What is wrong with me? Pictures included.

[Idontknownemore]

I had 2 successful pregnancies in 18months, hyperemesis, lots of weight gain, intercranial hypertension, SPD. Had last baby 1 year ago. All of the pregnancy complications have gone thankfully.

For the past year I've lost some weight (4stone), exercising, trying to look after myself better, however, I’m tired (absolutely knackered!), joints are sometimes swollen and constantly sore (hips, elbows, shoulders, wrists and fingers), my face is permanently this red colour in this shape, it flares up when it wants with no reason why (no temperature changes, exercise etc..), my kidneys randomly have me in agony (pee tests detect no infection), feel ill/cold like pretty much all the time, definitely not pregnant.

Had bloods done, only thing came back was my blood reserves are slightly low so told to buy iron supplements (have been on those and NO change).

Ive had physio for my joints- it’s done nothing! I’ve had ultrasounds on main organs and show nothing but a slightly enlarged spleen. Nurse won’t refer to anywhere else, said they’ve exhausted everything and can’t find anything on toward. I don’t know what to do anymore, I’m sleeping fine at night (kids sleep through- phew!) yet still wiped out and feel ill daily.

Sorry had to put emojis on the my face as it would quite identifying if not (due to prominent freckles near my eyes and lips).

Anyone else been through similar?

*untoward

Good you have kidney stones?

Have you ever been tested for lupus? It can cause a lot of your symptoms - joint issues, fatigue, the red "butterfly rash" on your face. I think it can even cause kidney issues.

Have you ever been tested for lupus?

They said they did ANA (no results came back for that so not sure if that was done) but Lupus anticoagulant came back 0.98 (normal range is 0.90-1.20 apparently).

Have they checked your inflammatory markers?

@007DoubleOSeven they said they did lots of bloods - only thing that came back out of range was fibrinogen level came back 5.78g/L (normal range is 1.50-4.50 so that is high but no concern apparently).

i would strongly recommend investigations for Lupus, I have an autoimmune condition myself and I recognise that rash as the butterfly rash, also the achy joints..ask your GP to refer you to a rheumatologist and best of luck x

Ask for a print out of results of all the blood tests they've done recently.

Your symptoms smack of inflammation so they should have checked for this. Have you only seen a nurse or a doctor too?

I think it would be a good idea to chase up the ANA, at that is the standard test for lupus - 97% of people with active lupus will treat ANA positive.

Whereas:
"Estimates are that lupus anticoagulant is present in 15 to 34% of patients with systemic lupus erythematosus"
www.ncbi.nlm.nih.gov/books/NBK544357/#:~:text=Lupus%20anticoagulants%20are%20a%20heterogeneous,phospholipid%2Ddependent%20coagulation%20in%20vitro.

If you've got access to your bloods, check for CRP - this is the most likely inflammatory marker they will have tested, and possibly ESR.

I have this rash all the time too, I tested positive for lupus and anti philosophid syndrome xx

Following this thread with interest. Hope you get some answers OP x

Thank you everyone for the prompt responses, it’s really appreciated.

I will definitely try and see the GP next time (I’ve only seen the APN re. This issue) and query why ANA is missing off the blood results and request to see a rheumatologist if possible.

@Panda8383 can I ask does any of your symptoms/diagnosis run in your family? My grandmother died in her late 20s from DVT and cousins have had early strokes from pregnancies, my nurse didn’t want to know and said that won’t be connected, reading your two diagnosis sound very similar to myself.

You can get access to your medical records in the NHS app and then you can see exactly what they tested for and the results. It's much more information than a harassed receptionist telling you everything is normal and you go away without a clue what has been tested or where you sit in the "normal" range.

@Moopsi really? I’ll try and download it now. Does my GP surgery have to do anything for me to get access to them? Thanks for this, I didn’t realise this exists.

Coeliac disease?

I have a form of Lupus. Negative ANA and inflammatory markers etc but positive Lupus Anticoagulant (some test positive for this and not ANA) and was diagnosed in Photobiology at Salford Royal through UV tests. I have the butterfly rash and other rashes if I go in the sun.
Please ask to be referred to Rheumatology.

@Moopsi I didn't know this either. (tho I'm in Scotland so it prob wont' apply)

Records should be accessible for patients unless there is a good reason why not

Your face looks like gluten face to me. Plus the other symptoms you are experiencing would tie in with it.

Hope you feel better soon op.

i have a different autoimmune condition but a bit like @Notaboutthebass my blood markers are mainly unremarkable. I wasn’t diagnosed until seen by a proper rheumatology team who did one quick examination and an ultrasound and solved 7 years of misdiagnosis.

I hope you get some answers and help OP - it’s exhausting trying to convince people to take you seriously when you know something isn’t right.

@Idontknownemore , no family history of this so it’s all brand new here :-( but all sounds all connected in your situation x

As others have said my first thought was Lupus, I have a diagnosis on symptons alone.
Ask to be referred to rheumatology, but be prepared to wait. My rheumatology podiatrist told me in the summer the wait for new patients was 6 years! Obviously it might be different where you are.
Good luck 🙂

I can't remember now but I don't remember it being difficult. You might have to wait for your GP to do something on their end, I'm not sure. But it is SO useful.

@Moopsi ive managed to do it thank you. Only trouble is.. no bloods are on there. Previous meds are on there but that’s it unfortunately. Thank you though!