I am in pretty much the exact same boat. I got told 2 weeks ago I must return to work, then the next week, the company I was working for goes into liquidation, so no job...which means job seekers...*sighs*. Likewise, until I started to get the symptoms for P.E I was not off work for any extended periods at all...

As far as the feelings, I got the same treatment, I got a written test twice for depression and "didn't score enough" on the doctors scale apparently....whatever that means... Then I was told it's just muscle pains... My doctors have always said "It has done a lot of damage to your lungs, it will take a long time to recover from it" but when I complain about it in the slightest, they dismiss it as if it doesn't exist...

All I can say, is like I am trying to do...keep your chin up and keep throwing punches...eventually you'll win...lucky punch and all ;-).

Best to you, Stu.

@goldenorf

It's not just your system or country---- it's the same in the USA. I don't know what to say that will help your suffering---- except you're in a large population of people who have lingering and sometimes very debilitating symptoms after the PE and after finishing their meds for it.

Was it the medication (warfarin) that caused those symptoms? Probably some of them. But I think you're off medication now and yet the symptoms linger on.

There definitely does seem to be a 'chronic/post PE' situation going on. Too many people, most of them very fit and active before, complain of that. Too many to fit into the 'you're still in the healing process' so just wait it out and try not to stress too much about it.

And please don't apologize for saying how you feel about this situation. It needs to be said, both for you and for validation for the rest of us in this mess.

As far as depression goes they try to look at certain criteria and see if a person has a certain amount of the criteria. I don't think that this always works-I think people need to be actually listened to. A counselor can be a great thing (that is what my Masters was to be in was counseling) to have-they listen to you but aren't connected so no biases. Having the PE itself can make one depressed-it shows us that we truly are mortal. It is scary, and moreso because of the paranoia that lingers-feeling as though any minute another clot can form. Depression can cause body aches but also having the clots causes aches too. I definitely have had all the things you are talking about-aches and pains and weight gain-and it does suck! Too bad some docs can't give more compassion sometimes and try to explain things better.

Zombiemom, you are so on the money with this. There is so much trauma from a PE, not only physically, but emotionally too and I do believe for some people it causes depression, which affects our physical well being.

Counseling was the best thing I did for myself after my PE. It made me realize that my docs have all done their jobs treating me for my PE, and what is left is me getting right with things. Once I worked on that aspect of myself post PE, I felt physically better and stronger. I think dealing with the emotional business is a really important component for healing for some people and far too often, it gets brushed aside. .

I agree---- counselling is VERY good for people who have issues.

Depression and anxiety are in fact listed in places as symptoms of PE or part of the post PE experience. Along with a sense of impending doom.....keed you not.

Of course, coming face to face with one's mortality in such a dramatic way is also sobering and could set off PTSD if someone was of the right temperament.

I came across a study about PE and Quality of Life.... here:

http://www.lumc.nl/rep/1070/att/91028021319455/110104001634450.pdf

"In summary, QoL in patients with a history of acute
PE is impaired compared to sex- and age-adjusted
population norms. This observation is partly caused
by the thromboembolic event itself and by age, obesity, and comorbid conditions. Nonetheless, these
independent determinants of QoL cannot explain
the total measured effect in our patient population.
There is a great need for additional studies on QoL in
patients with a history of acute PE concerning such
important matters as illness cognitions, coping mechanisms,
and self management; the effect of intervening
in these; or the effect of other interventions, such
as cardiopulmonary rehabilitation programs, on the
clinical outcome and QoL of the individual patient."

I also have seen something else that basically said that of all Cardiopulmonary events, those with PE have a lower QoL after than the others.

