PDA

View Full Version : Awake and have to be up in less than 6 hours



nicolehinkel
08-03-2011, 10:37 PM
Lovely, I have to be up in less than 6 hours and of course can't sleep and have to work 8 hours tomorrow. It's like since I was officially diagnosed which of course is during a flare up, probably my worst ever because it consumes so much of me the flare up is worse. I just can't take it. I don't go to the specialist for 25 more days and all my gp will give me is 500mg naproxen. How am I suppose to keep working full time until the doctors in so much pain. It is affecting every area of my life. It is affecting my relationship with my husband because he is to afraid to be close to me because I hurt so bad. I can't do anything because I don't have the energy. I'm only 35 years old, I liked it better when it was thought my problems were in my head rather than I will have to deal with this for the rest of my life. How am I suppose to do that?

steve.b
08-03-2011, 11:30 PM
i am sorry you are in this pain.

it does get easier.

when you have the correct balance of meds, you body does function smoother.
the new you probably will not do what the old you could do, but it will be better than life in a flare.

a flare... by description... is a time when the lupus is out of control.

lovedbyHim
08-04-2011, 12:02 AM
Lovely, I have to be up in less than 6 hours and of course can't sleep and have to work 8 hours tomorrow. It's like since I was officially diagnosed which of course is during a flare up, probably my worst ever because it consumes so much of me the flare up is worse. I just can't take it. I don't go to the specialist for 25 more days and all my gp will give me is 500mg naproxen. How am I suppose to keep working full time until the doctors in so much pain. It is affecting every area of my life. It is affecting my relationship with my husband because he is to afraid to be close to me because I hurt so bad. I can't do anything because I don't have the energy. I'm only 35 years old, I liked it better when it was thought my problems were in my head rather than I will have to deal with this for the rest of my life. How am I suppose to do that?


Nicole, I have been having the worst sleep in my life since I am now going through hormone changes on top of lupus, fibromyalgia, hoshimotos thyroiditis, osteoarthritis, and very sick kids. I am up typing when I need to be up for work in two hours. Here is how I get through a job that requires me to be very attentive. I try to live in the present as best I can. I can't allow myself to dwell or ruminate on every detail of what my body is doing now. If I did, I would problem be on a psych ward loaded up with morphine.

In time you will be treated with better meds, until then, please try not to let this diagnoses steal your moments. Life is precious. Try to treasure every minute in spite of symptoms, because, there is no drug that is going to take this all away. I was loaded up on all kinds of meds not to long ago and the side effects became more of a problem than a help and so I am learning to accept this new me and I have more peace about less sleep, pain daily, sweats, chills, headaches, fatigue, and many of life's troubles. I really believe you can have lupus or it can have you. Don't let lupus steal your life & your joy. It will only make the journey more miserable. Even if you were given the best meds tomorrow, they take awhile to work. Try to focus on the good stuff like the crazy things your teens say, because they always have something worth laughing about. I write this in love as someone who has suffered a long time.

sharpiessave
08-04-2011, 12:15 AM
Oh, Nicole, I just wanna wrap you up in a big ole cyberhug and rock back and forth and sooth all the scared away. I remember feeling a whole lot like this when I was first diagnosed. I can tell you that since I've started my meds, I've had way more good days than before I was diagnosed. There was almost an entire year of bad, well, horrible days. Now every once in while I get a good one, and I latch onto those as hard as I can. I know what you mean about this being the worst flare. It's sinking in, I bet, that lupus is forever. But dude, you can totally get it under control, and once you do you'll be amazed at how much better you feel. I'm not talking about feeling well again, I'm just saying it's going to get better than it is right now, and you'll learn to adjust to the new you.

I can't remember your history right now. Did your GP diagnose you? Is the appointment with the specialist in 25 days your first? I'm asking because of your pain issues. I have horrible pain that absolutely requires specific meds. If your GP diagnosed you, he or she must have some inkling of the amount of strain your body is going through. You don't have to go narcotic, if that's what they're worried about. I've found Ultram or Tramadol, which is nonnarcotic, to help a lot with the swelling and pain. If you've seen your specialist before, I would absolutely recommend just calling the office and speaking with one of the nurses about what you're going through. I've done this many times with my Rheumy and his awesome staff. They've then been able to hook me up with what I need, whether it was pain meds or a different prednisone dose.

I'm not a doctor, and I don't know what your particular issues are. But I have become a bit of a professional patient, and I know that fighting for yourself is the best way to get what you need. When talking to my doctors, I don't mince words. I threw out my 'nice hometown girl' attitude when I went undiagnosed for a year. I would say to them exactly what I would say in my posts here; that my pain is controlling my life, and debilitating me, and I need some way, whatever way the doc thinks is best, to keep it under control. I strongly believe it's your doctor's job to make you feel the absolute best you can.

Good luck at work today. I admire you for not calling in sick with no sleep. =) Obviously you're hardcore in the work area of your life, so I think you can be hardcore with your healthcare team too. You really are your best advocate. Only you know how it feels to be you, and it's up to you to communicate that to your docs. You can totally do this, dude. You can! We here at WHL have your back, so know that we'll be thinking about you all day long, sending NICOLE CAN DO THIS! thoughts up into the air every few minutes.

JuliaL
08-04-2011, 12:39 AM
Nicole,
You have my total sympathy. I remember all too well what it was like when all of this started, I was bewildered, in pain, and had to drag myself to work.

Can you go to a walk-in clinic to maybe get some help and relief? I don't know how they are in your area but the ones I've been to have been excellent. In fact, it was a walk-in clinic doctor who first suspected that all of these "flu" episodes I'd been having could be an autoimmune disease and he got me into a rheumatologist FAST! At the very least, they might be able to prescribe something to help you function better until you can be seen by the specialists.

I hope you start feeling better soon.

Julia

Nonna
08-04-2011, 01:29 AM
Hi Nicole,
I've been where you're at. When the naproxen wasn't enough. Can't tell you how many time I fell asleep in a hot bath. It always felt weird to run a bath at 2 or 3 in the morning but man did it help me.

Big cyber hugs abd good thoughts headed your way.

As for work you will find you can do it. We do what we have to

nicolehinkel
08-04-2011, 09:03 AM
Thank you everyone. I am so overwhelmed and I don't know what symptoms are normal. Last night my fingers decided to swell up. I have lost over 12 lbs in the last few months but I have been trying and right now I can't even get my rings past my knuckles. I don't go to the specialist until the 29th but my family dr is like whatever, you have to wait. Ugh!