Coping after PE's

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I am so glad I found this forum and have been given good advice and support.

Does anyone get pain in their legs? I was told that my PE's (diagnosed in November with large PE's in both lungs)were coming from my left leg, I have been to the GP who doesnt seem worried by it, also I get funny sensations like a feeling of being a bit wobbly and disorientated and sometimes I get the feeling of rapid / heavy heartbeats and then just feel out of sorts for a while.

I get told that it could be menapausal but can't take HRT as this is what they think contributed to the PE's.

I know I need to start exercising again but I get days where I feel I can do things and when I go out I tend to feel wierd and then get all anxious so all I ant to do is go home, and then I get days where I feel absolutly terrible.

It would be so good if there was a support group that was able to meet up.

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  • Posted

    Hi, have you been diagnosed with Post thrombotic syndrome? have you had scans that show any scarring? You can look on Thrombosis charity facebook, lots of advice on there. Have you seen a Consultant ? Some hospitals are better than others, I could recommend good places, as could others. Sheila.
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    • Posted

      Hi

      No I have not been diagnosed with post thrombosis syndrome

      or had any scans. The only consultant I have seen was a

      cardiologist, I do have an appointment at the lung centre in March.

      You don't seem to get given any support or information when

      you leave hospital.

      Debby

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    • Posted

      Agreed, no info or incorrect. We went to Guy's & St Thomas London to get further diagnosis and advice and treatment, their vascular dept are world renowned. Referral through GP. Worth asking questions.

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    • Posted

      Thank you for this, I will start asking more questions and hopefully get some reasurring answers.
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    • Posted

      Hi Debby,

      I agree with you completely regarding the lack of information.

      I was diagnosed with Pulmonary emboli in my right lung last week. I

      had been sent to the local medical assessment unit by my GP. After

      bloods, x-rays and CTPA I was admitted in intense pain and started

      on Apixaban. I had a dreadful night in agony but fairplay the nurse

      looking after me did her best to get the pain under control.

      Less than 18 hours later I was discharged by a doctor I had not seen

      before, he felt my pulse in both wrists looked at my calves and had

      a quick listen to my chest and said you can go! I had to ask a nurse

      if I would get a follow up appointment and were there any do's and

      dont's, she said just take it easy. To be honest I have been given more

      information after having a tooth out!!! This may be a common

      occurrence but not to people like us!

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    • Posted

      Hi Janny

      This is so true, the information and advice you get (or don't) when you leave hospital is nearly non existent.

      The only follow up appointmetn I had was for another echocardiograme (as there was damage to both sides of my heart) and an appointment with the cardiologist.  My GP does do bloods for white blood cells but when I ask her for a D-Dimer she says that I dont need one as my levels will be raised anyway due to the clots that I already have so won't be reassuring for me, this is even though I have been having some real discomfort in my left leg.

      This has been a real life changer, I used to love going out walking and being out and about, but now I get really anxious when I do go out and just want to get back ome again.

      Take care x

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    • Posted

      Hi Debby,

      This has really helped me in knowing others feel the same about a

      lack of information.

      I have no idea what damage has been done but I will see if they are

      a bit more forthcoming at the appointment.

      I did see GP yesterday and to be honest I was quite distraught just

      explaining the situation, she was the one who gave me this site. I too

      love walking and being out and about but like you feel a bit unsure

      about doing much at the moment, hopefully our confidence will grow.

      I know Iam lucky in having a very supportive family but I don't want

      them worrying about my worries if you know what I mean. I really think

      it's beneficial to talk openly with others in the same boat. I wish you well. X

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    • Posted

      Hi Janny

      I totally agree, it is really beneficial to be able to talk openly with others and not feel like it is all in your head.

      My partner is so supportive but I know that at times he just doesnt know what to say or do, and I seem to be taking all my frustrations and worries out on him which then makes me feel bad as it is not fair on him.

      The most worrying thing for me is these horrible sensations that come on so randomly, like the feeling or rapid and heavy heartbeats and then the breathing seems to go funny, it is getting to the point where I dont want to go out.

      It would have been so helpful if there had been information on what to expect, how best to cope and what you can do to help yourslef.

      Take care x

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  • Posted

    Hi Debby,

    i too had unprovoked PE's and HRT was stopped immediately thereafter April, 16.  I felt it had something to do with my groin but was never checked further for DVT as I had no sign of swelling in my legs (CT scan was only taken of my chest).

    since then I have been bothered with pains in my legs, which I imagine is similar to tightness down veins and it can be quite sharp and throb over time. Been back and forward to the GP and mentioned it at t

    i also experienced pain throughout my body, shoulders, feet, elbows, hips, wrists to name but a few and have since been diagnosed with Fibromaraliga.  This condition can be triggered by extreme trauma or stress.

    i have s 

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    • Posted

      Sorry don't know what happened above but to continue (where text is missing above)

      mentioned concerns re legs/circulation at GP and hospital but after cursory exam they just put it down to experiences post PE's.

      i was sent an article about the 'Post thrombotic Panic Syndrome' and can completely relate to the symptoms albeit have never asked the doc to confirm I have it.  I have been treated for ongoing anxiety so much so that I'm one breath away from a panic attack at any time, can't cope with stress and am obsessed with my own mortality.  

