DX of fibro for 7 years, now maybe myositis?????

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

bayoub2
Veteran Member


Date Joined Sep 2006
Total Posts : 2861
   Posted 5/22/2011 11:51 AM (GMT -6)   
Hi everyone
 
     I post on Fibro (dx 2004) and chronic pain (2006). My regular doc sent me to a neurologist/sleep specialist. I filled out a 10 page questionnaire and he talked with me for an HOUR!!! He asked who dx'd me w/ Fibro, and some other questions. Then he says I"m not convinced you have fibro. He says he's seeing myopathy and ordered blood work for epstein barr virus serologies, CPK, aldolase and creatine plus a sleep study. Can anyone help me understand these tests?
 
     I am on disability due to fibro(or whatever itis) I stopped taking lortab 2 months ago because it was beginning to rule my life....I hurt so badly, sometimes I just curl up  and weep. I have lost all my friends,  I rarely leave home, I have a beautiful daughter who needs a mom. My pain is in my legs, back from waist down deep throbbing not nerve pain. Hard to walk up stairs, braid my hair, buttons open jars, trouble swallowing, bladder measured 50% due to wall thickening, massive sleep disturbances  due to PLMD 20 times per hour. Recently pain in shoulders and upper arms.
 
     Lupus forum is the only place I saw talk about myopathies. Can anybody help me understand? I think doc might be right because all those "miracle" drugs for fibro ain't working. This has defeated me and I am no shrinking violet. Thanks for listening.
 
Bayoub

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/22/2011 2:16 PM (GMT -6)   
I've had a sleep study before. It's not bad at all.
I came into the study center at 8pm and put on my pajamas. The attendent came in and glued wires all over my head, two on my chest, two on my legs, and placed a special belt around my lower chest. I climbed into the bed and they plugged me to a monitor and taped a pulse ox to my finger. I slept for most of the night and was shooed out of the center at 6am after they pulled all the wires off. I went back two weeks later got rewired and they made me sleep with a Cpap that night. Next morning woke up at 6am, unplugged, and shooed out again. The glue is murder to get out of your hair though. You have to wash your hair in mineral oil to loosen it.

In medicine, a myopathy is a muscular disease in which the muscle fibers do not function for any one of many reasons, resulting in muscular weakness.
Joy

bayoub2
Veteran Member


Date Joined Sep 2006
Total Posts : 2861
   Posted 5/22/2011 2:43 PM (GMT -6)   
Thanks for the reply tater! I had 1 sleep study 3 yrs ago...my legs move so much they had to keep coming in to put leads back on-lol....and forget about having to go to the bathroom.
 
Can anybody tell me what these new blood tests show? It seems many autoimmune disorder tests are very fluid and fickle. I understand Lupus is a perplexing disease and my heart goes out to you all....living with a chronic illness is something I can relate to....but now, I'm not sure WHAT chronic illness I am fighting
 
Thanks for your time
 
Bayoub

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 5/22/2011 3:08 PM (GMT -6)   
I'm sorry you're having to deal with such pain and not getting specific answers.  That limbo land is a tough place to be in, as so many of us can attest. 
 
Try to be patient waiting for the test results from the neurologist - it sounds like he is on the ball rather than dumping all symptoms into the fibro basket.  I've been there, too.  It's not helpful and delays important diagnoses and treatment. 
 
 Myositis is an autoimmune connective tissue disease - the cpk, aldolase, etc. are checked  to see if you're experiencing muscle damage.  I'm interested in his checking the epstein barr serologies.  I have been told I have chronic EBV, but nobody seems to know what to do about that.  I hope you'll share what you learn about that - and I hope he'll explain if that is specific to anything beyond fatigue.
 
I had fibro for 10 years before problems started ramping up and finally I was sent to a rheumatologist 3 years ago.  I am still "undifferentiated" with connective tissue disease....could be lupus....RA...whatever.  Beginning plaquenil as a medication has helped considerably.  They still say I have fibro....but that is a separate issue.  It isn't uncommon to have fibro AND another AI disorder. 
 
I truly feel for your frustration and feeling defeated.  This forum is a great place to learn and compare notes and vent.  For me, it especially helped me prepare questions for appointments & not be afraid to ask, and realize I had a lot to learn and it wasn't going to all come from the doctor.  Case in point was sun sensitivity - I finally made the connection between my flares and being out in the sun for too long.  The doctor had failed to mention that connection.
 
While you are waiting for more information, try not to stress - as someone said recently you're kind of in the hardest place right now - the uphill climb - but eventually things will level off and you can catch your breath.  This isn't your fault, it's not in your head (I really needed to hear that and believe it!).  Try to rest when you can, eat as healthfully as you can and just hang in there.
 
Best of luck and let us know how it goes....
 
Lucy

bayoub2
Veteran Member


Date Joined Sep 2006
Total Posts : 2861
   Posted 5/22/2011 4:43 PM (GMT -6)   
Dear Lucy-

thanks so much for your answer. Is crippling fatigue typical in autoimmune disorders? I had a good day on friday today I can barely lift my head. Yes, I am very light and sound sensitive also.

