Yesterday afternoon my girlfriend and I got massages. I had never had one before, so the experience was a new one for me.
I told my massage therapist that I had lymphedema, a chronic swelling in my leg. She nodded knowingly, saying that she would give me a deep tissue massage to help get the fluid moving. Once we got into the room, however, she began to ask me a series of strange questions.
“Do you have any allergies?” she asked.
“No,” I replied, a little confused.
“How do you know?” she pressed. “Have you been tested?”
“Uhmm.. yes,” I lied. Why was she asking me about allergies? I was beginning to feel a little uncomfortable, and I couldn’t see why this was relevant at all to the massage.
“Uhm.. well I haven’t had an allergy panel before, if that’s what you mean. But I’ve also never had any allergic reactions, so.. I’m pretty sure I’m not allergic to anything.”
She smiled tersely. “You should have a blood test done, because they can detect more than a regular allergy panel. You might find that your swelling is related to that.”
I’m sorry, lady, but if I tell you I have a medical condition, I’m fairly certain that I know what’s up. This is no “allergic reaction” – it’s a diagnosed medical condition shared by millions of people! There’s no need to question what I already know about my body.
Once her strange interrogation was over, I undressed and got onto the massage table. The massage itself was lovely, and I drifted off to sleep several times during the hour and a half appointment.
When she got to my legs, she focused mostly on my thighs. When she did do my lower legs, she began pushing downward rather than up. Her technique was different from MLD, and I was a little concerned if this was hurting rather than helping my leg. At one point, she even put a hot compress across my legs – something that you should never do if you have lymphedema, as heat can make the swelling worse. I was beginning to think that she was not as familiar with lymphedema as she had made it seem before the appointment.
My post-massage verdict? I would definitely do it again, although I would be more vocal about my special needs concerning the lymphedema. That, or I just wouldn’t get it below my waist at all.
How about you? What has been your experiences with lymphedema and massages?
My lymphedema therapist told me to refrain from massages as they are performed with more pressure than MLD and can cause more damage to the delicate lymphatic vessels just under the skin. This is sad for me because my office has a massage therapist that comes in every other Friday, and I’m the odd woman out that can’t enjoy “Jennifer Day” with everybody else.
You might consider not having your affected area massaged next time. =)
You should have spoken up! She could do some real damage to someone. As a matter of fact, you should inform her supervisor about the importance of educating the massage therapists in their office about Lymphedema before they seriously injure or compromise a fellow Lymphie. As soon as she started massaging in the wrong direction, let alone when she applied a heat compress, you should have insisted that she stop. You can”t worry about hurting her feelings or sounding dramatic! Aren’t you always encouraging people to treat themselves well and take care of their lymphodema? Well… the same goes for you too. You would advise your lymphies the same way if the tables were turned :/
Do some research next time and find a reputable place where the therapists are educated about or specialize in lymphatic massage. Ask your doctor for a recomendation or contact MLD for one. And remember… you speak up about everything else so speak up for yourself!!! You’re worth the effort!
(or, like you said, below the waist is a no-no) :)
I am sorry you had to go through this, you must have been so worried when she did the deep tissue massage – I would. I agree with the above comments, I think regular massage can do more dammage than good to a lymphedema leg.
After long discusssions back and forth with myself whether to do it at all I had an oil massage in Thailand last year, and I simply told them to not touch my lymphedema leg. I don’t think I will do it again though, I was too worried to enjoy it properly.
Live and learn, Alexa. Everybody has perfect hindsight; very few of us have wonderful foresight. Your instinctive distrust of her questions was right on the money, and like just about everyone else who has lymphedema, you wondered if a member of the ignorant/arrogant masses was right…and decided maybe she was. Over four decades and change of being blown off about lymphedema, I learned not to trust my own judgment; it took a nasty case of cellulitis to make me throw off that self-doubt…so I know exactly how you felt. (I had one of those massages once, by the way. I don’t think it affected my legs much…but the fact that I declined to disrobe for it may have protected them, to some extent. It was about a year before that cellulitis attack, so maybe the massage did cause some harm. Who knows. By that time my lower extremities were such a mess I’m not sure it mattered much!)
