Does anyone feel that they are treating

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Regular Member

Date Joined Jan 2012
Total Posts : 135
   Posted 1/22/2012 3:35 PM (GMT -6)   
I'm cry getting so sad and frustrated...everytime I get below 20 Mg Prednisone the aches in joints, swelling in hands, knees etc and fatigue comes back with a vengeance! My Rheum seems to just take it in stride (its not ruining her life!) & calmly starts me on another taper. Right now I honestly can't remember the last time I felt good - or even remotely normal! Been thru diagnosis hell! And even tho I finally have the diagnoses (plural!)..there seems no fix! 5 yrs & counting! Seems no closer to ...anywhere..than day 1. How can that be?!
I've been thru Plaquenil, Methotrexate (oral & injectable), Imuran, u name it...all without luck (some intolerable ..others shut down liver)! I really feel like a true guinea pig! confused
I'm usually not a complainer - my philosophy is "Just bc I'm in pain doesn't mean I have to be a pain!"..but I'm getting to the point that I'm wondering if I should try something else! Anyone try "healing therapy" like Reiki? Is this totally ridiculous?! I feel as if God is playing a horrible joke on me! Doesn't life get better than this?!
I'm fortunate my marriage hasn't imploded... my husb seems to finally " get" that I'm sick & its not a choice yet...he has never been to an appt w me (in 5 yrs!) & TG I had my father to take me for 2 yrs before we moved! Now I'm alone & drag myself there - yes..I feel like I've literally willed myself to get to the Rheum's office so many times! Sorry to go on..just feeling like I am that puzzle piece that doesn't quite fit into the space - perhaps it's cut wrong... whatever - point being feel like I don't belong in this world! Like I said..feel like God is playing a joke on me.. only I'm not laughing sad

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 1/22/2012 3:56 PM (GMT -6)   
A doctor doing taper after taper doesn't make sense. It sounds like you should be on Prednisone for a longer term, like for a year or so.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Regular Member

Date Joined Jan 2012
Total Posts : 135
   Posted 1/22/2012 4:20 PM (GMT -6)   
I know! I'm getting tired of the ups/downs..well not many ups :(
Having a hard day - not feeling too happy..just full of tears! I know self-pity gets u nowhere. Thx lynnwood for Msg. Feel like maybe I should try to get into Mayo clinic as I've been getting nowhere - fast. Then again I don't have energy to get thru today.
age 41, Mom of 2 great kids (10 & 7)
MCTD(LUPUS), RAYNAUDS, FIBROMYALGIA, L4L5 disc herniation, fracture in L3 fro EPIDURAL in childbirth
Meds: Arava, prednisone, Nifedipine, estropipate, cyclobenzaprine, Cymbalta, sulfasalazine, gabapentin, hydrocod, fentanyl patch, methotrexate - MTX (on hold), minocycline, clonaxepam (sleep), vit D, PRILOSEC, Transderm Scopalamine, Vit Bcomplex

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 1/22/2012 4:42 PM (GMT -6)   
Sorry you're having a bad day, Angelina.
I've found the best way to take my mind off the discomforts of my illness is to do something I enjoy very much.
I love mysteries, puzzles, and crafts. If my hands are not hurting too bad I do my crafts-jewelery making, crochet, cross stitching, painting, drawing.
When my hands hurt I watch murder mysteries, read books, or listen to uplifting music.
Sometimes just enjoying time with family and friends distracts the pains.

I hope you can find a good doctor to help you out better.

Regular Member

Date Joined Mar 2005
Total Posts : 140
   Posted 1/27/2012 1:29 AM (GMT -6)   
Just wanted to say I can relate to you... I too can't remember when I felt good :( This is such a frustrating disease..
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