Hello, newbie here I am wondering if I have lupus - I display a lot of the symptoms. History: had an extreme case of glandular fever aged 18 and never really recovered. I was given steroids during the illness which helped me to "get over" the GF, but after I came off the steroids I crashed badly, extreme fatigue etc. After years of being fobbed off my GP said I had ME, but at this time (over 20 years ago) there was little support for ME and I was pretty much left to cope on my own. After having my children, my symptoms seemed to die down considerably. If I over do it (for example going out for the whole day would be "over doing" it) I will have to rest up the next day, but I was bouncing back a lot quicker than I ever did before the children. Recovery time is creeping back up again I have noticed in recent months.
So symptoms:
I have a permanent rash over my cheeks - this changes in severity from being fairly mild to looking like a severe case of sunburn from a distance. Up close the rash consists of flat red spots.
I get a rash over my chest, face and neck in clusters after sun exposure - looks like whiteheads surrounded by red, but this can sometimes happen just because I have got hot
I get joint pain especially in the back of my neck, knees, wrists
I get rashes over my fingers that itch
I get extremely fatigued after relatively little effort
Sometimes I have so much difficulty thinking of words I am incapable of holding a conversation. I often use completely the wrong word in conversation so I don't make much sense! Recently I have noticed I can take 4 or 5 attempts to say the right word. It is frustrating and affects my confidence - I don't approach new people much.
I have severe anxiety
I get numbness in my fingers and hands
I get night sweats and often wake in the night feeling nauseous because I am so hot.
I get muscle pain and weakness, especially in arms and legs
I have extremely low blood pressure
I have IBS, often have stomach pain (in stomach not bowels) and nausea after eating
I get lots of mouth ulcers
I cannot take the pill - my GP told me I was high risk because both the combined and mini pill gave me migraine auras 5 days out of 7. I get "silent" migraines (i.e. no head pain) now although suffered with severe headache as well for many years. They wash me out for a couple of days.
My glands will swell up at the slightest little thing - usually in my neck but often down my back as well which is the most painful.
I've been coping for 25 years now and I will rarely visit the GP because I have had such a bad experience over the years. My family GP (now thank goodness retired) told my parents I was hysterical, depressed and it was all in my head and it is extremely difficult to get GPs to look at all the symptoms as one, not individual ailments. My husband is pushing me to try the GP again, so really looking for some support and opinions of my symptoms plus ways to approach the GP.
Thanks for reading if you managed to get to the end of this!