joint pain following HELLP

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Expand view Topic review: joint pain following HELLP

Re: joint pain following HELLP

Post by lkw787 » Tue Jul 03, 2012 11:22 am

Thank you for the link. I will look at it. I am doing exercise (mostly swim aerobics, also some yoga) and free weights. The insurance has cut off my PT, which makes me sad as I felt I was getting a benefit out of it. However, I am trying to keep up as much exercise as I can on my own.

Sincerely,

Lisa

Re: joint pain following HELLP

Post by tree » Sun Apr 22, 2012 08:18 am

Hi Lisa,
Welcome to the forum. I am sorry to hear about your brutal bout with HELLP. You must be incredibly tough to have survived that.
I am not very familiar with APA, but I know we have a few posters on here who have it. This is a really old thread, and you might get some more responses if you want to start new one. It sounds reasonable to wonder about some sort of autoimmune condition causing joint pain if you already have an autoimmune issue. We have had posters test positive for rheumatoid arthritis. I have been tested for it a few times because I have joint pain, but my results have always been negative. Your situation is fairly unique since you were immobilized for such a long time and had a very long rehab period. It sounds like you are doing really smart things to battle the osteoporosis and deal with the joint pain. I wish I had better suggestions for you.
This recent thread discusses a little bit about bone loss after being on Lovenox. I will keep looking for info and post if I can find something. I hope you can get this figured out. Does your PT have any thoughts on it? They are often good sources of information on joint pain since they deal with it more than most doctors.
http://www.preeclampsia.org/forum/viewt ... ne#p345691

Re: joint pain following HELLP? Need advice

Post by lkw787 » Sun Apr 22, 2012 04:05 am

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.

Sincerely,

Lisa

Re : joint pain following HELLP

Post by jgrumet » Sat Nov 29, 2008 03:00 am

I had joint pain as well. It is getting better now, but my tailbone pain is still lingering. I started getting my tailbone pain about a year before i got pregnant, though.

I also have TMJ... So I feel kind of a mess myself.

I was reading that inflammation may cause PE?

Re : joint pain following HELLP

Post by allypatt2 » Thu Nov 20, 2008 09:31 am

Thanks for your input....I have the tailbone pain as well. It takes me about 20 seconds to straighten myself into a standing position after sitting for a while. I certainly hope this gets better with time. Boy, I feel like I am getting old fast!!!!

Re : joint pain following HELLP

Post by heather j » Wed Nov 19, 2008 09:58 am

My experience was very much like Catherine's in that it was more pronounced following my HELLP pregnancy (I sort of attributed that to the prolonged bedrest though). My problems were mostly in my knees and somewhat in my hips. To this day, I can't ride in a car for an extended amount of time without very uncomfortable tailbone pain. Pregnancy, even in the best circumstances, can do a number on us physically, I guess. Absent the tailbone and car riding issues, my knees and hips are fine now, and I exercise pretty regular on an elliptical trainer and take a combo tai chi/yoga class that has really helped in general with all that good stuff!

Nice to have you posting!

Re : joint pain following HELLP

Post by allypatt2 » Wed Nov 19, 2008 09:20 am

Thanks, Catherine. You have hit the nail on the head as far as my symptoms go....really bad if I am immobile for any length of time. If I squat down for 30 seconds it is as if my knees have locked! I do hope this is temporary as I am feeling like a pretty old 34 year old! Thanks again for the encouragement that it should get better.

Re : joint pain following HELLP

Post by allypatt2 » Wed Nov 19, 2008 09:17 am

Thanks so much, funnily enough, I have been diagnosed with ocular migraines which I think are the same thing as silent migraines. I will most likely see a PT to see if something needs to be shifted back into place....Oh what our bodies go through!! Thanks again.
quote:
Originally posted by Kara

Have you consulted a physical therapist (perhaps you work with one?) or a chiropractor? Could be a pinched nerve, misaligned something that is still "off" after the pregnancy. Things shift and relax when we are pregnant and they don't always go back into place. If that doesn't help, perhaps see about a neurology consult.

I had a neurology consult for the same things you are experiencing, but I had them prior to pregnancy. Neurologist confirmed lack of sensation in toes, and other things btu couldn't really tie it to anything except "silent migraine", which would be on the rare side.

I don't know of any scientific ties to HELLP, though. Good luck and please let me know if you find out anything.

And welcome to the boards! Hope baby is doing really well!

Re : joint pain following HELLP

Post by catherine » Wed Nov 19, 2008 09:13 am

Hi and welcome.

I'm wondering if your joint pain is most pronounced in the mornings or at any time when you have been pretty immobile? I ask because I experienced similar issues, both with my HELLP pregnancy and the subsequent one. We finally figured out that it was most likely a combination of the natural relaxation of the ligaments and tendons naturally experienced during pregnancy combined with the super-swelling of the post-preeclampsia phase. I could hardly walk around first thing in the morning for about a year after Lucy was born, then it finally went away, only to return at the end of my subsequent pregnancy. That time the effect was less pronounced and didn't last as long... making me think that my issues were an exaggerated version of a normal pregnancy-associated phenomenon. My mom has quite severe arthritis in her spine and is a couple of years out from double knee replacements so I can assure you that I was really worried at the time. Absent a clear issue, you may be just like me... unfortunate! If so, all I can offer is that it is likely to continue to improve over time, the more you do, the more you will improve. I take ballet recreationally and it's about the only thing that I think is keeping me limber at the advanced age of 42.. gack!!

Re : joint pain following HELLP

Post by kara » Wed Nov 19, 2008 09:07 am

Have you consulted a physical therapist (perhaps you work with one?) or a chiropractor? Could be a pinched nerve, misaligned something that is still "off" after the pregnancy. Things shift and relax when we are pregnant and they don't always go back into place. If that doesn't help, perhaps see about a neurology consult.

I had a neurology consult for the same things you are experiencing, but I had them prior to pregnancy. Neurologist confirmed lack of sensation in toes, and other things btu couldn't really tie it to anything except "silent migraine", which would be on the rare side.

I don't know of any scientific ties to HELLP, though. Good luck and please let me know if you find out anything.

And welcome to the boards! Hope baby is doing really well!

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