In the first days, weeks, and even months after being released from the hospital there is a lot to worry about – medications, doctor’s appointments, follow-up care – not to mention an adjustment to a whole new lifestyle, one that might even be filled with pain, new feelings and worry. Experiencing a DVT, PE, or other blood clotting incident can change everything about our lives – right down to the tiniest detail. It can have far-reaching effects that we might not even notice until months or years down the line. It can be the smallest changes that affect us in big ways. One of those long-term, and potentially disabling complications is post-thrombotic syndrome (PTS).
The reminder that yet another thing may be permanently different came to me in a pair of previously-deemed cute pair of winter boots. I did it right. I kept the heel low, got the pair with the calf extender, and made sure they weren’t too stiff. I tried them on, walked around the store, and wore them at home. Of course, the second day I wore them outside, I realized I couldn’t handle them. Not only could I not handle them, but I was also afraid of them. I took them off in a fit of panic, actually, and drove home in my socks. I can no longer stand the feeling of something around my calf, even if it is not tight. I can’t do it. That set me back a little; I got angry (I used to love high boots), I was disheartened and I decided I won’t look cute this winter.
Even though I am 17 months out from my DVT and resulting PE, I still experience symptoms that are similar to that of the DVT. I have experienced pain, swelling, tenderness, skin discoloration, and itching. All are symptoms of PTS and can range from mild to severe. PTS develops in 20% to 50% of patients with DVT, even when appropriate anticoagulant (blood thinner) therapy is used to treat the DVT. Manifestations of PTS vary from mild clinical symptoms or signs to more symptoms such as chronic leg pain that limits activity and the ability to work, intractable edema, and leg ulcers. PTS can adversely affect the quality of life and productivity and it can also be costly.
PTS is a frequent complication of DVT. It develops in ∼20% to 50% of patients within two years of diagnosis and is severe in about 5% to 10% of cases. About 6 of 10 patients can expect to recover from DVT without any residual symptoms, 3 of 10 will have some degree of PTS, and 1 in 10 to 1 in 20 will have severe PTS, which can include leg ulcers. You can read more about how often PTS occurs from the American Society of Hematology.
The symptoms of PTS may include:
- Chronic extremity swelling
- Chronic (or waxing and waning) pain
- Unspecific discomfort of the extremity
- Diffuse aching
- Heaviness, tiredness, and cramping of extremities
- Dark skin pigmentation
- Bluish discoloration of toes/fingers, foot/hand, or diffusely of leg/arm
- Skin dryness
- Eczema
- Hardening of the skin
- Formation of varicose veins
- Skin ulcer (stasis ulcer)
- Small areas of white-gray scar tissue
- Dermatoliposclerosis (inflammation of the layer of fat under the epidermis)
Is how I am feeling all in my head?
No, PTS is not in your head! When a clot forms in a vein, the valves inside the vein can be damaged by the clot or by the surrounding inflammation. The damaged valves (as well as a residual clot) block blood returning from the leg veins back to the heart, which results in increased venous pressure in the leg, thus contributing to PTS (Vascular Disease Foundation). The pain you feel weeks, months, and even years after your DVT is very real in most cases, stemming from PTS.
I’ve had a DVT, can I prevent PTS?
As with many health ailments, prevention is the key when it comes to PTS. Wearing custom-fitted compression stockings is the best way to prevent PTS. Stockings often do not work because they are uncomfortable, but they should be to help reduce your risk of developing PTS in the long run. They should be worn during the day and while standing. You should not wear them at night. They should be worn for weeks, months, or years to control symptoms. As long as you continue to experience any type of leg swelling, wear compression stockings.
I’ve had a DVT and now have PTS, can my symptoms be treated?
There are several things you can do to help ease the pain of PTS, including:
- Elevation of extremities at rest and at night
- Graduation compression stockings (ask your doctor if this is a good option for you)
- Weight loss, maintaining a healthy weight
- Increased exercise with the strengthening of extremity muscles
- Pain management (medication, visiting a pain clinic)
- Compression pump (a battery-powered device used to stimulate blood flow)
- Vascular interventional radiology procedure: balloon opening and stenting of the narrowed vein (procedure to keep the vein open)
I have ulcers, what should I do?
