Good morning! This is my first post. I was diagnosed with myeloma eleven years ago and AF was noted at the time. I had poor lower limb circulation and blue extremities but no one took any notice until I required a pacemaker five years ago. I’ve been fine in myself, rather enjoyed the intellectual interest and physical challenges and involved myself heavily in health research. But my morale has taken a knock with a stroke on 18 January that affected my speech for a day, then complete recovery. Last week I had a DVT, clot removed last Wednesday. It’s painful and makes walking difficult. While I’ve been rather sailing along the last eleven years, these AF related problems frighten me, real threats of disability and death. Dr Google suggests a regime of exercise, high protein nutrition and medication, especially thinners, and the problems can be reversed and return to fitness. Is that right? Do I walk through the pain or start gently? What are your experiences?
AF clots: Good morning! This is my... - Atrial Fibrillati...
AF clots
Hi Norton and welcome.
I don’t think we should comment on whether or not exercise is advisable with a DVT, you must ask your doctor for advise on your particular circumstance which are obviously complex and not straightforward Lone AF. Generally though, exercise is a very good thing, especially to prevent DVT’s forming.
I can say however that anyone with AF is normally advised to take an anticoagulant (they aren’t blood thinners) as a prophylactic treatment against AF induced strokes. In your case I would be asking your doctor about this as soon as possible. If you already have clots you may have been prescribed other medications to help so we really shouldn’t comment further as we aren’t doctors and even if some contributors are, we don’t have access to your previous medical notes.
Modern anticoagulants known as DOACs - direct oral anticoagulants - are very easy to take and do not require testing.
Which country are you in? The advice sometimes differs between countries but here in Europe, anticoagulation would normally be advised for anyone with frequent Lone AF unless there was a really important reason for you not to take them, which may apply in your case. Doctors have a way of charting who should be taking them and who not so please only be advised by doctors who know about and treat your complex needs.
Best wishes CD.
I’m in London UK. I’ve been prescribed tinzaparin, an anti thrombotic that dissolves clots, which seems like a good idea, but on google I’m alarmed to see kidney disease is a contraindication. I’ve got CKD as a consequence of myeloma, so I better discuss that with the prescriber. Yes, you are quite right there is a risk of giving uninformed advice, but the regime of exercise is from the post surgery discharge leaflet that is very clear mobility is important. What I’m really asking is personal experience of getting out of this post clot phase of limping and pain in my leg back to walking two miles most days to and from Hampstead Heath where I have swum several times a week in open water through the winter.
Hello and welcome to your world. Interesting to rea about your Myeloma as my brother in law who lives in France is theonlt other person I know to have this blood cancer. Fortunately for him he lioves ony a short way form teh hospital where Proffesor???? operates. one of the world experts in the condition.
Whata completely ps=uzzles me is why you have not been on anticoagulants (Not blood thinners please as they don't ) since you were diagnosed. It should be the first duty of anay doctor treaing AF to assess stroke risk adn medicate as appropriate. I know that there is no contra-indication here as BIL is on warfarin following an artifical valve fitment many years ago.
Regarding treatment for AF, all and any such treatment is only for symptom control and quality of life (QOL) although controlling hearat rate is important to prevent additional damage to the atrium which might otherwise lead to heart failure.
I can't advise regarding how much exercise to take and suggests that you ask the treating team this question. I do suggest also that you go to AF Association main website and read all you can about this mongrel condition.
My brother was diagnosed with multiple myeloma c 15 years ago .....he was told in his case(His GP had ignored his back aches for more than a year) it was terminal.Along came another specialist who treated him with Thalidimide and some chemo. He is still very much here at 89.....so very lucky.
So am I!! Thank you.
Great! At the beginning I was told I’d be dead in six months. That was eleven years ago. The personal experience in these answers is exactly what I need. Thank you all.
Thank you. Very helpful. I’ve been on site and found useful information.
I totally agree with what others wrote, and the need to speak with your personal doctor. I am not a medical professional, but I do have AFib and had an unprovoked DVT and related bilateral PE. After unsuccessful treatment with NOAC's (newer anticoagulants) I was put on Warfarin.
I never thought there'd come a day when I was almost back to normal, but it finally happened. Personally it took a good 1-1/2 years, a gradual process. Each week I seemed to feel better and better. I did have some bad days, but basically I just listened to my body and treated myself accordingly. I think everyone should do the same, especially since we're all different and heal differently. It just seems to take time, and a good sense of humor always helps!
My oldest brother also had Multiple Myeloma, and I remember a lot of what he went through with that monster! However, the medical community is making great strides with new research and treatments for myeloma, it's actually amazing to me. I still keep up with several myeloma foundations and get their newsletters. So you never know what good thing might be right around the corner!
Wishing you all the best, stay safe & be well! 🕊️🌻
Thank you. My myeloma has been unproblematic for three years, currently on monthly immunotherapy with paraproteins and light chains too low to measure. Now AF and consequences is my management issue. Seems like exercise, especially walking, is the key. Thank you.
That is fantastic news about your MM, may it continue like that till you're a 102! 
And I apologize for not answering your original question, I tried to but it didn't come out right. I was replying @ 3AM in the middle of a major thunderstorm with power outages so I henpecked an answer at best!
What I meant was I think we need to listen to our bodies as to how much and when to exercise after a DVT/AFib episode . I wouldn't recommend "pushing through the pain", but take it slow and perhaps rest on those days, or do a light activity. On better days, by all means, be as active as you can, especially by walking. My cardiologists suggested to walk as much as I possibly could, and increase as my body allowed. So after almost two years, I am close to "normal" pre-DVT/PE/AFib. Hope that clarifies! 
Brilliant advice! Yes, I’m advised to walk, rest when it hurts, and then walk again. Xx
I see that people have given you good advice. As far as exercise goes, ask your clinicians whether a rowing machine would help, as that improves strength and circulation without impact.
Thank you. Yes, good advice.
Yes I recovered fully from a very late diagnosed dvt in the leg but it took 10+ years of walking a mile x2 per day & raising my leg wherever possible as well as when taking a bath putting it in and out of the hot water (hot & cold is a circulation boost)and raising it vertical to 'drain' it. In bed I have a small cushion at the end of the bed to raise it slightly when I feel it during the night. As Siouxbee says above, I suggest you listen to your body as your requirements will be individual but I hope something there helps. If you need a second opinion thewhiteleyclinic.co.uk/con... I consulted Professor Whitely at Guildford before he had all the clinics.
PS In the early days it did ache intermittently and I learnt not to drive more than 1.5 hours without exercise and raising it. I do the same now even though it doesn't ache anymore. Fingers crossed for you.
Exactly what I need to know, how you manage. Thank you.
Not what you're looking for?
You may also like...
AF and blood clots
Blood tests for clotting
This and That about AF
AF
AF and breathlessness
AF
Apixaban and blood clotting
AF
Echocardiogram and AF
