Lupus is known as ‘the disease with a 1000 faces’ It can take years of plodding along to the doctor with various symptoms before you get answers! I had joint pain on and off since I was 17yrs I am now 50yrs and I have a tentative diagnosis! My immunologist and rheumatologist are 98% certain its Lupus and they are treating me for that but my bloods aren’t showing too much! My doctor told me it could be years before your bloods catch up but we won’t make you wait! I am grateful! So grateful!
I’m not alone in this I have read or spoken to so many people who struggle for years without a diagnosis and then many who get diagnosed straight off the bat!
So what are the early signs of Lupus? There are plenty! From sore joints to malar rash, or extreme fatigue, mouth ulcers, and hair loss! Let’s take a look at some of the more common symptoms. But remember everyone’s story is different and you might have symptoms to add or only identify with some!
- Hair loss
- Swollen/sore joints
- Mouth Ulcers
- Dry mouth/eyes
- Malar Rash
So let’s unpick these delights, shall we?
Fatigue is a common symptom for most Lupies! It is a tiredness that isn’t really relieved by sleep… that’s if you can even sleep! It can be overwhelming and just strip your day of joy! I used to say it feels like I am walking through treacle!
I find myself having to plan… if I am doing something in the morning I won’t be able to do anything in the afternoon/evening and if I am going out in the evening then I will need to rest the day before and the day after!
It’s hard to combat but with planning and self-care it is possible to manage it to some extent. I read a book called Despite Lupus it gives some great ideas for creating routine and strategies to get the most out of your day!
Some people run a 100+ fever for no obvious reason. So they don’t seem to have an infection but they are running a temperature! I guess it makes sense their immune system is in overdrive … this isn’t one of my symptoms.
So some people lose a lot of hair and some people their hair thins. I have thick hair naturally but it thins when I am in a flare. My scalp will start itching like mad and then I will start losing lots of hair when I wash or brush it. My hair will hang flat and limp instead of it’s usual wavy and bouncy! Its definitely Lupus hair! I have, in fact, just had mine cut really short because it was driving me nuts! Well, it was causing me to feel quite depressed and down! I love my short cut and its super easy … its really short shaved sides and spikey on top!! My scalp still itches like mad and of course, it’s still thinning but it looks great and I am happier with it.
Many people get skin rashes with Lupus sometimes there is an obvious cause i.e sun exposure and sometimes it’s random! I would get a rash if I went out into daylight, it didn’t need to be sunny and it would be only where my skin was exposed. I also get a rash on my face and I get tiny blood spots under the skin which pop up in clusters then disappear and pop up elsewhere!
Lupus can cause swollen and sore joints. I can have pain and no swelling and sometimes pain and swelling. It usually affects both sides of the body at once. For me its a grinding, ache and can also feel very bruised, I have seen other Lupies describe it has a hot burning pain.
My joints can also get stiff in the mornings and if I have sat in one position for too long.
Dry mouth and eyes.
Many of us struggle with dry mouth and eyes. Sometimes there is a secondary diagnosis of Sjogren’s disease.
I get dry eyes and my eyes will burn it’s really uncomfortable and I also get a dry mouth but I only get these symptoms occasionally. For some people, it can be very painful and constant and cause real problems.
Ugh this is horrible! Since I started on meds I don’t get any visible signs of sun allergy but it knocks me out! I literally feel the energy draining out of me. I have ended up in the ER with symptoms of heatstroke, vomiting, sweating but low temperature, migraine … it was awful!
I got myself a really pretty sun umbrella to keep the sun off me when I need to go out for the school run or something. Someone will always say ‘hey! love it’s not raining you know!’ But I love it!
I am not only allergic to the sun but also fluorescent lighting which makes me feel nauseous and generally unwell! I use blue light filter glasses for when I am under fluorescent lights and when I am on the computer.
This rash goes across the nose and cheeks and is shaped like a butterfly. According to my doctor, more people with lupus don’t get this rash than do. I don’t get this rash but I do get a burning sensation where that rash would be if I have been out in the sun or if I am unwell.
So there are just a few of the more common symptoms of Lupus, remember everyone is different and even your own symptoms can change at times! Keep trying different things to help manage your symptoms and remember to practice that all-important self-care.