As with any symptoms of PTS, keep your doctor informed of any changes or new experiences. Visits with a vein or wound care specialist may be helpful to get the best care for ulcers.
How do I know I have PTS and not a new blood clot?
Many of the signs of PTS are the same as those for new blood clots in the leg, so it is very important for you to ask your healthcare provider to look at your leg. Only a healthcare provider can tell you if your problems are from a new blood clot or from PTS. Since it can take 3 – 6 months for your blood clot symptoms to get better, it is important to discuss any new or different symptoms with your doctor as soon as possible. PTS pain and swelling symptoms will tend to lessen with rest and elevation, but would not lessen if you are suffering from a blood clot.
Emotionally, I’m a mess, is that part of PTS too?
PTS is a frequent side effect of DVT. Symptoms can come and go over time, but PTS is a chronic, lifelong condition. PTS leads to suffering and disability and is costly to society in terms of treatment. The physical and psychological implications of PTS are very real. If you were very active before PTS or worked a certain occupation, symptoms may make it difficult to return to your previous level of activity. Oftentimes, it is hard to adjust our level of expectations for ourselves while we slowly recover or make adjustments in our activities. In terms of work, some patients are forced to pursue a new line of work or even file a disability application, which can be devastating to their self-esteem, especially if they have been working their whole life. Visiting a therapist or psychologist or another trusted individual may be helpful in facing some of these issues.
Once I have PTS, will it ever go away?
Currently, there is not one way to correct the veins that contribute to PTS, but there are several things that can help. PTS is typically a lifelong diagnosis that needs continually managed.
Reader Writes In: Are you suffering from PTS? Do you wear compression stockings? How are you dealing with your diagnosis?
Share in the comments!
Click on the links below for more information about PTS, including symptoms, treatment, and care-
- Your Guide to Compression Stockings
- All About PTS (American Society of Hematology)
- Focus on PTS Flyer (Vascular Disease Foundation)
- Join the private group on Facebook
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Sara,
Once again you have offered a wealth of information that helps me to understand and learn to live post-DVT & PE. Thank you for your outstanding work. Please know that these challenges you face and share with others make a real difference. While I know it doesn’t make your suffering any easier, I must let you know this site has meant the world to me – I’m sure it does to others as well.
Hi Patty! Thanks for your feedback, I really appreciate it and am hoping I can help someone, in some stage of recovery. I am glad you were able to find some good information in this post and on this site in general. I thank you for being a part of it and for sharing your thoughts with me. It makes my day! I hope you and yours had a wonderful holiday and talk to you soon. Enjoy the New Year celebration!
HI Sara thanks for the article, I developed my a DVT from a leg injury at work, I was in the military at the time and it was a career ending event. You can not be on blood thinners while in the army.. so not only did I have my health to worry about I had to worry about my future.. I experience sever PTS ,but have learned that exercise is the best course of action for me as long as you do it at your own pace . Like you I Hate anything touching my café.. it drives me insane.. and I feel your pain about boots.. I love boots but cant ware them.. Your article helps knowing it isn’t all in my head others suffer just like I do.. but we manage and we keep going.. Thank you Wanda
Thank you so much for all of this helpful information. It is so hard to explain what we go through to others. This was very eye opening and for the first time I feel validated in many ways. Thank you so much for all you do. I have learned so much from you all and have been able to apply many things to life and been able to bring other concerns or issues to my doctor!
Hi,
I have been recently diagnosed with PTS, I had DVT 8 years back and it surfaced when I had forgotten all about it! I have a 2 inch red patch on my ankle and veins become visible on my foot every now and then. There is no pain or swelling as of now though but I see it’s gradually getting worse. I am on warfarin 7 mg but my INR levels fluctuate between 1.6 and 1.9. I do not smoke or drink and I wear grade 2 compression stockings and leg elevation at night. I am not overweight. From whatever I could gather, next thing I can probably do is to exercise and make my leg muscles strong, however there is no information available on what all exercises I should do to maintain my condition. Is it at all possible to circulate the same?
