Post-Thrombotic Syndrome is Not in Your Head

PTS Not in your Head Cover

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 changes everything about our lives – right down to the tiniest detail and has 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 upsetting, effects of DVT is Post-Thrombotic Syndrome (PTS) and it is not in your head.

This week, the reminder that yet another thing may be permanently different came to me in a pair of previously-thought 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, I was 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.

My boot

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 can affect 23-60% of patients in the two years following DVT of the leg. Of those, 10% may go on to develop severe PTS, involving venous ulcers (Wikipedia.com). While some people who have had a DVT recover completely, others may be left with some symptoms in legs (or arms) that may never go away.

Per the National Blood Clot Alliance, an estimated 330,000 people in the United States have the PTS. Typically, the more extensive the DVT, the more severe the symptoms of PTS will be. However, this is not always so: even people who have had very extensive acute DVTs with severe symptoms may recover completely and may not be left with any long-term symptoms.  Approximately 60% of patients will recover from a leg DVT without any residual symptoms, 40% will have some degree of PTS, and 4 % will have severe symptoms. The symptoms of PTS usually occur within the first 6 months, but can occur up 2 years after the clot. If a patient has done well for 1⁄2 – 2 years after the clotting event it is highly unlikely that he or she will develop PTS.  Little is known as to who will develop chronic symptoms, such as skin ulcers, and who will not.

The symptoms of PTS (per the National Blood Clot Alliance) include:

  • Chronic extremity swelling
  • Chronic (or waxing and waning) pain
  • Unspecific discomfort of the extremity
  • Diffuse aching
  • Heaviness, tiredness and cramping of extremity
  • 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)
  • Atrophie blanche or white atrophy (small areas of white-gray scar tissue)
  • Dermatoliposclerosis (an inflammation of the layer of fat under the epidermis)
You mean it’s not 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 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 are 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 are often 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 extremity at rest and at night
  • Compression stockings, grade 2, get them fitted by your doctor (although recently research is conflicting on the effectiveness of compression stockings)
  • Weight loss
  • Increased exercise with strengthening of extremity muscles
  • Pain management (medication, visiting a pain clinic)
  • Compression pump (battery-powered device used when stockings fail to work)
  • Vascular interventional radiology procedure: balloon opening and stenting of 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 changed 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 health care provider to look at your leg. Only a health care provider can tell you if your problems are from a new blood clot or from PTS. Since it can take 3 to 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 the self-esteem, especially if you have been working your whole life. Visiting a social worker, therapist or psychologist may be helpful in facing some of these issues.

Once I have PTS, will it ever go away?

Currently there are no procedures to correct the veins that contribute to PTS. It is typically a lifelong diagnosis that needs continually managed.

Where can I find more information?

Click on the links below for more information about PTS, including symptoms, treatment and care-

Share your story. Are you suffering from PTS? Do you wear compression stockings? How are you dealing with your diagnosis?

There is hope for healing and you are not alone,

0-BLOG SIGNATURE SARA

Comments

  1. 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

  2. Bay Billups says:

    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!

  3. Saurabh Agrawal says:

    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

  4. 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.”

  5. Victoria Leigh says:

    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.

  6. KENNETH CATTLE says:

    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

  7. Greate post. Keep writing such kind of information on your blog.

    Im really impressed by it.
    Hi there, You have performed a great job. I will definitely digg it and individually recommend to my friends.
    I am sure they will be benefited from this web site.

  8. D MARZETTE STUCKEY says:

    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

  9. D MARZETTE STUCKEY says:

    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

  10. Michele Andersen says:

    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.

  11. Katie V. says:

    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!

  12. 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.

    • Carrie hoffmann says:

      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

      • Wendy Ramirez says:

        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

  13. 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.

  14. 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.

  15. 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.

  16. 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.

  17. 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?

  18. 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.

  19. Annette Cardoza says:

    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.

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