Posted , 21 users are following.
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
2 likes, 46 replies
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darren44287 Cocochanel2910
Posted
brucegt Cocochanel2910
Posted
I'm so glad I can read sites like this. I'm 7 months into recovery from DVT in both legs that led to multiple PE's. They gave me a 1 in 3 chance of not coming out of hospital. I'm 'just' 67 and thought I was bullet proof. It took a few months for the gravity of my 'scare' to sink in. I think I've seen 18 doctor/specialists in the past 7 months. Many of them have reinforced how lucky I am. (This is starting to annoy me somewhat).
My big issue now is the fatigue. Some days I'm 'almost' normal but most of the time I can't get out of my own way. I can sleep anywhere anytime. (I'm on Elequis). My legs are always tired. I had fluid on the lungs and pleuricy which has left scaring. I also had some internal bleeding and an infection in the week after being discharge for hospital requiring me to go back to hospital.
I also struggle mentally. I have difficulty relating to others the 'gravity' of my experience. I'm not after sympathy but some empathy would be nice. My wife has been great. A real gold brick. But others just shrug their shoulders and don't 'get it'.
Anyway it's reassuring to know I'm not alone and not just being paranoid.
thanks
ann55375 brucegt
Posted
just 67 here too. same. dvt,p.e.s. hubby is stronghold. meds are awful, cant seem to get normal life back. medical prof have been useless, just basically get on with it. seems to be no support for this type of problem. alone, no, paranoid,,no. unwell, yes. i comsider this as being a life altering event for me. any helpful hints would be gratefully received.
brucegt ann55375
Posted
Yesterday I went to my GP. Even thought it's 'only' 7 months since my DVT/PE he had forgotten and thought it was 2 years ago!! Now I know I'm not special but it doesn't give you much confidence in GPs.
I have a specialist who is excellent but I need a referral and it costs big time. The GP has no idea and doesn't believe chronic fatigue and and breathlessness is an issue. He doubts it should even take 6 months to recover. After many years with the same GP I'm now on the lookout for a new one.
Is PE so 'uncommon' that even GP's don't have a clue about it?
All I can say is that it's a roller coaster ride. Some good days and some bad days. The longer you go the more good days there are.
TGrove brucegt
Posted
My GP said the same thing. "a few weeks and you'll be fine". My hematologist laughed and said I had a long road ahead, maybe years. He was right. GPs aren't there to be experts on everything, they're there to know a little bit about everything.
brucegt TGrove
Posted
So what are the things that your hematologist has done that you find have helped? Mine has suggested someone to help me cope mentally.
My big issues now are my fatigue, breathlessness and aching legs. I can sit or stand for long and find I'm spending way toooo much time on the bed.
TGrove brucegt
Posted
Getting past it mentally is big. That was very difficult...The best thing physically I found was switching blood thinners. I started on Xarelto and that made me feel awful (fatigue, joint pain, etc).
brucegt TGrove
Posted
Yes I've already been switched from Xarelto to Eliquis. I cant tell the difference!
If I could get my legs right then I think I can cope with the rest.
TGrove brucegt
Posted
I felt awful on both Xarelto and Eliquis. Savaysa worked the best for me regarding the new anticuagulants. In the end however, I feel the best on good ol Coumadin
brucegt TGrove
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Thanks. I think the frustration is the biggest issue. When the GP fobs you off you start to doubt if you really have an issue or are you just becoming a whinger.
ann55375 brucegt
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i am following this with interest. ive tried two and ended up on warfarin and seem ok. its the fatigue mentally and physically that gets me. anti depressants seem to be what they try, im not keen.
brucegt ann55375
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Back in the '90's I had some health issues. They gave me anti depressants. They did more damage then anything else. I would run a mile from anti depressants at any cost.
I've found staying active is the best solution. But there comes a point when my wheels get wobbly and I can't keep going. That's when I feel the worst. So it's a balance between doing nothing and keeping on going. It's a mental game that I hope I can win.
ann55375 brucegt
Posted
i find myself in same position. the drs just throw different anti deps at you but have no regard how bad they make you feel. i really dont want to take any others, they have all been awful but i am trying so hard to keep on an even keel. have you any help how to do this, what kind of exercise do you do. i can walk and do but cant swim. i am scared of doing much in life, i used to do yoga but im scared to go to classes now.
brucegt ann55375
Posted
Exercise is an issue. Not enough and you never get anywhere. Too much and you are back to square one. It's a real balancing trick. I'm lucky and live near the beach in the sub tropics and have a pool at home. I find walking more than a few hundred yards difficult. I walk a couple of times a week on the beach. I swim every day in the pool. It all helps. This time of years it's 30c every day with 90%+ humidity. So doing anything is a challenge. Even with the exercise y legs don't improve much at all.
It's a mind game. You have to rely on will power and not pills.
susan18767 Cocochanel2910
Posted
It's been 7 years since the first OP and 4 since the last but this is the only place I've found anything about being tired all the time since my double PE.
Mom died end of May and 5 days later I broke my ankle, a very bad fracture, all 3 bones. It has a name but I always get it wrong and know I can't spell it. Trimalleolar, perhaps? To top it off, I l live in Germany and my husband hadn't made it to the US, yet. All went well in the US (always have travel medical insurance when traveling outside your home country) and I got home and checked in with a German orthopedist. I got a referral to physical therapy but as is typical in Germany, I had a long wait. I live on the 2nd floor (1st to Europeans) and couldn't get out and about and was still non-weight-bearing. All that sitting around waiting led to the PEs. Once at the ER I didn't even know I had anything that serious going on. They did the catheter thing because one of the PEs was pushing against the heart and causing problems there, but everything was happening in medical German. I was clueless and once that oxygen mask was on, I could breathe and felt much better. My poor husband understood it all. It wasn't until several days later that one of the doctors told me I almost died. It still hasn't really sunk in for me.
I ended up in a rehab clinic for a month where I got cardiac, pulmonary, and orthopedic rehab. While the doctors were mostly concerned with my heart and lungs (of course), I was afraid I'd never walk normally again. I came out of Reha much better and stronger. A happy ending? Well, I'm alive, walking mostly unaided, can do stairs slowly with a crutch or a handrail, and exercise every day, so yeah.
But sheesh, I am so darn tired. All the time. I have a pedal trainer thingy (like an exercycle but just the pedals) and do that 20 minutes morning and evening, walk the dog afternoons and evening, and do a short resistance band workout every other day. It wears me out. I have to try really hard not to take an afternoon nap. I'm trying to build up my leg muscles and build up speed when I walk, but not too much, too fast. I have follow-up physio twice weekly and come out feeling so strong, but still, by evening, I'm wiped out. It's only been a couple of months, but while I'm 61, I'm not old enough to feel so old.
It felt good to find this discussion. No where else in looking around the internet talks about the complete exhaustion afterwards. I'm not alone.