Deep Vein Thrombosis (DVT) Support Group
Deep-vein thrombosis, also known as deep-venous thrombosis or DVT, is the formation of a blood clot ("thrombus") in a deep vein. It can be caused by something preventing blood from circulating or clotting normally. Join the support group if you are coping with DVT and find others who are going through the same challenges.
Hey all - I came across this site while searching for pain relief suggestions. I am pretty much at my wits end.
For background, 48 yo, partially tore an ankle ligament in March of 2014 that never quite healed. Saw an orthopedic specialist and put on the boot October 19 2015, experienced significant pain up the shin within a week, and up the leg by the following week. I had a PE on Nov. 7th (ears ringing, everything went white, shortness of breath, sweating, racing heartbeat) but had no idea what PE or DVT symptoms were - symptoms were very similar to a West Nile infection I had in 2012 so I gutted it out (like an idiot I know). Nov. 17th called the orthopedic guy for the third time and they finally sent me to get an ultrasound. Found clots all the way from ankle to groin and ER CT showed PE with clots all over lungs and pulmonary artery.
Fast forward - the last 2 months have been excruciating and while my breathing has improved, I have chronic pain/pressure from the DVT(minimal improvement from day 1). Nothing seems to help reduce pain, hot or cold. Just cannot find any position or treatment - sitting or lying that alleviates the heaviness and feeling of trying to push a firehose volume of liquid through a garden hose.
Add on top of that the sharp 24/7 pain of the ligament tear and I'm having to grit my teeth to get through the day. I am having to sit in bed with my laptop - I still cannot tolerate sitting in a chair or driving for more than 30 minutes (making working an absolute challenge) and standing is not an option due to the ankle injury and it has destroyed my quality of life. I can't have surgery to repair the ankle tear because that is going to also require additional time immobilized.
Seeing my doctor on Tuesday for follow up bloodwork and review 30 days Xeralto and am hoping to have some questions put together so I can see what my options are.
Anything that has worked for you all in reducing pain or discomfort? I'm reading the stories of many many months for recovery or relief, and I am feeling like I am between a rock and a hard place with no relief in sight.
Signed - Desperate in Dallas
For background, 48 yo, partially tore an ankle ligament in March of 2014 that never quite healed. Saw an orthopedic specialist and put on the boot October 19 2015, experienced significant pain up the shin within a week, and up the leg by the following week. I had a PE on Nov. 7th (ears ringing, everything went white, shortness of breath, sweating, racing heartbeat) but had no idea what PE or DVT symptoms were - symptoms were very similar to a West Nile infection I had in 2012 so I gutted it out (like an idiot I know). Nov. 17th called the orthopedic guy for the third time and they finally sent me to get an ultrasound. Found clots all the way from ankle to groin and ER CT showed PE with clots all over lungs and pulmonary artery.
Fast forward - the last 2 months have been excruciating and while my breathing has improved, I have chronic pain/pressure from the DVT(minimal improvement from day 1). Nothing seems to help reduce pain, hot or cold. Just cannot find any position or treatment - sitting or lying that alleviates the heaviness and feeling of trying to push a firehose volume of liquid through a garden hose.
Add on top of that the sharp 24/7 pain of the ligament tear and I'm having to grit my teeth to get through the day. I am having to sit in bed with my laptop - I still cannot tolerate sitting in a chair or driving for more than 30 minutes (making working an absolute challenge) and standing is not an option due to the ankle injury and it has destroyed my quality of life. I can't have surgery to repair the ankle tear because that is going to also require additional time immobilized.
Seeing my doctor on Tuesday for follow up bloodwork and review 30 days Xeralto and am hoping to have some questions put together so I can see what my options are.
Anything that has worked for you all in reducing pain or discomfort? I'm reading the stories of many many months for recovery or relief, and I am feeling like I am between a rock and a hard place with no relief in sight.
Signed - Desperate in Dallas
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
I can relate to the pain sitting.. That was my main complaint and I still have some trouble but it's improved a lot since last fall (a little more than a year post DVTs).
For me, the relief came when my Dr asked me where I had the most pain/swelling. I told him it was the middle back of my upper leg which made sitting painful. He told me that I needed compression pantyhose. I'm sure you are cringing hearing that, but they actually make them for men and it truly was the turning point for me as far as being able to sit. I'm glad you have a dr appt tomorrow, maybe you can ask about that and other suggestions he could have. Not sure what your options are with the torn ligament, but sometimes you have to press your dr, and be very specific to get the help you need.
Also, on the advice in the beginning from a couple of others here, I have a short plastic folding stool I can take with me anywhere to get my foot on the bad leg elevated when having to sit, so it takes the pressure off the tender area. That is a big help.
