Posted , 5 users are following.
i was diagnosed with PE's in both lungs three months ago. my main complaint since the first month has been extreme exhaustion. That is, by late afternoon i am done. And if i try any exertion earlier in the day, i pay the price later. i used to golf and play tennis. now it is a wishful thought. all my blood work is normal as well as scans and MRI's. is this real or anxiety. i want to take back my life.
0 likes, 13 replies
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peter54321 ben91586
Posted
It takes a while. Everyone responds differently, but if you had a number of clots, it could take a while. I used to walk to build up strength. It will get better.
ben91586 peter54321
Posted
are you still on blood thinners? they just switched me from eliquis to xarelto to see if that was making me tired. but i don't see any change. how long was it for you before you saw any increase in your stamina
peter54321 ben91586
Posted
I was initially on Xarelto, followed by warfarin, which I have been on for the last 3 years or so. I don't remember either making me tired, but was on Xarelto immediately after the PEs, so was tired then anyway. I am on thinners for life.
TGrove ben91586
Posted
It takes time, and lots of it. At first, I was very fatigued also, I assumed it was my body healing (which it might have been). After awhile, I thought I should be getting my energy back, but wasn't. My suspicion was the blood thinners (Xarelto, then Eliquis). Once I got off the thinners, all of my energy came back.
ben91586 TGrove
Posted
wow. you got off blood thinners. was that your choice? i was just switched from eliquis to xarelto thinking maybe that was making me tired. but i am
also told i will be on blood thinners for life.
TGrove ben91586
Posted
My hematologist wanted me to stay on for life, but they didn't find any genetic factors or anything, so they left it up to me. It came down to quality of life for me. The way those thinners made me feel was like a zombie. I couldn't do that every day.
brucegt ben91586
Posted
Yes it takes time. I thought it was just me being too sensitive. GP's didn't help as they just fobbed it off. My hematologist was the one who supported me. Then I was admitted to hospital for other issues. There I met a few others who also had had PE's. Their stories confirmed my symptoms. I had very low oxygen levels for to long when I had my PE's and that did other damage that complicated things. (They gave me a 1 in 3 chance of making it through the night!!!!)
It's now 18 months since I had multiple PE's. I have a new GP who is proactive and has addressed some of my issues. I'm still fatigued by mid afternoon but with regular exercise and a positive mind the future is looking better.
Don't under estimate how your mind works. I was offered counselling, don't ignore it if it's offered. I fobbed it off but now wish I had taken up the offer.
A positive mind will be your best friend.
ben91586 brucegt
Posted
thanks so much. The fatigue is the most frustrating. and it seems to have worsen as by 5 in the evening i am done. my doctors order more labs and tests, all negative. but i am just looking for that small sign that i am getting better. how long was it before you felt a bit more stamina? did you have anxiety issues? i never had this problem before. but now, in large group settings like a party, i have trouble making small talk and rather stay home. thanks.
brucegt ben91586
Posted
Yes the fatigue is hard. Mine always kicks in mid afternoon. I haven't found an answer to it. Just accept it and have a rest. But it does get better. Just not over night!
I walk the beach as often as possible. A few miles if I can. That helps. I had lung capacity tests. They found I had lost 30% of my lung capacity. So that helped to understand why I was running out of puff.
I had/have a lot of anxiety issues. I almost died with my PE's. It took a while for that to sink in. I have anger/frustration issues. One of the first things my specialist said to me was to seek councelling. It's common with PE sufferers. Seek help if you need it.
I also had nerve damage caused by the PE's. My new GP has given me some new meds which has helped a lot.
I found that all the meds I was taking were making me worse. Or at least not helping. With the help of my GP I'm cutting back to what is really necessary. But I've been told I'm on blood thinners for life.
I've passed the 18 month mark and for the first time I think I'm making progress. My GP and specialist think I'm too impatient.
It does get better. Just take your time and make the best of what you have.
ben91586 brucegt
Posted
thank you. did you ever think or ask if the blood thinners were causing the fatigue? i ask because i am now mire fatigued after three months on thinners than i was the first month. but my doctors say thinners don't make you tired.
brucegt ben91586
Posted
I started out on Xarelto. Had bad aches especially in the legs. (I'm an Australian. I had my PE's while in the USA. The specialist in the USA started me on the Xarelto). Once back in Australia my specialist, knowing my issues, changed me to Eliquis.
However there was/is a complication. I have high cholesterol. Cholesterol medication is know to cause aching legs. So the combination of cholesterol and blood thinners made my legs worse. I also have nerve damage from the PE's. I'm also on Lyrica. I feel like a drug addict!!
But there's more!!! I have inflammation of the blood. Which magnifies any pain.
So you see it's not so simple. I've lost 30% of my lung capacity. Have blood inflammation and nerve damage. Add to that fatigue and you have an interesting combination. All as a result of my DVT/PE's.
Everyone is different. A good GP or specialist will tell you that PE's are atypical in that no one set of symptoms are common to all sufferers.
There maybe a roller coast ride ahead of you. I have good weeks/days and bad weeks/days. The first 12 months were a nightmare. Since changing GP 6 months ago I have improved a lot. Don't expect to much to soon. Slow recovery is 'normal'. Don't be afraid to shop around for a new GP.
good luck
jen86183 ben91586
Posted
Hi Ben,
Was you lung(s) damaged by the clots? I was told my lung had partially collapsed, no one seen bothered about that and said it would recover, if you have damage you will be tired and out of breath when exercising.
ben91586 jen86183
Posted
fortunately no lung damage. but the fatigue is most disabling. my day pretty much ends in the late afternoon