[cattibby]

I was diagnosed with lupous a month ago and am not able to take any meds the specialist gave me as my blood pressure is very high. Tomorrow im having a 24hr bp monitor, after the results are in they will decide when/what/if i can take the meds prescribed.

I have a question about flare up.......as im new to this horrid illness i wonder whether it is normal to have one day without too much pain and the following with more. Yesterday my pain wasn't too bad in the morning but got worse as the day went on. I always feel under the weather and generally tired, achey and ill.

I am working (or supposed to be) but haven't been for the last few days as i feel sooooo rough. My boss seems to be confused that i can manage one day and not the next etc......to be honest im confused to. I haven't managed a full 5 days for ages. I take at least one day sick or more a week due to not sleeping and feeling grotty.

He keeps telling me to go to my doc to get it sorted out but as i said before they are sorting it out by starting with the blood pressure monitor.

Sorry to ramble, my question is does the above sound 'normal' in lupus in general or am i having a flare up?

Jane
x

 

[Joandublin]

Hi Jane

Its hard to say what is normal and what constitutes a worsening of disease activity but the fact that you are on no meds will definitely be contributing to how you are feeling right now.

Having said that I have been on meds now for over three years and I regularly get a day when I find it hard to function because of either the pain, fatigue or general feeling of being unwell. This is often followed by a day when I feel quite normal again and can function fairly well!

Thats been my experience of this disease in any event. The hardest thing I have had to come to terms with is the short lived feeling of being well. So much so that I have had to change my hours to half time instead of full time. I just couldnt manage one single week about crashing.

It takes a while to get to know how your Lupus is affecting you but you have to learn to listen to your body and watch out for patterns. It may well be that you will get started on meds and find yourself feeling quite good down the road. It may also be that you find you have to look at adjusting your lifestyle and unfortunately this can include working hours.

Hope this helps
Joan:rose:

 

[lin]

i dont understand why you cant take any meds beacuse of blood presure , i have high blood pressure and take other meds ..

it is possible to be one day worse and the other not, i find im up and down, even with meds.

i would be asking my gp to help now Lin xx

 

[Jirel]

I agree, I'm on high blood pressure meds and yet still take prednisone. If the pred amount goes up and my bp raises, the GP raises my bp meds.

When I was working, I found it worked best if I worked every Weds from home. Five days a week in a row of working tired me out too much and would give me bad days. Having one day in the middle of the week to sleep 30 mins later and be at home rather than at work, rested me up enough to make the rest of the week. Especially since you have no meds, you may be having the same reaction. Is there anyway you can arrange to be able to take 30 mins in the afternoon and rest in your car or somewhere at work? Then maybe you can get the extra rest you need. Also, I have more pain when the atmosphere pressure changes. If you are having stormy weather, that could be causing some of the problems.

 

[cattibby]

hi

The meds they have given me will raise my blood pressure so im told and mine is very high. I am having a 24hr blood pressure test tomorrow so the doc can decide whether i need BP tablets. If so he said once on them i can start my meds.

Just hope they help with the pains, that is what is getting to me the most at the moment

I only work part time 51/2 hours a day but even that is too much at the moment.