Bone marrow edema not healing

[WRLM]

Hi,

Recently diagnosed with JAK2+ ET / possible pre-fibrotic myelofibrosis a month or so ago. Platelets have been consistently high since 2015, so I suspect I’ve gone undiagnosed for awhile.

I broke my left foot late 2020. Long story… but I didn’t realize it was broken at the time, so didn’t go for X-rays until late Feb. X-rays were inconclusive, so I had a CT scan that confirmed a fractured cuboid bone. There was a shadow on my ankle they were concerned about, so I was sent for an MRI. MRI showed edema everywhere, including bone marrow edema. When I googled, it said untreated bone marrow edema would resolve itself in 9months - 1year. I was already 6 months in at that point, so figured it would resolve in a few months.

I am still struggling with that ankle… mostly in the evening after I sit down. It feels like a weird pressure from the inside - like a ballon has been blown up in there. It’s a bit throbby, mostly achey. This doesn’t happen every night, but multiple nights a week for sure.

In light of my new diagnosis and knowing I now have bone marrow issues, I’m wondering if the fact the bone marrow edema hasn’t seemed to have resolved might be related to the little blood goblins in my marrow? Could they be preventing it from healing? Google has been no help with this, and my appt with the MPN specialist isn’t until October.

I thought I’d check in with you knowledgeable folks in case you have any experience with this. Thoughts??

[hunter5582]

I do not know of a direct connection between ET and a delay in healing an edema. One could hypothesize that the proinflammatory environment created by the JAK2 mutation could play a role. That would just be a theory though. I do not know much of anything about a bone marrow edema but i am sure that systemic inflammation is not our friend. Whenever i have an injury like what you describe, I pay particular attention to anti-inflammatory interventions. Not sure it will help in this situation, but it most likely would not hurt.

Suggest reaching out to the MPN Specialist for guidance since this is an emergent situation that cannot wait until October. I would also consider a consult with an Integrative or Functional medicine doc for another view on how to handle this.

Hope you are up and dancing soon.

[Planti]

Hi WRLM,

Well, what an interesting question and I see it has been months that you have had this and not had relief.

It is a good question and may have something to do with the inherently pro-inflammatory nature of the MPN, but may not. So many good questions in medicine and I would be happy to hear more answers.

And, of course it is not just the disease but to whom the disease has happened, we are all so different.

I hope that you get replies that shed light, or just shared experience and compassion. I have aches in places I did not know I had places and put it down to inflammation. Though Dr. Foltz doesn't think it is due to ET, just osteoarthritis.

Be good to yourself and I hope this fades in time.

[Lasbrisas1]

I also had that feeling in my lower leg, however, since I have been sprinkling Cayenne Red Pepper on my food and Fresh Lemon in hot water it has disappeared....I hope this will help you too. ❤

[WRLM in reply to Lasbrisas1]

I read your post about that. Very interesting!

Unfortunately I can’t do spicy stuff at all. In fact, I’d told my husband what you’d wrote about cayenne pepper fixing all your pain and he laughed and laughed! (at me, just to be clear!) He puts peppers and hot sauce on everything and I start sweating just looking at his meals. That’s amazing it’s helped you so much.

[Lasbrisas1]

Ask him who laughed at Hippocrates ha ha.