My feed

to access all these features

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

MNHQ have commented on this thread

Autoimmune disease

Lupus .. please tell me your symptoms and how you were diagnosed

37 replies

dovegrey18 · 09/06/2018 22:43

I have been feeling rubbish for years. I've always had to pace myself and frequently feel very run down as if I'm running on empty. Sore throat, always feeling like I'm fighting an infection , low grade temp, what I considered wide spread inflammation in the body in the form of pain etc. This has always been attributed to some surgery (which included the removal of the spleen) I had several years ago and tbh I believed that too.

These last 3 months have been worse though - I haven't had any let up with aching muscles and overwhelming exhaustion. Usually I can get myself back on track / damage limitation by sleeping 10 hours overnight, napping in the day, cutting back on socialising and basically just doing the basic eating sleeping resting etc. This time it hasn't helped at all.

I've been reading about fibromyalgia and chronic fatigue syndrome and recently wondering if I have something underlying. The symptoms however don't seem to fit. Went to the GP yesterday and it was a locum Doctor. She didn't know about my previous surgery so looked at it all objectively. I said to her that I know the surgery was major and I had a really tough 3-4 years after but things did start to settle. However 7 years on I thought I would be a lot better by now. She agreed. She said they'll run bloods and check for auto immune diseases. She asked about family history - mum suffers from
Coeliac and Rheumatoid arthritis. She mentioned lupus specifically a few times.

Since coming home I've read up on it - I only knew that it was your immune system attacking itself and I've only
heard of it in severe forms. However going through the list of symptoms I was surprised how close it hit home.

Apart from the overwhelming debilitating exhaustion and muscle pain , I've had the following :

  • 2 unexplained episodes of rash covering my whole body and affecting the joints. First time was worse and lasted 3 weeks. They just kept telling me to take antihistamines which did help albeit slowly
  • vaginal dystrophy (dryness)
  • reoccurring UTI's with multi resistant bugs. After bladder washing treatment, systems still persisted and this was diagnosed as interstitial cystitis (bladder tissue inflammation)
  • 2 miscarriages
  • unexplained episode of very sore knees for over 4 weeks
  • inflamed red skin on face
  • ongoing hair loss
  • always have very cold feet
  • sun sensitivity

I'm going back for bloods next week.
Does this sound like lupus to you? Albeit mild.

Please tell me how you were diagnosed and how long the process took
OP posts:
dovegrey18 · 10/06/2018 09:04

Shameless bump

OP posts:
BrownTurkey · 10/06/2018 09:15

Sorry you are going through this. Bumping for you.

HotNoodle · 10/06/2018 09:17

Some of those symptoms I had with a thyroid condition.
Get that looked at too.

Flowerpower321 · 10/06/2018 09:23

Mine was suspected by a locum gp after years of being told it was just life with children. Had a positive ana blood test so got referred to a rheumatologist who also did further blood tests including a positive anti ds dna which is specific to lupus. Not all positive ana bloods mean lupus- it’s positive with other auto immune conditions like hypothyroid. Treatment has been hydroxychloroquine, steroids and immune suppressants which have helped, I no longer have days where I cannot move for the pain. Still have overwhelming fatigue and have to be careful to avoid uv light and wear sunscreen every day. Good to know it’s not all in my head though!

TammySwansonTwo · 10/06/2018 09:27

I would also make sure they’re checking your thyroid and your vitamin levels (especially vit D answer B12)

Evenkeel · 10/06/2018 09:32

No advice, I'm afraid, but watching with interest because I have almost all your symptoms too and have been suspecting something autoimmune. Most recently I've had episodes of increasingly severe unbearable facial itching and rash which is really freaking me out. Plus sore knees and hips. I'm practically mainlining Piriton.

Seeing the doctor tomorrow but expecting the usual 'go for a blood test' response, so there won't be any progress for ages.

Good luck, OP, it's miserable.

AnnaMagnani · 10/06/2018 09:37

Things that sound like lupus are:

the facial rash
sun sensitivity
family history of autoimmune disease
generalized muscle and joint aches

Your story is pretty much screaming lupus or another rheumatological autoimmune disease.

Well done that doctor for listening to your story properly and taking a proper history.

Even if your blood tests come back negative, with that history I would want to see a rheumatologist.

whiteroseredrose · 10/06/2018 09:37

MIL has this. From what I understand the symptoms can be wide and varied. Hers are also mixed in with thyroid problems too.

I remember her aching everywhere and being in great pain. The weight of sheets on her bed was too much. She also gets very itchy and has a rash on her face sometimes.

The symptoms are very much managed by steroids and she lives normally. The downside is thin skin though.

dovegrey18 · 10/06/2018 12:15

Thank you all for replying.

