Confused???

[Mbgood23]

I have not been diagnosed with sle lupus but with dermatology lupus, but I have joint pain, fatigued, feel like I can't get my thoughts and words put together, dizzy and off balance. I'm told my ANA continues to come back normal. What are all the normal or expected symptoms of skin lupus???? Why do I feel so horrible???

[Paul_Howard Partner LUPUS UK]

Hi Mbgood23 ,

I'm sorry to hear that you have been experiencing all of these symptoms. Have you been started on any treatment for your skin lupus?

Some types of lupus, such as discoid lupus, generally only affect the skin but people with these conditions can sometimes go on to develop further symptoms of systemic lupus erythematosus (SLE). There is also he possibility of any overlapping condition that could cause these other symptoms.

For more information about skin involvement in lupus you can read and download our booklet here - lupusuk.org.uk/wp-content/u...

Have you been seen by a rheumatologist for your other symptoms? If not, it may be worth asking for a referral for some further investigations. A few consultants recognise cases of 'seronegative lupus' where the blood test results are negative. This can alternatively be a sign of an undifferentiated connective tissue disease (UCTD) or 'probable lupus'.

[Mbgood23 in reply to Paul_Howard]

I'll get sharp pains in my knees and when walking down stairs I feel like their going to buckle on me, and sometimes I feel like I've been beaten up and my body hurts everywhere.

[maggielee]

Hi sorry to hear your feeling poorly, I have subacute cutaneous lupus, a type of skin lupus and I have experienced and do when i flare have all of those symptoms you described and now for for three days I have been really off, aches and exhausted. If I get too much UV then it really hits me so I cover up all the time wear 50 factor, gloves, hats etc. I did have at an early stage have a really bad rash which helped with getting a diagnosis, the docs could see the problem, i had been driving in my car all day and the sun hit my right side and then it kept spreading for months even when I covered up. So there is plenty to cope with and hopefully it will not effect your major organ's. There is such variation in lupus, have you been prescribed Hydroxychloroquine? To help with symptoms...not sure what I did this week to make me feel poorly, but at least I can finish a sentence, that's a bonus for me. ML

[Mbgood23 in reply to maggielee]

Yes I'm currently taking hydroxy chloroquine, I stay tired and fatigued and then I'll have a day or two of feeling on top of the world. My skin will even be sore to touch or rub and I will feel like I got beat up.

[maggielee]

Hi finally had to admit I needed rest today and came home from work shortly after i got there.

I am still trying to learn about lupus and what I need to do or not do to keep going forward. Not sure how long u have been on the hydroxy and if it has fully kicked in? Usually I can make it to the weekend and rest. So sometimes I just have to listen to my body and corny as it sounds you may need to rest. I am still wondering when this doesn't work going back to the doctors to figure if there is something else that needs to be done. Example I felt short tempered, not bad, just not me and monitored my blood pressure (borrowed a good one from gp clinic) and it was super high, now some meds have helped to adjust it ....not ideal as breathing, relaxation would be better but can't risk a stroke... Maybe more help, ml

[Mbgood23 in reply to maggielee]

I have been the med for21/2 yrs and suffer fatigue all the time and the fact that I am never able to get good sleep doesn't help. Either can't fall asleep or I'm up and down all night.