Just an update

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Regular Member

Date Joined Mar 2010
Total Posts : 90
   Posted 10/15/2010 5:51 PM (GMT -6)   
Hey guys...just an update for a few of you that were following my fatigue/broken bone feeling flare.  I ended up being told my the rheumy on call in my office to go to the er yesterday...which of course ended up in a bunch of pain meds...iv diluadid every 3 hours or so and some valium as a muscle relaxer and even with all that it just took the edge off for about an hour.  They increased my plaquenil to 400 mg a day and prednisone to 40 mg for the next 4 days...and increasing Savella I think is the next step. I can't really type more now, because I'm still in tons of pain and unfortunately the attending was going to give me a weeks worth of stronger pain meds to get me through it until the other meds kicked in and right before they let me go, his resident decided he didn't want me on any more pain meds because i should "stay away from narcotics and slap anyone in the face who tells me to go on them regularly at my age".  I understand the risks...but the first doc knew my history...5 major surgeries, kidney stones, chronic pain patient for which the director at the same hospital told me theres "nothing more he can do for me"...I can deal with pain and I want to get off pain meds...but in a flare...I can't even walk so there I got shoved out the door and he even said "well I'm disobeying the orders of my attending because I'm not giving you that".  So here I am stuck with the  rheumys office telling me to double the dose of Norco I take without even checking with my prescribing doctor.  The 11 hours in the ER didn't help the lupus - in fact my knees are more swollen today...but it did help by Bladder and IC a little so I guess I can be thankful for that.  I have a lupus loop in my area my family raised almost $2k to walk for me, so I'm planning on putting on a smile and being pushed there in a wheel chair, but I'm just praying I start feeling better with the increase in meds.  Of course hyperventalating from the pain caused all sorts of upper body soreness today but that's to be expected.
They said its so tough on my body because the lupus started flaring which started flaring my fibro and my IC and my vulvodynia/vulvar vestibulitis.  Most people Ive talked to in the course of raising money for the walk have said the average is a year before their meds are figured out and they start to finally feel better.  Hey I'm 2.5 months down...I'm praying my day comes sooner :)
Has anyone with both lupus and fibro had a lupus flare in the joints spread to make their legs and arms feel like their just crushed?  And can I look forward to this year?  I want to get off pain  meds...I'm not stupid, I don't want to become tolerant at 26 and I want to have kids...hell I want to get off everything but plaquenil...but I just think it was cruel for him to take away the opportunity for me to get through the worst flare of my life when the attending prescribed it...ok..can't type anymore, but Butterflake and lynn and some others have been so amazing and inspirational...thanks so much for your support

Regular Member

Date Joined Sep 2010
Total Posts : 51
   Posted 10/15/2010 10:33 PM (GMT -6)   
I think it was completely irrational for him to have not given you the meds. It's clear that he has no understanding of lupus and the pain that a flare can inflict on your body. You should have told them you wanted the attending back in your room. 'will your rhumy do anything to help you right now? I hope you feel better soon. Keep us informed on how your doing. May God Bless and Keep You!

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 10/16/2010 7:45 AM (GMT -6)   
Hi Pennstate. I'm so sorry you're going thru all this. Since you mentioned inspiration here is something I post occaisionally for those in great need:

Starting in 2003 my life was a terrible struggle with so many symptoms docs didn't believe I was sick. I attempted suicide and the psych hospital sucked unbelievably. I had to invoke the family medical leave act, didn't work for 3 months, filed for bankruptcy and returned to work.  Even after diagnosis in 2005 I was working full time, taking the revolving medication trials, going to sleep at 6:00PM nightly so I could make it to work, and spending weekends in bed. Finally I became so sick that I couldn't drive, couldn't walk without a walker, and was so weak my BF had to bathe me. Naturally I had to quit work and apply for disability retirement. I eventually was diagnosed with infected parotid glands. It took me months to recover, but I did recover. Now, here's advice that our member Babs gave me a few years ago: Look at this time as if you're crossing a bridge. Some bridges will be longer than others. Sometimes it seems the bridge will never end. You can't even see the end of the bridge, but it is there. Eventually you will cross the bridge and get relief for a while. I've crossed many bridges the past 5 years. You will find strength you never knew you had and you will cross them too. I'm sending you lots of positive energy to help you during your crossing. Love, Butterflake

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