Is this pain and discomfort lymphedema or something else?

Do you also wear a glove with your sleeve?

Can you go back to the physiotherapist, or someone more familiar with lymphedema and cancer, for stretches/exercises to get back your range of motion? I go to a kinesiologist who works in the breast clinic. I still have to do my arm stretches to keep my range of motion.

Your shoulder/back pain could be from the imbalance caused by lymphedema or from your surgery. When I walk I avoid having my arms straight. I have walked with arms bent by putting my hands on my hips, in my pockets, or even on top of my head (last one only on the treadmill). These arm positions keep my arm away from my torso. I do the same movements for both arms for balance.

You may find that you have lymphedema in your chest area as well as your arm. The heavy arm on walking is what my lymphedema feels like. My shoulder can sometimes feel sore from holding my arm out at a different angle to compensate for the achiness and my side can sometimes feel sensitive.

I need to do my arm stretches to maintain my range of motion. Even if you won't get your range of motion back wouldn't gentle stretches stop you from losing the range of motion you currently have and may even improve it a bit.

I also walk with my hands in my pockets if my arm is sore and always wear my glove. When the whole area is sensitive I also wear a compression vest especially when walking and it helps. I also keep my arm raised up on pillows when sitting or resting. I don't normally need to take painkillers as if it starts feeling painful I cut the walk short and do stretching exercises and massage at home instead until it feels better.

A lot of what your specialist has said is different than the normal lymphedema advice but it may be appropriate for your individual circumstances given your arm surgery and stage iv cancer. Personally I would seek a second opinion to make sure as what you're doing now doesn't seem to be working out for you if you have pain and discomfort.

Aoibheann - did you read through the link about LE? I too think you really need a second opinion. The first thing that any trained LE therapist does is manual lymph drainage - and then to teach you how do do it yourself. And the most usual cause of LE in the arms & trunk is from treatment for cancer - either lymph node surgery or radiation. The protocol for sleeves is to NEVER wear with w/o a glove or gauntlet. Please do read through the link.

Aoibha I too have the soreness and fullness. I can tell a big difference if I don't do MLD, exercise or drink lots. I only recently added a glove because arimidex causes my hand to swell. It's a miserable feeling. I definitely wear both when exercising or manual labor or flying:)

My LE is arm, hand and torso. I keep my arm propped up on a pillow when in bed or on the couch.

I can't reach my back very well but otherwise I have decent range of motion. I would think the exercises you were given after surgery would still be beneficial. Start with baby steps and don't push yourself.

I am stiv with bone mets. It's never been suggested that MLD would cause my cancer to move. It's very gentle stretching of the skin like you would pet a cat.

I take cymbalta for pain. It's an anti depressant but blocks the pain. Is there a warm water pool near you? My therapist says it's the best place for LE.

I'll attach some links for movements that I do to move the lymph. They are very simple and gentle. I can feel my nose clear first. I don't always notice a difference right away with Jin Shin but I always feel better the next day.

I also just hold my arm up and use gentle sweeping motions with the other hand to move the lymph. I start just above the armpit and sweep down. No pressure, just light touch. I do it when watching tv or laying in bed. You do it as often as you feel the need.

I'm assuming since your therapist doesn't believe in MLD that you couldn't get a pump. Is there a massage therapist that specializes in cancer patients? Are there any yoga classes near you? I found my local gym to have exercise classes and yoga for seniors that should be gentle.

Please keep in touch.

https://community.breastcancer.org/forum/64/topics...

…Another issue that has been raised on this thread is whether or not MLD can be used in Stage IV cancer. Earlier, the thinking was that moving lymph fluid could spread cancer cells. But think about this a minute: any muscle movement pumps lymph fluid, so if you wanted to stop the flow of lymph fluid in your body you would have to lie perfectly still 24/7. Even if that were possible, that, in turn, would not only cause your muscles to atrophy but prevent your lymph system from moving out the "trash" it normally handles, and you'd be vulnerable to infections of all kinds.

More recent research has shown that Complete Decongestive Therapy (CDT--of which Manual Lymph Drainage is a part) can safely be used adaptively even in Stage IV settings. Here's one article you might want to share with your doctor and/or therapist that concludes, "The CDT has much to offer patients in the palliative setting. Both a failure to recognize the need for adaptation and a knee-jerk refusal to consider its use undermine outcomes. It is hoped that the ideas suggested in this article will guide clinicians to utilize, also to individualize, CDT in ways that offer the patient the possibility of the greatest benefit and least harm."

https://www.researchgate.net/publication/235670033...

