Discussions By Condition: Medical Stories

Lupus? RA? AIP? Or something else

Posted In: Medical Stories 3 Replies
  • Posted By: Anonymous
  • January 30, 2011
  • 03:47 AM

I've had frequent issues over the years with random aches and pains, nothing that i couldnt justify. However when i became pregnant with my second child, i had excruciating hip and back pain, that no one could figure a cause for other then pregnancy aches and pains (this pain started about a week after i tested positive at about 9 weeks pregnant). Fast forward to June 2010 when my daughter was born, she was delivered via C/S, i was on pain meds for a short time after i had her, within a week of coming off the pain meds, my joints started killing me, i brought it to my OB's attention at a 2 week check for my daughter, she told me it was just post partum aches. well a few weeks after that, my joints started to grind (i'm not talking a few, i'm talking all them) and i was also having issues with muscle weakness (or non-responsiveness from my muscles. i was taken to the ER, and was tested for Lupus, and told to follow up with my PCP, which i did, i was tested for RA, and MS through them. Here i am 5 months later, and the pain is worse then ever, i'm so frustrated, I dont know where to turn, who will actually look at me and try to figure this out. AIP didnt come up until recently, it was my last visit with my PCP before we moved, she told me, when we got settled and i got a new PCP to ask them about it. Everywhere i look it says its rare, i dont want to be looked at like i'm nuts. Tonight was the final straw for me, I fell, and fell hard, I need some help or at least some reassurance!
Thanks all.

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  • First place you are not alone. Many people have lupus. Please contact the Lupus Foundation for info. Yes you need to follow this up. Stay carm and see what needs to be done. you do need to be your own advisor in some way. Need to somewhat take control and get all medical records all times. I have the sister disease called Scleroderma I believe and still can't get a full diagnosis after 30 years. I might have lupus and scleroderma. Yes that is possible. You need to learn what you can about this and see if you really do have this. I have been to many doctors and my blood tests are neg. but told i could still have scleroderma and on top of this i was told i have a rare type of scleroderma called sine scleroderma. then also told my other doctors mctd which is scleroderma and lupus. then told crest then told no you can't skin to soft. then told don't have scleroderma then told have scleroderma and have to accept it then told undifferential disease. Just telling you this so you will realize you need to not go with everything the drs say and check out again to make sure and do have an input in what you believe should be done and taken and not just always just go along. get info on the results of your tests. and ask many questions. my drs just like to say all good not info directly and then i pull reports and it shows not all good. remember you are not alone also find out if there is a support group near you. That will be helpful really very helpful. I do go to a scleroderma group. we help each other out. very supportave to each other and give each other info and sometimes advise. take care hope this is helpful. A positive way of thinking will be great. My sister had scleroderma and was always positive and she was the strongest person I know.
    taras1 1 Replies
    • February 3, 2011
    • 01:32 PM
    • 0
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  • I've had frequent issues over the years with random aches and pains, nothing that i couldnt justify. However when i became pregnant with my second child, i had excruciating hip and back pain, that no one could figure a cause for other then pregnancy aches and pains (this pain started about a week after i tested positive at about 9 weeks pregnant). Fast forward to June 2010 when my daughter was born, she was delivered via C/S, i was on pain meds for a short time after i had her, within a week of coming off the pain meds, my joints started killing me, i brought it to my OB's attention at a 2 week check for my daughter, she told me it was just post partum aches. well a few weeks after that, my joints started to grind (i'm not talking a few, i'm talking all them) and i was also having issues with muscle weakness (or non-responsiveness from my muscles. i was taken to the ER, and was tested for Lupus, and told to follow up with my PCP, which i did, i was tested for RA, and MS through them. Here i am 5 months later, and the pain is worse then ever, i'm so frustrated, I dont know where to turn, who will actually look at me and try to figure this out. AIP didnt come up until recently, it was my last visit with my PCP before we moved, she told me, when we got settled and i got a new PCP to ask them about it. Everywhere i look it says its rare, i dont want to be looked at like i'm nuts. Tonight was the final straw for me, I fell, and fell hard, I need some help or at least some reassurance! Thanks all.Have you been tested for HLA-B27? Are you either RH-Negative yourself or from an Rh Negative Family? Have you been tested for Ankylosing Spondylitis? All of these conditions are related to my research. Please Google " Rh Negative Autoimmune" to find my site. I am not sure if I can post the link, but you can contact me through my site. Jessica
    thefarrellfam 46 Replies
    • February 26, 2011
    • 08:51 AM
    • 0
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  • I've had frequent issues over the years with random aches and pains, nothing that i couldnt justify. However when i became pregnant with my second child, i had excruciating hip and back pain, that no one could figure a cause for other then pregnancy aches and pains (this pain started about a week after i tested positive at about 9 weeks pregnant). Fast forward to June 2010 when my daughter was born, she was delivered via C/S, i was on pain meds for a short time after i had her, within a week of coming off the pain meds, my joints started killing me, i brought it to my OB's attention at a 2 week check for my daughter, she told me it was just post partum aches. well a few weeks after that, my joints started to grind (i'm not talking a few, i'm talking all them) and i was also having issues with muscle weakness (or non-responsiveness from my muscles. i was taken to the ER, and was tested for Lupus, and told to follow up with my PCP, which i did, i was tested for RA, and MS through them. Here i am 5 months later, and the pain is worse then ever, i'm so frustrated, I dont know where to turn, who will actually look at me and try to figure this out. AIP didnt come up until recently, it was my last visit with my PCP before we moved, she told me, when we got settled and i got a new PCP to ask them about it. Everywhere i look it says its rare, i dont want to be looked at like i'm nuts. Tonight was the final straw for me, I fell, and fell hard, I need some help or at least some reassurance! Thanks all.It can take years for the anti-DNA antibodies, which are specific to lupus, to show up in blood work. I don't know whether the blood tests for RA and MS also take a while to show anything out of the ordinary. However, lupus is most often diagnosed in women of child-bearing age, so you do fit that profile. I hope it isn't that, because it sucks (I've had lupus for 25 years) but it's not the worst diagnosis in the world. I hope your PCP can get you to the appropriate specialist so you can get to the bottom of this and start treatment. The worst part is not knowing.
    Anonymous 42789 Replies Flag this Response
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