Needing Help

I'm a 25 year old female and I have been having issues since I was 13 years old for my menstrual cycles. When I was 16 my family found out that my Aunt on my maternal side had Lupus. So all of the females went and got tested. It also turned out that my Grandmother on my maternal side also had Lupus. Since then I have faithfully gotten re-tested every year. Which every year it comes out negative.When I was 18 I had gotten pregnant and miscarried and found out that I have a horned uterus. When I was 19 my family doctor told me that I had arthritis but he did not blood test. I had come in complaining about my ankles which at the time where bright red and twice the size and really painful...I could barely walk. Since the age of 18 I have dealt with years of pain. Missed cycled which last year I found the most amazing OB/GYN who diagnosed me with having P.C.O.S. That has been a god sent to say the least to finally be getting treatment for that part. But I'm still having issues of being in pain.
I wake up sometimes in the middle of the night screaming because my legs, shoulders, back and arms are numb or feeling like they are on fire and I can't move them. I have gone several times to the ER due to swelling to the point I can't move and when I do..all I do is cry. They run alot of tests on me and everything keeps coming back normal...so they just give me pain medicine and send me about my way..still with no answers as to what is causing it.
When it rains or there is a change in the weather...I can really tell. I walk hunched over, things pop and crack..I'm 25 years old..this should not be happening.  It gets so frustrating when I try to hold things and they just slip out of my hands or when I go to the bathroom to have a bowel movement in my time in the bathroom my legs are numb...I don't know what else to do...The OB/GYN tests me every year Lupus and nothing...
Pain medicine doesn't even begin to touch the pain or make it manageable to  carry on with daily activities. anti-inflammatory medicine does nothing. I'm at my wits end. I feel like a broken record and like I'm going crazy when I go to the doctors and tell him once again that I'm in pain...so all he does is looks at me funny like I'm nuts and have lab work done and sends me about my way..nothing more..
When I went to him a couple of months ago with a lump of discolored skin on my leg and told him that I had it there for awhile and I wanted it tested because it doesn't matter what I put on it, it hasn't gone away or changed color...his response to me was to put cortizone on it and come back in a week and have him check it....I have made several appointments since then and when he looks at it, he refuses to biopsy it...says it doesn't look bad and to just leave it alone.What do I do?

[karajo]

Hi and welcome to MedHelp.

The one advice I would give you is to spend some time in the sun prior to them testing your ANA.  I'm assuming that's the test they are doing???

There are 11 criteria for a lupus diagnosis.  One needs 4.  Educate yourself on these.  A positive ANA is simply one of the 11 needed for a dx.  I know my joints hurt for years before I knew something serious was wrong with me.  But they never swelled.  Another thought is, you have Rheumatoid arthritis and it hasn't shown up in your lab.  Have they checked for that?  

We are here for you to give you support and encouragement.

Keep us posted.
God bless, Kara ~

[Lauren38]

Hello,

Are all of your symptoms worse around your period?  If so, try getting the bloodwork done when you are on your period and after sun exposure.  Also, if you don't like your doctor, maybe you should consider going to a different doctor.  Have you seen a Rheumatologist?  I find my Lupus always is worse just before and during my period.  I have used natural progesterone cream which made me feel about 70% better overall.  If you find your symptoms are worse around your period, progesterone is worth considering.  Do you have other symptoms that are on the list of Lupus symptoms, such as the redness on the nose and cheeks?  Have they ever mentioned MS?

Don't take progesterone in pill form.  Some warnings you may see are about a different form of the hormone called progestin. Progestin has cancer risk, not natural progesterone cream. I am a chiropractor and have done a lot of research on this. You can get the cream on-line from discount on-line vitamin stores.  If I give any specific names on this forum, they get edited out.  The web-site I get it from starts with an L and I pay about $20 for a 4 oz bottle.  The brand starts with a P.  Don't use the "Now" brand, it doesn't work as well.  Dr. Lee, an MD, wrote a book about menopause and progesterone cream.  I know you are only 25, but the book gives specific info on what brands are good, the miligram amounts to use, and how.  I started using it in my 20's as well.  I have used it for 10 years now.  I apply it from day 15-26 of my period.  Day 1 is the first day of your period.  You must be REGULAR with it if you start using it.  It takes up to 4 months to take full effect.  Apply to stomach and breasts at night and on inner thighs in the morning from day 15-26.  Only use it on those days of your cycle.

I also take Glucosamine chondroitin with MSM which is great for arthritis. Don't take if you are allergic to shell fish.  Liquid form is the best.  I take Salmon oil capsules 2,000 mg daily.  

I hope this helps you.
Lauren