View Full Version : I have been away for a while........

06-16-2008, 10:12 AM
I just needed to check in. it has been so long since I popped in to say HI! and to check the boards.

In the past few months I have had this dark cloud over me that I can not get away from.

I was on cellcept and got really sick (temp of 104 and such). Then broke my foot and had to have surgery to get plates and screws. Then I had heart surgery to have a hole closed. I have a small stoke from that one, they told me that it may happen. since the stoke, I have been having seizures. all kinds of new meds and feeling really tired. I am not sure if it is the meds or the Lupus that is doing it. O'Yeah!!!! I got my MASK!!! O the joy!!! :shock:

I have been getting pains in my back that are like a buring sensation and that wrap around to the front of my chest and belly. some times they are at the shoulder and other times, like last night at 3:10 am!!! they are lower. right above my hips. they hurt sooooo bad. I try not to cry, but it is very hard. I have been taking skelaxin 800mg, but it does not seem to help. oyeah----I had the highest ever sedimation results for my self. 74. anyone else been that high?

06-16-2008, 03:52 PM
It has been a while since we've heard from you. I am so sorry that you've been dealing with so much and a stroke on top of everything else. The pain in your back could be so many things - you kidneys, you lungs, inflammation. I would suggest that you talk to your doctor about the pain so that you can find out exactly what it is. I'm sorry that I can't be a bit more helpful :cry:
Please let us know what your doctor says. I hope you start to feel better soon and, as you know, we will always be here for you!

Peace and Blessings

06-17-2008, 04:05 AM
I am wondering if you are taking any NSAIDs for inflamation. That is a really high SED rate. I know mine was high and I at times have the same type of pain. My Rheumatologist told me that it is due to inflamation. I also have SLE and have had it most of my life. I am just wondering. I hope that you get to feeling better. God Bless


06-17-2008, 06:14 AM
I am not on any anti-inflammatories. That is the one thing that I dont have. I guess because I am on cellcept, the rheumy did not give me anything. My hair is also falling out by the hand fulls. I think that bothers me the most. between the hair loss and the mask, I really dont even want to go out of the house.

06-17-2008, 08:01 AM
Hi lornak,
My gosh - thats ALOT of health issues in such a short time span. Listen, I am NO doctor, so PLEASE take this from where its coming from. The pain you describe - the wrapping around on different levels of your torso - that sounds exactly like what is called an MS "hug". Now, I am in NO WAY saying you have MS, but that is a very common symptom of those with MS. However, MS symptoms also overlap with lupus symptoms - both autoimmune - so Im sure its inflammation and/or related to the many things that have gone on with you physically in the past few months.
I suffer from seizures as well, and sometimes it takes a while to get the correct combo of meds to both keeep your seizures at bay, and not have you feeling too many side effects.
I hope you continue in your recovery, and have a much less complicated year ahead of you. God Bless...

06-17-2008, 05:10 PM
okay guys, get this......

spoke to the rhuemy today and because of the high SED rate on the last test, they believe it is a flare. now this is the WIERD part.....

my esophagus is inflamed from the top of my throat down to my stomach :shock: I know that was NOT one of the things that I was told about in any of my office visits. this really sucks!!! hurts to eat and drink and never mind taking pills :cry:

thanks for everyone's input. I just wanted to share what I found out so if someone else gets the same thing, this may push them in the right direction.