Managing Post Thrombotic Pain
After having an extensive blood clot in the left side of my lower body (belly button to ankle) I have had a range of post thrombotic pain to deal with on a fairly regular basis. However, I recently had a pretty bad bought of pain that last for about four days that left me fairly immobilized, bed bound and full of pain killers. Now that I've somewhat recovered from the worst of it I'd like to share my experiences of what it's like to deal with this condition and what I do, and what you can do to help you get past the worst of a flare up.
What Causes Post Thrombotic Pain?
Post thrombotic pain is experienced by most people usually after a moderate - severe blood clot (although this can happen with mild clots too). When a blood clot develops in the vein or artery is has the potential to damage the wall and valve which will interrupt the flow of blood around the body and cause a whole host of nasty symptoms you'll have to contend with. The first flare up of post thrombotic pain can be experienced straight away if the clot did a lot of damage or it can develop over a couple of years as the initial damage worsens.
As it turns out around 50% of people (average of multiple sources) will develop some form of post thrombotic pain within the first two years of having the clot. Unfortunately for those of us who suffer from post thrombotic pain it's not going to leave us, however there are things you can do to prevent a flare up or at least manage the pain to tolerable levels when it does.
Managing Chronic Post Thrombotic Pain
The first thing you need to do to manage your daily pain is to find yourself a doctor who understands your condition well, or is willing enough to go through trial and error with you if you don't have the option to see a pain specialist. As my blood clot was not diagnosed on time it has done a lot of damage and I don't have private health care to see a pain clinic (my condition currently isn't bad enough to warrant NHS referral yet) my doctor and I have taken the time to work out a plan and we review it every six months to check tolerance levels (I got a little addicted to morphine during my hospital stay and we have to keep any eye on things) and things like liver function etc. So, in short if your current doctor isn't willing to help then keep searching for one until you find someone to support you.
Once you have found a doctor who will work with you then you'll need to have an assessment to see what you will actually require to be comfortable. You would of had an assessment when you were discharged from your initial blood clot and more than likely prescribed compression stockings (above/below knee or "gauntlets" for your arms) and pain killers if needed. However, this set-up will only last you for a few weeks at best and you'll need to come up with a longer term plan to manage those daily symptoms.
In my experience the symptoms that you experience on a daily basis can vary but for me the one constant symptom is a throbbing pain in my thigh and calf. The other symptoms (see below) will come and go and will tend to all build up shortly before a flare up.
Symptoms for chronic/daily life include:
- Pain: stabbing, throbbing, aching, pinching, "squeezing" sensations
- Cramping: mainly at night for myself but they can happen at any time
- Pressure and swelling: this tends to be worse at the end of the day but can happen at any time
- Itchy skin, discoloration and other skin conditions: due to restricted blood flow you will experience this sooner or later
- Ulcers: an advanced situation of the prior skin conditions and they can take a long time to heal and need careful medical attention
Acute Pain/Flare Ups
Flare ups of post thrombotic pain can happen at anytime but there will sometimes be a reason for this. For example you may have pushed yourself too hard when exercising, injured yourself, or had a change in medication. Examples like these are easy to spot and are easier to manage because you know what the cause is and you can manage the symptoms accordingly. However, flare ups that come out of the blue and much harder to manage and you may feel like your "flying blind" as the saying goes; unexpected flare ups, especially particularly bad ones, should be looked at by a doctor just in case you have developed a new clot that needs immediate treatment.
Many of the symptoms you'll experience during a flare up will be the same as your chronic ones but they will be stronger and more painful. However, you can experience any of the above symptoms even if you don't usually get them which is why it's important to get yourself checked if you get something out of the ordinary.
Medications and Tools/Tips
Once your doctor has done their examination they'll talk to you about what your options are but for the most part you'll be looking after yourself and getting into a "groove" with your medication can make your life so much better and easier to deal with. Depending on your situation you'll more than likely need some pain killers, compression stockings and ways of managing pain when they don't work: see below.
There are many pain killers available to you and your doctor will start you off (probably) on the minimum dose of a recommended type and then review you in a week or two to see if you need adjustments made or if another medication needs to be introduced. For example my current regime is to be on a controlled long-release opiate based pain killer which I take first thing in the morning along with my other cocktail of drugs for various other aliments and that lasts me for most of the day but if I'm having a bad day I will take a quick release pain killer to tide me over until my next dose in the evening. When it gets to 6pm I will have my Warfarin (anticoagulant) and then take an antidepressant at 7pm which actually helps with my nighttime pain and helps me sleep better too; the antidepressant was an experiment suggested by my doctor as a new study had come out suggesting the interaction with certain pain and the antidepressant will help some patients and I'm glad to say that I am one of those and I have been able to reduce my opiate intake.
Compression stockings are my best friend when it comes to relieving discomfort and pain on a daily basis. I have to wear above the knee compression stockings that go all the way up to the top of my thigh. The reason I love compression stockings is because they do the work for my broken vein valves by helping my body get the blood out of my leg and back to my heart and reduces the swelling too. I know compression stockings aren't the best looking garments but believe me when you are in pain and need some immediate relief you'll be hobbling to those stockings asap! If you don't like the standard ones that your doctor can provide then ask for your compression grade and measurements and check out a local medical store or pharmacy as they can usually make them to order in a variety of designs and tones.
If pain killers and compression stockings aren't doing the whole job for you then I would recommend you try the following:
- Elevation: let gravity do the work for you and sit/sleep with your leg raised
- Massage: I tend to massage around my ankle and calf as that's where I get the most pain but massaging anywhere that's hurting can help to improve the circulation and reduce any swelling you may have
- Walking: going on a short walk can again help get the blood moving around
- Distraction: when all of the above aren't helping then try the good old distraction method which is as simple as it sounds. Go call a friend, watch a movie, craft (I knit), cook, read a book, basically do anything as long as you are not focused on your pain.
So these are all of the things that I do or have done over the last five years to help manage my post thrombotic pain. Thankfully I'm fortunate enough that these options work most of the time for me, however if you're still struggling with your pain then go see your doctor and review your options.
If I have missed out anything or you have any other tips you use then please let me know in the comments and I'll add them into the article here.