Why are my legs tired and hurting again - Atrial Fibrillati...

Atrial Fibrillation Support

31,286 members36,939 posts

Why are my legs tired and hurting again

SweetAdelyn profile image
22 Replies

In December because of problems with Xarelto, eg. itchy swollen legs with weeping sores, blood in mouth and on pillow on awakening, legs so tired they felt like concrete blocks and I could hardly stand by mid day, my EP suggested I try Edoxaban 60 mg as he was finding it was better tolerated. I did this and lo and behold these nasty side effects disappeared. That was 6 months ago and I was elated to have no bad effects from the Edoxaban. Unfortunately over the past couple of weeks the tired heavy legs are back in full force but so far none of the other bad effects Xarelto gave me. I am so disappointed as I thought I had finally found the one. Does this mean I have to pick the anticoagulant that gives me the least problems and suffer- this is the third one I have been on and it is very disheartening.

Written by
SweetAdelyn profile image
SweetAdelyn
To view profiles and participate in discussions please or .
Read more about...
22 Replies
goldey profile image
goldey

Are you on a statin? That is one side effect of statins.

SweetAdelyn profile image
SweetAdelyn in reply to goldey

No statins but I have had this side effect with Eliquis Xarelto and now Edoxaban. Never had it before going on anticoagulants.

offtherecord profile image
offtherecord

Hi Sweet Adelyn,

I have more or less asymptomatic AF, discovered when I went to the G P for an 'old age' blood pressure test. After 3 years I still would not know my normal paced heartbeat was slightly irregular as I detect no other symptoms. I'm a 71year old woman.

I do not have high blood pressure, high cholesterol, diabetes, or anything else, and am not now in any medication.

I have found exactly the same problem in reverse order..I started with Edoxaban and changed to Rivaroxaban, after all the routine tests, Holter Monitor etc . I did as I was told after the shock,of the discovery.

As you can tell by the response you have had this seems to be very unusual, and my GP assures me the drug is not causing the problem. Mmm. I am now 10 weeks into NOT taking an anticoagulant, and guess what? I am SLOWLY getting back to a degree of normality. After 2.5 years of drugs I got to the point where I couldn't get up the stairs, or raise myself up from a chair, as my legs were so weak. I couldn't carry on weakening like that! Before this I was a happy and fit gardener and walker. I can't do much now but WILL get back to that I hope.

I am fully aware that this is not recommended! I have very few symptoms of AF, and have already not taken up the cardioversion offered together with the terrifying, to me , amioderone drug associated with that.

It's more than difficult to go against the professionals but I had to test that the anticoagulants had this effect on me.,...and they did. I'm now going to physiotherapy to help strengthen my much weakened muscles again. I feel I have lost the last three years of a good lifestyle through this. I'm well aware of all the potential outcomes of AF....but....

I think I must differ from most folk....anybody else?... on this site with this reaction.

But...we all differ. I will go for my echocardiogram when it comes round again....so far there has been little change shown on that.

This may or may not be helpful, but it's where I'm at at the moment.

I'm trying to build up the resources to go to the GP and talk this through...not that they ever talk to me! Annual or more frequent blood tests ? Not for me it seems.

Best wishes with your quest.

Anna1511 profile image
Anna1511 in reply to offtherecord

Hi

I wanted to find someone who has come off blood thiners and foubd your post :)

Is it hard!!??

I have been on eliquis for almost 4 months and this friday its my last day. I have had the worst time with eliquis. How long did it take you to feel normal?

offtherecord profile image
offtherecord in reply to Anna1511

Hi Anna,

Bear in mind I have few OTHER problems that I know of...,the undiagnosed AF caused me NO ill effects...those came from the anticoagulants. I stopped the Xarelto in mid April after 2.5 years, and am SLOWLY regaining strength. I can gauge this by how far I can walk and how tired I am after my yoga class, or indeed how much easier it is to get up off the floor in that class. I can proudly say I have dispensed with the chair I formerly needed to do that ...since Xarelto.

I think we are all very different, both physically and psychologically. I would not attempt to influence anyone else. My major problem is mentally battling the

pros and cons of my decision, always bearing in mind Bob's cautions. But , if I'd carried on with the meds my life was coming to a painfully stiff standstill. ..literally....from one of little physical difficulty for my age.

Very best wishes to you.

oriole2 profile image
oriole2 in reply to Anna1511

I have been on Eliquis since Feb. I hate it my neck, biseps muscles in my arms hurt most of the time. But sounds like I will be on it forever. I hate it!!!! Most of my Dr.s say this medicine will not do this to you,. I beg their pardon!!!!!

Anna1511 profile image
Anna1511 in reply to oriole2

All my drs also say eliquis doesnt cause muscle pains or whatever. It has caused more than that! :(

SweetAdelyn profile image
SweetAdelyn in reply to offtherecord

I don't care what the Doctor says, I was pretty healthy for my age (80) no trouble with my legs or muscle pain until I started on these drugs and nobody will convince me that they aren't at the root of my problems. Like you I am tempted to take my chances and stop taking them. I see my Doctor on July 15th so we'll see what he has to say. Good luck to you and I hope you find a solution.

