AF Association
13,184 members16,066 posts

Muscle aches

Good morning everyone,

Thanks for the thread on longevity recently, much valued,

It is nearly 7 am, I've been up half an hour and again awakened with aching legs and lower body. This constant condition has developed in concert with my taking Edoxaban for the last year. The medics tell me the two are not connected. It is difficult to accept that. I am seeing an osteopath and her assistance is valued but not fundamentally altering this situation. I have spondylitis in my spine but that has been present for many years... I'm approaching 70 and female, with added ongoing asymptomatic AF diagnosed 18 months ago. Similarly I have arthritis in my left hip but having had a recent X Ray of that trying to find the cause of this lower body aching find that it is little worse than 2008. My aching knees , also recently X rayed, are structurally in good order.

I take a magnesium supplement and cod liver oil along with the anti coagulant. I try to walk as much as possible, and monitor my steps and heartbeat ( 68 resting at present) on my Fitbit.

This is not a moan, simply a hope that someone might be able to throw some light on any possible connection between this affliction and the AF. I find my daily life is becoming increasingly limited despite my best efforts, and am not one to give in easily. Any suggestions?

41 Replies
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Good Morning - If you are thinking that it may be the Edoxaban that's the cause of your aches, then why on earth don't you just try another pill instead of that one?

I'd just tell my GP that's what I would like to do.

Hope you soon find a solution.

Best wishes.

Jean

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The only way to find out is to either change the script or stop (which I would NOT advise) so completely agree with Jean.

I think we all get muscle aches, one of my meds is well known for causing this symptom with muscle spasms - I keep it at bay with fascia release therapy, ensuring my electrolytes are in order and having a hot water bottle or warm pad (very effective!) on the affected area,

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I find very gentle exercise, a lot of it, at any spare moment, and in bed,helps keeps me supple and active.I also stretch my whole body in bed before sleeping and upon waking....all exercises are done carefully and slowly.I have had severe sciatica and began this exercise regime at that time. Several years on I have been sciatica free.

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Stretching helps muscle but not fascia which when it tightens will restrict muscle causing spasm and pain.

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I speak only from my own experience and from consultant advice...which could be wrong but helped me.

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So do I - I have stretched every day since I started ballet lessons but I still got terrible pains, cramps and spasms at night which stopped me sleeping. Since I have had fascia release sessions regurlary - no more AND my spine is much better aligned.

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Yes. muscle and spinal improvement was noticeable plud less tightening of hams. and uads which plague me.

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My problem stemmed from being hypermobility so I must be very careful not to over stretch as I can dislocate - did my shoulder doing a Pilates stretch about 5 years ago and it was the most painful thing I ever had!

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With apologies for typos!/I meant QUADSand PLUS! My exercises are almost in the Tai Chi spectrum re. gentleness.Conquering pain is on my priority list ....whenever it 'hits'.

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I got wot u meant!LOL

I wish I could do Tai Chi again - I tried last year but an hour is just too much for me & I can’t hold any pose for more than a few secondwithout consequencesso I have developed my very own little routine.

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What is fascia release? Can you do it yourself or do you have to see a specialist? I also cannot sleep because of pain and muscle spasms.

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I was introduced to it originally by a highly qualified masseurs but I now see a specialist.

See myofascialrelease.co.uk/wha...

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Cdreamer I agree. I know that that release therapy helps me alot. It's not pleasant it's downright painful but the relief after is wonderful.

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Thanks for your input everyone. I shall carry on trying to discover and if possible amend the cause of my problem and work on relieving the symptoms. I find it so disheartening to have improved the length of time I sleep but then to wake up aching even before I get up.

I have considered changing meds, and may request that, but it would have to wait until next year as my GP surgery is overwhelmed and non urgent appointments unavailable at present. Such us life in 2017.

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I have arthritis and my heart rhythm pill (flecainide) creates a lot of pain for me in all my joints.

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The muscle and joint pain I thought was due to Flecanide is indeed from Eliquis.

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It's a matter of horses for courses I think betsea! I changed from Edoxaban to Rivaroxaban, didn't seem to help, stopped taking anything for a month, was much better! My GP friend nagged me to take an anticoagulant again, so went back on Rivaroxaban BUT ....

When I first took a DOAC I also bought a Fitbit. After my cousin, a radiographer, thought her wrist pain was eased by NOT wearing her Fitbit, I took mine off. ...about three weeks ago ..when I restarted the DOAC. So far, I can only say I think I might have hit on something. I will test this for much longer before making it an item on the site, but I am optimistic. My GP friend dismisses this idea. Let's see! Nothing to lose.

I do have arthritis in my knees , and also have a referral to our local orthopaedic clinic for their advice. But...I'm so much better at present.

Best wishes , OTR

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I believe that it is highly possible that the edoxaban could be causing your pain.

When I was taking rivaoxaban I was told that there was no way it could be the cause of the side effects that I was experiencing.