Make a list and press your Dr for as much help as he can give you.
Everyone here can relate to your frustration. We've all felt it. I didn't think it would ever get better when I first had the DVTs, but it has.
Others will be commenting here soon.
This place is a great source of support and advice.
Hang in there!
My doc offered me pain meds for the DVT pain. Nothing hard core, just darvocet, to take the edge off. So it didn't kill the pain entirely but enough where I could get some sleep and function a bit during the day. I actually never took a full dose because I didn't want to feel out of it during the day. It helped. Again, didn't kill the pain entirely but enough to handle it. I think I took those for a month or two.
Also, like mrsbigleg said, ask your doc if compression stockings would be right for you. I also slept with a pillow under my leg or between my legs if sleeping on my side and that helped. DVTs hurt, especially once your on treatment. A lot is happening in your leg to heal and healing hurts.
Putting the pieces together I probably had an issue with my ankle for a while as I had numbness/cold foot for several months, thought I had punched a nerve or something. Flew to Hawaii in September and wouldn't be surprised if that set the stage for when the boot when on a month later.
I'm not averse to stockings, I would do anything right now. The Dr. Specifically did not want me using them initially for whatever reason but that is on the table for review.
Surpringly, if I sit in the bath it helps for a short while. Ice doesn't work. With respect to the painkillers, the difficulty for me is the loss of clarity/thinking while under the influence. I've managed to keep my job but it requires critical thinking and client interaction so I am in a catch 22 there. Basic Norco doesn't even dull the pain just makes me dull :-)
I'm hoping to get some clarity around a time frame to fix my ankle, but he wouldn't even consider the thought before (and I am sure rightly so). I've tried wrapping, ankle braces all which become uncomfortable due to the swelling. The ankle makes things difficult to sleep even with it braced it still flops around and causes stress on the ligament. Even dosed on ambien im still so fractured sleeping.
I do feel best in the morning right out of bed, but as soon as I am mobile or sitting down (home office or propped in bed) it starts in again.
Rather cathartic to get the words out even though I feel like I'm whining!. I'm fortunate my wife is a trooper. I was her caregiver all last year after a cancer diagnosis so she's the one taking care of me now. We had all of about 4 hours to celebrate the end of chemo before I got admitted to the ER (she's cancer free after chemo/radiation/surgery and more chemo) so we have a lot to be grateful for. Just hard to imagine feeling like this for months it's a daunting task to stay present one more minute/hour/day.
I hope they will be able to get your ankle taken care of soon. Let us know how your Dr appt goes.
At this point, you may find some comfort reading this, as I did in the beginning. http://patientblog.clotconnect.org/2012/02/28/psychological-impact-of-having-a-blood-clot/
Like you, I am thankful to have an very supportive spouse. He listened to my frustrations with pain/recovery. I felt like I complained all day in the beginning, but if I wouldn't have gotten it out I would have imploded.
Reading other's posts on here has helped me cope. I've often searched the site for different issues that would come up and find good advice from others here.
Hoping your Dr appt goes well. :)
You're definitely between a rock and a hard place. On one hand, they probably want the clots to get more stable (and/or resolve) before they try doing ankle surgery. But, on the other hand, your entire quality of life is being negatively impacted by this.
I do wonder if they are avoiding stockings with you because of the ligament. I can't imagine that the pressure and squeezing would be good for that injury.
For me, I got a lot of relief from warm compresses. Just one of those packs that you heat in the microwave. It always seemed to help with the pain. Didn't get rid of it... just helped. I also kept my leg elevated as much as possible. If I was having issues, elevating my leg and adding heat generally helped for a while.
I wish I had something better to give you. I hope your doctor can give you some suggestions and can offer you a light at the end of the tunnel in terms of surgery options and recovery. Unfortunately, with clots, recovery often involves a lot of waiting while your body resolves them.
Good luck! Keep us posted!
Doc thinks I'm having nerve pain in addition to everything else. Having a nerve study tomorrow and have been taking lyrica for a week. Seemed like the first couple of days were marginally better but now back to the same. The sensitivity issue was why he didn't have me wear compression stockings to begin with. Still have to wait before considering surgery. Hey I get a handicap sticker now!
Had another ultrasound today. Arteries are working ok but I am still blocked from ankle to groin with the exception of some of the superficial veins. Chest has been really really heavy after a long day working, but fortunately no shortness of breath or anything else that would freak me.
I'll see the doctor in another week and a half after he's had a chance to review the reports. Hard to sit here and ponder such a nominal improvement or lack thereof!
I appreciate all the comments and thank you for the encouragement
I remember my chest feeling heavy after my PE in '93. I would have to sit down wherever I was and rest a bit. I called it "hitting the wall". That happened to me for a couple of years on and off if I overdid it, then back to normal.
