Massage for POTS: Worth a try?

In searching for more ways to feel better, we wanted to know how POTS patients felt about massage. Granted, no two therapists are the same, and there are many different styles of massage (e.g., shiatsu, deep tissue, Swedish, circulatory, lymphatic, etc.) but we were curious whether any trends would emerge about massage in general. In theory, massage has some appeal as a way to relax and lie down while somebody else helps our blood circulate: sounds great! On the other hand, however, POTSies sure seem to have unique or hypersensitive reactions to all sorts of things. So, we used the POTS Patient-Powered Survey to ask about it.

In the survey, we listed massage among other alternative therapies, and asked participants:

A) whether they had tried it, and B) whether it had "helped lots!" "helped a little," "didn't help," or "made my POTS worse."

Below are the responses from 427 POTS patients.

Yes, 132 No, 295

The survey did not specify what type of massage or frequency of treatment, so it can be assumed that the 132 "yes" responses represent several styles of massage, for differing lengths of time, and both professional massage and possibly informal massage offered by family members, for example.

Next, for those 132 who had tried massage, below are their ratings:

Helped a lot!, 15% Helped a little, 48% Didn't help, 24% Made my POTS worse, 13%

At first glance, it appears encouraging that massage was rated as helpful (a little or a lot) by 63% of those who had tried it. Hey, maybe relief is just a set of good hands away! It certainly seems possible that a relaxing circulation-promoting massage could help. However, before we get too confident that massage helps the majority of POTS patients, we should also consider that there's a chance that the 132 POTSies (out of 427) who tried massage were not representative of all POTSies. The 295 patients who had not tried massage might have had a good reason for avoiding it. For example, POTS patients with fibromyalgia or EDS might strongly suspect - without trying it - that massage would make them feel worse. At any rate, for those who chose to try it, massage was rated as helpful by a majority.

On the down side, 13% of those who'd tried it rated massage as making their POTS worse. We did not ask participants for details, but I can report for myself that massage has made my POTS briefly worse on occasion, when the room was too warm, when the therapist or style didn't suit me, or if I had to stand around too long afterwards, to shower or pay. In addition, I've wondered if some types of massage can trigger mast cell reactions or cause problems for EDS patients. At any rate, the 13% who reported massage "made my POTS worse" warn us that trying massage is not without risk.

To put massage in perspective with other therapies, we compared it to acupuncture, physical therapy, counseling and essential oils. For each, we identified POTS patients who had tried each therapy and then looked at their ratings of whether it helped their POTS:

"Massage (n=132)", 63% "Acupuncture (n=100)", 44% "Physical therapy (n=183)", 54% "Counseling (n=177)", 43% "Essential oils (n=89)", 54% "Elevating head of bed (n=231)", 52%

In this comparison, massage was rated helpful at least as often as other alternative therapies. To read more details about effectiveness of these other treatments, see our findings about acupuncture, physical therapy, counseling, essential oils, or elevating the head of the bed

In my own experiments with massage, I've had experiences ranging from sublime to painful. With experience, I've learned a few tips that can help make it better. I'll share them, in case they can help anybody:

  1. Call ahead of time to explain your unique situation and needs. If the therapist doesn't seem engaged and eager to make it great for you, cancel the appointment and find someone else. Warn them if you need special irritant-free lotions or oils.
  2. When you find a great therapist, try to stick with them.
  3. Before starting a massage, remind the therapist you're not the "average" client, even though you may look fine. Tell him/her exactly what you want (e.g. what type of pressure, areas to avoid, etc.) and speak up immediately if something isn't right.
  4. I like to remind the therapist that I want every single stroke toward the heart, because blood pooling + massage strokes away from the heart = PAIN!
  5. Be pro-active about managing the temperature. You can change the heating pad setting, fan, thermostat, etc., as needed.
  6. Consider paying ahead of time, to avoid standing around afterwards.
  7. Consider asking the therapist to use unscented lotion, rather than oil, because then you might not need to shower afterwards.
  8. If it's not working out, just leave early with a polite explanation.
  9. Get up slowly and carefully after the massage.
  10. Show gratitude and/or tip therapists nicely for accommodating your picky needs. If they did something especially helpful, ask them to make notes about it so that they can do it every time.

If you decide you want to try massage, first make sure to ask your doctor if it would be safe. If you get the green light, I wish you good luck in finding a great therapist who can give you a healing and blissful experience.

We have lots more findings here, or to receive occasional email updates on new findings, you can sign up on our homepage. Be well!


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