anyone have tips on living with chronic chest pain (not heart related)

[disney212]

I have received much support and tips for the Disboards. I wish to thank you all and I am again seeking your advice. I am under medical care so I am no asking in lieu of seeing a doctor. What I have isn't common I am told, so I am seeking advice from others who may have experienced similar symptoms. I have a lung disease that causes chronic chest pain. I am told it mimics a heart attack. I can no longer lay down as it causes severe pain. I am going back to the doctor today to try to find another medicine that may work. I tried elevating my bed, a wedge pillow, I don't eat or drink 4 hours prior to bed but nothing works. I do have Gerd but had a scope last week and the gastro said all is fine there. I had ANOTHER cardiac workup (had everything but a catheter test and the cardiologist is convinced it is not my heart and I didn't need to be put through the catheter test - sorry I can't remember what it is called). After ruling out Gerd and my heart the docs think it is my lung causing the chest pain(two lung surgeries already).

How do you keep from worrying every time it gets really bad that you are having a heart attack. How do you learn to sleep sitting up (right now I am in a recliner but find it very hard to sleep). How do you function at work on almost no sleep. Have you found anything to relieve your pain. When I get this pain I am completely calm and my doctors have actually been in the room when I have this pain, they say it is not a panic attack and I agree. The only symptoms I have are chest pains, left arm numbness and shortness of breath (now you can see why it worries me). I am sick of running to the ER or doctor every week (it is also EXPENSIVE) to only be told it is my lung issue and released with no treatment. As my conditions worsens my pain worsens, I see two lung specialist in 15 days but I need to figure a way to get through the next 15 days! Any tips, advice, tricks that I don't know. (I have had this condition for 3 years it was diagnosed 1 year ago and I had 2 surgeries, after treatment was ineffective so I am back at the starting block.)

 

[Somer]

I'm sorry to hear about that! I'm not sure if I can help at all but my daughter also has chronic chest pain, has to sleep on a wedge,ect. She does have heart&lung issues but the pain for her is apparently caused by arrhythmias and LOTS of scar tissue and as she grows, the scar tissue causes severe pain(she's had 5 heart surgeries) This issue has been a real struggle with lots of hospital/ER time and very scary. My advise would be to make sure you have at least on friend, or someone, who will listen to you vent..its so frustrating! Keep taking the pain seriously and keep pushing the drs to get to the bottom of it. One thing that has helped for my DD is when she is having bad pain they put her on an ibriprophin schedule, like an certain dosage 4xs a day for a week, and it can break the pain cycle.
Take care!

 

[disney212]

I'm sorry to hear about that! I'm not sure if I can help at all but my daughter also has chronic chest pain, has to sleep on a wedge,ect. She does have heart&lung issues but the pain for her is apparently caused by arrhythmias and LOTS of scar tissue and as she grows, the scar tissue causes severe pain(she's had 5 heart surgeries) This issue has been a real struggle with lots of hospital/ER time and very scary. My advise would be to make sure you have at least on friend, or someone, who will listen to you vent..its so frustrating! Keep taking the pain seriously and keep pushing the drs to get to the bottom of it. One thing that has helped for my DD is when she is having bad pain they put her on an ibriprophin schedule, like an certain dosage 4xs a day for a week, and it can break the pain cycle.
Take care!

sorry to hear about your daughter, I can't image if one of my kids were going through this, I will keep her in my thoughts and prayers. I just returned from the doctor and they also think mine is caused by scar tissue from numerous surgeries. I can't take ibuprofen or NASID's due to having Crohn's disease.
I am the "mom" so I try not to let folks know I have pain, I know it sounds weird but my mom has passed so my whole family counts on me (dad, brother, and my DH and kids). I do try to take care of myself but I don't want them to worry with something that can't be "fixed". I have no problem saying no to them but don't want them to worry when there is nothing they can do, there is nothing I hate more than someone "doting" on me.

Keep us updated with your daughter and hopefully she will make a full recovery.

 

[berryinDC]

I'm so sorry that you're going through this! After surgery last year I had a lot of trouble sleeping upright and dealing with the pain. I found meditation to help a lot, both with distracting me from the pain enough to fall asleep in an uncomfortable position AND to help me recharge during the day when I was exhausted. I checked out some guided meditation CDs from the library and would listen to them in bed or for 5 minute breaks during the day. That way, even if I was in too much pain to sleep much, I still felt like I was getting some downtime.

 

[Cassandy]

I don't know if this will be any help at all because we still don't know why this happens to me (we think it's pleurisy but there's some interior inflammation too), but I hope so.