Personally, I was being treated for depression/anxiety before the PE related to health and family issues. The PE tipped me over the edge into basically a 2 week panic and anxiety attack. My psych actually sat me down and said, "Look, I want you to think of this as you've been in a car accident with two cars coming at you from different directions. You don't have the external injuries from that accident, but the trauma to your body is equivalent. Take the time to heal, spend the time knitting and drinking tea." I am much better for her having done that. I have been having that tight chest etc, but recently took some extra anxiety meds and it was gone.....it's possible that the chest sensations are actually the symptoms of anxiety. I would absolutely recommend seeing a mental health professional to be assessed. They will use the PHQ9 to test but will also talk to you, observe your 'affect', and be better qualified to diagnose this than a GP----heck the GPs in my group won't even make that kind of dx, they refer you to a behavioural/mental health person. There's no shame in seeing someone to make sure your brain is healthy too, and if there are issues, there are many approaches to addressing them, including chemical, which can provide immediate relief.

Also, There are some conditions that can follow PE, like post-PE syndrome, Chronic PE, pulmonary hypertension, that could be looked at. Push your doctors for more exams....and if a mental health person clears you, well, then it's harder for a med doc to say, oh, it's in your head.

Hello,

Yep a lot of us are in the same boat, the UK is cutting everything to do with welfare, if you believe you are to ill to get a job and hold it down, appeal appeal appeal, if you are on a benefit go and see a solicitor who can act for you and fight your case. To many people are slipping through the net and this government does not care. Atos the medical company dealing with the assessments has been shown to be very bad at what they do. Dispatches and Panarama showed this this week, so if you have catch up tv, try and watch these. All the best and chin up, its your body and you no how you feel.

i get exactly what you are saying - i feel like the dr's are sick of the sight of me. I feel that there is definitely not enough known and much more research needs to be done. I have seen the head professor in edinburgh for respiratory and to be honest i felt that the appointment was very one dimentional, clots are gone, you are better, there should be no residual pain, end of...... My dr says give it time. How much time? No one knows, everyone is different. So eventually i got fed up asking and just come here for support when i need it. Knowing its 'not just me' is a comfort (sorry guys).
Its quite shocking that in this day and age they cant give you more of an idea of what to expect although i think it must be fair to say the majority of people must just get better and never think of it again. I really didnt think i was that ill to start with, i would say my pain is more now since i have finished treatment that it was after the first few days. That can be very confusing and cause worry and anxiety. I have had times when theres been little or no discomfort for a few weeks and then it comes back.
i dont really agree about the depression thing - well not in my case but i can see how that might happen for others - this really is a trauma but when someone mentions depression to me it gets me so extremely annoyed i would say i am just frustrated. I personally feel that i have managed to deal with this trauma remarkably well and i am generally quite upbeat and very positive about life. It sucks to have these remaining symptoms - i fully expected to get back to normal long before now and i do still hope to be that same person with the levels of fitness i had pre pe. I am working at it but its a viscious circle for me. The more i do the more i ache and the more tired i am therefore suffer more, the less i do the better i feel short term, the fatter i get, the less energy i have - what is the happy medium - on a good day i try to do more, on a bad day i do what i can. I accept that this is potentially the 'new me' and get on with it as best i can. In some ways i am slightly better off now than i was pre pe - i dont stress the same, i dont rush about the same, and i dont organise as much as i used to - i pretty much just do what i need to and then see how i feel. from that point of view life is easier. I dont think anyone unless they have been through this can truly understand how it feels to be faced with the pearly gates and manage to make your way back, not really knowing if its just for a short while. I appreciate life much more, i enjoy laughter more and try to see the funny side of everything, i take each day as it comes and dont make too many extravagant plans. It annoys me sometimes that i am only 45 and i should be fit as a fiddle but im here and able to enjoy my kids and my family so thats enough for me right now. I know i am one of the lucky ones. OK todays rant is over! We are all in the same gang!!!

CeallachKnits, good info. Mental Health is an often ignored component of the PE event and I think we as PE survivors don't even recognize this in ourselves either sometimes. You think, I had this event, I didn't die and I'm being treated, so that should be it, right? And then you find, well not that's really not it. There's all this other stuff we feel and experience, and I do believe that while we have physical issues post PE from the trauma itself, I believe the anxiety and stress and depression can cause a good deal of those physical issues as well. And I know that's not easy for it's hard to think about a physical health crisis as being part emotional and part mental too.