I can't believe I've just learnt to live with it rather than pushing. The first few years after the surgery were horrendous with recurrent infections, severe restless leg syndrome and exhaustion. It did ease a bit around 2015 but I think by then I learnt to pace myself and listen to my body. I then had two miscarriages and had a successful pregnancy resulting in emcs and the first 4 months post birth were horrendous. I was very run down and was fighting infection after infection. Understandably it was put down to new born etc.

Whenever I've questioned the exhaustion and aches they've done basic bloods then sort of shrugged their shoulders and said I've come a long way since the surgery which was major surgery.

Reading about lupus has felt like a revelation.

I'm just worried it won't come up in the bloods unless im midst flare up.

Will keep this updated

OP posts:
Cocolepew · 10/06/2018 12:24

I never have positive bloods but have been diagnosed on symptoms.
Hair loss and horrendous fatigue was what forced me to go to the dr originally.
When I get a flare up I always get pleurisy, it was that that got me my diagnosis.
The thing with auto immune diseases is they are all so similar.

dovegrey18 · 10/06/2018 13:16

Is it rheumatologist who will diagnose?

OP posts:
dovegrey18 · 10/06/2018 13:19

My thyroid (only TSH I think) and vitamin D were checked back in December. Thyroid was ok and vitamin d was 'sufficient'. I've been taking vitamin D but found no difference.

She said she'll check all that again anyway and I'll ask for a copy of the results

OP posts:
LornaMumsnet · 10/06/2018 13:52

We're just moving this over to auto immune diseases at the OP's request .

Cocolepew · 10/06/2018 17:33

Yes, ask for a referral to a rheumatologist.

dovegrey18 · 10/06/2018 18:21

Thank you. I have private healthcare so hope the GP is quick to refer me

OP posts:
dovegrey18 · 10/06/2018 20:15

Do you think I should tell the GP lupus fits the bill or should I leave the ball in her court and just give her a list of the symptoms which I didn't consider relevant before?

OP posts:
dovegrey18 · 11/06/2018 23:16

Bloods taken today Grin

OP posts:
SluttyButty · 12/06/2018 11:41

I have other autoimmune diseases but my rheumatologist still suspects lupus is lurking. I've had previous positive DS anti dna tests, had them done again last week and off so see my rheumatologist today.

And yes only a rheumatologist can diagnose it. And the Gp will list symptoms and bloods in the referral. Then when you see the rheumy they'll do an extensive history so ask all immediate family if they either have or can remember older members having any autoimmune diseases.

Oh and start keeping a small diary so you can track flares.

dovegrey18 · 12/06/2018 16:32

Thanks v much

OP posts:
SheldonandPenny · 23/06/2018 09:48

Hair loss, dry eyes, joint pain, exhaustion, malar rash, dislike of summer weather, vit D deficiency (12), normal bloods, weak positive ANA. I am due a Rheumatologist appointment for diagnosis. My GP thinks it's a foregone conclusion that I have lupus. I am not sure still and hoping not...

dovegrey18 · 24/06/2018 19:56

Thanks sheldon. Keep me posted please. I think I would actually be pleased with a diagnosis as it would explain so much over the years

OP posts:
dovegrey18 · 27/06/2018 08:25

Just to say nothing came up in bloods apart from high platelets which has been consistently higher than normal range for years. Rheumatologist appt tomorrow (through private healthcare).

Any advice? I'm a bit nervous/ anxious about pitching everything in a manner which the consultant will understand if that makes sense. Don't want to forget any symptoms. Writing a list today but don't want to come across like a worrier /every little thing noted but I'm not sure what's relevant or not

OP posts:
SheldonandPenny · 03/07/2018 09:31

How did it go with the Rheumie dove grey? I didn't see your most recent post. Was the list helpful? I am noting for when I go.

PalePinkSwan · 06/07/2018 13:10

@dovegrey18 - how did it go with the rheumatologist?

dovegrey18 · 06/07/2018 21:21

Sorry I missed these posts - it went better than expected in that he asked lots of questions and listened attentively to my responses.

Examined me and said that my joints mostly felt ok but I am tender in lots of places.

He said there was no diagnosis clearly standing out for him at this moment in time - there are some weak indicators of inflammation so he would run some more bloods because ideally want to rule out anything auto immune which could be causing damage. He said some symptoms fit with fibromyalgia but others not. They also took urine sample, chest x ray and today I had an MRI of my hands and feet.

He did say it could fit with coeliac but the test I had with GP came back negative and the other thing it could be is vitamin D deficiency. I last had vitamin D tested in December and it was borderline sufficient.

From the sounds of it, if nothing comes up in any of the tests then I think they will diagnose as fibromyalgia / chronic fatigue.

OP posts:
Please create an account

To comment on this thread you need to create a Mumsnet account.