View Full Version : Some questions for you guys

08-31-2006, 03:12 PM
I don't post often here because I'm just newly diagnosed and don't know much that could help others but I come on daily and read everything. This forum is very helpful and I thank you all for sharing.

I have a few questions that I hope someone here can answer...
I had a terrible time in May and into June when I was finally diagnosed and have spent the whole summer recouperating anf trying to get some sort of normal life back. I've been doing well and feel good in the mornings then absolutely must nap about 2 PM and from then on I don't feel very good for the rest of the day. I was encouraged tho to get the mornings back to somewhat normal and figured it'd just take time to get the whole day.

This past week tho has been bad ...I ache all over, even in the mornings and I have a dull headache all day and night. Joints that didn't hurt before do now; a couple are so bad they're restricting what I can do. I'm not rested in the morning and just feel blah. Is this typical? Is it a start of another flare? Does it mean the meds are not working now? Is it worth contacting my rheumy over? I hate to be a bother and I certainly don't want to look like some sort of hypochondriac or attention seeking crazy but I just don't know enough about this disease to make any kind of judgement calls on this.

Any suggestions or advice?? Oh and now my hair is falling out too ~sigh~

08-31-2006, 03:43 PM
I'm also a newbie. :) I was just diagnosed with SLE March of this year. I have my good days and my bad days. I take advantage of my good days because they don't come very often. I actually get to do my errands, clean the house, hang out with a friend, or even go shopping. And even after an eventful day, I feel ok. But on my bad days, all I want to do is hibernate and hide from the world. During these times, I have a hard time getting out of bed. I also feel like 'blah' and out of it. :( During the weekends, when I'm off from work, I sometimes stay in bed all day. I take naps during the day, and still feel exhausted. My joints ache at times, I sometimes have a headache that lasts all day. I just feel so miserable on the bad days. Especially when I'm out in the sun-forget it, I'm down for the count feeling soooo tired. :( I even get irritable. :x Lupus is unpredictable. We can feel good one day and crappy the next. We just have to take one day at a time... So, you're not alone. I understand exactly how you feel. :wink: And my hair's been falling out since March. :cry: I hate it! My hair is very thin, but, I see that it is slowly growing back (lots of little hairs growing everywhere). I can't wait til my hair becomes fuller.

08-31-2006, 04:35 PM
Hi MrsMurdena,

You are NEVER bothering us, and believe me; we all feel like hypochondriacs from time to time.....because the symptoms can be so varied and come all at once or a little at a time. So know that you can always come here, and NO ONE will ever think you're looking for attention.

I can only share with you my personal routines; everyone is different. I will echo what my two wonderful friends (Buddha and Beluga) have had to say. I also think that each person's home invironment is unique. Stress really is a trigger, no joke. So I recommend that you find and keep your peace whenever and wherever you can!!

Because I have brain, kidney, heart and skin involvement, I have had to learn by trial and error what kind of foods trigger my symptoms. I no longer have caffeine - ever! I also follow a low protein diet and that seems to help quite a bit. For me, acidic foods are out of my diet. There's something in the acidity that triggers flares (for me).

I do eat a lot of green vegetables, lots and lots of yogurt, milk, etc. Which is like being in heaven for me (you could stick me under a cow's udder and I'd be happy all day....on second thought, don't try to picture that)..smile!! My doctor has me on 3,000 mg of pharmaceutical grade fish oil.

I don't know what your living circumstances are; but I find it really helpful to play soft soothing music towards the end of the day....and yes, I am here to proudly proclaim " I am the bubble bath queen"...it is the single most guilty pleasure I indulge in, and I highly recommend it. Soft music, a little bubbles, and for good measure I pour myself a glass of bubbly...apple juice that is; open the window and feel a nice cool breeze blowing....and you can dream about anything, if only for a few minutes.

You will find things that work best for you; but most importantly take good care of yourself. It is so very important.

I hope you find some of this helps.

Much love,

08-31-2006, 05:41 PM
We all have something to learn... And just like someone who's 40 can learn from someone who is 20 someone who has had Lupus for YEARS can learn from someone who has had it for weeks... Never hesitate to post...

09-02-2006, 06:36 AM
I finally just called my doc ...actually my husband made me :-) ...and the doc told me that I'm flaring and upped my prednisone. Already this AM I'm feeling better. I'm just new to this and not sure what's a flare and what's just normal aches and pains. Thanks for responding to me you guys :-)

09-02-2006, 10:49 AM
:) So glad you're feeling better... Have a good day. :wink:

09-02-2006, 06:46 PM
It's amazing what those "drugs" can do for you. So happy to hear you've found some relief. As much as we hate taking prednisone, it certainly can and is a life saver (literally) at times.

Take Care.

Much love,

09-05-2006, 07:35 AM
Glad you are feeling better :lol: