Post-DVT leg fatigue/pain

[strangewings]

I had a DVT (multiple clots) in Feb. and have just confirmed with a follow-up ultrasound that the clots are resolved. However, I have had ongoing swelling of that leg. There was no swelling when the clot first presented. There isn’t any pain, normally, but if I use the calf muscle riding or walking up a steep hill or similar, the calf feels fatigued almost immediately. If I return to my normal activity level from before the clot, the swelling can increase.

I have not regularly been wearing a compression sock or wrap but am going to start. Since the leg feels fine most of the time, it’s a little frustrating to feel “normal” and then try to go back to my normal activity level and can’t. My horse is very safe, but I can tell that I’m a little inhibited in the use of that leg, so if he does something sudden and unusual for whatever reason, I’m not sure how my body will react. This is more of a concern if I’m working in my jump tack (2-point especially) - my leg feels fatigued almost immediately. In my dressage tack, posting can be a little uncomfortable, but I ‘work out of it’ to some extent, and sitting is very comfortable and feels safe and stable. I am not/have not/will not jump while I’m on blood thinners, or more generally during the COVID crisis.

Does anyone else here have similar experiences, advice, and/or exercises on or off horse that could be used to help rehab my leg? The plan I just made with my Dr. is to wear compression sleeves and do better with staying hydrated for a couple more weeks, then potentially do additional testing and/or consult with a vascular specialist. (She’d sign off on this now, I have chosen to wait.)

[Kimstar]

Firstly, I would have to question whether the clot(s) is/are truly resolved if you are experiencing fatigue or cramping in the affected leg.

I have an enormous clot in my left leg that first occurred in 1981 and in 1999 (minor) and then again in 2000 when I underwent chemotherapy for breast cancer (major re-occurrence). The original clot goes from mid-calf up into my groin in the main femoral vein of my left leg. After the first occurrence, I was on Warfarin initially in '81 and also in '99 for six months each time and am now permanently on anti-coagulants. (I am Factor V Leiden positive.)

The first time I clotted, there was a permanent tendency for my leg to swell when I’d had it down when at work or after walking around for some time, but this lessened to a degree over months/years and I got along quite well riding. And I had a stool at work (desk job) that I used religiously to elevate my leg whenever possible. My left leg has always been my weak one though, so I tended to pay extra attention while riding to ensure I was using it correctly and to help match the strength of my right leg more.

The second clot in '99 was pretty minor (just behind my knee and quite small). I had a bit of cramping in my calf muscle, but that subsided fairly quickly and there was no noticeable change to my leg.

The third time I clotted in 2000, I was not so fortunate: my left leg is permanently swollen and discoloured from the last, very severe episode. (My leg was swollen to twice its normal size that time and I could barely walk.) My left leg will “seize up” and not want to work very well especially when climbing more than a few stairs, but I can walk around fairly normally. When I still rode, I didn’t have too many issues with it. I also have some very large, very varicose “wormy-looking” veins on the surface of my left thigh which is a result of my secondary circulation attempting to take over much of the work of the femoral vein.

So, with all that said, from my experience, I am not certain that your clot is as resolved as you or your doctor think it is, especially since it occurred in February and it is now only April. For your muscles to be cramping and the leg swelling, my feeling is that the blood flow is still restricted. I’m not a doctor, but that’s what I think is probably going on, despite the ultrasound findings.

You don’t mention if you were/are on anti-coagulants. I was treated for six months following the first two clots with Warfarin. I know it’s “old-fashioned” and requires regular testing to ensure blood levels are at the correct point, but it’s proven and safe. The newer drugs do not require testing, but my question has always been: how do you know if it’s working until it isn’t and you end up with another clot?

Also, when I had the first clot, I asked about the possibility of removal. At the time, there was an enzyme treatment that dissolved clots, but my doctor (specialist) did not recommend it as afterwards it had been found that clots frequently reoccurred after approximately six months.

