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bettyboop22
New Member


Date Joined Nov 2008
Total Posts : 12
   Posted 12/4/2008 7:46 PM (GMT -7)   
Hi all....
 
I have posted a few times on the fibro forum (and everyone has been really great) but I also thought I would stop in here as well.  I'm 31, married, and have a wonderful little 13 month who is the light of my life!!!  Anywho...my story is long and I don't really know how to condense it down..lol.  I am having problems and my first thought was fibro...hence me posting at the fibro forum.  Anywho....part of me is wondering about lupus instead or as well??  I guess I'll just list what's been going on and maybe someone could give me their opinion.  I have a rheumatology consult on the 16th of January but I am feeling worse every day and it is all scary to me.
 
Ok...first off....I'm a long time endometriosis sufferer....formally dx. in 2000 but I am sure I had it long before that.  I've had four or five surgeries for the endo...been on countless meds including Lupron for 9 months....but it just keeps coming back.  Thru-out the years...I've always felt very fatigued have had muscle aches and pains for years.  I always just blamed it on the pain and frustration from my endo...so I shrugged it off.
 
In early Feb of last year....I found out I was pregnant smilewinkgrin .  Overall..the pregnancy went well but I did have pre-term labor episodes twice.  Cooper was born on Oct. 20th of 07'.  Felt fairly good after having him but did suffer terribly from post partum depression.  Once I got that under control...I felt good except I had a lot of muscle pain...(like the pain's I've had for years...but worse).  Again....I just shrugged it off...but this time r/t lifting on an infant, an infants carseat,etc.
 
Went along with things until my endo started getting bad again.  I had surgery in August of this year.  I had a hard time recovering from the surgery.....felt extremely tired and "flu-like" afterwards.  My doc ordered CBC, UA....everything came back normal.  So...I just continued to bee-bop along until October when I got my flu shot.....
 
I got my flu shot late morning while at work.  By 4pm...I had a severe cough, SEVERE body aches and high fever...I could barely drive home from work.  The sx were short lived..but ever since ...my muscle pain has been quite bad....I've also developed some other sx as well.
 
I guess i'll just list out my sx so those of you who don't want to read my whole long saga..don't have to..LOL :)
 
*Severe muscle aches...more severe some days than others.  Always quite bad the week before my period.  The muscles involved vary....some days its my arms, some day's it's my legs,etc.  The aches are like a burning, nagging awful feeling.
*Frequent headaches
*Recently..I've developed joint pain...especially in my knee's and elbows...oh...and my left big toe.
*Frequent low grade temps and "flu-like" feelings
*Fatigue...sometimes severe
*Red rash on the outer (pinky side) aspect of both of my palms.  I've had this since around the time of my flu shot reaction...maybe a little before...not sure?  Again...at first shrugged it off...must be my hands rubbing on the keyboard,etc.  Well...I actually looked at where my hands rest and it's not on that area..that area doesn't touch anything...I can also be away from the computer for days and it worsens on its own. It's a strange rash...not raised...just fairly red.  If you look closely at it...it almost looks like little capillaries are broken or more visible...if that makes sense?  I don't have the classic butterfly rash on my face though. Not sure if the palm rash could be related or not???
 
Ok...whewww...I think that's all.  I went to see one of my pcp's associates the beginning of November.....she did a CBC, Sed rate, lymes test, and thyroid testing...everything came back normal.  That's when she referred me to the rheumy.
 
Ok...I'm quite sure you guys are asleep now...lol...after reading my book.  I guess I'm just looking to see what you guys think about my sx.  You all seem so knowledgable about lupus and autoimmune issues in general. I don't know why I'm thinking lupus....I do know it sometimes can be linked with endometriosis......as can fibro and chronic fatigue.....so I'm lost...and the sad part is...I'm a RN.  Ok...I better run....thanks for listening...and I look forward to hearing from any or all of you :)
 
Hugs
Olivia
 

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/4/2008 8:12 PM (GMT -7)   
Hi Olivia!
 
Welcome to the Lupus forum.  Don't worry, we read a lot of long posts. I think long posts and lupus go hand in hand! LOL.
 
Well, I'm glad you're seeing a rheumatologist.  Your symptoms could be Fibro, Lupus or both, or neither!  I think the fact that you have endometriosis is very compelling. Gynocological issues and Fibro/Lupus are closely linked.
 
I'm probably telling you things you already know!  You are an RN afterall.  But a key puzzle piece to what is going on with you has already been answered.  All your blood tests have come back normal. If you had inflammation going on which would signal "Lupus", your sed rate would have shown something, and your CBC would likely have been out of wack on a few of the tests.  It's very common to have a low hemoglobin and RBC count.  Not everyone gets this, but it is very common. Fibromyalgia is NOT an inflammatory disorder, so you'll have a normal sed rate.
 
