[shelleylouise]

Hi to everyone,
Im new to all this & would greatly appreciate some advice from others who are in the know,to cut a long story short I was referred to my ruemy in june who diagnosed fibromyalgia which he thinks I have probably had for approx 10 years & suspected lupus which has only started this year,I have developed several of the classic signs such as severe raynauds,can no longer tolerate the sun,strange rashes & pains in my hands & feet & severe fatique,I had the full set of blood tests which all came back as negative but the reumy still thinks I have mild lupus or it is just beginning so is monitering me to see what happens before taking any descision to start treatment for it ( I see him again in january),is it possible to have lupus even though the bloods are negative?
& in the last couple of months some scary things have started to happen to me which I suspect may be lupus flares but Im not sure & would really like your opinions on,I go through these phases over a period of a few days where I feel very weak & wobbly - my limbs feel like jelly & my hands & feet ache like crazy & my raynauds worsens,then I start to feel very anxious & extremely depressed but I dont know why,I have also developed a mild butterfly rash across the tops of my cheeks & across the bridge of my nose which seems to come & go & finally I tend to have either 1 or 2 days of feeling slightly confused & cant seem to think straight or take things in,its hard to describe but when people talk to me I can hear them but my brain does'nt seem to register what they are saying & I just want lay down & be left alone,this passes & then I start to feel better in my head though my body feels very fatiqued & weak for several days after,does this sound like a lupus flare? any advice would be greatly appreciated
thanks x

 

[LolaLola]

Hello Shelley Louise, yes it is quite posibble that you could have Lupus as bloods do not show it straightaway and in a very few cases remain negative for years. The important thing is that you have a Rheumy who seems willing to diagnose you and treat you if necessary.

Lupus has so many symptoms that you may well be experiencing flares, but your flares may well be different to mine or somebody elses.

It would certainly be worth you avoiding the sun and avoiding stress as far as possible as these can both trigger flares. Keep a notebook of your symptoms etc. for your January appointment. Do you work? If so I am sure it is a bit of a nightmare for you at the moment.
Welcome here, and don't worry lots of others will be along to reply to you too.
x Lola

 

[KarolH]

Hi Shelley,

The butterfly rash on the face is classic for Lupus. It is very possible that you may have Lupus that is just not showing up in your blood work yet.

It sounds like your doctor is on top of things and that is half the battle won.

Let us know how you make out moving ahead. You have found a great place to come for knowledge and support.

Sure hope to get to know you better. Come check us out in the chat room sometime.:wink2:

 

[lynnjohnston]

hi shelly,
welcome .... i too am a newbie, just joined yesterday...
glad u mentioned the brain bit, cos i thot i was going bonkers, lol..
mind u thot tht was the 4 kids n a man too :rotfl:..
look forward to getting to know you n chatting more x

 

[shelleylouise]

thanks for making me feel welcome everyone,I know what toyu mean about the bonkers bit Lynn - I was beginning to think that it was just me & I was going a bit mad too but it helps so much to know there are others who experience the same thing - do you get really bad headaches with it too? I get awful migraine type headaches