My suggestion is to take your doctor’s offer for a referral to a specialist. And I wouldn’t try additional exercises to strengthen your leg until you have the answers.

[strangewings]

Thank you for this feedback and for sharing your experience!

I started Eliquis in Feb. and will be on it until August. I did have follow-up bloodwork done, including a check for Factor V Leiden (negative). The bloodwork shows the Eliquis is working as it should. It seems the second ultrasound did not have the clearest view of the peroneal vein (one of 3 presenting with a clot in the original ultrasound), so it is definitely possible the clot in that vein is not fully resolved. They did not tell me how large or extensive the clots were, but I know they did not extend past my calf.

I have not been experiencing cramping since after the first few days on the Eliquis, just the fatigued feeling and swelling. But I am inclined to believe you about the clot not being fully resolved…

[TheBrownHorse]

Hi fellow clot survivor!

I had multiple bi-lateral PE’s, I’m on Xarelto for life, so my first question is are you still on blood thinners?

Secondly, I find compression (second to blood thinners) to be the most helpful, I use a compression stocking during exercise/riding on my left leg that I have vascular issues in because it swells, and it’s pretty much the only way I have any sort of control with the swelling. I get reoccurring clots in my left leg if I do not take thinners, the other thing I find most helpful is elevating the leg when not using it. You’re early in recovery, so elevating the leg, compression, rest is all very important.

Also, fatigue is to be expected! Take it easy, rest, your body has been through a lot.

[strangewings]

@TheBrownHorse, thank you! I think the thing that has been confusing is that I’ll ask my Dr.s if there’s anything I should know or do, like restrict exercise, and they all basically said no, you’ll be fine in a couple weeks, you should be able to resume your normal activities right away. So though it has been improving, I am not at all back to my old activity level.

I am still on blood thinners (Eliquis). I have been using a compression stocking on my leg, and that is helping. I haven’t really settled on a good way to elevate the leg when I’m working, but I have a few more things to try.

[BAC]

@strangewings

@TheBrownHorse, thank you! I think the thing that has been confusing is that I’ll ask my Dr.s if there’s anything I should know or do, like restrict exercise, and they all basically said no, you’ll be fine in a couple weeks, you should be able to resume your normal activities right away. So though it has been improving, I am not at all back to my old activity level.

I am still on blood thinners (Eliquis). I have been using a compression stocking on my leg, and that is helping. I haven’t really settled on a good way to elevate the leg when I’m working, but I have a few more things to try.

How are you doing now OP? I had a DVT with PE years ago, and after six months I still had leg fatigue and swelling after doing too much walking, exercise or just being on my feet. I went to a specialist at a top hospital and was told that while most of the healing would occur during the first six months, there would be some residual healing during the next six months that while not as dramatic would make a big difference in my overall recovery and he was right. I was also encouraged to exercise as much as I wanted to, my body just had to learn to deal with it and now I would never know I had an issue.

The biggest help was the specialist telling me to put a board under the foot of my mattress while I slept, high enough so that my legs were above the level of my heart. It made a HUGE difference that the residual swelling would disappear overnight and took much longer to come back each day. I hope you are doing much better now.

[strangewings]

@BAC, thanks for asking! There has been slow but clear improvement since my last post. My last run was 4.5 miles. A major change riding has been in warming up in 2 point. For a few months, it would be very painful for the first 15 minutes or so, then after a walk break, I’d be able to sustain 2 point without pain. So I’ve felt safe to start jumping again (on my seasoned, gentlemanly gelding). Doing dressage schooling without stirrups actually helps a lot.

Still on Eliquis and wear a calf wrap daily. Occasionally forget one or the other - definitely still feel a difference when this happens, but there is not too much extra swelling. I just had a follow up with my GP, who has given me a referral to a vascular specialist. I am on my feet a lot most days, but can switch positions and elevate my leg if it is feeling funny.

