Quote:
Originally Posted by Littlepaw
Hi Denise,
Are you able to tolerate any compression? Compression is commonly used to combat edema and is also useful for POTS as it keeps the blood from pooling down in the leg. In fact ACE wraps were required for a group of CRPS patients who had side effects of fainting from a clinical trial of oral sympathetic blockers since it lowers blood pressure.
With swelling such as you have compression can be tricky as you don't want it too tight but it may be worth a try. Before making any investment I would recommend just using an ACE wrap since it is easily adjustable. Get the kind with a Velcro tab instead of the metal clips. They are much, much easier. If it is helpful there are all kinds of lymphedema compression wraps that are easier on/off than traditional stockings.
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Hi Littlepaw. Thanks for your reply. I can tolerate compression, for a while at least, it just doesn't help. I have a fortune invested in compression garments of all kinds. At first they thought I had lymphedema so I've tried pretty much everything out there, lymphedema manual drainage therapy (which I continue), expensive custom wraps, bandages, the whole works for the whole leg. The swelling is not always very consistent in volume in any one area so it's hard not to have a tourniquet effect if one area lower down changes faster than an area higher up. It's really hard to get the gradient right even starting out. Even when I do, it swells just the same anyway. I figure most severe fluid shift must be in the abdominal area so my next plan is to just try compressing that area (although this hasn't worked before). I am a thin person. They estimate about 15 extra lbs of edema on the leg and abdomen.
This inflammatory edema has been *very* resistant to reduction. I've done lumbar sympathetic nerve blocks, bisphosphonate infusions, HBOT, qEEG based neurofeedback, meditation, restorative yoga, DMSO, ketamine, and of course the normal meds, all without noticeable reduction in swelling. The significant swelling has been an outlier in my disease. It's way worse than the rest of me, although the rest of me is plenty bad enough.
My rheumatologist is concerned over the swelling and POTS changes in heart rate upon standing and wants me to go to a specialized POTS center. I thought I'd reach out here before I did something like that.