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Are You at Risk for Lymphedema? Preventive Steps for Lower and Upper Extremity Lymphedema, Lymphangiography and Lymphoscintigraphy, Lymphedema and Obesity, Male Breast Cancer and Lymphedema, plus Are You at Risk for Lymphedema? View articles.

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  #1  
Old May 20, 2009, 05:26 AM
dotoo007 dotoo007 is offline
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pain in lower back and groin caused by lymphedema?

Hi. I am new to lymphedema and this site. I have read a lot of the posts and learned a lot from them. I had cervical cancer treatments last year including radiation and chemo. In March I was diagnosed with lymphedema. My right leg became very swollen. I have seen a physical therapist twice so far and learned a lot from her about self massage and exercises to do.

I saw my radiation doctor this week because of pain in my lower back and groin areas. He said this is caused from the swelling from the lymphedema putting pressure on groin, back and hips. He thinks the lymphedema is in my back and abdomen as well as my leg. I did not see this in any of the posts I have read and wondered if anyone else had experienced this. The pain in lower back and groin is so intense that I have to use a wheelchair if I need to walk more than 50 feet or so and am taking percocet every 4 hours. Even with that, the pain is still intense if I try to walk far or stand for 5 minutes. I have had bone scan, cat scan, ultrasounds. All of them have been clear. I will begin using a fenatyl patch today. My therapist keeps telling me that lymphedema does not hurt.

If anyone has any advice I am open to suggestions.
Thanks,
dotoo007
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  #2  
Old May 20, 2009, 07:32 AM
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Ann Ann is offline
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Seeing Your Therapist

I'm surprised that you have only seen your therapist twice. Usually lymphedema treatment begins with an "intensive." During this time patient sees their therapist every day for one or more weeks. Each day the swollen leg is massaged and then wrapped (bandaged) to reduce the swelling. At the end of this phase the patient is fitted for compression garments.

Exercise is an important part of lymphedema treatment and you should try to do some as you are able (even if you use a walker).

The motion of the muscles and joints help to move the lymph out of the affected area. Sitting all day in a wheel chair, with you leg down, will not help reduce the swelling.

If you have access to a pool exercising in warm (not hot) water is pleasant and helpful.

Best wishes,

Ann
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  #3  
Old May 20, 2009, 02:48 PM
dotoo007 dotoo007 is offline
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Hi. Thank you for responding. I am scheduled for therapy twice a week. A doctor already had me in 20-30 compression hose before I went to a physical therapist. I was unable to afford the PT until now. I will start going twice a week on Friday.

I do the self massage and exercises she taught me in the first two trips. I do these daily. I am able to do them while sitting in bed or laying on floor. I am in a wheelchair except for very short walking. Even so, I continue moving legs and feet often. I also work on keeping my upper body strong. Being in wheelchair makes it neccessary to keep strong. The doctor told me yesterday that I will probably be in it for a few months. He also put me on a pain patch (fentanyl). He suggested I change the compression hose to panty hose instead of thigh high. Hopefully, all of this together will help.

Does anyone else have groin and back pain from this?
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  #4  
Old May 24, 2009, 03:00 PM
Cassie Cassie is offline
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Hi, dotoo,
I have post-cancer arm lymphedema, and when it is out of control my whole chest and back can be very painful. I did not find that pain meds helped much, though. The only way to get the swelling down and relieve the pain is Complete Decongestive Therapy, which includes the massage and exercises, but also wrapping your leg in a special way with layered short-stretch bandages for a period of at least a couple of weeks. If you can only afford to see the therapist a couple of times a week, she definitely needs to teach you (or a friend or family member) how to wrap your leg in this special way. I'm concerned that you'll only waste money you can't afford if you're not getting the treatment it takes to bring down the swelling and relieve the pain.

Dotoo, with the right kind of lymphedema treatment you should see real reduction and pain relief within a few days. I had to switch therapists, because the first one I saw wasn't adequately trained. Do ask how many hours of specifically lymphedema training your therapist has had, and if necessary find another. There are articles on this site that will tell you how much training a therapist should have, and what your treatment should involve. You might want to copy them off and take them with you to your therapist to spur a discussion of what results you should be seeing, and how you can work together to get them.

Yes, lymphedema can cause considerable pain. Reducing the swelling and regaining control should bring you real relief. Keep us posted!
Hugs,
Cassie
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  #5  
Old May 25, 2009, 11:34 AM
dotoo007 dotoo007 is offline
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Hi Cassie. Thank you for writing. I will be going to therapy twice a week. The pain patch is finally helping with the pain. Thank God. I can finally sleep most of the night. The therapist added two more exercises Friday. Knees to chest, and lay on back with legs bent at knee, lift one leg until straight. Hopefully these will help the back muscles that cause part of the pain. Thank you for caring.
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  #6  
Old May 27, 2009, 07:39 AM
pinkbear pinkbear is offline
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I can relate to your pain issues! My LE is in most of my body. It's primary LE and not related to cancer. It's been untreated most of my adult life. ( no one had any idea what it was) My body is tender to touch in most areas. I get much pain in my groin as those lymph nodes just do not work correctly.

My lower back hurts and I feel it's from carrying too much fluid in my body. Or it could be the way the fluid is making my body not be as up right or something. I really don't know I just know it hurts. I try advil & tylenol but with little relief. Advil is best but it makes my acid reflux act up. I'm glad you are getting relief from the pain. You've given me an idea about looking into a patch when it gets really bad.

