Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Scleroderma And Tachycardia


  • Please log in to reply
12 replies to this topic

#1 Denelle

Denelle

    Senior Bronze Member

  • Members
  • PipPipPip
  • 50 posts

Posted 29 November 2007 - 04:00 PM

Hello,

I went to the ER today because I am consistently short of breath with exertion and have a heart rate of around 130. They did labs, chest X-ray, EKG, and CT and found no cause. They didn't do a heart echo because they didn't feel it was emergent.

I left very angry, because I am struggling to do daily activities and no one seems to know why. Has anyone else experienced anything like this? Or if you haven't, care to cheer me up B) .

Thanks,
Denelle

#2 eah

eah

    Senior Bronze Member

  • Members
  • PipPipPip
  • 42 posts

Posted 29 November 2007 - 06:06 PM

DENELLE,

I also get very short of breath with exertion. I also have a very high heart rate. Sometimes, resting it goes over 120. I see a cardiologist and pulmonologist regularly to keep an eye on everything. I have some very mild lung fibrosis.

EH
ANN

#3 summer

summer

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 522 posts

Posted 29 November 2007 - 06:37 PM

Hi Denelle,
Your story sounds just like how mine started nearly 12 months ago. I have Limited/Crest Scleroderma which was diagnosed nearly 1 year ago. My symptoms also sent me to the E.R also, all the tests they did on me was normal. About 4 months ago my rheumatologist sent me to see a Cardiologist, who diagnosed Tachycardia. Mine would come in bouts though, lasting anywhere from weeks to hours. The SoB is horrible, it has now become normal for me to feel like this.

I had a Stress/Echo a few months ago and only lasted 5 minutes on the treadmill as my heartrate shot up to the 170's. My Cardiologist diagnosed Tachycardia and has prescribed me Atenolol to slow the heart rate down. This has helped some but I probably still need to increase the dose as it still can be in the 90's to 100's.

Try and not to stress out about this as it does you no good, it will only exacerbate all of your symptoms. Have you been referred to a Rheumatologist yet?.
Please see a doctor and get the answers you deserve, I seem to have forgot what I was going to write(it must be brain fog) :blink: :blink: .
Anyway take care and try not to worry. I'm sure others will chime in soon.

Celia

#4 Kim T

Kim T

    Bronze Member

  • Members
  • PipPip
  • 29 posts
  • Location:Bend Oregon

Posted 29 November 2007 - 07:09 PM

I don't know if this would help anyone else but I have always had the fast heart rate. Hard to fall asleep when your heart rate is over 100. An new doctor tested my blood vitamin D level. It was quite low. Taking 1000 mg of Vit D (over the counter) and Cacitriol (a different form of Vit. D) slowed my heart rate. It was my most obvious side effect.

PS Low Vitamin D levels have been associated with scleroderma so it might be worth testing.

Kim

#5 Denelle

Denelle

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 50 posts

Posted 29 November 2007 - 07:27 PM

Hi,

I do have an appt with a cardiologist who specializes in collagen/vascular disorders. The reason I got so mad is that... well, it isn't for 2 weeks. I have so much to do and I am wasted any time I try to do anything. Shopping - For an hour and a half - I think we went to 6 stores and I sat down 6 times! It is ridiculous to have live like this!!!!!!!!!!!!!!!!!!!!!!!!!!! (I left the ER very mad) (And I still might be a little mad :angry: )

Thanks for listening,
Denelle

#6 LisaBulman

LisaBulman

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,135 posts
  • Location:Massachusetts

Posted 30 November 2007 - 02:49 AM

Hi Dennelle,
I have tachycardia and interstitial lung disease. The tachycardia never made me out of breath, it just made me black out! I went in and had a cardiac ablation and I have been fine ever since. There were 15 spots in my heart that was mis-firing signals so I was a mess. Now I am short of breath because of the ild. Have you had any pulmonary tests done? I go through bouts where I can't breathe at all, all day long. This happened in October and I was in the hospital for a few days because of it. If you havn't had the breathing tests done, it might be a good idea.

Please let us know what happens at your appointment.

