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.

You can get ANA negative lupus. About ten percent of lupus cases are ANA negative. Would explain the rash and joint pain. No idea about unilateral swelling though.

Somi would assume you can get other autoimmune diseases and still be ANA negative.

And you’re right that fibro doesn’t fit, it doesn’t cause malar rash, you do t have enough pain points, it doesn’t cause unilateral leg swelling,

id be asking for a refund and a second opinion

Thank you for replying.
I came away thinking I don’t want to pay for this 🤦🏼‍♀️. I was in such shock I just left and cried.
I was dismissed when I asked about ANA negative autoimmune issues and was told my bloods are all fine, so no auto immune issues.
I was definitely made to feel that it was all in my head and that it’s my fault for being a working mum.

I have negative ANA and two pretty rare autoimmune conditions. I was initially fobbed off with fibromyalgia diagnosis. Please get a second opinion. Fibro imo should only be diagnosed once everything else has been investigated.

Were your bloods actually all ok- normal range for NHS is not actually optimal. For example ferritin should be at least 75 but the NHS have only just raised their ok level to 30. B12 is also marked ok at low levels in this country. I presume they looked at thyroid function - did they do a full panel or just TSH?

Have you had any scans? as I know how hard it is as a woman to get taken seriously. Drs are very keen to fob us off with an easy diagnosis

As previous pp my first thought was Lupus. Other auto immune conditions can also present with negative bloods. You need a decent rheumatologist who will fully investigate and not fob you off with fibro.
Will your GP refer you to rheumatology? Different consultant to the one you saw privately. Do a symptom diary whilst you wait.

I’m sorry you also experienced this. It makes you feel like you’re going mad.
I’m shocked at how I’ve been treated because I’m female.
I’m going back to the GP and asking for a referral (the consultant I saw also works at my local hospital) so I need to make sure it’s with someone else.
I’ve been on the NHS list for a scan since June.

I’ve been told these are all normal.

Rheumatoid factor 12
ESR 15
CRP 5

Total B12 was 242
ferritin 47.4
Vit D 18.4
TSH 2.8
FT4 14.1
FT3 4.7

I said yesterday I was going to write a diary. I already take pictures to document how bad things get.
The consultant I saw is the head of rheumatology at my local hospital (NHS) I need to see if I can be seen by someone else or if they will refer me to an alternative hospital.

Could be Schwannomatosis as well but impossible to diagnose without MRI and then genetics on removed samples.

www.lupusuk.org.uk

Have a look at this website. May have some useful information for you.

vitamin d of 18 can cause significant tiredness and joint pain
ferritin is okay but you might want to supplement it a bit to get it over 70 in view of tiredness
the malar rash of lupus is specifically associated with the systemic form ie the ana positive form. Other forms of skin lupus can be Ana negative but these aren’t associated with the malar rash.
Neck lump - worth an ultrasound and potentially ent review given persistent sore throat
foot swelling does not sound like fibromyalgia - fibromyalgia does not cause swelling

B12 is on the low side - less than 300 can cause fatigue/brain fog etc. you won't get nhs help as it's within their range - supplementing with a spray is better than tablets imo Amazon have them.

Ferritin is ok but not amazing and below optimal.

Vit D (assuming labs same as mine) is low and needs supplementing - again with a spray and one also containing k2.

Do not pay for this. Ask for more investigation work. With one of his / her colleagues
fibro should not be diagnosed just like that

do you have psoriasis in your family? I was wondering if psoriatic arthritis may be a consideration? I’m only really versed on this disease and often doesn’t present well in bloods / scans

You definitely need Vit d supplements. Dd had terrible joint pain when hers was in the 20s. If your b12 and ferritin are also a bit low then ask about a coeliac test.

Please raise that vit D with your GP. Standard 10 microgram supplements will not get that up. They can prescribe stronger ones.

Edited to add, my rheumatologist told me once I'd got my cut D back in range to keep taking it at the normal 10ug, not just in winter but all the time given my indoor job. So I tried taking the usual 10 ug, but it dropped again. I find I have to take 25ug but I do get it checked yearly to make sure it's not gone high.

Obviously this isn't going to fix to your swelling etc, but it might help with the joint pain. It did mine. Otherwise the rheumatologist was going to go down the line of rheumatoid arthritis and methotrexate, given my other autoimmune conditions. So I'm really glad I tried vitamin D!

No family history of psoriasis, but SLE & RA. I’ll mention this to the GP. Had a read up and it sounds similar to what I’m experiencing. Thank you

Thank you, I’ll look into that. I do take vit D as part of a multivitamin, but it’s obviously not cutting it. X

Doesn’t sound like fibro.

fibro is usually considered widespread pain and your situation sounds more like injury or something specific to your foot.

any history of injury to the foot at all?

How would you supplement ferritin?

My first thought was Lupus.

Iron tablets

You need a referral to rheumatology not orthopaedics, primarily to rule out/in SLE

She’s paid privately for rheumatologist appt hasn’t she? I read it that it’s rheumatology who have diagnosed her with fibromyalgia? Can’t think an ortho would.

I'd wonder too about psoriatic arthritis or crps, with a family history of sle and ra it's need. I'd go private or ask for a second opinion which you can by law now.

I had a small fracture on the top of my foot a few years ago, but X-ray shows it has healed and the swelling is around the joints (toes and ankle)
ortho have ruled this out.