Good luck
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  #7  
Old Jun 6, 2009, 01:40 PM
dotoo007 dotoo007 is offline
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Hi pinkbear. I am sorry to hear you have such a bad time with this. The pain patch has been a life saver for me. Every time I have break through pain, I am reminded how much discomfort the patch is helping with.
I hope you can find some relief soon. Thank you for answering. The groin and back pain really had me confused. At least I know I am not the only one fighting it now though, I hate it that you have it also.
Good Luck,
dotoo007
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  #8  
Old Jun 6, 2009, 09:47 PM
pinkbear pinkbear is offline
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You too have helped me. I will keep in mind the pain patch for further info
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  #9  
Old Aug 19, 2009, 09:34 PM
guit30 guit30 is offline
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Lightbulb

I get alot of pain in different areas too. I'm wondering if it is due to the cervical stenosis and herniated disc that I had before I even got lymphedema, had a great session with the pump today, got all of the swelling down, but I was still in lots of pain
Jim
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  #10  
Old Aug 20, 2009, 06:54 AM
pinkbear pinkbear is offline
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I am happy to report that much of my pain is better! I feel it's from the MLD and draining this awuful fluid. I have feeling in my feet I've not had for years! It's nice to see the changes in my body even if they are slow in coming.

Don't give up!
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  #11  
Old Aug 20, 2009, 09:13 PM
guit30 guit30 is offline
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Thumbs up

Thanks Pinkbear
Jim
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Old Aug 21, 2009, 04:56 AM
delidiva delidiva is offline
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Thumbs up hi again

glad to hear you r all troopers out there we will never give up keep on going and remember pray ALOT!!!!
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  #13  
Old Aug 21, 2009, 05:51 PM
dotoo007 dotoo007 is offline
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Smile

Hi everyone. I just wanted to report that the swelling in legs and back are much better now. I have been doing a wrap at night, MLD, and exercises. I think the wrap made the most difference in my improvement. I found an excellent therapist. The pain is still bad in my back and groin but I continue to hope and pray that it will improve. Thanks to all who post on this site. It was the most informative site I have found.
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  #14  
Old Jan 3, 2010, 08:47 AM
scorpio43 scorpio43 is offline
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I had the same diagnosis and treatment you describe as well as developing lymphedema in the right leg. I had severe pain in my right leg similar to what one would experience with a slipped disk pressing on a nerve. (Was in a wheel chair) The back specialists decided it was caused by the same thing that was causing the lymphedema (scar tissue) after an MIR of the back. He wanted me to go to a pain management doc. That meant having a pump or some other thing implanted in my body. I went to an acupuncturist instead ... and it WORKED!! I've been pain free for several months. I went every day for five days then 3 days a week for 3 weeks. It was expensive but worth every penny. Now I'm considering going back for the lower abdomen pain and back pain. It can't hurt and it may help!!
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  #15  
Old Jan 3, 2010, 11:41 AM
pinkbear pinkbear is offline
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Thanks for the info on acupuncture. I've heard good things about it for pain. I"m willing to try in next time my pain flares. Glad to know you found relief. Any relief of living with LE is good!
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  #16  
Old Jun 23, 2012, 04:18 PM
Jude Jude is offline
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Lymph in groin

I am new to the lymphedema disease. I, too, have the primary form. Until today, I only had mild swelling in my feet and ankles. I recently got a pump and feel like lymph has moved into my groin because that area feels uncomfortable and thickened. I am female. Have I interpreted this feeling correctly?
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  #17  
Old Jun 23, 2012, 04:57 PM
Cassie Cassie is offline
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Hello, Jude, and welcome,

I wonder if you've found a well-qualified lymphedema therapist? If not, that's an important first step. S/he will teach you the self-manual lymph drainage massage, wrap your leg in layered bandages to reduce the swelling, then help you order and fit appropriate compression garments. Also, you'll learn some helpful exercises and how to care for and protect your skin.

Pumps are not really standard lymphedema treatment. They're an additional help some people can use once they've completed therapy and learned how to do the self-care. In some cases pump use on the legs has resulted in abdominal and genital lymphedema spread, so you'll want to stop using it completely and return to (or find) your well-trained lymphedema therapist for help in moving the fluid out of your groin. You do know your own body best, and if that's what you're feeling, trust yourself and stop the pump until you can get a therapist's help.

Please do keep us posted!
Cassie
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  #18  
Old Jun 24, 2012, 08:19 AM
Jude Jude is offline
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Thanks, Cassie. I did not know the pump was returnable, but I did stop using it. I was diagnosed 2 1/2 months ago by a podiatrist who I no longer see. I wear compression stockings and have gone to 4 physical therapy sessions where I learned the massage and how to wrap my feet. I never got or was offered the intensive therapy that everyone speaks about. Unless I get a flare up, I am done with therapy. I guess this constitutes a flare up. So, I will be heading back to my primary care doctor. Is there anything else I should ask for?
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  #19  
Old Jun 24, 2012, 09:27 AM
Cassie Cassie is offline
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Jude, good morning,
Whether your pump can be returned or not depends on who you bought it from and how long you've had it, but at least do stop using it and either return to that therapist or find one who will take the time to provide all the treatment you need. The National Lymphedema Network website has a Position Paper on Diagnosis and Treatment. Page 5 (and the following pages) describe the treatment you need and also the qualifications you should look for in a lymphedema therapist. Here's the website:
http://www.lymphnet.org
Copy off those pages and take them with you to your primary care doctor as well as to whatever therapist you see, to show them what the therapy should involve. Shortcuts usually only make things worse, so hopefully knowing what you expect can help them plan treatment that really works for you.

Let us know how it goes!
Cassie
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  #20  
Old Jun 24, 2012, 01:26 PM
Jude Jude is offline
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Thanks, Cassie.
I went to the link you posted and am printing the pages now. I will let you know how it goes.
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