by lkw787 (16 Posts), Sun Apr 22, 2012 04:05 pm
About two years post-HELLP Syndrome that ruptured my liver, gave me a stroke and put me in a coma for four weeks I am now experiencing joint pain and stiffness. Bad all day. I am taking naproset and doing PT and starting weight training (per the advice of my GP who diagnosed me with osteoporosis after a bone density test) but I'm wondering if rather than osteoporosis (which my Mom who is 70 has and says causes her no joint pain whatsoever) I have another condition, possibly immune system related.
My story: I came down with the worst class of HELLP Syndrome two days after ceasing lovenox (a blood thinner) injections that I'd put myself on at the advice of an RI and an RE after I suffered three fetal demises at the end of the first trimester (after two good u/s with h/b.) Though the experts all said such losses are "always chromosomal" I didn't believe them (especially since I had a "fetal tissue analysis" done on the last pregnancy and it came back "XX Normal" and then at the advice of my therapist (whose help I sought to deal with the grief and who had herself suffered repeat pg losses) I consulted an RI and when he seemed rather eccentric and his long list of tests expensive, took his list to my RE (in whose care I'd lost two of the pgs). My RE said, "I'd suggest testing you for APA, ANA and NK Count." When I came up positive for APA with elevated NK Count he said, "If you get pregnant again I recommend you take low dose prednisone daily during the first trimester to suppress your NK Count and to treat the APA that you inject lovenox." He did NOT say that testing positive meant that I should not try to carry a pg, merely that if I were lucky enough to get pregnant again I should take these meds. I am convinced that had I not injected lovenox my DD would not be here now, especially since HELLP struck so quickly after ceasing lovenox and my pregnancy had been otherwise picture perfect/very easy.
When HELLP struck I needed $11,000 in blood transfusions over two days, brain surgery, 6 weeks in ICU hooked up to a respirator, ventilator and a feeding tube, and when I emerged from the coma, 18 months of cognitive and physical therapies in multiple hospitals and rehab facilities. Of course I'm thrilled that my daughter and I survived, that I had such amazing care and that my daughter is very healthy. However, I would like help with the joint pain issue that has shown up 18 months post HELLP and increased in recent months. At my GP's advice I am starting weight training, continuing swim aerobics (my normal exercise routine),adding doses of calcium, vitamin D and fish oil to my diet. But if anyone has other ideas for tests I should get run or supplements to take I'm all ears.
Thanks ahead of time.