We're whole beings, not just a lung, not just a heart.

goldenorf----- do YOU feel that you're depressed? You seemed to imply that you didn't think you were.

I know how you feel, man. It's so crazy how little drs know about PE's. Everyone's situation is the different but if you read through people's responses you can get some good tips.

I had a dr tell me the pain I feel has nothing to do with the original PE's months later! Well, since then I have been relying more on my own positive attitude, reaching out to people on this site and others for how to help myself. It really does suck to feel in the dark and on top of it feel no empathy from health care providers.

all i can say is thank god i joined this site cos people like u give me more imfo and knowing that people are thinking the same as me, im not going crazy after all........ thank you all x

well thank you all for your replies but i think some of u went of on a different tangent lol. depressed no im not depressed at all in fact my mind is probably the the only thing thats working proper::) i am very positive about wot i need to do mentally its the fact i cant do it physically i force my self to try to do more but then like jmac67 says then im very sore for days and pay the price other option do as little as i can but then its the same i ache just as much from not moving put weight on and i am back to square one. i have to find a happy medium where i do a bit rest a bit and get as little pain and aches as i can. i am due at my doctors this week for round two of exectly how fit and wot sort of shape i am actually in i will get answers because wot is happening to my body is real the issue i tried making with this post was how strange people with pe get the same symptoms after being told ur clear from clots and no more meds, i ment the post to be like should the medical world akowledge this because i can see a pattern in people on this site why cant a doctor ?? and perhaps change there after care perspective on people with pe not just say ur fine it will take time!!! u dont need 6 years of university studying to tell someone that lol i cant tell people that :) to be honest i would like hospitals to run groups like our disscussions my talks on here settle me so much because i know its not just me :)

Well, not every person in the world who's had a PE is on this site, so while there are some commonalities here, you're only get a small subset of experience. I don't know that everyone who has ever had a PE experienced this exact same thing. Maybe that's why some docs are more in-tuned to this than others, because not everyone is going back to them to say, hey, recovery is difficult.

And I don't think discussing our emotional and mental health is really far off the target in terms of recovery. I wasn't saying you were depressed or anything. I was saying that we aught to consider all aspects of our health, not just physical health.

@goldenorf---- is that a baby picture of you?? (grin)

I'm a big supporter of talk therapy for people who may have depression. No matter what the cause of depression, that's got to help.

But my personal belief is that there are reasons for pain (during and post any disease/condition) that trandcends 'being all in the mind'.

There's much new research being done now and since this site is more about 'support' not research so probably no one has come across these.

[Plus----- if a person thinks that articles like the one I'll post snippets from are 'going to give you a cure' ----- think again~ (grin) It's articles like this (and myriad others) that will be the backbone of help/cure in the future. So the un-curious can stop reading now.]

Glia cells.

Read all about them. Oh, and factor in a bit of genetics while you're at it. That probably explains a lot why some have no post-disease pain.

{ Nociceptors are nerves that send pain signals to the brain and spinal cord.}

" [...]an injury may heal and be long gone, but chronic pain may persist for years. How do we turn it off? The signal is no longer telling us about a new danger.

The goal of research is to find ways to interact with the cascades of pro-inflammatory molecules and receptors to restore balance in the system. This is a major paradigm shift in treatment of chronic pain that has already led to many insights."

Clinicians have long known that there are central nervous system abnormalities in people who suffer chronic pain."

"In a bygone era, they thought that premorbid personality and characterologic predispositions were responsible for a broad range of behaviors associated with chronic pain.

We now understand that central sensitization is responsible for many of the sensory, mood and movement disorders observed in a variety of neuroinflammatory diseases.

There is good reason to think that activated glia mediate such disorders and play a significant role in the onset and course of neuroinflammation and neurodegeneration that exacerbate nociception and the experience of pain."

http://www.practicalpainmanagement.com/pain/neuropathic/activated-glia-targets-treatment-neuropathic-pain