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n8bean
New Member


Date Joined Jan 2012
Total Posts : 3
   Posted 1/17/2012 9:23 AM (GMT -6)   
Hi all,
I am a 26 yo female who has had joint pain going on four years now, I eat fairly healthy while restricting fatty and fried foods and all that other bad for you stuff, I am in the normal weight range for my height.  Recently (within the last 6 months) it has gotten significantly worse, it use to be intermittent but now is a daily struggle.  I get the pain in my hands, knees, elbows, hips and shoulders, my hands swell and become stiff in the am and pm.  I have also been extremely fatigued for these four years and recently this has become worse accompanied by a general ill feeling when I wake up in the am.  The pain has gotten so bad that I can not sleep throughout the night no matter what over the counter drug I take, sometimes I have severe pain whilw walking, writing and doing stuff like brushing my hair or stirring food for a longer peiod of time.  weirdly enough I have also (for the past month and a half) have been noticing an almost oil like substance in my urine (almost like when you drop oil in water is what I see in the potty, but without the color difference).  I suffer from constant headaches, extreme menstral time symptoms and occasionally get this weird feeling down the back of my calfs, almost like someone is dripping cool water down the back of them.  I had some tests done and here are the results:
ANA- + 1:320
Crp-normal
RA factor-normal
Sed rate-3mm/hr
CBC-(although some things were on the very high or low side all were in the "normal" range) with the exception of my MPV which was 11.1-normal scale was 6.5-10.5
Urine culture- negative
Urinalysis- all normal with the exception of a low specific gravity (1.003-normal was 1.005-1.030) and there was "epithelial cells-1/hpf" which I believe is normal as well.
 
I have a rhumetology appointment next month but was hoping someone could shed some light on the situation as far as what may be going on, what the results indicate and what to expect going forward.  Also my brother has an autoimmune disease-Crohn's.
Thanks so much!
 

AngelinaATF
Regular Member


Date Joined Jan 2012
Total Posts : 135
   Posted 1/17/2012 2:34 PM (GMT -6)   
Dear n8bean,
welcome & I'm sorry for your pain, situation. I too struggled for a few yrs until I demanded that my Dr do an ANA test (he agreed but thought I was overreacting). He called me 3 days later with the highest results he said he'd ever seen. It was then that I was taken seriously - whew! But then it took 6 mos for an appt.
First of all, have u asked your Dr for any meds bc it sounds like you need some & if u don't ask, they wont give u any.
Angelina
age 41
dx: MCTD(LUPUS), RAYNAUDS, FIBROMYALGIA, L4L5 disc herniation, fracture in L3 fro EPIDURAL in childbirth
meds: Arava, prednisone, NIFEDIPINE, estropipate, cyclobenzaprine, gabapentin, hydrocod (4BTP), fentanyl patch, methotrexate - MTX (on hold), minocycline, clonaxepam (sleep), vitamin D, B stress complex, PRILOSEC, Transderm-Scop (on hold)

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 1/17/2012 3:09 PM (GMT -6)   
Welcome to our corner of the world!

Unfortunately, there is not much to do until you see the rheumotologist. Basic things, like drinking water & cranberry juice might help the urine issue. One of the first things they say with joint pain is to take 4 Ibuprofen as often as you can (I think every 4 hrs?) with food. Warm bath with 1/2 cup Epson Salt or Apple Cider Vinegar draws soreness out.

What kinds of foods are you eating? Sticking to basics and avoiding processed foods might help a little - lean meats, vegetables, fruits. Avoid white items (flour, sugar), sweet potatoes are good.

Check out the Lupus Resources thread (link in my signature below) to get tips on how to prepare for the first rheumy visit. Maybe you can call and get on the wait list for an earlier appointment?

