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?

Under "Your GP Health record" there should be a tab that says "Test results"? If not it may be that your GP needs to give you access somehow, sorry.

It does sound like some sort of autoimmune disease. You might find that removing dairy or gluten helps as autoimmune diseases tend to have triggers (food, environment or stress). Maybe see if you can correlate what you're eating to how you feel.

Rosacea

@MisschiefMaker thanks, I did no gluten and dairy for 6 months and it didn’t make a difference unfortunately 😞 I also cut out all animal products (I went vegan and gluten free because dc3 was suffering from allergies and breastfed).

Stress definitely flares my pain and symptoms though, but I have 3 dc under 6 so it comes with the territory I’m afraid 😅

Get the ana result and get referred to rheumatology. NB lupus anticoagulant blood test is for anti phospholipid syndrome NOT lupus (common misunderstanding inc in medics) although many people with lupus have both. Blood clots linked to APS.

Thank you, I definitely will.

Ive spoken to my gp surgery - they said I need to call in the morning to try and get an appointment. I also asked re. Having access to blood test results and I need to go in with photo id so I’ll also do this tomorrow.

Lupus / Autoimmune in general. Have you had your thyroid levels tested as well? Even if they’re telling you results are fine I would make sure you see the actual results yourself, so you can validate them, as NHS doesn’t do all of the relevant tests and don’t treat at the levels they often should do.

@WilburTheIron i have had it checked (thyroid), all was fine. I will definitely get the results tomorrow. I’m just worried that I’ll hit a brick wall tomorrow, I’ll get the results, explain my symptoms to the gp, gp says there’s nothing more they can do and refuse referral to rheumatology and I’m left again. It’s so deflating, if I had the money to go private I probably would 😞

My sister had dermatomyositis with a face rash like that. But she had progressive weakness to the point of not being able to hold her arms up. She had her CK levels measured to provide the diagnosis

It’s very common for the NHS parameters for autoimmune type conditions to not be in line for what should be treated - for example thyroid disease diagnoses often slip through the cracks. They often don’t run full thyroid panels either. So if you can get print outs of your tests and results then it can help you to figure out your next steps.

It’s so frustrating that you can be left with all your original symptoms just because you’ve ‘passed’ the obvious tests to look at. And it’s really hard to advocate for yourself when you’re already feeling so rubbish in the first place. Fingers crossed for you.

Also on a 6 year waiting list here. I had a higher than normal reading for dsdna ( I think it was called). I get the rash plus lots of other chronic pain, thyroid antibodies, underactive thyroid, blah blah

But yeah, 6 year list

Ex-nurse here with a friend with Lupus. It was my first thought too. I'd ask for the bloods to be repeated.

Perimenopause? How old are you? I’m in agony with exhaustion, joint pains, nausea, feeling ill for months and unable to do anything. GP says it’s perimenopause.

Lupus x hope u get it sorted

Thank you everyone! Im seeing the GP this afternoon so hoping I’m heard. Today Ive come out in even butterfly rash, 5 mouth ulcers, two massive cold sores (appeared overnight) and sore kidneys so it’s not just this feeling it’s physical too 😞 I’ll keep you posted on how I get on ☺️

Lupus would also be my first thought based on the rash and your symptoms.

Lupus or another rheumatological diagnosis - you have sore joints and a classic heliotrope rash.

Mouth ulcers are another Lupus symptom.

Do you get random fevers too?

If this is an issue I recommend Benenden for a quick diagnosis / referral. You only have to be with them 6 months and it is £11.50 a month.

I’ve been to see the GP, he said my blood results came back and said the ANA is the connective tissue result and it came back within normal range. He’s referred me to rheumatology though as he said it’s all very suspect and something rheumatology will definitely be better at diagnosing. Just got to wait it out now 😔

@Notaboutthebass not really, im more consistently cold than anything.

Glad you've managed to see your gp. It's a good idea he's referring you to a rheumatologist. I would say your symptoms look and sound very much like mine. I was diagnosed with an autoimmune condition a few years ago.

I'd think Lupus because of the butterfly rash on your cheeks. Rheumatology referral

That's good you got a referral, fingers crossed it's not too long before you're seen 🤞

My immediate thought was lupus. And it's worth pushing for GP referral.

I have a similar (but distinct) condition and my bloods were negative but GP (eventually )referred to specialist on basis of symptoms. More specialised testing showed I did have the condition.

There's obviously something going on, so don't let the GPs dismiss you on basis of bloods alone. I let them bat me away for far too long, only to find I really did have a serious (albeit treatable) condition