Again, I am new to this diagnosis of EM, but is it common that serious ankle, knee, and hip pain accompany EM. I can hardly get up because of the combination of the feet pain with the ankle, knee, and hip pain. They don't swell, just a lot of pain. Most of the day is barely walking or somewhat with a cane (but that hurts my hands, setting off a flare in my hands).
Anyway, does this reflect anyone else's experience or research?
Thanks as always, Don (dazsa)
I am this way with my knuckles, wrists, elbows, and toes! I’m 32 and it began at age 28. I was initially treated for rheumatoid arthritis bc that is what this seems like. My dr believes it is related to EM. Iam not totally sure bc the pain is different from the burning, searing, red hot pain…
Does this sound like you?
God bless you,
Very much so. I have been treated for RA but the treatments did not work, so I guess it might have something to do with the EM. Before I was diagnose with Em, the doctors would just ignore the severe pain I have in my ankles, knees, and hips. It is in my hands but not as severe. I pray that you get the relief you need.
Prayers for you as well. It definitely sounds similar. Many meds they tried were unsuccessful, but I did respond well to methotrexate injections and remix add infusions every four weeks. I never was ever completely better, though, and I had major complications in my immune system, so I had to stop treatment bc it began killing me at that point. We are wondering if it was a coincidence that I did have some relief or what bc that wouldn’t match up w EM. And there is no doubt I have EM… May I ask how old you are? Just curious bc of the joint pain.
Have you found any relief w any meds?
God bless you, Jenny
Well, I am old (58), but I did not have joint problems before three years ago. One neurologist thought I had an autoimmune disease and put me on a series of immunoglobulin infusions (6 over about a year) which helped for a very short time but the infusions really knocked me out (and VERY expensive). I have never had any measurable relief with NSAIDS or RA medications. So, my immune system is involved in some way and maybe it is for all of us EMers.
58 isn’t old! Your story sounds exactly like mine!!
I wonder what immunoglobulin treatments you had? How often did you receive them?
They were Intravenous immunoglobulin (IVIG) and I received them 5 days week (4-5 hours each) every month for four months and the every other month for about 2 months.