Getting used to having a disability that everyone has told you, continually and over a long time, that you don’t have, that isn’t serious or potentially life-threatening, that’s mainly or entirely in your head (and that many people, even doctors and nurses, have said doesn’t exist), is extraordinarily difficult and complex. I think you knew you had lymphedema as a young child; I had it as a child (no older than 10), but didn’t know it for sure until I was over 50. Now I have to think about everything I do and its possible effect on my legs, and sometimes that means having to tell people I need accommodations they don’t come close to comprehending. The result is that at times I have to simply issue orders and say “no” with an attempt at the level of self-assurance of someone who, for instance, is blind, deaf or uses a wheelchair. I can give icy looks when I have to; it’s not fun but as long as people with lymphedema are about a century behind folks with other disabilities in terms of public awareness of our disability and the problems associated with it, that’s what I do.
I just don’t get a massage below my waist it is safer that way.
Okay I have LE and I’m a LMT and that was just plan weird!
Thanks for your comments, everybody. Next time I get a massage, I think I’ll go with the general consensus and ask that they avoid my affected leg. It’s hard to tell what helps and what hurts it – you’d think a massage would be great, but like Nikki G said, the system is so delicate. I’m going to look around for specialized LE massage therapists, but I’m not sure if there are too many of those in Burlington.
So we can’t get massages, we can’t drink, we can’t sit in hot tubs – us Lymphies need to figure out a better way to relax!! Lymph-friendly hedonism, if you will.
I’ve been following your site for a few months. I think it’s great that you are a young person with LE and you’re blogging about it. Very proud of you.
I’ve had some massages outside of a medical office or by people who thought they understood my conditon. One was a Swedish massage the day before I completed a Olympic Triathlon, which was good, but I’d rather stick with MLD anyday. One massage (not MLD) scarred me for life – I got burned by an ultrasound machine – they used cold liquid on me in the beginning but switched it to hot after a couple of visits. This doctor who ordered the therapist to use heat on me was supposedly a vascular surgeon from a top hosptital in NYC!!! Nothwithstanding, when I was diagnosed at six years old, my pediatrician ordered my leg to be encases in a hot towel and plastic bag. I detested hot baths as a kid, and as an thirty-two year old adult I understand why.
Don’t ever allow anyone to put heat on your LE limb or body part!!! Trust your intuition and your knowledge. We have to advocate for ourselves, because there are so many doctors and people in healthcare that don’t know nearly as much as we do about our condition. Don’t be afraid to confront them about it.
I looked on a website called Lymphedema People, of which I am a member, and pasted the information about therapists in the United States below. Please find your state.
Certified Lymphedema Therapists in the United States
by patoco » Fri Oct 06, 2006 9:00 pm
CERTIFIED LYMPHEDEMA THERAPISTS UNITED STATES
Our Home Page: Lymphedema People
* Updated August 1, 2009*
A List of Lymphedema Therapists
Inclusion in the list does not mean an endorsement. You must check the credentials of any therapist you choose to go to. For guidelines, please refer to the NLN article on choosing a lymphedema therapist. The list will be continually developed. The therapists listed are for informational purposes only.
To be included in the list, please e-mail me directly:
You must be certified specifically for the treatment of lymphedema, be a graduate of a recognized school, recognized by the National Lymphedema Network, and/or have LANA certification.
We reserve the right to reject any therapist that does not meet our guidelines.
