View Full Version : Is this what it's like?

07-06-2011, 08:50 AM
Feel pretty good for part of the day and then craptastic the other part? On Monday (it was 4th of July in the states - holiday), I felt achy, burning in the joints etc. We went later to a BBQ and to watch fireworks and I felt okay. Yesterday I started off okay and then by end of work day I was starting to feel the joint pain/burn again. Today I could barely get up due to ankle pain. Now ankle pain is okay and it's the knees.

I guess I am afraid of what this really is. Does any of this sound familiar?

07-06-2011, 09:10 AM
Yes dear it does for me. I seem to never get to a point lately where I have several full good days in a row. I used to. Maybe I will again. I wish I could give you better news but right now I am in a bit of a weakened state.

Last fall I was hiking rugged mountain trails. Over 7 miles a day. Yesterday, my boyfriend had to watch as I stumbled going around the block. Hang in there, you just might get stable and climb mountains who knows.

07-06-2011, 09:21 AM
Thanks Loved. I'm sorry you're in a weakened state. I should be grateful that whatever this is seems pretty mild in comparison to what I read on these boards. I can still go to work, I can still go out with my husband, I can still walk for exercise (albeit slower than before).

I guess I'm just a little surprised to have flucuations within the day like this. I thought if you're down in a flare, then you're down for days/weeks/months not just hours. Sometimes I feel like I'm imagining all this or that it's not that bad so just suck it up. Like I shouldn't be wasting my time, a rheumy's time and my money on this. Then I sit in bed and feel the burn in my joints and know that it's something; just what I don't know.

07-06-2011, 09:30 AM
Hi manderson,

Lupus is different for everyone. Some of the people that have milder forms of the disease do like you do. It could also be one of the other 63 AI diseases. This disease is different for everyone. You know what you feel. You know how you hurt. You know how bad the fatigue is. Just keep doing what you are doing, stay out of the sun and away from florescent lighting and hopefully you and your rhumey can get things under control so together ya'll can get this disease to go away and you will have totally good days

07-06-2011, 10:28 AM
Yup, sounds familiar.
I've always said that my major joints took turns hurting.
The Plaquenil has helped my joints a lot, but these AI diseases have all kinds of other pains for me.

07-06-2011, 09:34 PM
Sorry kiddo, but for a lot of us, yes, that's our lives on a regular basis. Changes from one minute to the next. We live moment by moment. We celebrate the small victories like making it through grocery shopping without needing a nap (well I do anyway). We see as luxuries what non lupies see as normal like being able to take Kya SuperPuppy for a walk or walking in trees! (in that case we buy the tshirt too)

07-07-2011, 06:34 AM
Okay good to know. These daily changes were making me question whether I actually felt something or was overthinking.

07-07-2011, 08:16 AM
Hello Marie,

I have the joints swell and burn off that's terrible especially with my hands and knee joints..i find going outside early of a morning before any sun hits me the breeze cools them down for me abit which helps.
I have my ankles crack just like as if i've either sprained them or broken one and it takes a while for them to get right...the trouble with this Disease it hits a large majority of us with the same symptoms but it's what helps to relieve it.

If your like me it drives you soft half the time.

Hugs Terry xxx

07-07-2011, 09:07 AM
Terry - the elbows and the knees were terrible last night; and this was after a pretty good day. Bleh!

07-07-2011, 09:38 AM
Yep! That sounds like me :) I'm still undiagnosed, but while sometimes I do have good days and bad days, most of the time I'll start out okay or bad, and end up on the complete opposite of the spectrum by the end of the day.
I know you said you were still undiagnosed as well, and that can definitely help to smash your confidence. Believe me, for months before my doctor told me I had some sort of AI disease, I was in the same spot. Thinking maybe I should just stop seeing the doctors I was seeing and wasting my and their time. Then I'd have a good day, and think to myself that it really wasn't that bad and I was just being a big baby.
Then two hours later i'd be curled up on the couch not wanting to move because it hurt so badly and THEN I'd remember.

The important thing is to have faith in yourself. Even when you're having a good day and start to wonder if you should really keep going on the path - remember that you got on this path for a reason, and you're the one who chose to do it, so obviously it must be right ( ;) )

Having it change in a few hours like it does is both a blessing and a curse. For one, if you're really bad, then you might have a few hours in the day of relief. But for another, it's hard to make concrete plans because you might wake up feeling great, and then not be able to go by the time the event rolls around.

07-07-2011, 09:50 AM
Elo - sounds like we're very much alike. Guess there's lots to learn eh? It's really queer the way it ebbs and flows and then jumps from joint to joint. We're going to a wedding tomorrow evening after working all day - I'll muddle through but I hope that it'll be a good day until at least the reception is over.

07-07-2011, 05:03 PM
Hi Manderson,
I've just gotta say that I LOVE your kitties! I used to have a Chocolate-point Siamese like yours, named Bexar (pronounced Bear). He passed away at the age of 18. He loved my husband, and would play fetch with him, but with no one else.
I now have a Flame-point Siamese named Casper and my hubby has a Maine Coon named Dax who si polydactyl - he has seven toes on one paw and six on the other three.
They are both big, spoiled babies.

07-07-2011, 06:11 PM
Manderson - I know what you mean about wondering if you were overthinking things. I was diagnosed in Feb so things are still relatively :new: for me. To be honest, like so many of us, I have been having symptoms for years...but in the days, weeks, months after a name was put to this, I think I was more aware in some ways of the changes in my body. Used to be, I would think I feel tired (crappy, heachacy, nauseous, whatever) and I would push through it and then usually feel yucky for longer but still "function". Now I am learning to recognize my body's signals and go and take that nap, or rest, or whatever. Unfortunately, I am still learning to do this without feeling guilt...but I really do believe that feeling awful is my body's way of telling me it's had enough...That and if I don't listen now, flares happen and they just plain SUCK more than this confusing on again, off again junk. Yes, absolutely lupus affects every one of us differently...and I still second guess myself sometimes and wonder if I am really feeling yucky or if this is just something "normal". I am also trying to figure out how much my meds can help as well as if I need to readjust my expectations of myself...Maybe I am always going to feel somewhat yucky...I don't know. But I am looking forward to finding out that answer with people like you who are learning about themselves and this disease too.

07-07-2011, 06:38 PM
Marla - Bo is not a siamese....looks like one and "talks" like one, but he's a Ragdoll. He's quite a character too. When he's looking for me, he wanders through the house meowing "mom?" And when he's taken to task for doing something naughty, he meows "noooooooo."

Bunny - I tend to push through as well. I also ignore to the best of my ability. Now I think I am hyper vigilant about any little sensation and then I analyze it to death.