Eventually, under the supervision of my EP I was allowed to stop taking it for 10 days, and the side effects went away.

I changed to edoxaban which suited me much better

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Yep Mike I agree 100%. The medical does not however.

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Thank you very much for that Mike, very helpful to be able to relate your experience. The quandary then obviously being that I'm already on Edoxaban, a new batch just about to be opened , and GP appointments requiring a battle of sorts. I'm encouraged now to discuss this again with my surgery and maybe see a different GP.

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I understand your pain. I am back on warfarin since the other two caused my muscles to ache horribly. I have Afib and Spondilitis in my back also. I have no doubt that the pain is connected. As soon as i got off Eliquis the bad muscle aches went away.

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i am on appixaban and am very active what i have noticed is the joints and muscles aching more then when i was not taking it 2 years ago, where i have had a sport related injury its more severe could be age as i hit 60 last month

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Thanks so much for these stories, just what I was hoping for to break the denial of the medics that the DOACS can have these side effects even if their computerised data doesn't list them.

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Arthritis as well as muscle and joint pain is listed as a side effect of Eliquis on their web site.

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I don't take elequis betsea. Im glad you have a grip on your problems . Good Luck!

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Have you tried going onto the well established favourite Warfarin been on it for three years with no problems and know people who have been on it for over 20 years. You just need a blood test every 4 to 8 weeks dependant how stable your INR is.

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Not yet Mike, I was offered Edoxaban at the outset and have reluctantly taken it as prescribed , being averse to pharmaceuticals as a rule, It may be a n approach I have to try. Thank you.

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I was told by my anti coag nurse that the NHS has used Warfarin for over 50 years they have the antidote to it so I never had a problem going on it. As it was explained to me why I needed to go on it. So I take 3mg tablet per day to keep my INR between 2 & 3 which has worked well and is stable so only have to have a blood test every two months which is a five min job at my Local Stafford County Hospital.

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It's certainly an option Mike...thus far nobody has said they have this problem whilst taking Warfarin. Thanks.

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I also suffer from leg pain and lower body pain. I have permanent afib which is under control now with drugs but I believe so many drugs cause muscle pain which is almost an unavoidable side effect. However, for my keen pain there are some remedies I use which seem to work which I read in "The People's Pharmacy" book. I buy a box of golden raisins and soak them in one pint of gin for several days until liquid is absorbed and then take 9 raisins every day. And if you still feel pain, you can buy Certo (the liquid you use to preserve fruit) and put one packet into 64 ozs. of grape juice and drink 6 to 8 ozs. daily. Just some old fashioned remedies that may work for you. It seems crazy I know but why argue with success.

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Interesting! At this moment in time, just got up feeling as if my legs have been transferred from someone who has just run 50 miles never mind a marathon, anything is under consideration! Seems like your remedies can do little harm lake buddy. Thank you.

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Ps the predictive text added the y, but seems appropriate so I won't apologise!

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offtherecord

Hello, I just wonder whether you have had a blood test for inflammation done recently? Particularly ERS (erythrocyte sedimentation rate). I ask because lots of people with AF also have polymyalgia rheumatica, which is an inflammatory autoimmune condition. I have had both, and other inflammatory conditions as well. I finally worked out what was the common denominator, and am trying to address it through diet, with the help of a nutritionist. Don't delay, inflammation can ruin your life. Good luck!

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That's so interesting Hilary. When I last went to the GP I asked very generally about inflammation, being ignorant myself, and she was totally unable to reply in a useful to me way, although she has been very supportive. I shall pursue that, thank you. I shall need to see a different GP anyway as the one I refer to is on maternity leave.

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Hilaryjm, interesting reply. I have a connective tissue disease and have had various diagnoses over the years. I know that there is a connection. ESR and C reactive protein are always elevated. Had virus attack my heart in 2009 which started the AFIB. Was good for about 2 years and then back to AFIB. Just got out of hospital for high INR 8.9, asked Dr. At hospital to check my inflammatory markers and he would not do it. If anybody has any thoughts on this would love to hear.

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For what it’s worth, when I gave up all dairy products my arthritis disappeared. I have moderate arthritis in my hips that never bother me and in my hands. My hands will barely ache at times. Way better than before giving up dairy. I do also now eat completely plant based.

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Thank you jetol, I'm glad that is working for you. I am already on a very low dairy regime and eat very little meat, although some fish and the occasional egg, literally, so not a million miles away from your regime. I also don't drink alcohol except for the odd celebration (for that matter have never smoked and was until the onset of this pretty active). There is so much to assess!

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I have tried all of that.

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jetol interesting about dairy. I was already grain free, have become dairy free as well now, thanks to the nutritionist. So I pretty much follow a paleo diet, but including nuts and seeds now, also alas no alcohol. I did enjoy my wine (and cheese of course!).

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Just agreed to change from Edoxaban to a.n.other DOAC depending on what the GP thinks. Let's see!

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