Karen Allen Hislop, OTR/L, CLT
Clearview Cancer Institute
3601 CCI Drive North West
Huntsville, AL 35805
2011 Gallatin Street
Huntsville, AL 35801
Services provided: Occupational, physical, and speech therapy for treatment of lymphedema, balance, strength, endurance, and swallowing
Occupational Therapy of Gadsden, LLC
Regina H. Finlayson, OTR/L, CLT
215 Walnut Street, Suite 2
Gadsden, AL 35901
Alabama Physical Rehab Services
1475 First Street
Jacksonville, AL 36265
Decatur General Rehab Access
2348 Vanville Road SW
Decatur, AL 35603
Lymphedema Therapy Solutions
At Easter Seals Society
Giana Alldredge, PT, CLT-LANA
PO Box 241473
Montgomery, AL 36124
Scottsdale Healthcare Lymphedema Treatment Center
Andrea Brennan, OTR/L, CLT-LANA,DAPWCA
3501 North Scottsdale Road, Suite 136
Scottsdale, AZ 85251
St. Helena Hospital, Clearlake, Outpatient Therapy
Roxanne Nelson, OTR/L, CLT, CHT
14880 Olympic Drive
Clearlake, CA 95422
707 995-4888 (phone)
Grand Mesa Therapeutic Massage
Cindy Lichtenhahn RMT, CLT, LET
Grand Junction, CO, and surrounding areas
“Lymph in motion is a beautiful thing.”
Mount Sinai Rehabilitation Hospital
Michelle Aafedt, MS, OTR/L, CLT
490 Blue Hills Avenue
Hartford, CT 06112
Specialty Rehabilitation Inc.
280 East Main Street, Suite 132
Newark, DE 19711
Therapists: Lisa Marshall; Carol Head, Suzanne Wiesenberg, Barbara Browser
Also includes Cancer rehabilitation, Women’s Health Services
Hohman Rehab & Sports Therapy, LLC
236 Mohawk Road
Clermont, FL 34715
The Lymphedema Center
Medical Arts Building, North Florida Regional Medical Center
6400 W Newberry Road, Suite 109
Gainesville, FL 32605-4388
Randall L Disch, LMT, CLT
Certified Lymphedema Therapist
MA 28276 MM 13639
Dr. A. Akey (Internal Medicine) is the doctor of reference.
I believe they accept most insurance and Medicare.
Northwest Medical Outpatient Rehab Center
Cathy Kleinman-Barnett, MOTR/L, CLT-LANA, LMT, CLM
5901 Colonial Drive, Suite 101
Margate, FL 33063
The Flagler Institute for Rehabilitation
Kevin Kunkel, MSPT, MLD-CDT
Dr. Minita Chabria
2617 North Flagler Drive, Suite 112
West Palm Beach, FL 33407
University of Miami – Affiliation
Pamela Cohen RPT-CLT,LANA
1001 NW 13th Street, Suite 102
Boca Raton, FL 33486
The Center for Cancer Rehabilitation and Lymphatic Disorders Association
2617 North Flagler Drive, Suite 112
West Palm Beach, Florida 33407
Trinity Lymphedema Centers
Wesley Woods Hospital
Janet Wolfson, PT, CSLT, CWS
1821 Clifton Road
Atlanta, GA 30329
Benchmark Physical Therapy
1025 East West Connector, Suite 406
Austell, GA 30106
Kennestone Outpatient Rehabilitation
100 Lacy Street
Marietta, GA 30045
Piedmont Physicians of Gwinnett
3055 Breckinridge Blvd., Suite 300
Duluth, GA 30096
Gwinnett Sports Rehab/Lymphedema Department
Samantha Cannon, MSOT/L, CLT
3855 Pleasant Hill Road, Suite 400
Duluth, GA 30096
Gwinnett Medical Center–Lawrenceville
1000 Medical Center Boulevard
Lawrenceville, GA 30046
190 Montreal Road, Suite 132
Tucker, GA 30084
Other Locations: Alpharetta, Conyers, Duluth, Dunwoody, Marietta, Roswell
Call Tucker number for appointments
Manual Lymphatic Drainage
Vickie Armstrong, LMT, MLDT
Joann Manning, MT, CLT
DeCourcy Squire, PT, CLT-LANA
Outside of Atlanta Metro Area:
Collisium Rehabilitation Center
350 Hospital Drive
Macon, GA 31213
Phoebe Physical Medicine Center
2336 Dawson Road, Suite 1100
Albany, GA 31707
