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CREST w/weird symptoms

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#1 Wohali


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Posted 03 November 2008 - 04:27 PM

Hi, I'm new here, but not new to CREST. I was diagnosed about 5 years ago though in the early 1990's I *think* I did have a positive ANA but I was young and invincible and never paid attention to what doctors said back then.

My ANA titer seems to bounce around at one point being as high as something like 1:2650. Stress seems to make the illness flare and I am under tremendous stress :blink: having been laid off from a job I had ten years then fired from two new jobs. :blink:

Anyways in the past 2 weeks I have had severe pain in my ribs. It kinda feels like something is swollen on the inside and is pushing against the inside of my ribcage. I am tender to touch from the top of my ribcage to bottom and also all over abdomen. The doctor thinks it might be CREST and thinks maybe the ribs are calcifying. Chest x-ray showed strange shadow over right lung and pain is mostly on right side. He did the usual dozen or so blood tests for autoimmune but haven't gotten those back. Doctor put me on new pain pills and sent me home. I'm concerned something more should be done, but what? Anyone else ever had severe ribcage pain from CREST?

PS: Also the doctor noted I have otherwise unexplained finger joint pain, sore throat and two odd rashes that appeared right before the rib pain so thinks its all CREST.


#2 janey


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Posted 03 November 2008 - 06:28 PM

Welcome Wohali,
Sorry to read that you are having such severe chest pain. What kind of doctor are you seeing? Is your doctor a rheumatologist or even better, a scleroderma specialist? You really need to be seeing someone that knows a lot about scleroderma. I'm certainly no doctor, but treating chest pain with pain killers seems kind of strange. What's being done about the x-ray results? Where is your doctor going next to find out what that shadow is?

One thing that many of us have learned is that you have to push doctors sometimes to get results. If your doctor doesn't want to be pushed, then you might have to change and get a new doctor. I don't have CREST, nor have I had severe chest pain, so I can speak from any personal experience. I can however say that when one of my doctor kept ignoring an on-going symptom, I switched doctors and now that symptom no long exists.

So hang in there and keep working with your doctor to make sure he hears you and treats you right. Please continue to let us know how you are doing.

Big Hugs,
Janey Willis
ISN Support Specialist
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International Scleroderma Network (ISN)

#3 smurfette


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Posted 03 November 2008 - 08:44 PM

I have CREST and it is a very complex disease. Everyone of us with the disease has very different symptoms. I do have crushing chest pains frequently, but those pains are caused by esophageal spasms. Those pains go through to my back. They are not skeletal. I do have some shadowing on one of my lungs and that does show up on an x-ray. I also have severe pain if I touch between my ribs. That is where the esophagus joins the stomach.
So, based o the above some of the location of your pain sounds similar - however the bone pain is different. If you are not seeing a doctor who specializes in CREST and autoimmune diseases you need to change doctors. It sounds like the pains you are feeling can be from a lot of different things and you need a work up to find out the cause. If the pain is all over your chest it could be related to CREST, but you need to give a history to a doctor who knows about the disease. You probably need an endoscopy to see if the pain involves your esophagus - it can feel like your whole upper body is on fire. I feel chest pressure when I am having a flare. As I said we all feel different when we are under attack. CREST testing is more than a blood test.
Certainly all the increased stress in your life can bring on a flare and all the symptoms that you are experiencing now are rearing their ugly heads because you are so stressed that they are having a field day with you. Why not - your defenses are down when you are most stressed. I would first thing get to a specialist and see about a round of tests to stop the chest pains - they will want to rule out cardiac involvement. I am surprised that you did not mention having that ruled out already. In this day and age with malpractice premiums what they are I would assume that no doctor would have let you pass through without a complete cardiac work up just to cover their bottom! Considering you have been complaining of chest pains that is the first thing that must be ruled out. Giving you pain pills and not ruling out angina, etc is the height of stupidity at the very least.
I hope that you get a resolution to your pains and are no longer suffering. Feel better!

Chocolate, It isn't just for breakfast anymore!

#4 nan


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Posted 04 November 2008 - 02:30 AM

I too have CREST. I have chest pains, but it is related to GERD. I think you have gotten great advice from the others. You need to see a rheumatologist, preferably one that specializes in scleroderma. Good Luck!


#5 Wohali


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Posted 11 November 2008 - 06:02 PM

Hi Smurfette,

Actually I have had a cardio workup and am being followed for cardiac problems. Though I had to demand my dr send me to a cardio. The first one I went to told me it was all in my head even though I have a friend who is an osteopath and another who was trained as EMT and both witnessed me on the floor having PVCs and heart palps. The first cardiologist didn't that had occurred. A year later I started having severe chest pain and my dr sent me to a different cardiologist who found a slight murmur and very high heartrate. I ended up being put on a calcium channel blocker to lower the heartrate and also it treats the Raynauds (makes the hands and feet feel a little warmer).

Last month that cardiologist found I now have mild pulmonary hypertension and am suppose to see him in Dec for another echocardiogram.