I do think I had/have fibro because initially I had it all the IBS, TMJ, restless legs (still have those) but as you said, I seem to be moving to a whole new level. I appreciate the encouragement, I don't get much support at home (they think I'm being a drama queen or trying to get attention-really I want to be left alone!) This forum was a tremendous support when I got fibro, so I knew I could chande forums and find great people here too!! I will derfinitely let you know anything I find out about EBV also. Look forward to talking with y'all soon. Thanks again

Bayoub

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/22/2011 6:16 PM (GMT -6)   
Yes! the crippling fatigue is all part of it. :(

Yesterday was my "I can't move because my body feels like I've ran a marathon" day. It's extremely frustration to be feeling good and then be hit with exhaustion so hard you have to sit down or fall down.
Joy

MissLadybug
Regular Member


Date Joined Oct 2008
Total Posts : 261
   Posted 5/23/2011 1:12 PM (GMT -6)   
Ok so I love your post....I can relate! I have the same pain from my waist(in my back and front)down into my legs and feet...aching/burning/throbbing/hurts to be touched etc....and it does feel like you have worked out...I have also had elevated CPK's(muscle enzymes)off and on but only into the 300's at most...my rheumy doesn't feel that this is abnormal, however I have read that myositis causes elevations in these but it's usually in the thousands with a myositis. I also have Lupus/SLE and I know it can be an issue within Lupus itself so why couldn't it be a small issue without it causing major damage? I also have a lot of skin and joint problems and now recently lung issues with pleurisy. I've also had CNS symptoms in the past(epilepsy and autonomic nervous system(tachycardia, sweating,etc.) symptoms along with the pns(nerve pain/neuropathy(tingling, burning,etc)...but they say that is NOT cns Lupus as well..soo...I went to a neuro...i'm told my pain is neuropathic and the numbing distribution is similar in conjunction with vasculitis(duh that's cns lupus!)..however i've had negative tests(emg's, small fiber nerve biopsy, etc.)...so I ask my rheumy why that is and she says "well some tests can yield false negative results"...so i'm like which one is it???....UGGH this stuff is extremely frustrating and annoying! I've tried meds...naprosyn did nothing...and neurontin didn't help either..tried cymbalta but only took it 1 or 2 nights due to side effects from taking other meds along with it...help! Bayoub if you get any answers PLEASE let me know! I do not have to get up and use the bathroom at nights like you all do and I don't really get weakness like you all describe either BUT I have no tender points for fibro and never have. My drs have never mentioned this either i'm assuming due to that. If anyone has any ideas feel free to suggest! Hope you all are well. *hugs* -Brittanee
*Lupie Britt*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:Plaquenil-200mg 2x/day, Prednisone-10mgs taper 1mg every 2 wks, Keppra-750mg 2x/day, Prenatal Vitamin- 1 pill/day, Folic Acid- 1mg 1x/day, Prilosec 20mg 1x/day,Vit. D 800IU's 1x/day, Allegra 180mg 1x/day, Flonase 50mcg 2 sprays each 1x/day.

*Forever_His_LadyBug**I

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 5/23/2011 2:19 PM (GMT -6)   
It's funny (not) that some  doctors will diagnose fibromyalgia despite no tender points, but disregard other clear markers for lupus/other AI issues - as in:  not high enough an elevation, not specific enough, blah blah blah.  
 
It seems, sometimes that unless you don't  show up to your appt. with a raging and classic malar rash, fever, bald spots, huge lesions in your mouth and positive lab markers all at the same time - then it's probably not lupus.
 
I've said this before - a fibro diagnosis only muddies the water if it comes first.  And I think that utter fatigue has been more of a problem with my UCTD than the fibro - or maybe it's a combination.   Probably it has to do with the inflammation - which is not a part of fibro.  Always something.
 
Lucy
 
 
 

bayoub2
Veteran Member


Date Joined Sep 2006
Total Posts : 2861
   Posted 5/23/2011 4:55 PM (GMT -6)   
Hi Y'all
 
     I am so sorry so many folks are in diagnosis limbo land, but glad I'm not alone. Had labs done today but don't see neuro for a month...OMG!!! And yes, being dx'd with fibro so long ago and just now finding out it may not be that, well, that makes me pretty angry. I'm sure many of you have been suffering for years taking all sorts of expensive meds with horrible side effects and seeing countless doctors as I have. And some of these doctors seem eager to get you out of their offices 'cause you're just a apin in the butt and they don't have answers for us.
 
    This neuro thaat I just saw asked me questions noone had asked before...noone had ever even done trigger point exam on me.. As lucy said they just throw us into the fibro basket.
 
     Anyway, today was low pain, high fatigue day. I pray every night that I'll have a good day but I never know what to expect. How do you folks hold down a job? I really admire that, and jealous too-lol.
 
     On the AI issues, I started with swollen groin gland, moved to neck glands then a series of UTIs and I just felt like my body was completely unable to fight off anything.  My doc didn't seem to think about it at all. Anyway, thanks for letting me vent, there are lots of sincere doctors out there and they still don't understand these disorders, but I wish that they would REALLY listen to the patient better.
 
Will keep you posted,wishing a good evening to you all
 
Bayoub

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/23/2011 6:55 PM (GMT -6)   
I'm just getting into this AI limbo land. I'm a first grade teacher and it's tough to keep up. On low energy days I teach mostly from my chair with wheels on it. I just roll over to the child (they love it!) or tell them to come to me.
On pain days I have ice packs on my hands and tell the kids not to touch my hands. I take tylenol for my headaches. When it's a double whammy day I grunt and drag through the day.

It took going to five doctors (three PCP, Endocrinologist, allergist) before one finally listen to me. It was my allergist who did the ANA test on me and sent me to the rhuemy.
Joy
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, September 24, 2018 1:19 AM (GMT -6)
There are a total of 3,005,988 posts in 329,290 threads.
View Active Threads


Who's Online
This forum has 161817 registered members. Please welcome our newest member, Butterfly_.
240 Guest(s), 0 Registered Member(s) are currently online.  Details