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.
Hi all
Had bilateral PE in March 2008 and like many people here am still getting quite a lot of pain especially on the right side.
Have had it 'diagnosed' as everything from another PE to anxiety.
All I know is it a very real, sometimes unmanagable pain that has at times taken over my life and turned me into a pill popping wreck!
Anyway I was referred to a pain specialist who was absolutly brilliant. And guess what it is NORMAL to have pain for quite a long time after a PE.In some people if there is scar tissue it rubs against the pleura (The covering of the lung) which is an extremely sensitive nerve filled area. Said this takes along time to heal.
What it also means is that they can come at the pain management from a different angle. Instead of pain 'killers' I am trying a drug that works on the nerve pathways instead. Will keep you posted how that goes.
While this is brilliant and makes me feel I am not totally 'loopy'I am also cross that I havent got any doctor who has commited to saying this before. I know they have to rule out other causes but I have been through so much I neednt have to get to this point.
Anyway feel have to look forward now and am more able to have a positive feeling that I WILL get through.
Kate xx
Had bilateral PE in March 2008 and like many people here am still getting quite a lot of pain especially on the right side.
Have had it 'diagnosed' as everything from another PE to anxiety.
All I know is it a very real, sometimes unmanagable pain that has at times taken over my life and turned me into a pill popping wreck!
Anyway I was referred to a pain specialist who was absolutly brilliant. And guess what it is NORMAL to have pain for quite a long time after a PE.In some people if there is scar tissue it rubs against the pleura (The covering of the lung) which is an extremely sensitive nerve filled area. Said this takes along time to heal.
What it also means is that they can come at the pain management from a different angle. Instead of pain 'killers' I am trying a drug that works on the nerve pathways instead. Will keep you posted how that goes.
While this is brilliant and makes me feel I am not totally 'loopy'I am also cross that I havent got any doctor who has commited to saying this before. I know they have to rule out other causes but I have been through so much I neednt have to get to this point.
Anyway feel have to look forward now and am more able to have a positive feeling that I WILL get through.
Kate xx
The PE its self was painless and I dont think I have had any pain relating to it since (it has all been the pneumonia), I guess I have the post PE pain to look forward too soon!
Kate/ anyone else. Were your PE's painful and have you ever heard of this 'taking small amounts of antidepressants for pain?
Hope your having a lovely weekend.
P x
I haven't heard of antidepressants for pain relief but it doesn't surprise me, they seem to have several uses.
Karen xx
Thanks for replies
I too had very little pain at the time of PE but it hit me a few weeks after and had been there since!
On one of my trips to A/E was offered diazepam as it has some muscle relaxant properties and they said I had muscle pain! I put them in the bin!
2 Weeks later was told it was most probably another small PE so was glad I didnt take the muscle pain diagnosis more seriously.
Kate xx
I finally found a really good acupunturist who is an anesethesiologist as well. He diagnosed me with regional pain syndrome, and the accupuncture treatments are helping.(I also have chronic fatigue syndrome and fibromyalgia post PE). I also started taking a breathing class called "buteyko breathing." I think it is helping too. I have less pain than I used to , and it is less severe and for shorter time periods. The breathing class focuses on the facxt that we have learned a lot of bad breathing habits and breath too much. I have been diagnosed with chronic hyperventilation syndrome -I breath too fast all the time. I am larning to only breath through through my nose and slow my breathing down to reset my point in my brain where I feel the need to take a breath. "You should only breath through your mouth as much as you eat through your nose!" The class can improve sleep apnea, snoring, and asthma as well. I will let you know how things progess.
Blessings, Teri
Anyway, I was amazed that the NHS have a pain specialist and actually referred you - that is progress. I bet you have learnt a ton about medical stuff now - you will be the most informed nurse in the UK and your patients will benefit too - I also think now I will use this expereince to make me a better therapist - after all, you really have to expereince these things to really know how to emphasise with others going through similar events.
Glad to hear you're doing well
Love DAwn x x