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