Exhausted being exhausted! Lupus?

[Moocrewmummy]

Any guidance greatly appreciated!
Im exhausted being exhausted! 😔 For the last 5 years I’ve had flare up’s of symptoms which floor me. They are rendering me pretty much useless. I have bouts of poor health. I get the symptoms listed below for weeks/months at a time. Sometimes debilitating other times semi manageable. I’m a 31 year old mum of 2 so being non-functional isn’t an option but it’s getting to a stage where I’m getting worn out by the smallest of tasks and the joint pain is getting worse. I’ve been to the doctors numerous times had bloods done recently, X-rays on joints and stool years ago. All came back fine apart from low iron which resolved after treatment. I’ve had an under active thyroid since I was 18 and it’s within its range. Lupus has been mentioned numerous times by numerous gp’s but even though the symptoms fit there’s no bloods to prove it so I’m back to square one. I’m currently on maternity leave and due back to work soon so I need to try to get some resolve as at the minute I am floored but gp’s just close the book when bloods come back normal. I don’t want to look like someone who’s a hypochondriac, it’s just got to a stage where I feel like I’m palmed off with “it’s hormones” or “it’s your mood” as I feel the problem is more than that. Fibromyalgia was mentioned by one gp but she felt it wasn’t a “perfect fit” as I had some symptoms uncharacteristic of that (face rash, sores, shortness of breath). Lupus does fit but the bloods don’t😔
Symptoms
EXTREME exhaustion
Joint pain
Nail psoriasis
Hair loss
Brain fog
Face rash
Nasal sores
Dry eyes
Shortness of breath
Anxiety/low mood

Vasculitis? Lots of other things it could be- have you had thyroid, b12, vit d, autoimmune bloods done? I'd ask for a referral to rheum.

I have both Lupus and Fibromyalgia and there isn't much (symptom wise) between them. Ask for a Rheumatology referral as it might even be a different auto immune condition.

I don't know much about thyroid problems but I assume you are being treated and managed for it?

Sorry when I said thyroid I meant a full panel rather than just TSH

Get your iron levels checked too.

Unfortunately it can take years for the blood tests to pick up what's wrong. See a Rheumatologist and emphasise the symptoms and lowered quality of life. Rheumatologists are likely to wait until you're in your 40s to diagnose Sjogrens (if it's that) but they could consider other possibilities. I would research and then try diets like Atkins/keto as they can reportedly lower inflammation. Also a multivitamin and a high strength vitamin D should prevent nutritional deficiencies which can cause tiredness, aches and pains.

Sjogren's Syndrome (recently reclassified as Sjogren's Disease) is another autoimmune possibility. It can have a lot of crossover symptoms with Lupus. You need the blood tests which can show up autoimmune issues, not just the normal full blood count. Although some people are seronegative which means it doesn't show up in bloods. Saliva gland biopsy or gland ultrasound can confirm it.
I would guess the low mood/anxiety is due to the exhaustion of what you are going through, rather than a disease symptom. Most of your symptoms listed have been listed as Sjogren's symptoms. Google the British Sjogren's Syndrome Association for more info. It can affect people in many different ways. There's not just a standard "everyone gets xy & z".

EXTREME exhaustion - Y
Joint pain - Y
Nail psoriasis - not sure
Hair loss - Y
Brain fog - Y
Face rash - I believe occasionally
Nasal sores - I believe occasionally
Dry eyes - Y
Shortness of breath - Y

Have you/can you get a referral to a rheumatologist? There's some brilliant ones who are very clued up on Sjogren's, and some not so. But get your list prepared along with a copy of the BSSA info.

Ask to be referred to Rheumalology, I went privately in the end. Often there’s more than one immune problem and your symptoms sound like you could have Sjogrens. I was diagnosed with it after many years along with lupus, coeliac disease and an underactive thyroid after being told by the doctor it was psychosomatic! Hope you can get some answers.

Psoriatic arthritis?

They're wrong about bloods. You can have an autoimmune and it may not show. I assume you've had vitamins checked.

