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New Member

Date Joined Mar 2013
Total Posts : 3
   Posted 3/22/2013 10:40 PM (GMT -6)   
Trying to make a long story short I am 30/f. Since about the age of 22 I get a host of weird vague symptoms. Once a yr I would get muscle pain, feeling like I couldn't lift my arms, like a severe workout without exercise. It would maybe last a few weeks then go away. In the meantime I would have sudden onset tachycardia. In 2009 I had an EP study and was diagnosed with Inappropriate Sinus Tachycardia and that I would "outgrow" it. Sure enough I went two years without issues. Over the last three years my "muscle flares" have increased from 2x yr to now 3, lasting longer, and more severe. My CPK has slowly been creeping up but only from 150-355 (this was in Jan).My ANA has always been 1:80. In December I starting having several episodes of a piercing headache followed by high blood pressure and tachycardia. I also had a low grade fever of 100 daily. Tested for EVERYTHING (bloodwork all ok, head ct ok, cardiology ok, pheo ok) However my viral markers all came back positive. A complex antibody reaction, Epstein barr like qualities. I was told that a virus was likely causing these problems. They did stop after about 5 weeks of this. My fever went away for two weeks and I felt fine. Then I got a sinus/ear infection. Placed on antibiotics, fever came back and my "muscle flares" went crazy. I am a nurse in the OR, I run, bike, cross fit so I do not appear "ill". Doctors keep saying I am too healthy to have something wrong. This week has been horrible. At nights especially I have HORRIBLE pain in my shoulders and upper arms. The worst pain ever! I just shake all over because I feel so bad. Constantly feel like I have the flu. So tired and run down, certain areas of my body will feel hot to the touch. Went to regular dr to get lab work and neuromuscular dr (grandpa and his siblings all have polymyositis). She said that I was too healthy and did not fit nicely into any certain profile of anything :-( Yesterday I got my lab results and just from Jan my CPK is now 1,000 and my ANA is now 1:160 homogenous and speckled. I am so sick of feeling like this. Today I hurt so bad I just sat and cried. It hurt too bad to even move, like a severe lactic acid buildup (worse in arms, but a little in legs) I walked into my regular dr who called the muscle lady from yesterday who said I do not need a muscle biopsy. My regular dr gave me steroids to take/taper for a little bit because I said someone had to do something and it's not reasonable for me to function like this. ANy ideas??? My dr mentioned Mixed connective tissue disease but I guess I need more labs. What to do??? Rheumatologist is the best route at this point?

Veteran Member

Date Joined May 2005
Total Posts : 7725
   Posted 3/22/2013 11:13 PM (GMT -6)   
Yes, I'd try a Rheumy - they're the ones who deal with MCTD. Or UCTD or Lupus.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

New Member

Date Joined Mar 2013
Total Posts : 3
   Posted 3/23/2013 12:59 PM (GMT -6)   
I started 60 mg of prednisone yesterday but I still am having the pain. For anyone who is familiar with these flare up and extreme muscle pain how long does it take to typically see some sort of relief? I am starting to get nervous because I was hoping that this would make me feel a little bit better and I am still having this burning/fatigue/ pain in my shoulders and upper arms.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 3/23/2013 7:05 PM (GMT -6)   
Usually it takes 2-3 days for the relief from prednisone to kick in for me.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))
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