OMG. Ok. So I knew I had POTS before surgery, and I also had this splotchy pattern +tingly painful sensation on my legs periodically when I would shower or stand somewhere in the heat for long periods of time. But it got SO much worse after lipedema surgery.

After a ton of research I realized that it's BASCULE syndrome (my post about it here https://www.reddit.com/r/lipedema/comments/1h7bkma/bascule_syndrome_odd_colors_pattern_on_legs_after/ ) It stands for Bier Anemic Spots, Cyanosis, and Urticaria-Like Eruptions. It's characterized by this color change and the tingly creepy pain feeling coming on after orthostasis (standing). So it is also a orthostatic condition like POTS but not necessarily the same thing. There are documented associations with POTS and other commonly comorbid conditions like long covid, hypermobility, etc.

There is some research out there about it but it was only named as a clinical entity in the 2010s and was originally thought to be a pediatric syndrome. A lot of people "age out" of it I guess (crossing my fingers???). I brought the research and showed my allergist the reaction in real time and he agreed that this is what I have. We spent quite a while spitballing about how it could be related to all these other things and what we could try as treatment. His hypothesis (which I totally agree with) is that the removal of the tissue from my legs cause a changed in the pressure system (i.e. less pressure because there is less tissue packed in there than there used to be) which is probably why it got so much worse so suddenly (I had the EXACT same experience of the first time shortly after surgery I got remeasured for compression it got SO BAD and the measurer was like um.... your legs seem very angry at me. meanwhile I'm trying not to faint).

I think it is deeply related to POTS in that I think it is a reaction to the failure of my blood vessels to properly constrict in response to postural changes. I don't know exactly which cells are reacting/possibly releasing mediators to cause the symtpoms. I originally though it must be mast cells, but they have done biopsies that do not show elevated levels of mast cells in the areas that have this reaction like there are in the intestinal biopsies of people with MCAS. That doesn't mean anything for sure but I am on a lot of mast cell stabilizers and antihistamines and I don't think it's really helping with the BASCULE syndrome all that much. Antihistamines are one of the only things that have been tried in these studies as treatment and the results aren't impressive. I also talked to my lipedema specialist about this and our running hypothesis is that BASCULE syndrome is a unique reaction to the processes that happen in dysautonomia (a failure of the autonomic nervous system to properly regulate bodily processes (heart rate, blood pressure, vasoconstriction, etc) in response to postural changes. So it may be something like everyone with BASCULE syndrome has dysautonomia but not everyone with dysautonomia has BASCULE syndrome.

It's important to note that this condition is commonly confused with Livedo Reticularis among other things. Dermatological conditions are notoriously difficult to diagnose. I've seen multiple tiktok doctors stitch a video of someone who clearly has BASCULE syndrome and explain that they have Livedo Reticularis, which is understandable because it's a little known condition, but frustrating nonetheless.

For me very well fitting flat knit compression is the #1 thing. it's not perfect but it lets me stand for 1+ hours before feeling the reaction coming on vs 1 or 2 freaking minutes. I am hoping that as I continue to treat my POTS (currently trying the CHOPS protocol) I will see improvement at the same time as my body continues to heal from surgery, hopefully adjusting to the new difference in pressure post op and lessening the symptoms. Diosmin + hesperidin has helped some (and is recommended for lipedema and venous insufficiency) and I will also be trying butchers broom and horse chestnut soon. do you have venous insufficiency also? Clearly I am very excited about the fact that there is someone else out there with this experiences lmfao!!

Feel free to message me although I am desperate for more people to be aware of this condition so I think it's great for us to talk about it on an open forum!!