Fibromyalgia diagnosis. Misdiagnosis? Looking for advice.

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As the title states, I received a diagnosis of Fibromyalgia yesterday, but I don’t think it’s correct. Female, 36yrs

May 2025 - unilateral swelling in right foot. This has got progressively worse.
blood clot ruled out. Antibiotics for suspected cellulitis. Furosemide Prescribed.

Since May the foot swelling hasn’t resolved. Pain has started spreading up my leg as it’s so uncomfortable. Toes are painful.

alongside this I’ve started experiencing tiredness that wipes me out, feeling hungover and out of sorts. I‘ve developed a malar rash across my cheeks and nose. Joint pain in fingers. Sensitive to heat and cold.
lump in my neck, itchy eyes and persistent sore throat.

GP referred to orthopaedics (still waiting)
I have gone private and they advised I would be better being assessed by rheumatology.

private appointment arranged and seen consultant. Within 5 minutes they had decided I had fibromyalgia and advised mindfulness and sleep hygiene.

whilst the cognitive symptoms can be seen in fibromyalgia, I don’t have the pain as described when I’ve researched. I scored 4/20 on pain points (my collar bone and foot)

The problem is, I’ve had various bloods done and they all come back normal or high end of normal. ANA negative, so they have told me it’s not auto immune.

I’m at a loss and can’t find much to support the diagnosis and my symptoms.

Has anyone experienced similar and can advise where I go next.

Thank you for reading, sorry for the long ramble.

It was a private rheumatologist who has jumped straight to fibromyalgia. They looked at my bloods and stated that it couldn’t be auto immune. I quote “you could join the army with these bloods”

It was a private rheumatologist who I saw. This is my frustration. One who had very good reviews and is the head of rheumatology at my local hospital.

Your vitaim D is way to low. You can buy high dose ones yourself. I take 30000iu daily to keep mine up, your right the standard multivitamins don't contain enough and my work colleague was also diagnosed deficient while taking one.

I was so tired and sore when my vitamin D was low. I would certainly look to correcting this first.

It's absolute nonsense that it can't be autoimmune without positive bloods. Can you complain via PALS?

As another poster said, some of that does sound like psoriatic arthritis, which is a seronegative inflammatory arthritis. Rheumatoid arthritis can also be seronegative. I've recently been diagnosed with PsA and learned that many rheumatologists have very scant knowledge of even not very uncommon AI diseases.

Thank you for this.
can I complain to PALS if it’s a private appointment?
I was shocked how quickly I was dismissed. I think I need to look and find someone who specialises in seronegative AI. PSA symptoms seem very similar to what I’m experiencing.

Have to say that rheumatologists never cease to amaze me with their lack of knowledge about something they’re supposed to be experts in. Not sure if they’re just not interested in autoimmune stuff. 🤷🏻‍♀️. How on earth a consultant can categorically state something so untrue with regards to the bloods is beyond me. I’m not sure if PALS would oversee a complaint. I’d email the consultants secretary maybe.

it’s so annoying. I paid £300 for a private rheumatologist last year and she was useless. Said some stuff which wasn’t correct and refused to confirm a diagnosis of something I’ve had picked up on an nhs mri scan. Said it wasn’t bad enough for a diagnosis. God knows how you can have ankylosing spondylitis seen on scan but not get a diagnosis even with textbook symptoms and a positive gene test but here we are.

That’s absolutely shocking @HighStreetOtter, but sadly it doesn’t surprise me with Rheumatology. I hope you’re doing better now.

Aah no, I guess PALS isn't relevant for the private consult itself, but if they refuse your GPs referral based on this then definitely pursue a complaint.

@HighStreetOtter it's really shocking how little they can get away with knowing about some of the conditions where we'd expert them to be the experts.

If the pain and swelling started after your foot injury it could be crps, chronic regional pain syndrome, its difficult to diagnose but that's what happened to me.

Regardless of what else you do, I would recommend starting a high dose of Vitamin D and also adding some B12 and iron supplements.

It took me years of having pains and face rashes before my ANA went from borderline to positive. You say yours was negative but what was it and were you told the pattern?