But I've got an outbreak going on right now, and I really find that lots of heat is helping at least a bit, to relax the muscles (I go through 4-6 hot pads a day), warm liquids that also relax muscles on the way down. I use a CPAP and sleeping meds at night, and that's what gets me sleeping (CPAP is great, because then I can sleep at 20 - 45 degree angles on most nights, instead of sitting up), but on bad nights where the pain is worst I have a prescription for an opioid pain reliever. I take prescription NSAIDS round the clock.

I also use my CPAP during the day when it's bad, because then it gives my lungs a break, and usually makes most of the pain go away while I'm on it.

I also take extra breathing treatments too (I'm sure you already take as much as you can), just to make it easier for my lungs.

But mostly it's just hot pads, tea, hot pads, tea, taking lots of breaks, and doing work sitting down.

I get through it by trusting that it will get better, and by living my life anyway, and knowing I'm of value to my family not for the work that I do but for the person I am.

I really hope you feel better soon!! Good luck!

 

[scooby9932]

I have received much support and tips for the Disboards. I wish to thank you all and I am again seeking your advice. I am under medical care so I am no asking in lieu of seeing a doctor. What I have isn't common I am told, so I am seeking advice from others who may have experienced similar symptoms. I have a lung disease that causes chronic chest pain. I am told it mimics a heart attack. I can no longer lay down as it causes severe pain. I am going back to the doctor today to try to find another medicine that may work. I tried elevating my bed, a wedge pillow, I don't eat or drink 4 hours prior to bed but nothing works. I do have Gerd but had a scope last week and the gastro said all is fine there. I had ANOTHER cardiac workup (had everything but a catheter test and the cardiologist is convinced it is not my heart and I didn't need to be put through the catheter test - sorry I can't remember what it is called). After ruling out Gerd and my heart the docs think it is my lung causing the chest pain(two lung surgeries already).

How do you keep from worrying every time it gets really bad that you are having a heart attack. How do you learn to sleep sitting up (right now I am in a recliner but find it very hard to sleep). How do you function at work on almost no sleep. Have you found anything to relieve your pain. When I get this pain I am completely calm and my doctors have actually been in the room when I have this pain, they say it is not a panic attack and I agree. The only symptoms I have are chest pains, left arm numbness and shortness of breath (now you can see why it worries me). I am sick of running to the ER or doctor every week (it is also EXPENSIVE) to only be told it is my lung issue and released with no treatment. As my conditions worsens my pain worsens, I see two lung specialist in 15 days but I need to figure a way to get through the next 15 days! Any tips, advice, tricks that I don't know. (I have had this condition for 3 years it was diagnosed 1 year ago and I had 2 surgeries, after treatment was ineffective so I am back at the starting block.)

I am so sorry you're going through this. I know how it feels to be worried about your heart when your symptoms so closely match a heart attack. With Lupus, there is something called costochondritis that mimics a heart attack. Both my daughter & I suffer from this & it IS scary. She & I have both endured hours in an ER, multitudes of tests, only to be sent home with no answers. It can be so frustrating. I don't know what your lung condition is, but I do hope you're able to find the answers you need. And soon.

Have you tried elevating the head of your bed? They sell some devices that go between your mattress & box springs that will raise the head of your bed so you're not just balancing on a wedge. I find that when I try to use the wedge, I wake up having pushed it away in my sleep. I finally found a recliner (an old Barcalounger wingchair one at Goodwill of all places) that is not too soft and it has been a lifesaver. I find I just cannot sleep in one of those big, smushy recliners that you sink into. Maybe shop around a bit to find one that works for you? I got mine for only $60!

Also, don't be afraid to use the pain medicine your doctor prescribes. There is a stigma about pain meds, but don't let that stop you from getting on a schedule that works for you. It's so much easier if you keep on top of pain instead of chasing it once you're in the middle of it.

I hope you find the answers you need & that you get some relief soon.

I'm sorry to hear about that! I'm not sure if I can help at all but my daughter also has chronic chest pain, has to sleep on a wedge,ect. She does have heart&lung issues but the pain for her is apparently caused by arrhythmias and LOTS of scar tissue and as she grows, the scar tissue causes severe pain(she's had 5 heart surgeries) This issue has been a real struggle with lots of hospital/ER time and very scary. My advise would be to make sure you have at least on friend, or someone, who will listen to you vent..its so frustrating! Keep taking the pain seriously and keep pushing the drs to get to the bottom of it. One thing that has helped for my DD is when she is having bad pain they put her on an ibriprophin schedule, like an certain dosage 4xs a day for a week, and it can break the pain cycle.
Take care!

I just had to comment that my daughter's name is Somer. It's not often I see that name & I noticed it right away. I'm so sorry to hear about the problems your DD has been having. As a mother it's so hard to watch our children suffer. I will keep her & you in my prayers.