What else can I do to maintain/ improve my condition? I am 33 and a software engineer by profession.
Thanks
I have a dvt from my liver all the way to my left foot. My initial clot was 2010, I know have PTS which I developed it 2 months after my clot. I would say I am board lining on severe PTS. I feel as if it is in my head the pain that is. No one seems to be able to help control it. I push myself to keep up a normal life but I know in my heart I am only making my life a bigger living hell…. I feel so alone….
Have you looked into Nattokinase?
Sorry to jump in here but my Hemotologist & Doctor told me one can not take natto while on warrfarin. I suffer from PTS in my left calf & foot. I would do anything to get rid of it but I was told I would be risking life going off warfarrin to take
There are many doctors who don’t want to provide optimal solutions because they may entail more “work” or they require managing risks that the physician feels only makes him/her vulnerable to malpractice. They are not the kind of physician I think you need in this case. Read about Dr. Martin Milner, for example. I think you’ll find there are ways to give your body the help it needs to heal while at the same time keeping your blood from being “too thin.”
I suffered from a DVT in my left leg when I was around 18 years old. I went on the usual course of blood thinners for six months and then came off them, only to find a year down the line my DVT was still there and I then went on a further six month course of blood thinners. Third time round, I am told I am to be on blood thinners for the remainder of my life because my clot hardened and I now have occlusive/damaged veins.
When I was told the clot was still there more recently I have developed eczema all over my body. I am not sure whether this is possibly due to post-thrombotic syndrome (which I probably do have due to the damaged veins). Has any one ever experienced this? I have been on numerous steroid treatments but as soon as I stop the treatments my eczema comes straight back. It is ruining my life.
Where did your eczema appear? I was recently diagnosed with a DVT and about 4 months later I now have a rash that could be eczema in the fold of my knee? You think there’s a relationship?
Hi I was diagnosed with dvt July 16. What a shock. In time a developed a rash on shoulders, around my neck, breasts and stomach. It was so itchy and sore when I showered. When I finally got to the doctors I was given Steroid cream, it offered some relief in the end it disappeared on it’s own. Now I avoid using perfume around my neck. I’m still on blood thinner, hopefully just for another month.
This dvt has made me very conscious of every pain or swelling in my legs. Maybe not a bad thing, but I’d rather it be a less conscious thing.
I am 71 and “stopped breathing” I year 3 months ago. Diagnosed with large blood clots on both lungs and advised that I was very lucky to be alive! Working full time in mental health I was still shocked and now retiring on health grounds from the NHS. I do not feel able to cope with other peoples problems on a practical level at this time, but I know that I will be able to again in the future. My wife died of cancer aged 36 when our children were aged 1 and 5. We are all scarred for life by events at various times and for many reasons, but we still have a choice. I choose to be positive, happy, and confident in the future no matter what happens. I believe in magic. My very best wishes for the future to you all.
So True Kenneth, its our life events that make us who we are. For some of us it make us more empathetic and others become resentful. I find that magic you speak of, in my childrens smiles and their laughter, I choose to be positive. I have days though that are out of my control. This is when I battle to just get through the day. It is my husband and children that give me a reason to get up each day. They need me, apparently I’m the hub in the tyre! My husband has such a way with words. You sound like an amazing man with a heart of gold, your children should be very proud of you. Take care
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Sara,
Thank you sooooo much for this site and all the information within it. I have never gotten much of this clarity from my hematologist. I have now been diagnosed with the second blood clot (Chronic DVT), and they haven’t found a genetic nor hormonal cause. Before I got diagnosed with the 2nd clot, I suffered with Post-Thrombosis. Very scary because it felt almost identical to the initial clot without as much swelling.
