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Regular Member

Date Joined Nov 2008
Total Posts : 51
   Posted 11/20/2008 2:55 PM (GMT -6)   
I wanted to introduce myself. I have never been a member of a health related board till two days ago.

My name is Lynn and I am 42 years old. Life seemed fine until fall of 2002.

I noticed that my hands did not work right anymore. My fingers were stiff and my hand fatigued easily. Painful to take notes in class (I was going back to school and it was my last semester -- was 36 at the time). It was hard to put change in the meter and I got weird numb or burning patches on the backs of my hands.
Then the leg fatigue started and my hips felt they were in the sockets wrong and I was getting weird muscle twitches (little fasciculations I think) all over. It was unnerving. Then the buzzing on my legs here and there. I freaked and started going to doctors who thought it was stress. Went to a shrink who said it was not stress and suggested lyme d disease. She even ordered tests. They came back positive. So I had 3 weeks of doxy. No difference. Time went on and my fatigue got worse and worse and slowly one by one or rather two by two as its always symmetrical, my joints started to hurt. First my wrists, then elbows, then knuckles, then ankles, then shoulders, then hips, then knees....

Some are much worse than others. Its very hard to sleep. My arms and legs go numb easily if I sleep wrong. The mornings are horrid. My fingers catch when I open and close them in the night and morning. Forget about holding a paint brush or cutting up food. I can type, but that is starting to hurt which is bad since I do that for a living. The pinking side corners of my hands get really sore down by the wrist. Ouch! I have "basal joint arthritis" in my thumbs and have had surgery on my left hand for it. A little better now, but not great. Trying to braid my hair is do anything that needs muscle stamina causes horrible burning in my muscles. Walking up stairs is difficult as my quads just burn with pain.

I never have anything swollen or red joints, but I do get a malar rash when tired or hot of stresses of if I drink any wine. I also break out in hives in the sun. I have an occasional positive ANA.

By 2007 I was on tramadol and was diagnosed with fibro (no tender points in the right places).

Then I got pregnant and began running fevers of 100 that would not go away, I thought I was dying, worst I have EVER felt and everyday I wanted to off myself. The doctors checked for cardiolypiin antibodies -- very positive. It was around then I miscarried. We have repeated the cardiolypin test 2 more times, always positive. They say I need to be on a blood thinner if I can get pregnant again and at that point I was diagnosed with lupus. Predisone makes my pain levels go way down, but makes my blood pressure go way up.

I am now moving and will need new doctors and I am worried. I do not want to start over. I am thinking of keeping my DC doctors to avoid this. Sigh, hard to see them when living in San Jose, CA! Anyway, my story in a nutshell!

Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 11/20/2008 3:11 PM (GMT -6)   
Lynn, I am thankful you found healingwell! Welcome to the forum. I'm so sorry for everything you've been through. It is amazing whar people go through before they are diagnosed. Maybe in the future it wont be that way. I hope you find an awesome doc that you are comfortable with in Cali! God bless you, Judy

Regular Member

Date Joined Nov 2006
Total Posts : 491
   Posted 11/20/2008 3:49 PM (GMT -6)   
Wow we could be twins. Have you read any of my posts??? VERY similiar

33 yr old female
 GERD dx March 2007
Migraines with Aura
SYMPTOMS  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. 
New as of Aug-muscle twitching throughout my bod NONSTOP DAILY EVERYWHERE. 
 TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH T3 -Too many to list -all CLEAR
 Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 11/20/2008 3:50 PM (GMT -6)   
Thanks for sharing Lynn . . . two things come to mind. MAKE SURE to follow up with a Lyme specialist and not just a doctor or rheumy. And I would make sure you don't have polymyositis. That 'could' account for the burning pain and weakness in your upper arms and upper legs. I would just want to rule it out so you know exactly what your dealing with.

I hope some of the others have some good ideas too.

Some hot tea for you!!


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Regular Member

Date Joined Nov 2008
Total Posts : 51
   Posted 11/20/2008 5:12 PM (GMT -6)   
King1234, I have not read too many posts at this point. Just getting started. Funny that my tests were from Igenix too. IGM, no IGG.
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