View Full Version : am i ever gonna get better?

01-05-2008, 02:22 AM
I was diagnosed on Nov. 9 after being sick for about a month and going downhill very quickly the last two weeks of oct.
I have had a few good days recently but they followed a week or more of extreme pain. My left arm hurts so bad and my fingers are numb. legs, knees ankles, shins, ribs....you name it; it hurts. Oh and the nausea
About a week and a half ago i thought maybe I was going into remission....I was wrong.

I am on ibuprofen for inflamation, Lyrica for pain, Cymbalta for depression(it is also supposed to help with pain). Also insulin and glumetza for my diabetes.

I have been watching the clock for the four hour mark to come as i can take ibuprofen every four hours. I know that it is probably affecting my nausea.

I told my HubbyMan to just shoot me and put everyone out of this misery....just get it done.

I hurt so bad and am missing so much of my kids lives.

So can anyone tell me how long before this eases up? How long after diagnoses do things get better? Am I gonna be like this for the rest of my life? It sucks! (sorry...can I say that here?)
Do you have any encouraging words for me?


01-05-2008, 09:51 AM
Noodlemom, I feel for your pain...I really, really do. It's discouraging when you believe it will never end. But lupus is a very fickle disease. It has periods of flare when your symptoms...whatever they may be...kick in. And it will have periods when the symptoms will quiet down. Remission? Well - that's a hard one to define. If you read web sites and talk to doctors, they all have a slightly different opinion on the chances of remission. I think it's safe to say that there are those out there who go into remission for long periods of time, but there doesn't seem to be any rhyme or reason for who goes into remission or when. Sorry....I know that's not what you want to hear. I was diagnosed about 18 months ago (been sick a while, just didn't realize what it was) and I've been in some stage of flare almost constantly since then. Some days are good, some not so good. But, I'm hopeful that I'll go into remission. Just hang in there, Noodlemom. Talk to your doctors and your pain level. Ask about other meds that may help (plaquenil, maybe a course of steroid treatment?) Rest, avoid stress and take good care of yourself as best you can. I hope you find relieve soon. We've all been there - and we're here for you when you need someone to lean on.


01-05-2008, 02:36 PM
Hi Noodlemom--I am really sorry you are in so much pain. I do remember when my MCTD started the arthritic pain was so horrible I cannot walk with my knees straightened. If I straighten my joints it gives me the sharpest most horrible pain, Same with breathing--breathing deep feels like someone has stuck a knife in my chest. So I was walking around hunched over, breathing in shallow, fast breaths--not a great look.

Believe it or not though--it doesn't last forever. It took a LONG time for my drugs to work--so long in fact I was wondering if they were doing anything at all~! After 3 months or so...the symtoms gradually subsided. I still get a "funny" joint now and then (my left knee currently)--but it is much better than when it all started.

Hang in there Noodlemom--this whole autoimmune thing is a pain in the butt--but it will get better~!

01-05-2008, 04:06 PM

Gentle hugs, dear. The others have given you good advice, I can only echo. One think I'll add - talk to your doctor about the pain. There may be other meds that will not interfere with your prescriptions and that will help ease the pain better. For me it was naproxen (Aleve - Rx strength is about a double dose). I took it for several months and then finally was able to taper off. Now I go through phases of taking meds, many times I take something only once in a week.

I hope you feel better soon, sending warm hugs your way.

01-05-2008, 05:38 PM
I have a doc appt on Monday morning. I will be talking with him about pain meds.

The flares-- what exactly are your symptoms? I can feel a bit better, less pain in my arm per say and some moderate pain in knees, shins etc. But then all of a sudden my hips hurt so bad and ribs....blah, blah, blah. It just goes on and on and on. It (the pain)sometimes drives me nearly out of my mind. I spend so much time in bed. The commotion in my house(children and their activities) hurts me.
I could just go on and on but who really wants to hear it all?

Thank you all.


01-06-2008, 02:02 AM
Kasey, we ALL want to hear how you're feeling. That's the deal here - you share whatever you need to; whenever you need to. And we all do the same. Don't ever feel like you need to apologize for sharing how you're doing.

Flares are different for everyone, and not always the same even for the same person. I get a lot of the chest pain like Tintin28 - hard to breath; feels like someone is sitting on my chest. And I get bad pain in my leg; my hips hurt too - feels like I've been sleeping on rocks. Sometimes I get fevers, but not so much anymore (meds help with that.)

I'm glad you're going to talk to your doc about pain meds. There is help for some of these symptoms, Kasey. It won't always feel so bad...really. In the meantime, know that we're all here for you - sending your the warmest hugs we can.