Rehabilitation Services of Tifton
1488 Old Ocilla Road
Tifton, GA 31794
St. Luke’s * Elks Rehab
Downtown Boise ID Site
Sonja M. Maul, PT, CLT-LANA
600 N Robbins Road, Suite 101
Boise ID, 83702
Caldwell ID Site
Laura Townsend MPT, CLT-LANA
Danielle Jarvis, PT-CLT
2615 E Cleveland Blvd
Caldwell ID, 83605
Provena St. Joseph Medical Center
2400 Glenwood Avenue, Suite 100
Joliet, IL 60435
Clarian Health Rehabilitation Services
Christine M. Bruner-Wilson, PT, MS, CLT
Methodist Medical Towers
1633 North Capitol Avenue, Suite 438
Indianapolis, IN 46202
Out-Patient Adult Team Leader
Anne Basden, MSPT, CSCS, MLD/CDP
Andrea Baumann, MSPT, ATC, CSCS, MLD/CDP
1110 Professional Blvd.
Evansville, IN 47714
866-885-9691 (toll free)
533 Columbia Street
Evansville, IN 47710
801 St. Mary’s Drive, Suite 405 W
Evansville, IN 47710
ProRehab, PC @ Welborn Clinic
228 SE 4th Street
Evansville, IN 47713
Rockport ProRehab, PC @ Welborn Clinic Reo
3434 W State Road 66
Rockport, IN 47635
Vincennes ProRehab @ Vincennes, LLC
702 Wheatland Road
Vincennes, IN 47591
Schafer Physical Therapy
Sammy Schafer, PT, DPT, CLT
210 South Main Street, Suite 106
Brownsville, KY 42210
Partners in Physical Therapy
Katie Regan Brittain, PT, DPT, CLT
3221 Ryan Street, Suite D
Lake Charles, LA 70601
Quinn Physical Therapy
Stephen Quinn, PT
1103 Kaliste Saloom Road
Lafayette, LA 70508
Jill Nelson, BS, LMT, CLT
Silver Spring, MD
Chesapeake Lymphedema Center
Raymond Cooper, OTR
Winters Run Professional Building
1131 Baltimore Pike
Bel Air, Maryland 21014
The Greater Baltimore Lymphedema and Rehabilitation Center
Dr. Alan L. Kimmel
6701 N. Charles Street, Suite 4377
Baltimore, Maryland 21204
Contact information: http://www.gbmc.org/body.cfm?id=1264
Wow, it sounds like you’ve had some pretty traumatic experiences with massages and LE. I’m so sorry to hear that! I also can’t believe your doctor had you wrap your legs in hot towels – it just goes to show that we really are our best advocates.
Look on Lymphedemapeople.com. There is a archive callled Lymphedema Therapists in the United States. Maybe you can find that is close to you. : )
Can’t drink…hmm…I grew up in a virtually dry home because my parents, as young people (in their 20’s, before I came along), indulged foolishly in raw seafood once–two nice Jewish kids, you’d think they’d have known better!–and got hep A, from which they nearly died. After that they had very low tolerance for alcohol. I learned to enjoy a glass of wine, chilled (because I like it that way) and diluted (because that’s how the French drink it, and I learned that while living in France), with a full meal…I rarely finish the wine, and I never drink on an empty stomach or even with just a little food. No one needs to drink a lot; it should enhance a meal and taste good, not make us drunk, sick or both! As for hot tubs, those are indeed out…but warm water, especially a bubblr bath, is very nice. Somewhere between warm and hot is good…just don’t stay in it so long you turn red or your skin is hot to the touch or wrinkly! Oh, here’s a nice massage: a chair massage. You rest your legs on the chair in a kneeling position, so the weight’s off them, and the massage doesn’t include the legs. There are foot-massage machines (they vibrate and have different settings) and I’ve used those and had chair massages at conferences. The combination is divine.