Hugs,
Lisa
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#7 CraigR

CraigR

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 438 posts
  • Location:Escondido (near San Diego), Ca

Posted 30 November 2007 - 07:49 AM

Two things that I would want to know when looking into this:

Red blood count. If you are anemic, your heart rate tends to rise.

Lung testing. You would want to have thorough testing in this area to see if there is any influence. Of course, most of us with scleroderma get this done because it is such a problem.

Craig

#8 Denelle

Denelle

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 50 posts

Posted 30 November 2007 - 08:12 AM

Hi,

Thanks for all the advice. I do see a pulmonologist and have mild fibrosis. I was on cyclophosphamide for 5 months a year ago. Things got better after that, but now I have gotten worse. I'm sure y'all can relate to how frustrating this is - not knowing, and feeling awful.

Thanks again,
Denelle



#9 LisaBulman

LisaBulman

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,135 posts
  • Location:Massachusetts

Posted 30 November 2007 - 08:28 AM

Hi Denelle,
It's me again. I was on cyclophosphamide from Feb '06-June '06. I felt great after it. No breathing problems at all until this past October. Maybe you need another pft and CT scan to see if there are any changes. My fibrosis has spread a little and my dr believes that might be the cause of my sob now.

Hang in there.....

Lisa


Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#10 KristenS

KristenS

    Bronze Member

  • Members
  • PipPip
  • 18 posts
  • Location:Maryland

Posted 30 November 2007 - 09:18 AM

Hi Denelle,
I understand completely how you feel. I have the same feeling at times with the heart beating extremely fast. I have had test after test run and to no avail. It has been diagnosed as Tachycardia but it never shows up anywhere! But let me tell you it is so highly annoying to lying in bed and not be able to sleep because you swear your heart is going to pound out of your chest or stop altogether! I hate it. I remember the first time I said something, it was to the nurse at the school where I worked and she was a real doozie anyway. She looked at me like I had 3 heads asking her if she could hear that! As if!
Take care, you aren't alone!
Kristen
I hope that your day goes well and you don't have any worries.

#11 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 30 November 2007 - 10:20 AM

I was diagnosed with Tachycardia prior to having sclero. I was on heart meds for awhile and then went off. I continue to have problems off and on with it, but nothing regular. It's always at night which is so frustrating, cause you can't sleep!

Anyway, just wanted to share that you are not alone!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#12 lizzie

lizzie

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 497 posts
  • Location: UK

Posted 30 November 2007 - 12:04 PM

IT dioes seem that tachycrdia is realted to SSc. Like Sweet I had tachycardia prior to diagnosis with SSc- in fact it was the cardiologist who referred me to the rheumatologist because of my cold hands and splinter haemorrhages. I still have tachycardia which is a problem at night , sometimes have problems getting to sleep and also I sometimes wake up in the night with a racing heart (must be having very exciting dreams!). I don't know whether the tachycardia is actually worse at night or if its just because during the day we are so busy that it is less noticeable.
Lizzie

#13 tmgilbertpt

tmgilbertpt

    Bronze Member

  • Members
  • PipPip
  • 23 posts

Posted 01 December 2007 - 01:44 PM

Hello everyone,

This was my same exact question about 2 months ago. Back in September I was hospitalized for tachycardia, heart rate at 130 with doing absolutely nothing. I underwent numerous EKG's, blood work, angiogram for left and right heart catherization. My pulmonary artery pressure was found to be slightly elevated, indicated minimal pulmonary artery hypertension. Both my cardiologist and pulmonary doctor refused to believe that this was the cause of my increased heart rate. But I strongly disagreed, fought with both of them and my pulmonary MD agreed to start treatment with Bosentan. I have been on this for about a month now and my heart rate has come down to the 90's and I am feeling better with energy and less fatigue. I no longer have chest pain and palpitations. I have been previously treated with oral cyclophosphamide x 1 year and IV cyclophosphamide x 6 months for interstitial lung disease. As the others suggested I would demand EKG, echo of heart, pulmonary function test, CT scan of lungs if these have not already been done. Don't take no for an answer.
good luck, Tammy