You need to see a rheumatologist. Is the face rash butterfly shaped?

A keen young GP suggested lupus to me years ago when I actually had rosacea BUT I also had MS just starting to get active and sadly it wasn't picked up for many years. So definitely push for tests.

@Moocrewmummy This came up today. Thought I'd share.

Thank you to everyone took the time to read and replied, your advice was really appreciated!! After a long gp consultation by an gp who took on my concerns and the whole works with bloods done I’ve got a referral! Fingers crossed I get some answers soon!! 🤞🏻 @CheesyRaver @CoffeeBeansGalore @Jabtastic @Maitri108 @NewtonsCradle @Pixiedust1234 @Stephjane @YourSpleenIsDamp

@Moocrewmummy How are you?

@CoffeeBeansGalore I’m feeling a bit better in myself & getting back to my mummy duties for my girls. My symptoms are slowly easing from this current ‘flare up’. I’m waiting for an appointment from rheumatology, which I’m not expecting anytime soon but I know it’s in the pipe line. I’ve had a lot of new blood tests done so just waiting for them to come back. Just the fact my symptoms are being explored is making me feel more at ease. Hopefully I may get some answers at some point. Thank you for asking! It’s really appreciated!

@Moocrewmummy how are you feeling now? any results on your antibody tests? I had my autoimmune blood tests a similar time to you and have very similar symptoms (actually all the same for 5-20 years including nail psoriasis). I tested positive for smooth muscle antibody at that blood test in april.

After ignoring the symptoms for over half my life, its moved very quickly now. Was referred to a hepatologist after the april blood test and have a ct scan tomorrow. Hepatologist thinks autoimmune hepatitis is a "red herring", warned me its almost certainly autoimmune disease but diagnosis might not happen. I've recently started getting very high temperatures and so I guess I'll need some sort of treatment for that and pain in my thumbs, even if I don't get a diagnosis. I hope your path is clearer than mine. Very surprised I didn't test positive for lupus (as was doctor, looking at malar rash).

Hi @Chaaachaaaa! I am currently feeling back to normal apart from a bit of mild lingering joint pain in my hands. So for now I feel more like myself until my next flare up of symptoms. Hopefully it’s a while before my next flare as I finish my last week of maternity next week so have to be functioning for that. My results of my connective tissue antibody test came through and counterintuitively I’m disappointed because it’s come back normal. Sounds silly to be unhappy it’s normal I know but I’ve felt so miserable on and off with all the symptoms for years and just want answers that don’t make me question if I’m losing the plot 😣.

I’m glad things are moving quickly for you now and hopefully you can solve the riddle of what’s been causing your symptoms which hopefully leads to treatment! Is it a relief to be getting somewhere, especially after the 20 years it’s been affecting you?

It’s frustrating when you have a list of symptoms and noting to say that’s why. The world of autoimmune diseases is so complex that finding answers or even someone to take your symptoms on is a hassle! Gps have said a Malar rash is usually a huge characteristic of lupus so if you’ve had that it’s odd that you came back negative for lupus. If it’s anything like my malar rash it’s hard to miss with its distinctive shape! I did the typical don’t Google your symptoms and have read that lupus is extremely hard to diagnose and that it doesn’t always show up in bloods. Which doesn’t help us get answers when they say your negative for lupus despite all our symptoms, case closed which I seem to have come against for the last 12 years.

@Moocrewmummy Hi, glad to hear you are feeling a bit better. Being sero negative (not showing in bloods) makes things a bit harder for diagnosis but do not be fobbed off.
I would suggest keeping a symptom diary & photograph any rashes, unusual skin lumps, bruises, swelling etc with dates to add to the diary. It will hopefully make a difference when you eventually see the rheumatologist. You may have nothing visible for your appointment
Also keep a copy for yourself & send one to your GP to put on your records.

Auto immune diseases don't always present as textbook symptoms. They can affect people in different ways (go on, ask me how I know 🤣) and flummox some of the Drs. I was lucky and had consultants who were determined to help me. My GP at the time was also amazing.

Good luck with your return to work 💐