Hang in there.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

n8bean
New Member


Date Joined Jan 2012
Total Posts : 3
   Posted 1/17/2012 5:19 PM (GMT -6)   
Lynnwood-i know its a no no but I have been trying to research, at first I thought maybe it ease a false positive although when I read further I discovered that for the 1:320 titer the results are 97% accurate so I am very anxious! I have tried everything to no avail, while a bath and ibprofin help for a little while nothing keeps through the night. I mostly stay away from processed foods, we make all homeade dinners, i eat cereal for breakfast and salads for lunch, sweet n low in coffee and breads only occasionally-whole wheat. AngelinaATF-I have not been to a regular doctor in 8 years until now so this was a new doc. She basically dismissed my complaints and said I was too young for joint pain, I had to call and beg for the testing! I feel uncomfortable seeing her again let alone asking for meds. I am waiting to get in with another general doctor but its a long wait!!! It is so frustrating knowing something is wrong, not being a normal complainer and to be dismissed and then have to wait a month with anxiety knowing I have something wrong but not what and not how to fix this!!!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/17/2012 5:40 PM (GMT -6)   
I know the frustrations you're feeling. I was hurting a lot while I waited to see the rhuemy.
Have you tried heating pads and cold packs?
Joy

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 1/17/2012 6:02 PM (GMT -6)   
oily like urine typically means too high a fat content in the diet and the liver being unable to break it down - as with people who have had their gall bladders removed.


and your pain sounds like fibromyalgia (I have fibro, and you sounded like me)

this is based on my medical knowledge as well as my health
"The Walking Medical Mystery"

Too many Allergies / Too many RXs & DXs

A Rare Gem for Doctors and Guinee Pig
~Medical Caregiver and Doctors Worse Nightmare~

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1470
   Posted 1/17/2012 7:23 PM (GMT -6)   
Smurfy....

Please remember rule number 8 for future posting

8. If you are a medical professional, do not use the forums to distribute professional medical advice...

Thank you and I also hope you are having an okay week with your pain!
Amy
Lupus Moderater


dialysis from lupus nephritis

AngelinaATF
Regular Member


Date Joined Jan 2012
Total Posts : 135
   Posted 1/18/2012 12:05 PM (GMT -6)   
Dear N8bean,
There has to be a Dr that can get in somewhere near where u live. Have u tried Uregent care? Wherever u go, have a copy of your ANA & if they ask tell them the truth - that the other Dr made u uncomfortable & that u had to beg for the ANa test! So sorry I went thru same thing. Have u tried Naproxen for pain? That helped me a little!
Angelina
age 41
dx: MCTD(LUPUS), RAYNAUDS, FIBROMYALGIA, L4L5 disc herniation, fracture in L3 fro EPIDURAL in childbirth
meds: Arava, prednisone, NIFEDIPINE, estropipate, cyclobenzaprine, gabapentin, hydrocod (4BTP), fentanyl patch, methotrexate - MTX (on hold), minocycline, clonaxepam (sleep), vitamin D, B stress complex, PRILOSEC, Transderm-Scop (on hold)

n8bean
New Member


Date Joined Jan 2012
Total Posts : 3
   Posted 1/18/2012 6:21 PM (GMT -6)   
No angelina, I've called around, only one doctor within my network is accepting new patients and its a 6 week wait to be seen :( . Although I have been seeing the same ob for about 8 years so I am going to call them tomorrow to see if there is anything they can do for me while I wait. The urgent care in our area is very hesitant to give out any medication except for in a life threatening situation, I know because I work for the hospital associated w our urgent care. BLAH!0

AngelinaATF
Regular Member


Date Joined Jan 2012
Total Posts : 135
   Posted 1/19/2012 2:33 PM (GMT -6)   
Wow! Remind me of all this when we have to move again! I'm truly freaked out @ not being able to get my meds prescribed once we do!
Let me know what happens at ob appt! Good luck - hope they're compassionate!
Angelina
age 41
dx: MCTD(LUPUS), RAYNAUDS, FIBROMYALGIA, L4L5 disc herniation, fracture in L3 fro EPIDURAL in childbirth
meds: Arava, prednisone, NIFEDIPINE, estropipate, cyclobenzaprine, gabapentin, hydrocod (4BTP), fentanyl patch, methotrexate - MTX (on hold), minocycline, clonaxepam (sleep), vitamin D, B stress complex, PRILOSEC, Transderm-Scop (on hold)
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