I had a massive PE in February, I'm a 66 year old female who was reasonably fit, but now I'm so tired all the time ! Will this go and does anyone else have this problem? Kind regards Linda
Hi there
I had a large saddle embolism in Jan 2015 and am a similar age to yourself. I found recovery to be a very slow process....Now, nearly 18 months on and I'm pretty much back to normal but still get out of breath sometimes and get little niggly chest pains. Also I find all my energy drains away by mid afternoon sometimes. We all seem to recover at a different rate. Tiredness after 3 months doesn't sound too abnormal to me.....my pulmonary specialist said to expect 6 months to full revovery but my GP said it could be more like 18 months and I think he was right!!
Best wishes
Alex x
Hi, Just to make you feel normal.... I am in my late 50's and had a PE at the end of Jan. I definitely feel exhausted, really alien for me. I do find drinking lots of water helps but I think it is a side effect which a lot of us seem to get.
I do try to ignore it as much as poss. BW
I'm about 18 months after PE, multiple clots in both lungs. It took forever to start to regain my energy. After a year I was still tired all the time with occasional chest pains so I went back to the consultant who said the clots were gone but my lungs weren't "fit". I started doing pulmonary rehabilitation about two months ago and it has been amazing - I feel so much better. Pulmonary rehab isn't routinely offered to people who have had PE, but I really feel it should be. It was there that the nurse explained that when you have a lung disorder, the intercostal muscles between the ribs become weak as do the large quadriceps muscles in the thigh, which we use for walking. Rehab targets these muscles. The leg muscles use tremendous amounts of oxygen and when they aren't as strong as they should be, walking is a real chore and we become exhausted easily. I highly recommend asking for a pulmonary rehab referral. I can't believe the difference it has made to me. But recovering from PE takes a long time. I'm 63, by the way, and was also reasonably fit before my PE.
hi i am 56 year old female, its 6 weeks today since i had my PE and i am so tired but i am not sleeping at night very well due to hot flushes after having to stop HRT so put it down to that, after reading yours and other comments i realise it could post PE, thats also causing it, dont know how i will cope with my job at present time as i am napping most afternoons,
Hi Allexie, did you have an uncomfortable heavy feeling in you chest too ? I'm really struggling at the moment and I don't have any energy whatsoever ..
Thanks Wendy that's helped a lot .. I'm going to ask my doctor as we have exactly the same symptoms.
hi Christie ... They stopped my HRT too ! So it's a double whammy .. Thanks for replying.
Yes I did, felt as if I couldn't take a proper breath in....was shallow breathing all the time. It did ease off though, very slowly tho even now nearly 18 months on I still get it sometimes. I think we are in this for the long haul unfortunately!
I had multiple clots in both lungs and have had DVT to felt poorly for months
they said I got it through having Lupus x
Wendy so interested in the group are you in the UK as I have never been told about this I am on waferin for the rest of my life I am 72 x
Hello,
like many any here in 49 and had clots on my lung a couple of months ago, suspect autoimmune condition as no dvt identified. I am shattered, lack energy and like you also came off HRT which I fully agree is the double whammy x. Good to know I'm not alone with the symptoms x
No we aren't alone .. It's a struggle with everyday chores ..I had massive clots in both lungs, it's been a huge blow ! But I'm hoping with time I'll get my energy back, I still have niggly pains in my chest and worry they'll come back ... I don't know if they can when on blood thinners !!
Hi there I am a 42 year old male in the uk , 3 months ago I was diagnosed with multiple pe across both lungs , and the biggest side effect of rivaroxaban I have had is extreme tiredness , like I can fall asleep at the drop of a hat , pretty much all day every day !! It doesn't bother me if I am working or busy out , but if I am at home it's horrible , just nodding off all the time !!
Doctors have told me to keep an eye on it , that's about it until I get my 3 month review with specialist
Regards
James
Hi James .. It's 5 months since I had a massive PE and I'm still feeling so very tired and still short of breath after a couple of minutes walk ! I'm having an echo scan on Tuesday. I hope they can find out what's going on as I have a leaky heart valve too ... Kind regards Linda
My PE occured two weeks after my complete hysterecotomy, so I was never allowed to begin the HRT. My doctor told me that I can take Estroven, which is a soy based OTC product. Have you found anything that works well?
Christie, I am curious how you are feeling today. I am just now at the one month mark after a diagnosis of PE in both lungs. The last week or so, it is all I can do to keep my eyes open in the afternoon. Is this just a normal thing? I felt better when I first came home from the hospital.
hi terri i am now 4 months since my PE and i am so tired all of the time i also felt ok at first but as i said earlier i am not sleeping very well at night back at work and struggling at min, also had a few lightheaded episodes dont know if this is anything to do with PE.
tryed all sorts of herbal remedies just about all that is available before going on HRT limited now due to blood thinners recently had some acupuncture nothing works except HRT and docters will not prescribe it for me anymore.
Hi Wendy, my case seems similar to yours. Also , I've had a revision hip opp a year ago and waiting for another on my right hip. Docs say this could be cause of clotting. I'm awaiting tests as the PE was only 4 weeks ago. I'm in sever pain with arteritis and taking a codine based pain killer twice daily. Now my doc says there is an antienflamatory that can be taken while on Warferan called Nabumentone. Has anyone tried it? Is it safe with Warferan?
I'm very tired all the time but can't tell if its from the medication or the PE as I still have multible clots on my lungs and my legs are barly getting my around even on crutches.
Many thanks in advance.
THANKS SO MUCH FOR THIS INFO....had no idea there was pulmonary rehab because even simple walking is difficult-not pain-wise but tired-wise. i am not the best exercize person to begin with, but following my saddle pulmonary embolisms i realized changes must be made immediately. i am 66 a young 66 who was always on the go but about a year before i got mine 12/16/2016 i just felt something wasn't with me....i kept mentioning it to doctor who basically ignored me, but i know my body and it wasnt right. hardest thing is dealing with being slower and much more tired and feel like i cant keep up with people and it ages me and my thoughts, depressing me even more. it is a vicious cycle between pumped and ready to go and then after a short time feel frustrated and exhausted because im holding everyone up. no-one has ever said that to me, its just my thoughts.