6 months + 6 months is very heartening at this point. That sounds reasonable based on the transition I felt in my day-to-day over the last two months. My leg is still definitely not normal, but it is not hindering me from normal activity anymore, if that makes sense. I will try adding the leg elevation at night.

[BAC]

It was a vascular specialist who told me about raising my bed and that I would gradually get more healing during the next six month period so good luck! My leg felt more like what I expect a horse who is stocked up must feel like, I was playing tennis (not riding) at the time and the concussion from the running around the court, especially when on a hard court, would cause filling in my bad leg. I wore a stocking like compression wrap that went from my toes to the top of my thigh but I could see how dependent I was becoming on it so I gradually weaned myself off of it. It made me realize the same might be happening with horses. In time my body got used to the demands I was making on it and eventually it was totally back to normal, so don’t lose hope.

[strangewings]

@BAC, the vascular specialist my GP referred me to doesn’t “do dvts”, so the appointments are for venous insufficiency/pronounced vein. While that’s accurate at this point in time, should I be concerned about this? What happens if I go off the blood thinners and the clot recurs? Does “we don’t handle dvt’s” just mean that they don’t diagnose and do initial treatment for them?

[BAC]

@strangewings

@BAC, the vascular specialist my GP referred me to doesn’t “do dvts”, so the appointments are for venous insufficiency/pronounced vein. While that’s accurate at this point in time, should I be concerned about this? What happens if I go off the blood thinners and the clot recurs? Does “we don’t handle dvt’s” just mean that they don’t diagnose and do initial treatment for them?

I don’t know the answers to your questions but I am surprised the vascular specialist doesn’t handle DVTs. I think I would ask your GP for another referral or research one on your own.

I do know that whether you remain on anti-coagulants or not depends on what caused the initial DVT. In my case, I had to remain on them for 6 months, then come off them for long enough for them to get out of my system and then do extensive blood work to determine the cause of my DVT/PE. It turns out I have a clotting disorder that would require lifelong treatment with anti-coagulants. Often it is due to a single event, such as a fall and then it is deemed to be a one time occurrence and treatment would consist of 6-9 months of anti-coagulants. I do know someone who was taken off the meds after 6 months and developed another DVT/PE and so now he is on them for life. I think you need to see someone who specializes in these issues so that you get the right treatment. Living on anti-coagulants for life is no picnic but under certain circumstances it might be lifesaving. I was told its not IF I develop another DVT/PE but WHEN I will do so. I was told by a number of doctors that I was lucky to survive the first one so I’m not taking any chances.

[CHT]

DVT Club question:

I was diagnosed with a large DVT in my right calf in September. I have been on Xarelto since then. During this time I would feel a very occasional popping feeling in my calf, but starting yesterday has been happening throughout the day, and if I press on the area, I can feel it: it’s like a singular pulse. Now it is less popping and more feels like a herd of miniature hermit crabs scurrying on a small portion of my calf.

My doctor has no idea if this is normal. Suggested an ultrasound, but a non-urgent ultrasound close to me won’t happen until March 8. Elevating it helps. Any one have anything similar?

[strangewings]

Can’t say I have felt anything like this. I feel a pulling or tugging sensation sometimes (still - 3 years later), but the predominant feeling was like extreme muscle exhaustion when I would try to walk too much (up hills was terribly painful). This gradually improved.

Based on your description, I would be a little concerned about venous insufficiency and those sensations being a consequence of blood flowing backwards through the valves in your veins. Is a telehealth or video visit with a specialist an option in the short term? They will certainly still want an ultrasound, but they may be able to ask more specific questions and give you more information now. And then, they would be the best people to review the US to determine whether it is something like venous insufficiency, and also prescribe compression hose at the right strength to help with this.

[CHT]

Ultrasound today showed clot cleared, so that is good, but had extreme pain in my shin/calf last night preventing sleep(on going, but comes and goes), and no explaination for pain or sensations. It still feels very odd. Somewhat frustrating to have no answer, but good clot gone.