I will definitely be looking at changing VIT D. Unsure how it was missed by everyone.

not sure if that makes sense….
I’ve had a look and it says:
ELIA ANCA
MYELOPEROXIDASE(MPO) ANCA < 0.2 iu/mL
PROTEINASE 3(PR3)ANCA < 0.6 iu/mL
Anti-nuclear factor level 0.1

Anti-neutrophil cytoplasmic antibody level
Anti-neutrophil cytoplasmic antibody level ANA Positive
NEUTROPHIL CYTOPLASMIC ANTIBODY COM ANA detected, this could mask a peri-nuclear ANCA
antibody MPO and PR3 ANCA to follow

I’ll look into this further. A significant amount of time passed between injury and swelling (3 years) fracture was minor and only required a boot for 6 weeks. Healed well and no further issues. Swelling isn’t in the location of the fracture.

I’m sorry you’ve experienced this. It feels even worse when you pay. I do wonder if they’re not interested in AI conditions.

Have you since found someone who listened and looked at your results. I hope you’re getting the right treatment now. X

I have CRPS.

it’s split into two categories, one that is subsequent to injury and one that isn’t.

it’s not a particularly helpful diagnosis as there is very little that can be done for it (physio, pain meds, SSRIs etc).

if you have any other possibilities (arthritis, specific joint issues) I’d look at them first as they are likely to be more productive.

diagnosis of CRPS is by the Budapest criteria these days.

Ok, I asked ChatGPT what it thought of your blood results. It said.

What it rules out
✔️ ANCA-associated vasculitis
✔️ Some (not all) severe systemic autoimmune diseases
What it does NOT rule out
❌ Seronegative inflammatory arthritis
❌ Early connective tissue disease
❌ Cutaneous lupus
❌ Dermatomyositis
❌ CRPS
❌ Lymphatic or vascular causes of swelling
❌ Local inflammatory pathology
This is crucial.
Why this still does NOT equal fibromyalgia
Fibromyalgia:

• Is not diagnosed on blood tests
• Is not diagnosed because tests are normal
• Does not cause:
• Persistent unilateral swelling
• Malar rash
• Lymphadenopathy
• Objective inflammatory joint pai

Then said.

What would be reasonable next (and defensible)

1. Rheumatology (still appropriate)

Specifically to assess for:

• Seronegative inflammatory arthritis
• Connective tissue disease spectrum
• Inflammatory myopathy

Bloods that may still be relevant:

• ENA panel (Ro, La, Sm, RNP)
• CK
• Complement levels
• ESR/CRP trend
• Urinalysis

1. Imaging of the foot/leg

Given the persistent unilateral swelling:

• MRI foot/ankle or lower leg
• Consider lymphatic causes
• Consider CRPS if pain, swelling, sensory change

1. Dermatology for the malar rash

A dermatologist can:

• Differentiate lupus rash vs rosacea vs other dermatoses
• Consider biopsy if indicated

This is often more diagnostic than bloods.

no idea how correct this is btw.

Hi op i have. I will d.m you with info .

Did you re search the private rheumatologist? If they work for the nhs they just think you are skipping the nhs aye and will just look at blood and say all ok .
Even when you ask your doctor to refer you the waiting as non urgent ( routine ) can be two years

alongside this I’ve started experiencing tiredness that wipes me out, feeling hungover and out of sorts. I‘ve developed a malar rash across my cheeks and nose. Joint pain in fingers. Sensitive to heat and cold.
lump in my neck, itchy eyes and persistent sore throat.

I think your foot and the above are two different things imo but I don't know anything about psoriasis. The above is lupus with possible sjorgens (eyes). It is NOT Fibromyalgia. I must have done something really bad in a previous life as I have all three and I can tell which one is having a flare based on the symptoms. Fibromyalgia (for me) is all over pain, from the tips of my toes to my scalp. Even the eyeballs can hurt. The fatigue feels like I'm walking through treacle whilst carrying a 19st man. It's flipping awful.

I take a 3,000 Vit D with added Vit K spray as it aids absorption. You can take up to 5,000 a day safely if you need an extra boost. The 1,000 (or 25ug) is based on a healthy person who works in an office instead of a roofer/farmer who works outside, everyone else who have any issues, or work nights, or housebound etc need a lot more.

Swollen foot - lymphoedema? Go see an MLD practitioner.

Thank you, I never thought to input into chat GPT. This has been helpful x

I did wonder at first if I was looking at 2 different issues, but the pain in my toes is so similar to my fingers and that is mainly where the swelling is along my toes and ankle.
That sounds awful, I hope you manage to avoid to many flare ups. I’ll look into the vit K, thank you x