Lupus

I am tired of being tired. Sometimes, I go to the doctor complaining of pain and fatigue, and my tests come back relatively normal (for me anyway). I want off my meds. Although they seem to keep me from getting as bad as I could get, they also keep me from being as good as I could be! I have tried to go off my meds a few times, and when I did, the remission times were great. So much energy and stamina, so little pain. It felt great to be normal! But, the flare up after is always worse than when I just stay on my meds. Part of me would rather have the worse flare ups just to get the normal remissions! When on my meds, it just flat lines everything. I am not well, I am not sick. I am just existing.

Does anyone else feel this way? Can't we find something less toxic to treat Lupus with?!!?

Posted Oct 02 2009, 12:12 PM by Akeeta24

Comments

Contact

kim5010 wrote re: Lupus

on 10-02-2009 11:34 AM

I know exactly what you mean and how you feel!!! I feel the same way ..... existing.

Contact

Uniqueonne wrote re: Lupus

on 10-02-2009 3:59 PM

Yes I think we all feel this way at one time or another.

Contact

Well Liver wrote re: Lupus

on 10-03-2009 5:16 PM

Yep! Me too!

If I stop, it becomes almost impossible to move at all.

The side effects are quite unpleasant but without them life is not tolerable at all.

I have never been in remission, according to the Docs. I may have forgotten how it feels. I think, although diagnosed late, I've had it from my childhood, so perhaps I never was "normal"

Take your meds and Live to fight another day!

Contact

Akeeta24 wrote re: Lupus

on 10-04-2009 9:32 AM

Hey - Thanks everyone, for letting me vent. It is nice to have the opportunity to say these things to people who would really understand. I have a great husband and support structure, but people who do not need to take these meds cannot really understand how frustrating it can be. Even with the dope, life is better than without. Go drugs! Te he.

Love to all :-) Take care

Contact

doodlebug wrote re: Lupus

on 10-14-2009 4:40 PM

Keep on fighting to live another day. The remissions are great cause I've been in them to and when they crash it just sucks. This last bit of crash has lasted 6 yrs full of treatments and chemo and experimental stuff. I finally had to have a stem cell treatment as it was my last chance at staying alive. There are lots of us out there and always someone willing to listen, to laugh with, to cry with, to pray with, or just to be there and I'm one of them. Keep battling if not for you but the ones who love you.

Lupus

Comments

Add a Comment