Thanks again,
D Marzette Stuckey
Sara,
Thank you sooooo much for this site and all within it. I have never gotten this much clarity from either of my hematologists. I have been diagnosed with a second blood clot, and they haven’t found a genetic nor hormonal cause. Before I got diagnosed with the 2nd clot, I suffered with Post-Thrombosis. Very scary because it felt almost identical to the initial clot without as much swelling.
Thanks again,
D Marzette Stuckey
I have a question for anyone that can help. I had many blood clots in my left arm, I had no signs until I went to the ER. I was admitted and they used clot busters in my arm, one of the most painful things I have ever been through. It’s been almost 2 weeks now and I still can’t use my hand right. Half of my hand is totally numb and the rest is very weak and does not work right. Has anyone ever experienced anything like this? I don’t know if this is from the clots or the treatment. Please if anyone can help I would appreciate it.
Thanks for the information and insight- ive actually been on here previously, and here I am with three separate PE events and one DVT event. For the first two PEs I felt I was able to jump back pretty quickly, but on this go round I think the DVT is going to slow me down. 2 days out of the hopaital and my leg is barely better than when I was admitted (I stayed for 5 days in hospital) and it is so painful I have to use a walker. Talk of weeks to months recovery is upsetting because I lost my job shortly before the incident but reading your article helped gird myself for the long process ahead. Thanks again. Here is to hoping the 16 vials of blood they took at one time has some answers for me!
I am 10 weeks now following my second D V. T & P E (The first one4& 1/2 years ago) I m sure I read somewhere that the blood thinners(I m on Xarelto) doesn’t get rid of the clots. Also that for the first 6 months I could have another if I did a long car journey (I get very anxious in the car -if I m being driven. I take all the right precautions – stopping every hour running round the car and drinking plenty of water- )but it s the unforeseen traffic jams that make me nervous – or when we have an incident or just excessive speed. I can t seem to get this through to my husband I m alright when I m driving but not up to full health yet to do all the driving to our hol home 3hours away. We always end up arguing on a car journey which isn’t a good situation. Any suggestions please.
I got a dvt in my right leg behind the knee last year when i broke my foot. The clot has absorbed but 6 days agter coming off of xarelto i began getting nerve pain thdn numbness in my toes and swelling in the ankle. Im on my feet all day being a hairstylist so my pain and numbness are constant. I fear I’ll have this the rest of my life and im only 43. Its very scary and theres no cure. I diagnosed myself when my dr told my symptoms werent from having a blood clot. So i saw a neurologist and had an mri of my back to see oc my issues there were causing the symptoms in my leg and foot. The mri showed no nerve issues so the neurologist agreed with me that i post thrombotic syndrome. Thank you for the info. Carrie
Carrie, is there anything you can take to help with this? I’ve been off blood thinner for five months now. My clot is supposedly gone. My doctor is no help!!! He seems to think the pain isn’t from the DVT I had. My vascular surgeon said to excercise. I’m excercising and the pain hasn’t gone away. Sometimes makes it worse! Stabbing pain!! Have you seen “Natures Way Leg Veins” pills? It’s suppose to help with circulation but I don’t know anything about it. I was wondering what you do to help with the aching and pain.
Wendy
I am a 27 year old who has delt with a clotting disorder since age 14. I had a DVT in my leg dehind my knee and calf at that time. It went away without symptoms. This year I got another DVT stretching from my groin to my calf. I am now 8 months into it, and have symptoms of PTS. Compression helps the swelling but does not treat it. Research shows the 30min or more of walking running and strength training may help. Painful at first so we will see what happens when pushing through the pain.
One out from my saddle PE that developed from a dvt in my calf. On Xarelto and had an ivf filter installed. It all started when my leg was immobilized due to a broken patella tendon in my knee. Last night I realized that my leg was swollen. The good calf was 17 inches in diameter but the dvt leg is 19 inches. I have it elevated. How soon before the complications typically start showing? What should I be looking out for? This is my new frontier.
I had my first dvt at the age of 17, in my left calf after surgery. Fast forward to my 30th birthday and dvt number 2, right calf and 2 years later came clot number 3, left leg from groin to calf.
