I feel the same way your partner does when I go out in the sun. Some days are better than others and I can get away with more sun exposure. But generally I try to stay out of it. I am sick most of the time because I have to work and the lights at the reception at work are a bunch of big fluro lights. Four to light the area that one would be able to light : (
Anyway, the best thing to do is stay inside on very sunny days : ( I do miss the sun.
I dont think my partner finds it hard watching me suffer because I never make it obvious I am suffering and he is a man after all lol He probably wouldnt notice and if he did it would only be because I was so ill that I was unable to do much and it began to impact on his life.
Thanks everyone for clearing this up for us it is so hard to know whether the symptoms he is displaying are from the sun the drugs the lupus itself and the doctor that is treating him is a kidney specialist not a Rheumy so she knows a lot about kidney failure and very little about Lupus I probably know more than she does about Lupus through my own researching.It is so hard to sit here and watch the man you love suffer in this way and be totally helpless to ease that suffering I dont know how all the carers out there do it.But what else can I do except research and learn as much as I can about Lupus and hopefully help him to cope and WHL has been an absolute godsend so thankyou all for your prompt replys to my questions all my love Mary.x
he is a very licky man................
to have you.
Sorry here i go again Alan is now having what I can only describe as (shaky legs) when he is sitting down he describes his legs as feeling (restless) but when he stands his legs shake quite violently. Fortunately we were up at hospital today and told the nurse about this and she said it may be because his potassium was high (6.1) they normally like it to be between 3.5 - 5 but im not convinced and neither is he because his potassium has been higher than this before and he didnt have the shaky legs has anyone else experienced this and if so do you have a reason/answer as to why it happens??? Thanks Love Mary
I'm welcoming you properly now to WHL and we're all a terrific bunch of suffers and you'll get the answers you need when asking and vent away as it's better to get it out then holding it in.
How Alan was feeling about the sun was most likely his meds and sun exposure can be terrible and cause a flare, so when he's out of hospital he needs to be careful what heat he's sitting in and he's best keeping to the shade.
I've been answering about his seizures besides other member's but i've just seen that he had shaky legs, when my fits started to happen my legs would shake, then my arms and how i came to go into hospital to be monitored i was at the top of the stairs my legs started trembling and i went from top to bottom of the stairs they rushed me in hospital and monitored me for a week and nothing but two days before i was due to be discharged i collasped in the toilet fitting and the door was kicked open and that's how my seizures was confirmed and since then i've had them ever since and i'm on a right high cocktail of drugs.
Luv Terri xxxx
Hi there - I know this is a little late after your question, but is it possible he could have Restless Leg Syndrome? It can be triggered or caused by stress or even some medications. I'm not sure if that would effect his legs while standing though. Personally, I also jiggle my legs a lot, especially when I'm sick. I'm not sure what you mean by his legs being shaky as he stands, but is it possible that they're just shaking from him using them so much? I know that sounds odd but jiggling or twitching your legs can be pretty tiring, especially if you have problems with muscle pain/weakness and fatigue, like many with Lupus do.
Woops, just went back and reread, and you never said he was moving them. Eep!
Well anyway, a belated welcome to you, and sorry if I misunderstood what you were saying!