And finally, Zillsnot4me posted an interesting video (thanks, Zills!) The recommended interval of 20 minutes for each position is probably NOT a good idea for you, because stagnation is your enemy here. Try it out for a few minutes at a time and see how it works for you. The last position, with both hands on head, is an absolute no-no unless both arms are securely supported. Anything that tires your arm will draw lymph fluid to the site (which you obviously don't want!), because that's the body's way of sending in the support troops. So only attempt that one (if you choose to) with firm support under your arms.

I so hope some of this helps you get to a place where you can reduce the arm swelling, eliminate the back pain, learn enough self-care to take back control of your life, and get back to doing the things you love.

In the meantime, hugs, prayers, and--well, chocolate always helps!
Binney

I'd be finding someone so I could get competient care anx information. You might find an OT (Occupational Therapist) LET would help you. They work not only on physical but also coping with general living more than a PT.

Obviously I am not medical personnel but have dealt with LE for almost 7 yrs. My experiences have been quite different than many as no 2 of us are exactly the same with how it presents or how we handle it - but they are mine.

I would be finding someone else who has more understanding of LE. I have never heard that it is too late to work on/with exercises to gain at least some ROM. Because it has allowed to go on for a while - perhaps will never get complete back but should be able to get some with work. Has the joint been checked by an orthopedist for possible damage in it? Doing nothing will only cause more lack of mobility and possibly make it permanent. Stroke patients and even quadrapeligics have assisted PT to prevent contractures which without movement/care will happen.

You said you have compression fractures in your spine - can happen in other parts of body also. Nerve damage could be involved and causing pain and lack of mobility. I learned this last year that it is possible for nerves that have been damaged to 'hurt' in a different site than the injury. Have nerve damage from UMX and last Feb I succeeded in doing a small tear to my rotator cuff - pain was down 1/2 way to elbow - not where the tear was.

It (logically to me) makes no sense how MLD would cause cancer to be spread. Lymphatic fluid is moving around the body continually as it should. LE is when, because of removal/damage to lymph nodes, it is prevented from moving as it would normally from a particular/isolated area.

For longer walks/hikes, I used a hiking stick. I like/feel better with it adjusted a bit higher than is suggested but it's comfy for me. Also comes in handy if you walk in areas where 'idjots' illegally let their must run loose. Or on rough terrain.

We each have to learn what 'works' for us - which may be different than what works for others. I'm one who is weird. Cold weather (winter) causes me issues - hot weather (summer) doesn't. For most others, the opposite is true. The more physical activities - the better, be they quite strenuous or repetative. I get lots of scratches/scrapes/punctures from all the 'things' I do - in the 7 yrs I've been dealing with LE I have not had an infection. I do not use antibiotic creams or oral - just hydrogen peroxide. (Just saying it works for me - obviously not for all and I would definately use them if ever needed.) Garments are also different for me - I have to have low compression to keep LE under control - higher levels make it much worse quickly - for others, it's the exact opposite. Also I do not 'fit' in OTS garments so have to be custom - especially gloves as I have syndyactyl (somewhat webbed fiingers) so gloves have to be different to accommodate the webbing without cutting the webbing.

My point is there is a lot of great info that has been given here. Educate yourself all that you can - there is 'power in knowledge'. However, as with almost everything in life, there are very few (if any) absolutes.

Yes, I wear this compression bra 24 hours a day. My LE therapist said it comes up high enough under the arms & up the back to be effective. I have only truncal & breast LE. Many other women wear vests or compression Tees. Again - noted above - each one of us is different and none of us are docs. Hope you can find a qualified doc or LE therapist to at least get you started.

Note - I have no financial interest in this company & am not trying to sell the product. It just works VERY well for me.

http://www.wearease.com/wear-ease-products/product...

Aann, WearEase makes a number of compression bra and cami options (I use the Slimmer camisole). Here are some other options:

http://www.wearease.com/wear-ease-products/compres...

Aoibheann, in retrospect I agree with Binney - you're not in a good, stable point so it doesn't make sense to try "doing without." I'm sorry I strayed away from responding to your post.