      A big big plus recently was seeing a physiotherapist.  she noticed that I was overbreathing (acute hyperventilation) and she identified this could be a cause of my underlying pain as the body is in fight or flight mode all the time.  Since doing the breathing excersizes and by using tequniqes involving mindfulness, I have started to feel some improvement however I think I have long road to get back to where I was.

      i too liked reading comments from the group as it reassured me that I wasn't the only person who's life fell apart that day (after PE's)

      take one one day at a time and go at your own pace x

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    • Posted

      Hi Mackers

      Thank you for your reply, it is so reasurring that it is not me going totally mad by all of this and that some of the symptoms I have is 'normal'.

      I seem to be at the doctors every week, and get the impression at times that the doctor doesnt really know what to do or say and agrees with whatever I say.  I get so worried that they are missing something, my diagnosis of PE's didnt get diagnosed for nearly 3 weeks despite me going to the GP and hospital, in the end I couldnt get out of bed and was hardly eating or drinking and went to A&E where I finally got diagnosed.

      I too didnt have any scans of my legs and only had a CT scan of my chest (which confirmed the PE's).

      I have terrible anxiety too, I am obsessed by any little twinge or ache I get and seem to have a constant black cloud over me.  I seem to just get by day by day.  I get some really horrible sensations at times and then everything seems strange. I have an appointment to see a respiratory physiotherapist end of this month.

      I guess it really is take one day at a time smile

      Take care

      D x

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    • Posted

      Hi Debby,

      i was everything youve you've described and also went undiagnosed despite repeat trips to hospital, I think that was why I keep think they are missing something too.  Like the others have commented, things do settle over time so don't beat yourself up about how you are feeling, you will see most folk were in the same boat.

      the haematology recommended a group called Thrombosis UK.  I joined them on Facebook and mentioned how I was feeling.  One of the group Admins sent me details about Post Thrombotic Panic Syndrome.  It was a really reassuring read for me and something I wish I'd read at an earlier point in my diagnosis, might be worth doing the same?

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    • Posted

      Hi Mackerrs

      I think that is the issue with me too, as I went undiagnosed so now I keep thinking they are missing something, also I get the impression that I am becoming a pain at the doctors.

      It is just so stressful and worrying when you get these feelings for no apparent reason, I get them when I am sitting down or standing up.  Its the feeling of shortness of breath and everything going a bit wobbly and feeling so out of sorts, will be so glad when things start settling.

      I will have a look at Thrombosis UK and will download details about Thrombotic Panic Syndrome.

      Take care

      Debby

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    • Posted

      Hi Debby, Thrombosis UK has a facebook page with good info and questions. Have you had blood tests to check for underlying blood conditions that might lead to clots or PEs? Where are you located?
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    • Posted

      Hi Sheila

      Thank you for this information. I havent had any blood tests to check for any underlying blood conditions.

      I am in Devon, just on the border of Somerset.

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    • Posted

      So what reason have they given you for your PE? Someone needs to join the dots for you and manage your expectations. The reason why I asked about location is that Guy's & St Thomas hosp london is the top of the game in vascular problems in UK. First hand experience, written loads on here as son had major DVT and PTS treated at ST Thomas. He was also diagnosed with May Thurner Syndrome which we had never heard of, which was prob a contributing factor for his huge DVT. He is much better and able to exercise now, as recommended by his Consultant.  

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    • Posted

      Hi Sheila

      The doctors have no idea what caused the PE's, the only thing they could come up with was the HRT tablets that I had been taking for 4 and a half months may have contributed to them.

      I kind of feel that now I have been discharged I have to find my own way, I do have an appointment with the lung centre in March, but have been given no real advice from the professionals.

      I have been told that I need to start exercising again by the cardiologist as the left side of my heart is back to normal after only working at 15% but the right side is still under strain from the clots, I am scared of doing any exercise, I even get paniky going for a walk around our road.  My GP has filled out a gym referral for me but I am not too sure.  These horrible sensations I get at times is what is putting the fear into me.

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    • Posted

      Hi mackerrs,

      I too have been having extremely darks thoughts about my own mortality, I

      have put it down to the shock of all this. I am normally a glass half full

      type of person, but none of this feels normal.

      I have spoken about it to my GP, she doesn't want to put me on anti

      depressants right now, she wants to wait a week or two and see how

      I'm feeling then.

      The best thing is that we can support each other on here, because

      unless you have been through it with the best will in the world you

      cannot understand the devastating feelings.

      I agree you have to take one day at a time, yesterday I was better than I

      am today. Sending good wishes x

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    • Posted

      it will get better. Try to stay positive. Do things you love to take your mind off of it.
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    • Posted

      Thank you. I know it is early days yet, I am trying to plan a few things. X

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