View Full Version : New and feeling helpless

07-14-2007, 01:40 PM
I new to the site and looking forward to meeting with others who feel the same. I sometimes feel so great that I believe that the lupus is gone, then the swollen joints begin to hurt, the fatigue kicks in. It like riding a roller coaster, never knowing when it will attack. I hate it the last three years have been a nightmare. So many doctors , pills and no cure, today is not a great day does anyone out there feel the same.

07-14-2007, 08:28 PM
I can completely relate to the way you feel. I think it's pretty common that when we're feeling good we tend to over do and then pay for it the next day. Unless you're living it, nobody understands (me included) how the way you feel literally changes from one moment to the next. I have the most energy in the morning and as if I had a built-in clock, and almost exactly 1:00 - 1:30 every day, my eyes just start closing!

It's frustrating since I really have to 'listen' to my inner clock and take a 1/2 hour nap in order to get through the rest of the day. I compare it to a kid being forced to take a nap when they really don't want to!

I used to get the swollen, painful joints, but luckily that stopped once I started the Plaquinil. I consider myself lucky since I've read where it doesn't do anything for some. Sure hope you have a better day tomorrow. It's hard not getting down occassionally - hang in there!


07-15-2007, 05:11 AM
Hi Idelrey!

Welcome to the Forum! :D I'm really glad that you found us! :D

Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!

Keep well and feel better soon! :)

07-15-2007, 05:24 AM
Hi Idelray;

I understand the frustration - I'm sure all of us do! While my SLE has been mild compared to so many, I still have spells where it is all I can do to crawl out of bed in the morning and make it through a day at work. Pain pills, naps, reorganizing my day so I don'thave to face too many people, all those I do and still barely walk to the car at the end of the day.

Hugs dear, one thing I've learned - this too shall pass! There will be other days where the flowers will bloom sweetly and there will be energy enough to walk among them, not just sit by the garden.

07-17-2007, 07:50 AM
Hi Idlerey,

Sorry to hear and feel of your frustrations. "This too Shall Pass!" is very appropo when dealing with this condition. I crossed the threshold to SLE from DLE in January and it has been a life changing experience.

Sometimes the rebound effect from the pain pills can screw things up and that's why I quit those buggers. I replaced those meds with plenty of fish oil and things have eased up a bit. I have also been taking plaquenil everyday and a chemo med once per week. The side effects of the chemo mimic the lupus symptoms (except for the nauseous feeling).

I have an appointment right now, and I just wanted you to know that you are in the right site. Take good care my friend, you aren't alone. Visualize the remmission every time you feel anxious. Helps, tons.


07-18-2007, 08:12 PM
welcome! and sorry that you were'nt having a good day. we all feel this way at some time or other. but your in a great place here. we'll do our best to take care of you!

be well and hang in there :wink:

07-18-2007, 09:50 PM

Indeed Lupus is a bumpy ride. Hang on and find ways to strap yourself in. Times I have been hanging by a cable

What I mean by strapping yourself in, is be mindful. I gage my energy to the tasks at hand. Though not always mindful I do exhaust myself and find myself depleted for a day or two. Resulting in the roller coaster ride...and it isn't a yipee..woohoo ride as you well know. We just have to ensure we balance things out. Rest inbetween.

Eat properly. Limit sugar, dairy, red meats. I have stopped them completely. I follow an anti-inflammatory diet.

Limit stress...which sometimes we have no control over but try.

Stretch, exercise some each day. Keep a regime. Keep it light. Walk, not run. Stretch...oga, pilates...light dumbells. 3lb - 8lbs.

I try to follow my own advice but times I fail...but when I do follow it the roller coaster is a pretty smooth ride.

Lately I haven't followed my advice, food is okay..but the stress and over doing it. I admit I have abused myself in that category. Today I can attest to it. Found myself depleted of everything, because I didn't plan properly and my husband forgot to do things in the yard before our contractors arrived. Inground pool being installed. For not paying attention, the ride will be rough tomorrow for me I suspect, when the Ultracet wears off by morning. I am feeling Lupus where the pain pills don't reach. Eyes, stomach.

So, in some sense we do have control of the ride. I hope you have harnessed yours today and are feeling better. Hope your nightmare days are turning into happier days.

I live in South Carolina too. It has been a hot one hasn't it...

Be well,