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Posted 3/7/2009 3:03 AM (GMT 0)
Hello Everyone

Well, I had my latest rheumy visit tuesday and she had reveiwed my latest xrays...said I have ALOT of calcium deposits under my skin and some narrowing of my lower spinal cord. Oooo k. I also have a problem I forgot to discuss with her...if I spend any significant time on my feet(like walking the grocery store when there are no handicap carts available), I get horrible foot cramps. I take potassium (20 MEQ) twice a day, but whenever I leave the house I have to take a small bottle of vinegar with me--I literally have to drink it to stop the cramps. cry My acid reflux really loves that. And on top of that, for the last few days I have been having weak, shaky spells when I exert myself around the house. I would like to start walking for exercise but between the foot cramps and huffing and puffing like a 70 year old chain smoker I just don't see how. Btw, I am a 44 year old NON smoker.I try to walk in stores or around the yard but I have to stop frequently cause my heart feels like it's gonna come out of my chest-pounds so hard it takes 3-4 tries to get a blood pressure reading. Last visit to the cardiologist was good, the pericardial effusion has gotten smaller...so I don't think that's my problem. It's just so aggravating that I can't do so many things I used to and some days I HAVE to nap, something I haven't done since I was little. It's maddening to have to do a little, then have to sit down and rest then do a little more. oh well, I'll call my rheumy monday and bounce all this off on her and see what she says. Thanks for reading this, I just needed to vent to someone who might understand what I'm living with.

Hope this finds you all having a blessed day!  :-)

   Donna

Posted 3/7/2009 4:15 AM (GMT 0)
Hi Donna,

I'm sorry to hear you are feeling badly and from what I gathered are experiencing shortness of breath. Boy can I relate! I am 41 and also a non-smoker and dealing with the same issue. I have been complaining to my docs for about 7 months now about the issue. I go to the grocery store and feel as though I have run a marathon, it's just crazy.

You mentioned you have calcium deposits under your skin, has anyone done a chest x-ray to see if you possibly have deposits in your lungs as well? Reason I ask is I had a couple of x-rays that show "nodules" in my lungs, my doc referred me to a pulmonologist because of this and my shortness of breath and he seems to think these are calcium deposits caused by my lupus. I also have pulmonary thickening (scaring) caused by inflammation I get in my lungs and rib cage, so this is also adding to my shortness of breath. My docs have ordered a heart echo, my heart over all has checked out fairly well, I have a leaky valve, nothing major, but the one thing they are worried about is the hearts pressure, I guess the pressure where the blood is transferred between the lungs and the heart is high. Most likely because my lungs are struggling to move the air, which is making it harder to circulate the blood back to the heart. So, they are watching this and will check the pressure again in a couple of months. If it goes up again, then they will go in and check it via a heart cath to get a truer reading, if it is high that way, I will be diagnosed with pulmonary hypertension.

Long story I know, but it sounds like something you may want your doctors too look a little bit further into, as inflammation in the heart and lungs is quite common in lupus. So, you want to make sure all basis are covered.

I hope everything checks out fine for you!

Melissa

Posted 3/8/2009 3:10 AM (GMT 0)
Hi Melissa

Thanks for the information. I'm sorry to hear you have so much trouble with your heart and breathing. My docs are pretty good about keeping chest xrays and echoes current. I do have a pericardial effusion which has shrunk, and pericarditis (which I'm doing research on). Xrays haven't found calcium deposits in my lungs yet, just under my skin on my forearms and torso. There has been no mention of scarring around the heart and/or lungs but they do say my heart is enlarged with a slightly leaky valve. My blood pressure is always good despite bouts of irregular beats/skipping beats (not as much since I started the toprol). 

  Hopefully if I sound pitiful enough my doc will try to find a workable solution  tongue . We can only try.

Thanks again.

Donna

Posted 3/8/2009 4:42 PM (GMT 0)
Hi Donna,

 

Heart valve issues are really common in Lupus. I have mitral valve prolapse.  It's pretty much healed now, thanks to prednisone.

 

I also have horrendous foot pain! It just about sends me through the roof some days. I was diagnosed with Plantar Fasciitis in my left foot, and Metatarsalgia in the right.  NICE.  I got custom orthotics made and they seem to help quite a bit.  My foot issues are a result of my Fibromyalgia, not my Lupus. Interesting eh!

 

So understand what you're going through. You just want to say, "Stop! Give me a break already." One issue after another isn't it. I'm sorry you're in a limbo right now with so much on your plate to think about.  The puzzle pieces will come together.

 

Blessings,

Ginny

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