[cdwall]

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

[RSD ME]

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

[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.

[cdwall]

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.

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.

[Littlepaw]

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.

[cdwall]

Originally Posted by Littlepaw

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.

[BioBased]

I hope you don't mind this information. I had considerable swelling which is now down to a hen's egg lump on my ankle.

My opinion is that too much compression, massage, pressure boots etc can initially appear to help the swelling, but long term can make it worse and may cause damage to the delicate vessels that carry lymph fluid. Again my opinion.

The Bowen Technique I used removes excess fluid with no manipulation. It is so simple. Basically a special washing soda is put in a cotton (no blends) cloth (i used a bandana) and wrapped around the area. An ace bandage or plastic wrap is used to keep this in place overnight.

https://m.youtube.com/watch?v=B4rWSlSy_OY

http://www.headbacktohealth.com/bowen.html

That's it. In the morning the bandana is saturated and the swelling reduced. I followed instructions I found on the Internet: do not use more than three times a week. It took about three weeks.



Once the worst swelling was gone, my body started to work on its own. I am not standing for long on my leg, mainly because I cannot put weight on it, but I wasn't standing on it when it was badly swollen either.

Skeptics may think the saturation is from sweat, but this is not the case. I have tried multiple times to reduce the egg on my ankle using this technique. In the morning the bandana and the washing soda crystals are bone dry. (I think the egg on my ankle is a bursa that is swollen with a gel like fluid.)

[cdwall]

Originally Posted by BioBased

I hope you don't mind this information. I had considerable swelling which is now down to a hen's egg lump on my ankle.

My opinion is that too much compression, massage, pressure boots etc can initially appear to help the swelling, but long term can make it worse and may cause damage to the delicate vessels that carry lymph fluid. Again my opinion.

The Bowen Technique I used removes excess fluid with no manipulation. It is so simple. Basically a special washing soda is put in a cotton (no blends) cloth (i used a bandana) and wrapped around the area. An ace bandage or plastic wrap is used to keep this in place overnight.

https://m.youtube.com/watch?v=B4rWSlSy_OY

http://www.headbacktohealth.com/bowen.html

That's it. In the morning the bandana is saturated and the swelling reduced. I followed instructions I found on the Internet: do not use more than three times a week. It took about three weeks.



Once the worst swelling was gone, my body started to work on its own. I am not standing for long on my leg, mainly because I cannot put weight on it, but I wasn't standing on it when it was badly swollen either.

Skeptics may think the saturation is from sweat, but this is not the case. I have tried multiple times to reduce the egg on my ankle using this technique. In the morning the bandana and the washing soda crystals are bone dry. (I think the egg on my ankle is a bursa that is swollen with a gel like fluid.)

I only do the lymph drainage higher up these days. I don't mess with the leg. I did go through a hospital based lymphedema clinic for a month for the initial training though. I also don't do much compression anymore since it doesn't help.

I'll give your technique a look. I don't know how it would help the abdominal area but maybe it would the other parts of the leg swelling.

I tried an abdominal binder only last night and today. It didn't help. I usually include the whole leg but since that doesn't work I thought I'd just try the abdomen all the way up to under my breasts. I might find some other materials or bandages (and I have plenty) to use to try this again since most of the fluid is probably dropping from the abdomen causing the severe increase in heart rate upon standing.

Thanks for the suggestions.