Posted 01 November 2006 - 12:40 PM
I have been feeling good recently, my hands have straightened out and the skin is normal. I havent had pain or muscle weakness.
That is until three weeks ago. I developed hay fever, and then a sinus infection which was painful and gross. As soon as the hay fever started I was fatigued and could hardly move, now my hand are stiff and sore and the skin is splitting.
I have been experiencing an irregular heartbeat for the past week and half. Yesterday it started to get worse and it is making me feel so weak. I get big thuds in my chest and then light headed.
My lung function tests have been getting worse but apparently the CT is OK.
I am going to see the rheumatologist on Monday, but I am thinking I should see the general practitioner sooner, just in case. I tried doing breathing exercises but I end up with pain in my upper chest and my breathing becomes even weaker.
I tell you this disease takes the confidence right out from under me. Its very confusing, usually I would just keep soldiering on trying to stay positive, but with this disease we need to be concious of even the smallest problem just in case it is a warning sign.
Thanks for letting me whinge,
Posted 01 November 2006 - 01:25 PM
I would encourage you to see your doctor sooner. In 2003 I had been experiencing an irregular heartbeat for a while. I had also noticed that my heart rate was higher than normal. When I went to the doctor they found that my pulse was 160 and an EKG showed that I was in atrial fibrillation. I was sent by ambulance to the emergency room, and ended up staying in the hospital for 5 days.
I was lucky because they were able to restore normal heart rhythm with medication. I am still on medication to prevent the irregular hearbeat.
Updated 8/10/07: Mixed Connective Tissue Disease (dx 03/2002). Diffuse Scleroderma, Dermatomyositis.
Posted 01 November 2006 - 01:51 PM
Please l;isten to scleroguy. others and myself when I say GO SEE YOUR doctor! This is not normal and a serious condition. Your heart is nothing to ignore no matter what the CT shows. There is a problem and it lies somewhere. IF you can't see the general practitioner then get to a hospital right away. Waiting another day can be too late. I have angina since being diagnosed and it it gets worse sometimes. I take precautions but there are times when it hits me and I think, "okay what is it now." The last time it happened I didn't see the doctor about it and I paid for it in the end. But not again. I will do something about it if and when it happens again because it will, in due time.
Keep us posted.
ISN Book P.R. Coordinator for the U.S.
International Scleroderma Network
Posted 01 November 2006 - 02:54 PM
So many times, I read people's posts and I am amazed that I have been going through the same kinds of problems.
I also have had problems with my heart. I had that same kind of hard pounding for no reason at all. It would beat at 125 per minute just lying down. I also had really severe chest pain in 2004/05. Nothing was done about it even though one of the cardiac markers came back positive. Only now, two years later am I waiting to see a cardiologist. Still, it doesn't solve any problems I've been having with my breathing or neurological problems--even the lump on my thyroid has been cast off. It's there but the biopsy they said was non-diagnostic.
Sometimes I get severe pain in the centre of my chest now and I just clench my teeth bend over and try and breath. There is nothing else I can do. I've been through the medical system and I'm not being heard.
I hope you have a good doctor who will properly address your problems. Don't let things go on. Make sure that you feel comfortable with the care you are getting and that things aren't passed over.
Posted 01 November 2006 - 06:12 PM
Ditto - You need to go see a doctor and ask for an EKG. When you have irregular heartbeats, the EKG will identify it and actually identify the type and extent. We do have a section on scleroderma cardiac involvement if you want to do some reading.
Only about 15% of scleroderma patients get cardiac involvement, but it is certainly something that needs to be recognized and dealt with ASAP before it goes too far. I couldn't get any doctors to listen to my symptoms and by the time I insisted on an EKG, I was in complete heart block and ended up with a pacemaker the next day. Of course, that's completely different symptoms than yours in that my heart rate was a steady 35 bpm. I now have atrial fibrillations which is the fast heart rate and the pounding, but it's being well controlled with medication and my pacemaker so the old ticker is working just fine. I get an EKG every 4 months just to make sure.
You may able to walk into the cardiology department and ask for an EKG. Onen at the clinic I use. Let us know what you find out. We'll be thinking of you.
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International Scleroderma Network (ISN)