Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
Hi! My Name Is Carla And I Am Wondering If I Have This Disease. I Have To Start Out By Saying From The Time I Was 17 Every Summer I Would Get These Red Itchy Bumps On My Knuckles And Elbows the Sun Brought Them Out. I Feel Like I Can Write A Book But I Will Keep This As Short As Possible. LastSpring I Started With Muscle Spasms Then A Few Weeks Later Tingling And Numbness My Arms And LegsWould Fall Asleep Very Easily. Then My Joints Started To Really Hurt. I Would Wake Up In The Morning Really Stiff. By Late Spring My ThIghs Felt So WeAk. My TricepS Hurt So Bad I Couldnt Shampoo My Hair At Times Or Fold Laundry. My Arms Would Shake After Carrying In Groceries From Fatigue. I Couldnt Even Push My Stroller At Times. I Was Tested For Ms Spinal Tap Was Negative. I Had Ana Which Tested Positive For Smith Rnp Antibody Which IS Positive For Lupus
. And My Complements Were Slightly Off. My Doctor Told Me That She Would Not Diagnose Me With Lupus Because My Organs Were Not Being Affected. I Showed No Inflamation Through Blood Work. And My Kidney And Liver Functions Were Normal. As Summer Ended I Was In So Much Pain My Muscles Were So Weak. My Cuticles Were Split I Ended Up With Two SoreS On My Cuticles That Got Infected And The Lines On The Tip Of My Fingers Were Almost Black.As Summer Passed And I Was Mostly Inside Because I Cant Tolerate Being cold And My Symptoms Got Much Better. But Now Spring Is Here And Im Outside Again And My Symptoms Are Acting Up Again. My Doctor Had Never Mentioned This Disease I Came Across It Myself. Does AnyonE Have Problems With Arms And Legs Falling Asleep Easily? Or Muscle Spasms. It Freaks Me Out! I Feel Like My Doctor Thinks I'm Crazy. Sorry This Is So LonG!
. And My Complements Were Slightly Off. My Doctor Told Me That She Would Not Diagnose Me With Lupus Because My Organs Were Not Being Affected. I Showed No Inflamation Through Blood Work. And My Kidney And Liver Functions Were Normal. As Summer Ended I Was In So Much Pain My Muscles Were So Weak. My Cuticles Were Split I Ended Up With Two SoreS On My Cuticles That Got Infected And The Lines On The Tip Of My Fingers Were Almost Black.As Summer Passed And I Was Mostly Inside Because I Cant Tolerate Being cold And My Symptoms Got Much Better. But Now Spring Is Here And Im Outside Again And My Symptoms Are Acting Up Again. My Doctor Had Never Mentioned This Disease I Came Across It Myself. Does AnyonE Have Problems With Arms And Legs Falling Asleep Easily? Or Muscle Spasms. It Freaks Me Out! I Feel Like My Doctor Thinks I'm Crazy. Sorry This Is So LonG!
Are you on any medication? There are many different kinds of myositis and DM/PM are auto immune, so the ANA goes along with that. Have you had a myositis pannel? blood tests. I also had skin biopsies that diagnosed mine.
Hang in there, most of us find diagnosis the hardest part. Mine was caught by a very savy dermatologist, but that is not always the case.
Major medical centers with Myositis clinics are usually the best. Stanford has a DM clinic. John Hopkins, Mayo are among the best...
Good luck and keep seeking answers. The Myositis Association has great info and some doctors on the board from all over. that is a good place to start. Free to join, but many of us donate to them, they do the most funding of research!!!
All the best, Shawna
As Shawna mentioned, be sure to check out The Myositis Association website. That site has a lot of good articles, information, and recent research on myositis.
To answer your questions about arms & legs falling asleep easily or muscle spasms, I do not have these issues. My medications have been successful in providing muscular strength. I have big inflammation issues. I did have severe weakness in my arms and legs in my first year with DM. My skin redness is not bad at all because my meds control this problem too.
Good luck and keep us posted!
Tingling, numbness and legs falling asleep are very familiar. Carrying something even light with arm in same position causes cramping for me. Does that happen with you? I changed primary care physician because the first did not have a clue. A good Doc familiar with these types of diseases is rare based upon my experience and my insurance does not like to refer to specialists. I finally have an appointment with a rheumatologist in June and I am not sure what to expect. My primary is an internist and he has taken time to learn quite a bit. If your doctor thinks you are crazy get a new one is my recommendation.
http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnaffects.aspx?articleid=2322&zoneid=526