[Kimstar]

Honestly, I would be concerned about the pain in your calf. But pain out of the blue is NOT normal! Unless your muscles were cramping? (I’m still prone to charlie horses decades later, but my clot is still very much there and is HUGE.)

And what type of ultrasound did you have and done by whom? Years (decades) ago, it was specifically a Doppler ultrasound that was used for determining my initial DVT. However, I have no idea what the differences in current ultrasound types are.

With respect to the “popping/hermit crabs” feeling in your leg, I still occasionally get what I would describe as a “bubbling” feeling in my femoral vein that I believe is the walls of the blood vessel having small spasms for a short period. It’s nothing I’ve ever worried about although it feels weird!

I do know that not long after (within a year or so) after my initial DVT, I was playing polo and was involved in a “ride-off” for the ball and took a fairly hard hit on my lower left (bad) leg. I did feel a definite “pop” in the calf and was told it may have been one of the small venous valves giving way due to the hit. (I was no longer anti-coagulated at the time.) I retired from polo shortly thereafter as I didn’t feel the risk warranted continuing! (It was a secondary equine pursuit anyway!)

[CHT]

A blood vessel spasming makes sense and makes me feel a bit better/less crazy. The ultrasound machine was the same one that diagnosed my DVT, so I feel confident in it and the tech.

I am wondering if the calf/shin pain is related to being on both an anti-coagulant and Lyrica. I was reading on Lyrica and I guess it affects circulation too. It happens more if I wear winter boots and was pretty much gone the week I wore only runners. There isn’t bruising though, so I still don’t understand it, but maybe my pharmacist can give me answers. I am hopefully that I will be done with the Xarelto in a month regardless, so will see what happens…I can’t not wear boots in mud season (April/May)

[Kimstar]

I was thinking about your calf/shin pain - perhaps ask your GP if it could be sciatica.

I very recently woke up one night with severe pain on the top of my left instep that traveled up my calf a bit. I was worried as it was painful to the touch but it didn’t feel like another clot as it felt a bit better if I moved around and a clot will cause muscle cramping. The pain persisted for several days but did improve, however my lower back became a bit achy as the pain decreased in my foot and leg. Very strange, however according to “Dr. Internet” the leg pain could have been sciatica and the ache in my lower back muscles seemed to confirm that. My conclusion is that it was caused by my tending to sleep slightly skewed onto my left buttock when sleeping on my back and also by my very poor posture (caused by other physical issues) while sitting in my computer chair (which I am doing to type this)!

You recently broke your pelvis no? My thinking is there might be some issues there that are causing you to have leg pains. (Note: I’m not a doctor in real-life and don’t portray one on TV!)

[CHT]

Thanks for the idea, yes, I recently broke my pelvis. No back pain so far though! I do sleep skewed though. The shin isn’t painful to the touch, although when she ultrasounded the back of my calf, the shin did hurt, so I wonder if it is a bit of referred pain? My physical therapist doesn’t understand it either.

[CHT]

It took this long to get a diagnoses to my shin pain, but you were right: venous insufficiency! Start therapy for it Thursday, and was started with light compression stockings. It took a while to diagnose as it isn’t presenting in a typical fashion: I don’t have pain with activity, but rather significantly after, fortunately I was referred to a specialty clinic and they had seen this presentation before.

[strangewings]

Wow! Thanks for following up and letting us know! How’s the rest of your healing going? You had a pelvic fracture iirc?

[CHT]

I was doing well, but the last 6 weeks have been less good, but on the opposite side - getting a bone scan Thursday and then back to the surgeon next month. I don’t fully understand, but it sounds like there may have been more instability than they thought, and there is extra bone at the public symphysis? I don’t know, hopefully the surgeon can give better answers. Feeling a tad depressed to be honest. Nice to at least not feel crazy about my leg hurting - answers bring hope and a started physio for it, and compression therapy…I go back to that doctor in November too.