As always, this is N=1, so take it for what it’s worth, but a few thoughts:
I was diagnosed with ME/CFS in 2002. In 2006 I presented to the ER with severe upper left abdominal pain that was eventually diagnosed as multiple pulmonary emboli. I had no hx of international travel, surgery, DVT, or anything that would normally provoke at PE. The hematologist did a thorough work-up but couldn’t find a reason for why I had the PE, but did recommend lifelong anticoagulation (I did have DVT & PE after knee and ankle surgery in 1998). So I’ve been on Coumadin and then Xaralto since then but it’s had no effect on my ME/CFS symptoms (or, rather, I’ve continued to deteriorate to the severe form I have now but I doubt that’s due to anticoagulants).
Where it may be a little more complicated is what happened directly after the PE. Despite two days of severe pain and little sleep, the day after I was diagnosed, I actually felt significantly less flu-like than I usually do, which lasted for about 10 days or so. There were a few things going on at that point.
1.) When I initially presented to ER, they did an abdominal CT scan which showed stool stuck in my transverse colon. They simply diagnosed me with constipation and sent me home. Unbeknownst to me, a radiologist took a second look at my scan (and is my unsung life-saving hero as a result!), noticed that the bottom part of my lungs were in the picture and saw what he/she thought was a PE in my right lung prompting a frantic call back from the hospital telling me to return immediately. They were reticent to pump me full of radioactive dye less than 24 hours after doing so for the abdominal CT scan, so checked for DVT with ultrasound but there was nothing. So they started pumping me full of saline to get me to pee a lot and then did the lung CT scan (which showed I had multiple clots in both lungs and so much blood and fluid in my left lung that it had swelled to the point that it was shoving my diaphragm into my colon and keeping stool from passing — I told those mofos the day before I was in a LOT of pain!). What this long story means is that I was getting a lot of saline, which, of course, has been a long-standing treatment in ME/CFS. This has always seemed like the most likely reason for the improvement in my flu-like symptom.
2.) That said, I was placed on the standard treatment of Lovenox for 10 days or so, which correlates with the improvement in symptoms. There are people such as
Ken Lassensen who argue Heparin is an effective treatment for ME/CFS and I remember in the early 2000s there were those who swore Heparin made them feel better. I’m very skeptical of these claims but I try to be agnostic. Note: I have been tested for autophospholipid syndrome multiple times and always test negative.
3.) Like
others with ME/CFS, I find that opioids not only reduce my pain but also reduce my flu-like symptoms (that icky weak sick feeling, brain fog—it actually
improves cognition for me, and generally improves my ability to move) and that effect lasts much longer than the half-life suggests it should. Pain relief will last for the expected period (say 4-6 hours for short-acting morphine) but the sickly feeling will be reduced for a day or two. Once the PE was suspected, I was given a LOT of morphine in the hospital and sent home with a few days of oral Dilaudid. Again, this seems remarkably unlikely for the improvement, especially given the time period of 10 days, but given what I’ve observed over the years that I’ve been on opioids for pain, it's a very remotely potential variable.
I’ve been following the micro-clot findings with a great deal of interest given my clotting issues though my own experience with anticoagulants leaves me a bit skeptical that they will be a good treatment.