Once you see your rheumatologist, they'll likely order a full Lupus blood panel.  A physical exam to test for Fibromyalgia will probably happen too.   
 
There's not much we can do until we know the results of that Lupus blood panel.  Let us know if there are other questions you have okay!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


bettyboop22
New Member


Date Joined Nov 2008
Total Posts : 12
   Posted 12/4/2008 8:30 PM (GMT -7)   
Hi Ginny...

Thanks so much for your warm welcome!!! Yep....the normal CBC and sed rate are part of the puzzle...thanks for reminding me of that :). So...I'm assuming the sed rate would almost always be elevated then...in the presence of Lupus? Could one have a normal sed rate and a positive ANA,etc? I guess I should know this..but like I was telling the fibro folks....we didn't cover a whole lot on fibro or any of the autoimmune disorders....pretty sad when soooo many people are affected by them. Anywho.....I guess the waiting game is on....it's so hard to wait when you feel so terrible. I used to take Vicodin just when I absolutely needed in for my menstrual cramps......I've been utilizing it a lot more often lately. I don't like to use it but I need to be able to function to take care of my Cooper, housework and working full time...bahhhh.

Oh my gosh.....I forgot to mention one of my sx. too...I can't believe this because it's so bad a lot of the time. Anywho...I have a pain in my back...on the right side....near my ribs. Pain is pretty mild until I take a deep breath...then the pain gets a lot worse. My doctor dx me with an ulcer...but I don't really think that's the case....when my other sx are bad....the back pain gets worse.....I was thinking costochondritis....or pleurisy...which I think is common with lupus??? Boy....I feel like I'm turning into a hypochondriac here!! I guess it's just in me though...I work as a telephone triage nurse...so I'm used to figuring out and trying to solve patients problems :).

Ok...thanks again..

Olivia

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/4/2008 9:29 PM (GMT -7)   
Hi Olivia!
 
You can have a normal sed rate with a positive ANA.  But when you're presenting so many symptoms, and not taking anything to treat them (like prednisone, Imuran, etc), the sed rate will be higer than normal. (normal is 0-20).
 
When I was diagnosed.  My ANA was positive 1:320, and my sed rate was almost 100.  
 
Right now, I don't know what my ANA is, but my sed rate is 8.  My lupus is quiet and I have no inflammation going on. 
 
I agree, your rib pain could be Fibro, costochondritis, or pleurisy.  Is it worse when you lay flat on your back?  If so, it's probably pleurisy.  BUT, your sed rate came back normal, which means there's no unusual inflammatory process going on, so pleurisy is likely not the culprit!  So many if's and's or but's! I'm yacking out my behind right now, lol.
 
LOL, you're not a hypochondriac!  It's great that you already know a lot of this.  Your problem solving skills will come in handy!
 
I guess it's just a waiting game now isn't it. Darn, if only you were seeing your rheumy sooner! Keep a diary of all your symptoms, any rashes, etc.  HOw much sleep you need, what your period is like (it's SO linked to these disorders it's not even funny!).  That way you won't forget anything when your appointment comes along. 
 
I hope you have a good night Olivia.  Talk with you soon,
Ginny
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted Yesterday 12:58 PM (GMT -7)   
Welcome!

You may have already checked out things at the Lupus Organization, but if not there is a link at the end of my signature. There is the "4 of 11" criteria for diagnosis - some doctors insist on blood work for dx, but some will dx on symptoms alone. I am one who definitely has lupus but have never had huge extremes my bloodwork.

You'll also find a link there for Lupus Resources - this is a thread on this site where many of us tossed in our favorite tips for the newly dx or those wondering what all they should include when talking to the rheumy for the first time. AS an RN, some of it will be old news, but every time I read it I remember something I've forgotten!

Come on back with all your questions!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(8mg), Piroxicam, Xanax(as needed), Trazodone, Boniva(monthly), Wellbutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted Yesterday 1:43 PM (GMT -7)   

Hey Olivia,

Welcome to the forum.  you have a wealth of information that you have shared with us.  i tend to like the long posts, because I listen to things that I do not remember, or reminded.

One of your symptoms seems to be part I have for several days.  right rib cage just under and on top a little of the area.  That pain was also in my right side and my right back muscles.  excruciating sometimes.  laying down was the only thing that I could do to relieve it.  But it has calmed down some now.  Still  have the pain, but it is not as bad as it was.

Thank you for sharing with us

Hester


Lupus diagnosed 1996, Fibromyalgia diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008, Stroke 11-4-08
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  

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