I know this is a RSD/CRPS group but many of the members also have POTS so I'm asking for help here. What are people here doing to control their POTS symptoms? My POTS is out of control. I bought a Fitbit and it shows my heart rate skyrocketing every time I stand up. A definition for POTS is an increase of 30 beats per minute upon standing within the first 10 minutes. Most normal people are about 20 or less. Mine is averaging 50-60 and sometimes close to 100 BPM increase. I'm at my maximum calculated heart rate. Needless to say, I can't stand up long and this has got to be running my circulatory system ragged. I get dizzy and pass out all the time. The severity could be related to the extreme edema in my entire right leg and lower abdomen. I've done all the normal hydration stuff, take mestinon for this, supplements, whatever. Any help fellow POTS sufferers? The heat is making it particularly bad.

Thanks,

Denise

hi cd. i never heard of POTS but hope that you feel better soon. soft hugs.

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.

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.

Well poop. I am sorry to hear your edema is so resistant. This is probably a redundant question you have already had worked up but I am assuming they did a thorough vascular work up including Venous CT or MRA of the leg and abdomen? There are a couple of rare compressions that can occur in the abdominal area, especially in women, that contribute to one legged swelling. Are they certain it is all CRPS? If your docs are not a hundred percent sure of the cause it might warrant a look see considering the severity of your symptoms.

Yes, all that was done early on actually. I've been to see 11 specialist and the workup was extremely thorough in every way IMO. After the normal vascular tests were done, they thought I had lymphoma in the pelvic inguinal region due to swelling and family history. I was sent to a general surgeon for pelvic mass and then to a vascular surgeon. I have thought of going back to the vascular surgeon to see if they had anything else to offer as to cause in the abdominal area. They think it's all CRPS but I think either it's got a lot of POTS involved or there is a vascular component they missed. Certainly some of it is CRPS because it's classic. My 3 phase bone scan showed blood pooling and changes consistent with CRPS in the leg. Sympathetic nerve block confirmed CRPS, etc. I for sure have CRPS in the leg. It's just so weird the POTS swelling would be so bad in one leg and the other zero swelling. Especially with the degree of heart rate increase I'm seeing just upon standing.

In some ways the swelling helped because every Doc took it seriously from the start. It just took a while to diagnose RSD because of the presentation.