Pulmonary Embolism Support Group

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 and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.

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neuropathic pain

kate37
kate37
Hi All

I had multiple PEs 3 years ago now and during the first year this site this was invaluable in the help and support everyone gives each other and you can nearly always find someone who has had /is having any of the problems you may run into.

So heres one for you all and I wonder if anyone has been diagnosed with neuropathic pain post PE?

I have always had a degree of pain following my PEs, but in the past year it has got to the point where it has completely taken over my life :-( I have constant pain over my right lung which also feels 'heavy' and at times radiates to the back and down my right arm.

I have had numerous investigation including tests for gall stones and renal stones/colic.

I have got some light at the end of the tunnel as after many A and E trips and a number of different conultants I finally got an appointment with a chronic pain specialist.

He explained that occasionally the nerves that do things 'automatically' like those which control breathing,for some reason (and scar tissue does this) deveop pain pathways which they dont normally have. This pain can be extreme and constant (tell me about it) and the bad news there isnt a great deal can be done for it.

He has started me on some slow release morphine which although is great for pain relief I of course wouldnt want to have long term. Also going to try a steroid injection into one of the nerves that supplies that area.

This appointment (whilst from the pain point of view not great) has really been a huge relief in terms of finally being given some answers and although rare, there is at least an explanation!

I just wanted to know if anyone has had this diagnosis or has suffered this type of pain and is looking for answers too.

Many thanks

Kate
deleted_user
deleted_user
I recently had some severe, chronic , constant pain in my sternum. After 2 months of my family doc wanting me to go get a lung CT, I saw my lung doc. He knew it was not new clots and was probably a costochondritis. He prescribed lidopatch and the pain was gone after 12 hours. I used the patches about 2 weeks before the pain disappeared completely.
deleted_user
deleted_user
so are we always going to have pain now?
deleted_user
deleted_user
sorry you are having so much pain... i wish you the best with it and pray it ends soon. we are always here if you need to talk. i know i do but not to many people for me to talk to unless i go on here.
deleted_user
deleted_user
Kate

Are you on warfarin for life.
deleted_user
deleted_user
My pulmonologist said you shouldn't feel pain, what a bunch of bull in my opinion. I have this fluttering feeling that goes from under the breast near the rib around my side. Any occasionally I have a sharp pain in the lung. He says that is nerve damage but that is pain in my opinion. Hope yours gets better.

Do you ever get pain in the shoulder blade? They told me that was from the fluid around the lung.
kate37
kate37
Hi All
Thanks for replies.

cmalt I am so glad they got on top of your pain so quickly because as Barbara has pointed out there are a number of doctors who are to quick to pass off your pain with such shallow remarks!!

Stacey please dont worry as I dont think that pain like this is the same for everyone. And thanks for your wishes-its exactly what I mean about this site it IS such a good place to come to as so many are going through the same thing and know exactly how you feel.

MG19 yes I am on warfarin for life. I had no risk factors that could be reversed - I didnt even have a DVT. All genetics came back normal so my haematologist feels at this point the risks of warfarin are less than another PE.

Barbara Ithink that 'nerve damage' comment is very much a brush off and if Ive learned anything its that it is YOU feeling YOUR pain and you are the one living with it. I havent had shoulder blade pain but it does radiate to the lower part of my back sometimes. Interesting about that fluttering feeling and I think about a year back I put a discussion on here because I was experiencing something similar. I never got an explantion for that either!

Thanks again guys and I hope wherever you are on this journey you are doing well. Please dont hesitate to ask if there is anything that is worrying - I will try to return the help!

Hugs!!!

Kate
Jean1014
Jean1014
I don't have that kind of pain exactly, however, I did want to add that nerve damage IS pain! I have peripheal neuropathy.... nerve damage from the tip of my toes to well up my leg (above the knee), as well as my hands to up my arms. And I can say, hell yes it hurts! It is extremely difficult to explain and or describe to people because with the pain, there is also a great deal of numbness. Crazy I know. The best way I can put it is that the affected areas are in a constant state of.... well, you know when your foot falls asleep, then starts to wake up, but before the pins and needles really kick in? So you can feel a little but, but not fully, and tingly? Well that is how I am all the time. Throw in to that, serious pain at times. It's bizarre. Anyway, my point was simply that nerve pain does in fact hurt! A lot! As for the pain I get in my chest, I have just assumed it is part of the process. I did have kung infarction and from what I have read, healing hurts!
rmb
rmb
I think what they mean is that the lungs themselves don't cause pain, but hello... there's a lot of stuff around the lungs that needs to be factored in,like nerves, inflammation, costochondritis,.pleurisy like nerves. Pain is pain.

I had costochondritis. It was about a year after my PE that it started, so can't say for sure it's related, but it was pretty painful, and kind of scarey, until I finally had tests to rule out anything serious. I had it for about 4 months.

I do get occasional pain in my right shoulder blade, and it gets worse when I have a bad chest cold,or when I'm stressed. I've always gotten pain that area though. I had massive clots in both lungs but from what I remember, the right lung was the worse off of the two, so maybe it's damage from the PE. I dunno.

My PEs were in 2007, and am pretty much pain free. So just because you have a PE does not mean you are going to experience pain going forward. It's different for everyone.
deleted_user
deleted_user
If you are still on warfarin, and not getting enough green veggies, and perhaps are taking antacids for the (non) side effect of indigestion from warfarin, get checked for Anemia. I was feeling great until late December and then started going downhill. After many trips to the Dr. I finally changed to another and she found out with one set of blood test I was Anemic, must likely due to long time use of proton pump inhibitors that blocks absorption of iron. Many of the symptoms, I hear people of having after PE mirror anemia, so it makes me think that this is something that should be checked out while on Warfarin.
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