After all the tests and scans the results were in….. I was born without my ivc? Crazy veins all throughout my pelvis and legs, intense cramping and swelling in both of my legs have been the normal way of life for me for a long time.
Everyday is a struggle with household chores needing to be done, I have learnt what my body can handle. I’ve adapted to this disabling pains, but I still cry.
I put all of my hopes into my vascular surgeon possibly fixing the blockages new and old clots, but as i dont have an ivc to be filtered he cannot help.
Sometimes I feel like my compression stockings are suffocating me, especially in the heat. Really wanted to say how much they have helped me but I honestly dread putting them on everyday.
Everybody has different problems with their health, physical and mental health so its sometimes helpful to read other people’s stories. Puts into perspective how big the world is.
I had a DVt back in 1987 after months of bearers in hospital following major surgery and post op complications. Since that time I have had about 3 pulmonary embolisms as well and bi-lateral hip replacements. Prior to the hip ops, I never regained the strength in my legs despite extensive physio and been a lifelong warfarin patient since 1991. My left leg where I had the DVT has been permanently swollen and in the last 2 years has developed painful varicose veins and extremely bad eczema type marks (ulcers?). Is this unusual to happen after having the dvt almost 30 years ago? Was never advised to wear compression socks until recently but sometimes become desperate to take them off as the tightness makes it suddenly very unbearable.
I had illiac compression syndrome a day after a spontaneous retroperitoneal bleed and ended up with multiple clots in my left leg. I am 35, healthy and have no risk factors that would put me at risk for either. I spent 3 weeks in the hospital. I am now about 6 weeks out and the swelling is better but there are still days my ankle and calf almost double in size. Emotionally I would say I’m a wreck because there is really no answers as to why this happened. I am a nurse and used to travel the US but now I have to stay close to home and can’t do the same type of nursing. Yesterday my doctor told me about post thrombotic disorder and I just cried. My entire life has changed and I have a new perspective as something like this is unexpected. I am thankful for others stories as they help me cope. I do know compression stalkings truly do help. I too had a filter placed and they say it can come out because it was temporary as it was placed while they decide what to do about the bleeding and clotting. I am so scared to get it out. Thank you for sharing your stories. I can’t wait to get back to the gym and try to get my life back.
I had back surgery Feb 1st 2016. I had a herniated disc. The surgery went well but I still have sciatica and numbness in my right leg. A month after surgery my left leg started bothering me. I wasnt sure if I pulled a muscle but it got worse and eventually I had a friend take me to ER. I had a severe DVT. It was from my ankle to hip. I was in the hospital for 5 days and once released I had to use a walker for a couple of weeks. Its been a year and my left leg and ankle still swell and my right leg has the numbness and sciatica. So between both issues I am always in pain and get tired easily. I manage a Starbucks and am on my feet all day. I wear compression socks and good shoes.
The chronic pain is frustrating but I just work through it. Some days it is so rough and many nights I wake up with leg pains.
Any suggestions? I Can’t think of anything else I can do. I stretch, stay active, get lots of sleep, wear compression socks. Take warm baths. Suggestions?
Happy Holidays! I’m in my hospital bed with major DVTs in multiple leg veins and multiple PEs as I write this. So glad to have found this info. I had foot surgery 24 days ago so no compression stockings for a few weeks but I will get them on asap! I really don’t know what to expect going forward. When can I work again? What’s realistic? I drive a lot and stand a lot at work. The doctor’s have been very vague and it’s frustrating. I’m 53, was in ok physical shape before this and have no significance past medical history, expect being a little overweight. Anyone have any advice or experience? Right now I’m just hoping to get home for Christmas but I can’t help thinking down the road.
Looking for some help …. Office seat cushion recommendations? Have had PTS for over 5 years due to lower leg DVT and diagnosed with May Thurner syndrome 2 years ago with sent placement. I do medical billing and sit for long periods of time which is so painful due to nerve damage from sent placement in addition to suffering from PTS. My online research has not found anything and was hoping I could get some helpful tips. Thank you in advance.