Fact of life with lymphedema: it demands accommodation, like any other disability. Most people know nothing about that, so we need to teach them…even as we ourselves are learning.
Such wisdom, as always, Barbara :)
Moderation seems to be key for us Lymphies. I think it’s a good tenet for most areas of life, whether you have lymphedema or not.
i know! it seems so unfair at times…no drinking, no flying, no saunas, no sunbathing, no heat….which means we ideally should be living somewhere far north where there’s no sun lol! but on the other hand, its not a disease that will kill you like cancer…or at least not until the very final stage! urghhh, i hate having lymphedema but at the same time if you keep focusing on that, you’ll hate life…and life is so much more than a “special leg”.
You’re so right, Tina! We’re lucky that it’s not fatal, although it is certainly limiting. The best thing to do is live WITH the lymphedema, not FOR it. That is to say, it’s best to take care of your leg and keep it under control, rather than be a slave to the negative thinking.
I have a lot of trouble keeping that perspective, especially while in recovery from my eating disorder. It’s just so hard sometimes to feel like people see anything other than your affected limb. I need to shake that thinking, though, because it’s just like you said,Tina – if you keep focusing on the negatives, you’ll hate your life. Life should be enjoyed and celebrated, not spent lamenting something out of your control.
Sometimes things that we think are a hindrance, even LE, could actually be a gift in disguise. I say that because this condition can make us stronger individuals; we can have empathy with others who are sick or impaired. Truth be told, my LE is not a disability. For some, it is, and I have to be thankful that I have two legs to walk around. I used to think as a kid, “God, why did you give me one large leg? Why couldn’t I be in a wheelchair or have both legs the same size?” No one understood. I was routinely mocked, mostly by my older brother.
When I turned twenty-three I slipped on ice and developed LE in my other leg. This was a wake-up call for me to take control of my condition and get the help that I needed to have a higher quality of life. Yes, living with any chronic condition can be difficult emotionally. I’ve found that seeing a psychotherapist in additon to a physical therapist on a regular schedule has helped me to deal with my issues and come to terms with my condition.
its interesting that you also have an eating disorder. i developed bulimia prior to the onset of my lymphedema and now that i have lymphedema, i sometimes am sad and unhappy which makes me go back into bulimia. its awful, i know, but i am hoping that with time i will accept my lymphedema and stop comparing myself to models and all those stick thin women out there. who knows, maybe in a few years they’ll finally find a cure for us lymphies…how can there be a cure for some many conditions and little to no research in this area?! frustrating…i guess everyone thinks we should be happy not having cancer, which we are, but still…given all the “do not do”-s we have to obey, lymphedema has such an impact to one’s life!
I credit a lot of my eating disorder to my lymphedema. I used to think that if I lost weight, my leg would get smaller, too. I found out the hard way how wrong I was. Now I’m at my highest weight ever, and although a lot of the urges have faded, they’re still there. My lymphedema is still a big trigger, because I get so frustrated that it looks so big compared to the rest of me, and therefore I must be big, too. Ugh.
I don’t understand how there’s so little out there about lymphedema! Statistics have shown that between one to two million people have it, so why isn’t there more awareness? I think since a lot of women are developing lymphedema after breast cancer treatment, it’s slowly becoming more talked about. We’re still leagues behind where we should be, though.. :/
The lack of information is bothersome to me, too. One of my goals is to start a Lymphedema Support group in New York City because for a long time we haven’t had one!!! I’m currently considering going to graduate school and one of the majors that I’m interested in is Health Education as a result of this lack of knowledge from the general public regarding LE.