Thanks for the update!
Multiple follow up after tests.
Had another Doppler and the results were unchanged- still occluded from ankle to groin with the exception of a small portion of calf. Peripheral veins doing all the work. Arteries working fine.
Diagnosed with reflex sympathetic dystrophy after nerve conduction test. Also had an MRI of back and L4 and L5 are bulging and putting pressure on other nerves. Back issues have worsened because I have had to sit in bed to work.
Saw my orthopedic surgeon he was genuinely heartbroken for me. Scheduling ankle surgery. Probably next Wednesday to repair the tear and at least get the mechanical pain to start going away
Gave me some pain meds and then getting a nerve blocker shot for the reflex sympathetic dystrophy nerve pain on Thursday
Started wearing compression socks and have helped the swelling but uncomfortable bc of the RSD.
Took Percocet last night and it helped. I had been averse to using it since I take Nuvigill during the day due to sleep issues/narcolepsy. Just don't want to be on a chemical romance but I finally reached the tap out point. Way too many nights crying and dying in pain.
Seeing reg doctor tomorrow and see what next step is.
I'm keeping a good thought for you!
I do hope that you're able to get some decent sleep, even if it is with pharmaceutical assistance. EVERYTHING seems worse if you're not sleeping well. It's so much easier to cope if you're well rested.
Please keep us updated! Sending good thoughts your way!
Thats the first step in recovery - fixing the mechanical issue.
Results back from the neurologist diagnoses is CRPS in addition to the L4 L5 lumbar nerve impingement. Upped my Lyrica dose to 300mg day and have seen negligible improvement. Hoping that if and when the clots dissolve in the foot that might improve.
Having sympathetic nerve block surgery on monday, having to switch from Xarelto to Lovenox has been a pain. Basically 10 days of injections - ive got small bruising so Ill be happy to switch back to Xarelto on Tuesday.
So a couple weeks recovery here will at least remove one of the painful issues. Clots appear they are going to be a multi month/year problem. Who knows whats in store with the CRPS.
Gave me a popliteal nerve block and that was great, 48 hours of numbness was a relief. However by Friday morning I was dying, both from the surgery itself, DVT related pain, and the CRPS (this CRPS is no joke - feel like I have molten lava poured in my foot).
So I am taking Oxycodone, Lyrica for the nerve pain, and then ambien to sleep. Had a really hard time sleeping Friday both during day and that night. Yesterday I woke up with what seemed like chest congestion, sweating, difficulty catching my breath and a high pulse rate - just felt really really sick and I would apnea constantly and could not nap. Got an email from my ResMed CPAP monitor telling me I had a very high rate of Apnea's in the last couple days.Went from an average of 1.5 to 15x an hour.
Off to the ER, really felt like I was having another PE. CT came back negative thankfully but this whole anxiety is ridiculous. Already hit my max out of pocket so I didn't hesitate to go to the ER.
Having sympathetic nerve block for the CRPS done tomorrow morning - will be a relief to get off the Lovenox and be done with surgical procedures for a few. Hopeful i can get some reduction in pain from the CRPS...its a beast.
No answers for the clots - clearly that's an ongoing frustrating issue that doesn't appear to be resolving any time soon.
I've had a massive PE and multiple DVTs. What I found works best for the pain was as soon as I got home from work, slip into loose fitting clothing, lose anything on my feet and lay on the couch with my feet elevated and a small heater providing gentle heat on them.
I'm no fan of the sheer compression socks and feel that with how they bind at the top, they may be causing more problems than they solve. You may want to try more comfortable alternatives. I've Sigvaris socks provide good compression without being so hard to put on and very comfortable to wear.
Fixing the torn ligament should help with your clotting as it relieves a source of persistent inflammation. It also helps to "shop around" for different anticoagulants if ultrasound reveals your clots aren't resolving. I've tried every anticoagulant available and all failed (even Lovenox) until I was put on Elequis. Thank goodness it worked, as my filter was nearly clogged.
Overall, don't let yourself get down. These issues do take a lot of time to resolve but it seems like you're on the right trail.
Best wishes to you.
Started rehab on the ankle and its a tough one. Developed calf pain later in the week, felt like a muscle strain, but only hurts when I walk, at rest there is no pain. Now I am hypersensitive about another clot.
DVT pain is still full blown - wish I could post a picture of what my foot looks like after standing for 30 seconds.
Meeting with a Hematologist and then interventional radiologist next week. Maybe you guys can talk me off the ledge here but almost 5 months post DVT and absolutely no progress in body absorbing anything. Losing my mind here!