Hello, I got a DVT 6 days after a total hip replacement. That’s when I really noticed the pain, but wasn’t diagnosed until 9 days post-op. The DVT was from my thigh to my ankle. I’m now 8 months post op and the clot is still present. It has dissolved some. I’m on Eliquis. I also found out I have Factor V Leiden. I’ve heard conflicting info that I’ll be on blood thinners for life and I won’t be unless I get another DVT. I guess I’m just frustrated at this point still having this DVT and the leg swelling. I guess maybe I need a support group?!?
Hi, I had dvt on my right leg a week after delivery. It’s been 8months since and nowadays I experience very little pain on the same spot. I started using warfarin hoping the pain will subdue. Is it okay to use warfarin? Could it be a PTS? N/B: the pain is very minimal. Please advise..
Hello, I was just diagnosed with PTS today. I was diagnosed with chronic DVT a couple of months ago. Just recent my leg started swelled and I was getting long purplish Mark’s traveling along the original DVt. The worst part was the pain! It affected every part of my life. I couldn’t sit for more than 10 minutes. Walking was so painful and the pain and swelling immediately worsened. I felt horribly upset. I couldn’t do any of my regular day activities without seriously regretting it later. Compression socks do not help me personally. I hope they help some of you. The PTS is travelling way past where the socks stop anyway. I went to the hematologist today. She had placed me back on Xarelto which I was taking during my DVT diagnosis in my upper thigh. That was over 8 months ago. Hopefully the Xarelto will help.
About 9 months ago my doctor sent me to get an ultrasound on both my legs due to the terrible pain i was having in them. I have DVT. I am not over weight amd every blood test she has given me everything comes back fine. I am extremely tired all the time(the reason ive been tested for everything from mono to lupus) and she hasnt once mentioned my dvt. My doctor however has not suggested compression hose or put me on any blood thinners and if i wanted i could start taking aspirin. She did refer me to a specialist but i have no insurance. I was not informed on how serious this actually was until about a week ago when i asked my cousin that is a nurse for some advice. She made me well aware of how serious this is and the end result if i do not have it treated. What i do not understand is that why wouldn’t my doctor inform me on the seriousness of dvt and do more than advise me to quit smoking. I have quit smoking 5 days after my cousin educated me on what dvt is and what it does and the possible end result. And after reading the articles you have posted and what others have wrote in i feel extremely lucky ive happened upon them and for my cousin or i would have never known i should take my situation very seriously. Thank you for sharing your story! I could use any advise anyone could share with me about what i need to look out for and the next step. Along with finding a new doctor.
I realize that you posted this several years ago. I hope you are OK at this point. A THERAPUTIC INR range is between 2 and 3! That you report yours are between 1.6 and 1.9 has me very concerned! Please review this with your doctor or nurse ASAP. If they tell you that the range you reported is acceptable, please seek medical attention elsewhere!
Good luck.
Why do doctors act like they are at a loss and lead patients to believe that the PTS symptoms are atypical?
I even developed plantar fasciitis in one foot after a massive DVT. I was not able to walk on the DVT leg for at least two months, of which somehow the non-use had an impact on the foot.
Last week I was diagnosed with DVT in my leg, likely due to various risk factors combined with inheriting Factor V Leiden (genetic tendency to clot) from one side of my family. I’m limping around with crutches but seem to be slowly improving. For those with eczema, my advice from having it my whole life, is to get the steroid cream from your doctor or even the lower % version from the shelf of your pharmacy.
A story & a question: My ex-husband (passed away recently) once told me about going to a big Canadian hospital for a blood clot in his leg, around 1990 when he was a teen. He said they strapped him to an apparatus that stood him up, and then a nurse “stabbed” his foot forcefully once to try to get rid of the blood clot. It sounds terrifyingly painful, and it certainly wasn’t what the Canadian hospital I went to last week did! Has anyone ever heard of this sort of emergency treatment for blood clots?
Ten years ago I got a massive dvt in my left arm. I think I am suffering from PTS. I have talked to my GP about it, but she doesn’t seem to know much. Should I try and see a vascular specialist with my questions and concerns?