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Don't Know Where to Turn

Aug 12, 2015 5:24 PM

Hi all.

Brief background:
Since I was a little girl my knees have always popped when I bent down. Sometimes they would hurt for a couple of days. But doctors said nothing was wrong. In 2007, I was pregnant with my daughter and my legs would hurt so bad that I couldn't get out of bed. One doctor said it was due to the weight gain from pregnancy. Other said it was an old sport injury, though I repeatly told him that I have never been injured. I was given knee braces, which help was much as a ace bandage. I have a very very low tolerance for cold because I'm anemic. In the past four years the pain, weakness, and burning sensation that was in my knees are now in my elbows, calves, hips, thighs, knuckles, wrists, toes, and shoulders. My primary says nothing is wrong and that I'm not in any pain. I found an bone specialist because I thought maybe I had arthritis ( which my mother and grandmother had). Test came back negative for arthritis but positive for tier 1 lupus. He also determined that my kneecaps were out of alignment on both legs. And supposed to refer my to a local rheumatologist. I had arthroscopic laternal knee surgery June 29. Also have constant pressure and pain in my lower back. MRI shows narrowing around spine in places and spondylothis. Saw a pain management doctor yesterday. Along with my back problems, I was told my blood pressure was up (154/108), I have bursitis, and my hips aren't up to par. Received a cortisone injection in my hip. Sever pain all yesterday in all my problematic areas and less today.

Some days are better than others. But most of the time I go weeks dealing with pain, foggy mind, and exhaustion.

I have been given tramadols, Tylenol 3, Tylenol 4, and a muscle relaxer. None of this has help stop the pain. At best, if pain is not 4 or more, it may knock the edge off. Most have groggy effect.

Most days I have to decide between slightly less pain and grogginess or pain and trying to make the best out of it.

Is the lupus?
Any advice, tips, or suggestions will be greatly appreciate.


Aug 13, 2015 1:13 PM

Confusedmom, A rheumy doc is definitely who you need to be under with lupus. They do more precise inflammation blood tests that can rule it in our out, along with pointing towards other autoimmune diseases. Once you have one you are prone to get another. If you've had any xrays or CT/MRIs anywhere, for however long you've been hurting, take the printed reports with you to the rheumy doc appt.

I started out decades ago with degenerative disc disease, osteoarthritis, chondromalacia of the patella on my left knee, and multiple spine disc problems. I've had 2 surgeries on my neck and needed a third but the risks are greater than benefits so unless I'm on the verge of paralyzing or life/death issues it's a no go. I began with fibromyalgia about 7 years ago. I had major surgery in '10 to remove a large inflammatory cyst and my health has continued downhill with inflammation based illnesses, like hypothyroidism, and sjogrens. I also have IBS, another inflammatory disease. I'm under a rheumy doc and she's been wonderful compared to my PCP, who has blown off everything as, "well you're getting older now. I'm also under a endocrine doc too, and my PCP ate crow at my last visit.

If you aren't sure or feel your doc isn't informative enough, get a second or even third opinion. You'll find many here have done so, myself included. I hope you can find a really caring doc to help you with your pain. My daily average is at a 3-4 level most days because of my rheumy doc, who put me on Plaquenil. The med has helped with other pain issues too. Good luck and you'll be in my prayers! 🙏🌼

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