Hi. You're right, everyone is different but I am pretty sure that when we all start with this, we are all equally as frustrated as you are right now. I am now 4 years down the line since my SLE diagnosis and probably 6 years since it all started after my mass got removed. No one will actually say whether my SLE got triggered due to my mass and the treatment / surgery etc before and afterwards, but I have given up asking the question anyway.
I have joint problems in my hands primarily and then neck, back, hips and feet. I also have Raynauds which makes my mobility worse as sometimes the swelling makes everything numb so my balance is worse, and if I trip up my hands are poor at saving me! The Raynauds also means that if I accidentally cut my finger ( or burn it whilst getting something out of the oven) or stub my toes if I bump into something, it takes alot longer to heal. So I have to be very careful and basically I don't use my oven very much at all now, and don't pick at your scabs! The lethargy is worse when I get fed up that I can't do the things I used to do, and fatigue hits me like a train sometimes. I have mouth ulcers which mean I can't enjoy my food like I used to and my hair is falling out. I got a few bad infections in the early stages of this and some bad reactions to medication they gave me to "treat" my symptoms. My memory isn't what it used to be and I lost my job due to all of this.
It is pretty hard to stay up beat about how I am most days, but as much as this sounds very depressing, I can and am dealing with this. I self referred for some CBT, which made a difference not straight away but I use it every day and it does work.
Like I have said to other people on these threads, you need to go through all of the searching, researching, re-researching and then all the tests, consultant appointments, more blood tests, biopsies, discussions etc. getting to know the way round the hospital so you know the quickest way to the toilet and the exits, in the time it takes you, not anyone else. It is all hard work and I wish you the best and I hope that your doctors can get you on the right medication quickly and more efficiently than mine are doing right now. Some SLE patients get sorted really quickly and the impact on their lives is minimal, so I hope you are one of these as you look alot younger than me in your profile picture. SLE is very complex and some patients are skin and joint, others, major organ involvement. My advice is do everything you can to keep it to just the symptoms you have right now. Try to eat healthy so your kidneys and liver aren't put at risk, try to do a little exercise ( I try a 20 min walk a day) so your heart stays in good shape and talk to as many people who can support you, when you get really annoyed with it all. You will find out who your friends are soon enough. This forum is very helpful as it makes you realise you are not alone, and there are some useful tips around. Sorry this is such a long post by the way - have been unwell, so not been on here for a while. Anyways, message is, you are not alone, just take it at your own pace, look after yourself, put yourself first - you are number 1, if you don't help yourself, how can you expect anyone else to. Good luck