As I’m sure you know, maintaining a healthy weight is good for us lymphies. The excess weight can make it more difficult for the lymphatic system to properly function. So, I can understand why you wanted to loose weight.
I took my diet to the extreme when I was a teenager. I was a vegetarian even though I knew that people with LE could eat protein. Now, I eat meat, but, not too much. Lots of veggies and fruit and a low sodium diet make me feel best.
Manual Lymph Drainage helps not only the lymphatic fluid, but, the protein to drain. That is why I advocate for people with Lymphedema to get the specific type of massage that we need. To quote my former LE therapist, Jeanette Zucker, “Rather than overburden you with a long list of lifestyle limitations, I want to offer you a fresh perspective on lymphedema. It is important to find a balance, a place somewhere between denial-induced negligence and lifestyle-restricting regulations.”
Rosie, you’re so right. Having LE (or any sort of medical condition for that matter) forces you to have strength and empathy, just for your own sake of sanity! Not only are you more understanding towards others with chronic conditions, but you learn early on how to rely on yourself for the tenacity to deal with being made fun of or feeling “different” because of your affected limb(s).
It can be an isolating condition if you let it. It’s too easy to hermit yourself away because you feel ashamed or ugly (something that happens a lot for me). What’s really something, though, is when you face it head-on and say, “Listen, leg! You’re a part of ME; I am not a part of you.” A little cheesy, but true. We cannot, cannot, cannot let our condition make us feel like we are incapable, or let the ignorance of others (including many in the medical community) make us feel inadequate.
Your idea of going to graduate school sounds awesome. Spreading awareness is so important, and who better to do it than somebody who knows firsthand!
Best of luck to you, Rosie, and I’m so glad you’re a part of the site!
I guess the reason why there is so little research on Lymphedema is because there is no money in it for the medicine industry. They invest in projects that will pay off. Lymphedema is not something that a pill or injection will ever cure, so what’s the point… Also, I don’t think many people are aware just how many people have Lymphedema – some say 140-250 million worldwide!
About flying, drinking, sunbathing and taking baths, we can still do all these things, we just need to take our precautions.
I have done a couple of long haul flights since my lymphedema started and now know what to do. The first one made the swelling go up a little, but the last one was fine. This strange condition sure isn’t going to stop me from one of the things I love the most, travelling!
I’ve never noticed a change when drinking, but I don’t drink all that much anyway.
I believe we can sunbathe, but carefully. Lots of sunlotion so not to burn and have infections, and with the leg elevated.
About baths, tell me about it – I learnt the hard way and passed out! Now I know that water more than 40°C – some even say 34 – is a no-no. Less will do though.
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Keep up the good posting!
I still enjoy my massages from time to time. I tell the masseuse not to massage my leg. Once, a masseuse acted like she knew what to do. She massaged downward toward my ankle. Result was awful. I find that each time I have an experience like that, it serves to make me stronger and more confident in my self-advocacy.
I ended up in the virginia p piper clinic , recieved after multiple appointments only 1 massage, all the rest was crap talk and provide personal information again and again. The person who was supposed to help me out was about to give birth any moment so no possibility to argue neither, but she got her paycheck and thats the only thing that counts. So if you expect any serious massage, don’t go to virginia p piper clinic, if you like to be stuck with pain, stupid providing personal information over the phone and in person over and over again , be my guest… i know ppl don’t care, but i didn’t know it was that worse, on expense of patients .
Deep tissue massage obstructs lymphatic flow. It is the EXACT opposite of what you needed; she should have referred you to a vodder certified manual lymphatic massage therapist with complete decongestive therapy experience, advanced bandaging, ROM experience etc. I have an MLD center/spa in Florida if you ever need me!
That sounds amazing – next time I’m in Florida I’ll look you up!! 💙
Alexa, if you are ever visiting Cleveland, I also have a lymphedema massage practice and would be glad to help you out with a proper manual lymphatic drainage treatment (I am an RN and certified lymphedema therapist as well as a massage therapist)