I'm so sorry that you're going through this! After surgery last year I had a lot of trouble sleeping upright and dealing with the pain. I found meditation to help a lot, both with distracting me from the pain enough to fall asleep in an uncomfortable position AND to help me recharge during the day when I was exhausted. I checked out some guided meditation CDs from the library and would listen to them in bed or for 5 minute breaks during the day. That way, even if I was in too much pain to sleep much, I still felt like I was getting some downtime.

This is really good advice. Those meditation cd's work well for deep relaxation & pain relief. Something I discovered while in the hospital for 3 weeks last month - apps for my smartphone that have binaural (brain wave) programs for different things. One of them is deep sleep. There are others for pain control, muscle spasms, etc. It REALLY works! I was having so much trouble getting any sleep at all (hospitals are really bad about this!) and these programs made it easier to fall asleep & stay asleep. If you have an iPhone, the name of the apps are:Brainwave (best one for deep sleep) - I think it cost $1.99 and AmbiScience 100 Beats & Tones - I think this one was free.

I don't know if this will be any help at all because we still don't know why this happens to me (we think it's pleurisy but there's some interior inflammation too), but I hope so.

But I've got an outbreak going on right now, and I really find that lots of heat is helping at least a bit, to relax the muscles (I go through 4-6 hot pads a day), warm liquids that also relax muscles on the way down. I use a CPAP and sleeping meds at night, and that's what gets me sleeping (CPAP is great, because then I can sleep at 20 - 45 degree angles on most nights, instead of sitting up), but on bad nights where the pain is worst I have a prescription for an opioid pain reliever. I take prescription NSAIDS round the clock.

I also use my CPAP during the day when it's bad, because then it gives my lungs a break, and usually makes most of the pain go away while I'm on it.

I also take extra breathing treatments too (I'm sure you already take as much as you can), just to make it easier for my lungs.

But mostly it's just hot pads, tea, hot pads, tea, taking lots of breaks, and doing work sitting down.

I get through it by trusting that it will get better, and by living my life anyway, and knowing I'm of value to my family not for the work that I do but for the person I am.

I really hope you feel better soon!! Good luck!

I have Lupus, which causes pleurisy & inflammation. Have you been tested for Lupus? If not, you might want to get tested. It is worth a look. There are so many people who have it, but doctors don't tend to look for it as they're unfortunately not very familiar with the disease. Pleurisy is VERY painful! I have found that when it begins (the rasping sound you hear is the lining rubbing against each other) is when it is most painful. Once the liquid builds up from all the rubbing, the pain lessens but the ability to take good breaths drops dramatically. The old elephant on the chest feeling comes into play. I've had to have several thoracentesis procedures to drain the liquid as my lungs have started to collapse from the build up of liquid. Please pay close attention to your symptoms & if you feel that darned elephant, don't delay in getting in to see a doctor! Infections can also cause pleurisy. Antibiotics are usually given as a precaution just in case.

Aren't CPAPs wonderful? I, too, have found that using my CPAP even when just resting has helped tremendously. I have lung scarring from radiation therapy for metastatic cancer. This makes breathing a challenge on occasion & though my CPAP was for sleep apnea, it has helped when I'm having difficulty breathing for other reasons as well.

OP - the advice about warm compresses & drinking warm liquids is spot on. It really relaxes the muscles around the lungs & allows for deeper breaths & pain reduction.

I hope you find the answers you need. It's beyond frustrating to have symptoms that mimic other things & not know how to distinguish one from the other. Keep up your positive spirit. Lean on people around you - not easy for us "Mom" types, I know. Find someone you can vent to. I wish you all the best.

 

[Cassandy]

I have Lupus, which causes pleurisy & inflammation. Have you been tested for Lupus? If not, you might want to get tested. It is worth a look.

I've been tested a few times, but have never come up ANA positive. Right now it's an 'undifferentiated autoimmune disorder'. We'll make a diagnosis eventually of something, but I got sick of it being my life. You know? As long as I can still do my job as a mom and a wife, I'm cool with not knowing why I get sick, only if I can get 'better enough'.

Aren't CPAPs wonderful? I, too, have found that using my CPAP even when just resting has helped tremendously. I have lung scarring from radiation therapy for metastatic cancer. This makes breathing a challenge on occasion & though my CPAP was for sleep apnea, it has helped when I'm having difficulty breathing for other reasons as well.

Same!! Totally same. I love my CPAP. It's kept me out of the hospital more times than I can count. Best. Machine. Evar.

OT, How are you feeling now? I hope you feel better and supported We are here for you!

 

[disney212]

Thank you, I will try the warm compresses. I do find that sitting by a hot shower with the door closed until the bathroom steams up really helps! I have my appointment next week so not too much longer to wait.