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Sclero and chest pain


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#1 smac0719

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Posted 05 April 2008 - 12:51 PM

:( Hello. It's been a while since I've been out here, but I needed some support from those who understand. I have been having a pain in my chest for a couple of weeks that no one in the medical profession can seem to figure out. It is a sudden, strong pain (not sharp) that feels deep within and seems to travel from my back. As quickly as it comes it goes away, but when it occurs it stops me dead in my tracks from whatever I'm doing at the moment. My primary physician was so concerend due to the Sclero that she sent me to the ER for testing and they admitted me. I'd had a full cardiac work-up in the fall (echo, ekg, carotid ultrasound and PET scan) due to palpitations, sharp chest pain and dizziness. From that I was told I just have a premature heart beat. Eliminating caffeine seemed to reduce the palpitations drastically. Due to this recent work-up they did not perform any heart related tests outside of an EKG (although I was hooked up to a heart monitor the whole time). I was in the hospital for 3 days and had an x-ray & CT of the chest, endoscopy, ultrasound of the liver and galbladder and tons of bloodwork. I was discharged yesterday by my primary, cardiologist, pulmonologist & gastroenterologist (although he wants to do a colonoscopy next week) no better off than I was when I was admitted and still have the pain. Any thoughts????

On another note, there are some insensitive people working in the medical profession. Several of the nurses and techs while in the hospital upon hearing I have Sclero gave me such pitiful comments such as "oh my, you're so young to have that" or "has it affected your organs yet?". At first I didn't respond at all because I was so surprised, but then I started telling them to do some research on it and take a sensitivity class (that was the day I'd been poked for the 4th time so I was a little on edge ;) )
I may have Scleroderma, but Scleroderma doesn't have me!

#2 relicmom1

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Posted 05 April 2008 - 02:22 PM

Hey, I wanted to let you know that you aren't alone with the chest pain issue. Last April (the 16th, same as the VaTech masssacre) I went to the ER with excrutiating chest pain. I was admitted and had testing done that day and the next. I have severe esophageal and stomach involvement due to sclero. The concensus was the pain I was having was caused by esophaeal spasms. I had just had an upper endo and dilatation the week before. I still occasionally get the chest pains, and they can be scary ! I do have many risk factors for heart disease (family history, high cholesterol, high blood pressure, rapid heart rate, sleep apnea, diabetes, sky high C-reactive protein) so I do get nervous when Ihave the chest pains. Even though I know that it is most likely the esophageal spasms, I still do not ignore the chest pains and neither should you.
Peace :)
Barbara aka relicmom1

#3 Guest_SADIE_*

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Posted 05 April 2008 - 02:26 PM

Smac, I'm so sorry to hear about this. I hope you'll soon feel better. I get that chest pain too. It goes in my back and sometimes the pain gets up to my jaw and neck. That is a very scarey thing to go through. I went to the ER one time for it and they said it probably was related to my lungs since I have scarring and my chest wall doesn't expand well. spell? Do you have lung problems? I also have that Mitral Valve Prolaspe so I'm sure that makes it worse.

Sadie

#4 Snowbird

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Posted 05 April 2008 - 02:28 PM

Hi Smac0719

I'm sorry, I don't have any insight to help with your question. I really wish I could help you with some thoughts on that. It sounds like you had a strong team of doctors that tried to find an answer for you but unfortunately, they were not able to locate the problem. Is the colonoscopy the last stop? Did they give you anything to help with the pain? I do hope you feel better quickly, I know that can be a really scary feeling for you with that constantly happening.

On your second note, however, cutto's to you!!! You're so bang on, you made me laugh, literally :lol:. Your answer was both great and classic!! We can only hope they do both, I know, yeah right, not likely going to happen! :rolleyes:

Keep us updated!
Sending good wishes your way!

#5 Margaret

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Posted 05 April 2008 - 03:04 PM

Hi ,

Gareth had horrible chest pains when he first started with symptoms. Since his lung X-rays and heart were 'normal' the rheumatologist *thought* it was from his restrictive lung disease brought on by fibrosis. The way it was explained to me is that the tighter the fibrosis becomes, the harder it is to take a deep breathe due to pain, but because your body is telling you to breath in deeper, the fibrosis pulls at the chest walls. The gastro doctor told me he thought the pain was from esophageal spasms and put him on nitro pills when it was really painful. Gareth said they did help him. Just two ideas to consider.

Take care, Everyone.
Margaret

#6 smac0719

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Posted 05 April 2008 - 03:38 PM

I'm asthmatic but that's the extent of my lung problems. Due to the changes in our weather (I'm a Florida girl) and the high pollen activity I first thought the pain was due to that. I've had pleurisy before so I thought maybe that was occuring again, but I remember the pain from pleurisy to have been a little sharper and it hurt when I breathed. This pain comes without rhyme or reason. I will ask my gastro about esophogeal spasms. Thanks!!
I may have Scleroderma, but Scleroderma doesn't have me!

#7 smac0719

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Posted 05 April 2008 - 03:41 PM

If the colonoscopy doesn't show anything I hope it's not the last stop. That's the last thing my gastro mentioned though. I see both my gastro and my primary this week as a follow-up. I also see a rheumatologist at UMSC University MEdical Center of South Carolina) so I am going to fax him the reports and things from the hospital to see what he can suggest. Thanks for the input!!
I may have Scleroderma, but Scleroderma doesn't have me!

#8 truman

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Posted 05 April 2008 - 06:07 PM

I just recently had that chest pain. It was for over four days. Virtually couldn't breathe with constant pain. Only prescription pain medication will lessen it. Wow, another consideration; I just assumed it was lifting as I've been completely inert since October.

Hopefully this won't be a constant symptom.

Linda
Tru

It is what it is...........

#9 lizzie

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Posted 05 April 2008 - 10:37 PM

I have been getting chest pain recently, I thought it was probably GI related but the doctors checked my heart to make sure. it wasn't that. As heart tests were OK we decided that I was probably right and doubled the dose of the PPI (proton pump inhibitor) I am taking. The chest pain has disappeared.
Lizzie

#10 Peggy

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Posted 06 April 2008 - 04:27 AM

I am so sorry you had to go through all of that and still end up having to continue to suffer with it. I haven't had that but it looks like from other posts that you have gotten here that this may in fact be something sclero does. I am really glad you put them in their place and I am with you when you say nurses need "sensitivty" training. I had a terrible time when my Mom was dying in the hospital and I ended up talking with the hospital administrator and told him that he needed to provide exactly what you said "sensitivity training" as my Mom couldn't have been the first person dying in his hospital and his nurses were terrible.

I hope you continue to get some answers. Don't give up and stay on them until they come up with a definite answer that makes sense.

Take care and warm hugs,

Peggy