Just an update

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BigBry
Regular Member


Date Joined Nov 2008
Total Posts : 106
   Posted 6/16/2009 12:41 AM (GMT -7)   

I thought I’d give a quick update.  I’m still off my prednisone and plaquenil on Dr’s orders from last December and things have been much worse since then.  I was told by the UBC lupus specialist I was referred to that my rheumy (the UBC arthritis department head) doesn’t believe in fibro and won’t diagnose it.  She has diagnosed me with fibro but was unable to figure out the rest of the problem.   I’ve been getting symptoms of Raynaud's cold fingers, toes and nose with my finger tips going dark in colour.  So far I’ve been told I have tendonitis in my wrists, elbows, shoulders, neck, back, hips, knees and ankles with arthralgia in my hands and feet.  All over tendonitis this is a new one to me. 

 

I hope this finds you all doing well. 

 

Bryan     

Post Edited (BigBry) : 6/16/2009 1:49:16 AM (GMT-6)


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 6/16/2009 10:22 AM (GMT -7)   

Wow, Bryan, I'm so sorry you've been dealing with this intense and unmedicated "limbo" for so long.  I don't understand the doctor's thinking.  I can see why they would have wanted you off meds for a bit to see what might change/happen....but 6 mos.? And from what I understand it's not at all uncommon for fibro to co-exist with AI disorders.  I have both a fibro and UCTD dx.  Hope you are getting some help with the pain.  Hang in there....are you in British Columbia?

Wishing you better days,

Lucy 


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


BigBry
Regular Member


Date Joined Nov 2008
Total Posts : 106
   Posted 6/17/2009 1:19 AM (GMT -7)   
Thanks Lucy. Yes I'm in South Surrey BC. My second cousin has similar symptoms and has been Dx with Fibro and MCTD. It's funny because her conditions got bad enough that she had to stop work at 40 and so did mine. I've told the Dr. about her but they don't seem interested.

Bryan
DX: IBS 00, +ANA 05, Depression 06, MCTD & Sjogren's 07, GER 08, NO Sjogren's 09, Fibro and all over tendonitis?????  
Life is what you make of it.  Just something I try to remind myself every day.


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 6/17/2009 5:34 PM (GMT -7)   

I do know there are docs who refuse to accept fibro as a "real" disorder. (May they all hang by their toes).  Is that the doc who took you off all AI meds?  So.....tendonitis in ALL your joints is the diagnosis they've come up with!?  Weren't you taking Plaquenil before?  I'm presuming you had at least a positive ANA marker to get that treatment.....I just don't understand the method to this madness....but I hope they stop stumbling around and start seeing the forest for the trees!

Keep us posted, Bryan - wishing positive changes for you.

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 6/17/2009 5:53 PM (GMT -7)   
Hey Bry...sorry things are still in the limbo! I am hoping that things will start getting better soon! Why are you off of Pred? Is it something you can get back on? Thanks for the update :)!

Amy

 

21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C


BigBry
Regular Member


Date Joined Nov 2008
Total Posts : 106
   Posted 6/18/2009 2:13 AM (GMT -7)   
Thanks Amy, Ya it's the same Dr. that took me off my pred. and Plaq. I have a positive ANA 1:1280 that keeps climbing, CRP 9.6mm/L (3.0mg/L is high risk over 7.0mg/L is significant for active inflammation), ESR 28mm/hr (normal 0 - 11mm/hr). So they know I have something they just don't know what. All the Dr's just say come back in 3 months. I guess they're hoping it'll go away by then. Oh well that's life you just gotta carry on.

Bryan
DX: IBS 00, +ANA 05, Depression 06, MCTD & Sjogren's 07, GER 08, NO Sjogren's 09, Fibro and all over tendonitis?????  
Life is what you make of it.  Just something I try to remind myself every day.

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