Ianc2 profile image
Ianc2

Have you tried warfarin?

SweetAdelyn profile image
SweetAdelyn in reply to Ianc2

no I haven't at this time.

solarjdo69 profile image
solarjdo69

SweetAdelyn,

I have posts on this site that goes into more details, but I felt similar in that between the blood thinners (wafarin) side effects and the other prescriptions (Valsartan, linisipril, metropolo, digoxin) that I could barely function and so embarked on a natural blood thinner/heart supoorting regimen. I gradully tapered off of the warfarin adding in Nattokinase 1 - 2400fu/day, vitamin "E" 2x400mg/day, "D3" 200mg/day, CoQ10 1/day and turmeric 2 650mg/day. I also take 2-3 800mg hawthorne which strngthens the heart.

So i am taking "Offtherecords" approach and going all natural. I have one remaining prescription to get off of; diltiezem. I find that it does help me keep my heart rate normalized. I suspect that since I am overweight and have some sleep apnea that it is my main contributer to my AFIB. Working on it.

Buffafly profile image
Buffafly

Do you take any other meds or supplements?

SweetAdelyn profile image
SweetAdelyn in reply to Buffafly

Diltiazem and telmisartan for blood pressure. EDoxaban for A fib

Buffafly profile image
Buffafly in reply to SweetAdelyn

Diltiazem is known for causing problems with legs and ankles. I take it and I have found the effect varies depending on how well my heart is working. I believe high doses can also cause heart failure which causes swollen legs. Diabetes also affects peripheral circulation and nerves and excess weight won't help. I wonder if you are not blaming the wrong thing, or maybe the anticoagulant is the last straw for your circulatory system. My husband has sore itchy legs but his are caused by varicose eczema - he is also overweight and prediabetic. Regular moisturising cream and wearing support socks help him.

SweetAdelyn profile image
SweetAdelyn in reply to Buffafly

The strange thing is that the swelling and the rash all disappeared when I stopped the Xarelto and switched to Edoxaban 6 months ago and hasn't returned. My legs have been great and all of a sudden the tired heavy feeling has returned making it difficult to walk by mid day. At the moment I am only on 180 mg of diltiazem although while at the hospital for an A-fib attack they had it up to 360 mg. This was last year and my a fib hasn't bothered me at all so I gradually reduced the diltiazem to 180 mg. with no problems. As I said I had none of these problems before the anticoagulants. frustrating.

solarjdo69 profile image
solarjdo69 in reply to SweetAdelyn

Try taking 1 approx. 600-800mg of hawthorne AM and PM and see if that doesn't relieve the swelling leg issue. If I don't take it, I swell. When I do I rarely swell.

SweetAdelyn profile image
SweetAdelyn

At 80 with blood sugar on the high side, although not taking medication for it just trying to lose weight and watch diet, they didn't feel I was a good candidate.

solarjdo69 profile image
solarjdo69

I've read that the apnea stresses the heart in particular and I have found that when I wake up at night that my heart rate may be up. I reolved to always do some deep breathing for a few minutes which seems to improve my day when I wake up. I am suggesting that the afib comes on later in the day as the heart has been stressed by low oxygen at night during apnea.

Seawalk profile image
Seawalk

I’ve had problems with anticoagulant too. Eliquis gave me muscle pain and weakness to the point not being able to walk by late afternoon. Also abdo pains. I’ve stopped and stated it 3 times, felt great when not taking it. Been on RIvaroxaban, stopped and stated this as well, different pains but severe and get swelling. Am now about to try Edoxaban. Not on any other drugs now that can cause these symptoms. Best to you SweetAdelyn it’s not easy when meds make one feel worse.

SweetAdelyn profile image
SweetAdelyn in reply to Seawalk

Just to give you some hope. I've been on Edoxaban for 6 months with no problems until the past couple of weeks when the achey tired leg thing started up again but no other side effects so far. Perhaps it will just resolve itself. One can only hope - Good luck with the Edoxaban

maria68 profile image
maria68 in reply to SweetAdelyn

I know this is long after your post, I just wondered how your leg pain was now?

I have also experienced leg and foot pain and numbness now also with itchy spots. I’ve always blamed the Xarelto I was taking as it started at exactly the same time. My cardiologist doesn’t agree but at last I have persuaded him to change my prescription to Endoxaban.

If your interested I will let you know what happens.

Seawalk profile image
Seawalk

Thank you. Gives me hope.

You may also like...

surgery changing my anticoagulant

the surgery yesterday and she changed me back to Xarelto without batting an eyelid. She said it...

Restless Leg Syndrome

my restless leg issue is driving me nuts! Can anyone relate to this issue? I take Xarelto,...

Tooth extraction...again!

have an upper tooth extracted on Tuesday. I take edoxaban 30mg. Last time I am almost sure I...

Bad side effects with anticoagulants

impossible to take anticoagulations due to very bad side effects, including swollen legs, nausea,...

Went shopping and my legs went to lead?

felt a little strange but my calf's ached and my legs started to feel like lead is this my AF or my...