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Posted

Hi All~

I finally got around to using my son's Mother's Day gift from 2008, and it's the first massage I've gotten since I've been sick. I thought it would make me feel better, but it definitely made me feel worse! It was a heated bed, and I had an hour's worth of Swedish massage. Has anyone else had this reaction? How about with acupuncture? I was going to try acupuncture, since I can't tolerate Florinef or Midodrine, but now I'm worried it might make me feel worse, too. Input, please...

Thanks,

Jana

Posted

I had a deep tissue massage in Fiji. It was really good for my circulation lasted at least a month before my legs started to hurt again. A heated massage would trigger all sorts of symptoms. I have often wondered about acupuncture have heard its good for circulation would like to try it but like you is hesitant.

Posted

Both massages and acupuncture make me feel worse. They cause me to feel more woozy, experience autonomic symptoms, and make my myofacial problems worse. Rather than relaxing my muscles, massage causes me to go into worse muscle spasms. I also have problems with severe heat intolerance. The only type of therapy that I have been able to tolerate and have found somewhat helpful is gentle myofacial work or muscular "craniosacral-like therapy" done by Upledger trained therapists. I know it is disappointing when something that you expect to make you feel better actually causes you to feel worse, so I hope that you will "recover" from your massage quickly.

~ Broken_Shell

Guest elyag
Posted

I had some great results with acupuncture a few years ago. But I think that's because my acupuncturist was also an MD and she understood dysautonomia. I went to her for over a year and would still be going to her if she hadn't moved her practice to a clinic too far for me to drive to on my own.

Hope you feel better. Maybe the heated bed had something to do with making you feel worse? Although I don't feel too well after massages either.

Posted

While I was able to work, before 2007, I had massage weekly and I think it did help to keep me going for as long as I was able to do so. However I couldn't handle the "normal" massage with all of the scented oils and direct pressure. Instead, my massage therapist did a kind of "powder massage" that they tend to use on people who are very ill (cancer etc.). It was a very light tough and full body. I could handle this much better than the traditional massage, which for me tended to release too many toxins in my tissues at once (at least that was the theory -- all I know is that it made me sick as a dog.)

I also felt very good when I was getting ear, hand and foot reflexology. I could handle the harder pressure on these accupressure points and typically felt very good for a day or two.

I find that acupuncture varies depending on the particular practiioner and the ailment you are targeting. A few years back I was diagnosed with vulvodynia and after nine months of no luck with traditional treatments I found a GYN who was also a licensed accupuncturist. She had never treated vulvodynia before with accupuncture, but did some research on articles that had and designed an extensive protocol (like 40 needles from my head to my toes and places you wouldn't even THINK of placing needles.) She told me that I could expect to feel much worse after the treatment for 1 to 4 days. And she was right. I felt awful afterwards. The pain was more intense and I was in agony for about three days. Then nothing. The vulvodynia was completely cured -- that as I said was a few years back.

I was so impressed with the success of this protocol that I asked her if she could design something that would help with my dysautonomia ... long story short, she was amazing and we tried for about six months, seeing her once a month for a lengthy session. But nothing we did seemed to make a dent in my POTS at that time.

During that time, my husband and I did learn how to do some aural accupuncture (ear accupuncture) ... and while I wouldn't recommend anyone do this at home ... it is something that we use from time to time for pain or other acute conditions.

My own sense is, that everyone is different and even different bodies react differently at different times. If you are inclined to try accupuncture, I'd recommend talking with a few specialists and seeing which one you feel comfortable with and then if it doesn't show any sign of improvement in a month or two ... move on to plan b, or c or ....

Good luck!

Posted

I'm sure you're right. I'm also very heat intolerant, and should have known to have her turn the heated bed to 'off'. But it felt so good at the time...

Posted

EarthMother,

I'm almost in tears as I write this message to you, and it has nothing to do with massages or acupuncture. I have been suffering for the past 4-5 months with a lot of burning, itching and pain in my genital region. No one has been able to figure it out yet. When I saw that you had 'vulvodynia', I looked it up, and I really think that's what I have! Thank God that you wrote that...If you don't mind, can we PM or email about this condition? I'd love to know what it's been like for you and what they've tried.

Thank you!

Jana

Posted

I was warned by one of my dr's not to have a deep massage, even a gentle massage makes me sore. The experience I've had with accupuncture was not great either. There was no pain but everywhere they put a needle I had a bruise about 2" in diameter. I don't think it made me feel any worse. Sorry massage was not a good experience for you maybe the accupuncture will be better.

Posted

Thanks...I'm also heat intolerant, and I should have known better and told them to turn the heat off on the bed. It just felt so good at the time. I think I'll wait awhile before attempting acupuncture, now.

j

Posted

Alicia,

I think I'm just going to wait awhile until I try acupuncture...perhaps I need to stick to pedicures!

Posted

I tried acupuncture for my pots and it didn't work out at all. The first time I had only eight needles and I felt light headed right away, within minutes. I was able to drive home but felt sick for at least three days. It did drop my heart rate but I finally figured out it dropped my blood pressure as well, way too much. I waited two weeks and went again, this time only four needles. I didn't get as sick, but this time I watched my blood pressure and it dropped before I even got out of the office. It might work for some others but not for me.

Maggie

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