of the life I have left which at the minute I've been told is 18 months, is a private clinic, because although they would not be able to cure me, they could prolong my life for many years. But £100k is not something I have unfortunately

Yep , actually had psoriatic arthritis. All bloods normal, all ultrasounds and MRIs not.

My dd was misdiagnosed with fibro. She actually has lupus. It wasn't until she developed kidney issues that it was found. She was fobbed off for years

I'm really sorry to hear that @Atmytethersend
I don't really have any words, I hope you can find something that helps, it's really not fair.
I have been googling your conditions as I hadn't heard of the ATTR one. I really do hope you can get some treatment.

@NotquitewhatImeant what did your scans show if you don't mind me asking. And how long was this after your fibromyalgia diagnosis?

I was diagnosed with fibromyalgia and later with ms.

Sorry to hear that too @Runninghappy
I had MRIs earlier in the year as they thought I may have MS, but this was ruled out.
I hope your symptoms are under control

Thabnk you so much and I hope you can get the help you need too

Kind of. I have Sjögren’s syndrome. Was feeling dreadful though, lots of symptoms that didn’t make sense (in relation to the Sjogren’s). My rheumatologist said my symptoms aren’t related to the Sjögren’s syndrome so must be fibromyalgia. Turns out I have raging Crohn’s, diagnosed earlier this year. I was quite poorly just after my diagnosis, spent quite a lot of time in hospital. Symptoms improved when the Crohn’s was a bit more under control (although I’m not in remission yet unfortunately).

I believe people are just told they have Fibromyalgia when doctors can’t figure the real cause is. Sorry if that offends anyone. I knew there was something doctors were missing in my case and feel like that’s probably the case with the majority of Fibromyalgia diagnoses. Either people have some other condition that’s being missed or they have some autoimmune condition that doctors don’t know about yet.

I started of with palindromic rheumatism which later developed into RA.
After a bad flare up my Rheumatologist said I "probably have fibromyalgia ".
I disagreed with him as I think it's a lazy diagnosis and usually means they don't know. It was all over my medical records for years so whenever I had a problem it was put down to that. I never accepted it.
Eventually I got a second opinion and changed Rheumatologists. The new one could find nothing to indicate fibromyalgia. In fact my RA is completely managed now.

You’ve worded it better than me! I’ve had a couple of gins and “lazy diagnosis” was what I was trying to say!

I wasn't diagnosed with fibromyalgia but was told by my first rheumatologist that my symptoms were caused by a vague 'mechanical issue'. Was diagnosed with psoriatic arthritis a couple of years later. Bloods showed mild inflammation but it was only when my finger joints swelled up like balloons that they did scans, and found that the linings of my finger joints are significantly thickened.

The nail pitting plus your other symptoms do sound very much like psoriatic arthritis. Really hope you get answers soon, it's rotten.

I’m similar to you but not yet seen Rheumatologist - my appointment is not until January. I finally managed to get referred after three consecutive blood tests over a 6 week period showed mild inflammation: ESR 29, CRP 20ish, WBC 11-12ish and platelets 460ish

I’m worried they will say there is nothing wrong. Previously I’ve only ever got as far as physio who twice have said after looking at my hands they don’t think it’s inflammatory. They said my pain was caused by hypermobility/RSI.

My main complaint is finger and wrist pain and stiffness, I do also get pain in my elbows and occasionally my knees, lower back, and heels. My fingers do get a little swollen but not massively so, and they aren’t hot or red.

I do have psoriasis which is I was thinking could be PsA?

Thought I would update. I had a psoriatic arthritis diagnosis last week.
Rheumatologist still 'thinks' I have fibromyalgia, but as long as I'm treated for the PsA I'm not going to bother with anything for the fibromyalgia for now

I had a diagnosis of undifferentiated Connective Tissue Disease for a year but at my latest rheum appointment the blood test which they disagnosed it with was negative so they told me I have fibromyalgia and discharged me. I absolutely do not have fibromyalgia! If it turns out that I do not have UCTD then I would put money on it being ME/CFS, but fibromyalgia does not fit my symptoms. The rheumatologist kept trying to put words on my mouth: “so you have pain in your joints that feels as though it’s tingling sometimes.” Er…no! I never said that! Yet on my discharge letter she’d written down every statement that she said to me like that even though I disagreed with each one. It’s a shit show and now I’m stuck here, ill as ever, with no treatment and my GP rolling his eyes whenever I’m ill because it says fibro at the top of my records so now everything is due to that 🙄