What is Pulmonary Embolism
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation an...
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I've been in treatment with Coumadin for over 90 days now for over 20 PE's. Here are things I want to know but the docs aren't really helping with:
I still have chest pain, and sometimes it is pretty bad. I've been told that is normal and to expect it for a few months; I've been told that it shouldn't hurt this bad now that I'm in treatment. There is so much conflicting information from doctors that I am lost. At what point is the pain something irregular that I should be seen for it? Anxiety attacks and weird cold sweats? MENTAL FOG?! I seriously have a impossible time concentrating. Is this the coumadin, a normal PE thing? I still have shortness of breath and when I mention this to the doctors, they look at me like I am crazy. Is this not "normal" then? What am I supposed to take for pain? Tylenol really doesn't work. Last, I have fibro. Tylenol doesn't work for fibro and I got denied pain meds because my doctor wouldn't listen to me. Yes, I'm getting a new doctor, but in the meantime here is the problem: The chest pain from the PE's will trigger fibro pain. I think. Does anyone else have fibro and PE's? Have you noticed a difference? Thanks, Sterling Posted on 09/17/09, 05:09 pm |
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I had my PE in March and still have pain sometimes. I also have fibro and no nothing seems to help much. The doctors have given me Tramadol which I think helps some.
How long since your PE... I still have foggy days but it is getting better with time but I find I am scatterbrained at times and have trouble organizing my thoughts and actions at times. Which is sometimes difficult at work., I really don't have SOB very often now only when I am very tired and am still pushing myself. I have learned to try and slow down when I get like that. Hope this helps. 
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I am about 45 days out from my PE diagnosis. July 30th was the day. wow, it seems so much longer than that, that I completely misjudged the time. Only 45 days....I think I have lived a lifetime in these past 45 days!
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SS,
Chest pain comes and goes along with SOB (for some) even after the clots have resolved. One of the joys of DVT/PE is there is no standard scenario and there is lots of variability between individual experiences. My PE clots cleared 2 week ago, leg not at all(yet) and last weekend I was wheezing like a (insert your metaphor here) just walking up a flight of stairs! When do I go to the doctor?, great question - in the early days, more often, until you know how your body is reacting and when you have a baseline and some trust in reading your body and the doctor's advice, less often. Since most of us missed the initial signs and almost weren't here to share, we would probably tell you err on the side of caution! Anxiety - YES, but this place is GOLD and you can share info/questions and lots of AMAZING folks will listen and share back, it really does help! Mental FOG - coumadin, oh my yes! Some days I can't remember my kids names (especially when yelling, sorry I mean instructing). You know, "HEY YOU!! DO YOUR HOMEWORK!!" hahahaha SOB isn't normal in my opinion, but I have been advised everything from an "Oh really?" to a stern "Hmmmmm?", from the variety of 4 doctors I currently see. Pain meds - tough, but nothing except (2 reg strength) Tylenol unless you talk to your doctor!! EVERYTHING interacts with coumadin. I hope you feel better soon, it does seem to improve for us eventually, but in the interim you have lots of ears to listen. -P
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Yes coumadin was really bad for me on the brain fog.... I would talk and pause and not have a clue what i was talking about or what i had already told..... some people were patient and would let me repeat myself over and over and others not so much
As far as the pain yeah after just a month and a half i didn't feel any better. It took months and still 2 years later i occassionally get chest pain and SOB every time I work out they are now saying i have asthma.... As far as the chest pain I was told to seek "help" if it changed in any way. I was always having chest pressure even a year out adn there wasn't any concern bc all of the test on my heart had come back fine and it wasn't another pe so they told me if it changed to let them know. It wasn't until I casually mentioned it to my new primary care that he sent me to a specialist and I jsut got lucky I was in a flare up and they found out it was my lungs. Any ways, if in doubt call your doctor!
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BTW yes you need to get a new doctor there are pain meds you can take with coumadin that dont affect it.
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20 pes and they tell you take frigging tylenol? I am on vicoden and it barely touches my pain! They shoudl have no problem giving you pain meds after a pe. Also, yes the brain fog is horrendous. I was calling people the wrong names , feeling so spacey, forgetting things my friends told me,etc. It is the coumadin, you are not going nuts, but mine was so bad I thought I had some type of stroke even, I did not thank god! health to you!
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Hi. I got fibro after my PE. It sucks that you can't take anything but tylenol for pain. I used tramadol for a while until I became allergic to it-now it makes me itch like crazy. Definitely get a new Doc. A lot of people on here have had to do that. Good luck to you -I hope your pain starts to subside. Blessings, Teri
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