GRRRRRRRRR I HATE LE..........
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Thanks for the response - I am in PT as of last week and shoulder is starting to move a bit better. In alot of pain though. I was doing all the stretches and isometric exercise without sleeves but when he brought out the weight machine yesterday, I told him I needed to get my sleeves on. He was fine with it and said it was a good idea. So I feel a little better about the process. The last PT I went to knew nothing about LE and fought me all the way. This one seems to at least be aware of the issues related to LE.
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I am so sick of LE. I just got out of the hospital from cellulitis. I do LE exercises twice a day, manual lymphatic drainage, I exercise, watch sodium intact, drink a gallon of water a day, compression sleeve during the day, wrap at night, you get the point. Yet the swelling in my hand won't freaking go down. If you watch Seinfeld, I look like I have a man hand. And since my other hand is quite dainty, it's an obvious difference.
I'm used to when I do everything right, I see results. Not true here. Then I come home and my sister gets upset and frustrated too for the same reasons.
I just had to vent.
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Frill, I hear you, and I'm so sorry. Cellulitis is the pits, and extra frustrating when you're already doing everything you can to control this stupid stuff. Have you tried Kinesio taping for your hand? If not, you might ask your LE therapist to help you with it. Worth a try.
Gentle hugs, and chocolate,
Binney0 -
The last thing we did was a type of kinesio taping - I've heard of that and asked if it was like that. She said the tape used is different, and of course, they're going for a different result.
Even worse, I've used up my PT for the year, so while they battle it out with the insurance company, I'm sort of on my own. I think I gave myself a fever yesterday because I did all the lymphedema exercises and massage, and maybe pushed the infection out...Idk. No one at the hospital gave me lymphedema answers unless I specifically asked questions and they didn't seem very well educated on the specifics of the subject. My bad for not asking to talk to a specialist - or someone who knew what they were talking about. The discharge info gave no aftercare information as to care for lymphedema, even though I was in for cellulitis!!!!!!
That's what happens when you go in the hospital on a Friday.
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Unfortunately, that can happen when you go to the hospital any day!
You've got me worried about that fever! If it continues do get help quickly, as a relapse is certainly possible and it's an emergency. Please do keep us posted.
Aftercare involves taking it easy--cellulitis is hard on your body and you need to baby yourself a bit. If you're wrapping, keep it light and work back gradually to your regular compression level.
When you tried the taping, how did it work for you? It's often particularly effective on hands and fingers, but it's a learned skill. You might see if you can get the PT through you insurance now based on the cellulitis--getting LE back into control after a bout of cellulitis is another diagnosis.
Sure hope you're resting up and feeling much better today! Gentle hugs,
Binney0 -
Frill, do they have any idea how you got cellulitis? I'm sorry to hear about that!
Binney, I know I've PM'd you about it before. I drink about 72 ounces of water a day. Can not drinking enough water cause cellulitis? I am scared of cellulitis due to trying to avoid antibiotics. I know I've mentioned my C Diff history which I have PTSD from. My LE is always a little worse in the summer. I have truncal LE and it pretty much stays puffy. I have a chest deformity called Pectus Excavatum and the therapist said it could be why it doesn't drain well. Ugh.
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I'm not quite sure why I got it, there had been some skin breakdown around my elbow because of the wrapping, but it had healed. Also, it's not what tipped off the MO as to a problem. My shoulder and chest were red. My arm didn't flush till I got to ER. But my PT came by and said she was afraid I was going to get it.
The PTs are working on insco and more sessions have already been scheduled next week (just checked schedule). In the meantime, I email both of them with questions and had really given them the grilling before they had to go back to insurance a week ago.
My wrist/forearm looks back down to normal. Hand is still the same paw it's been for weeks, although my sister's partner swears she sees a tiny bone here and there. I'll be glad when I have my measuring tape and can measure myself. I hate eyeballing.
Binney - the taping didn't seem to make much of a difference, actually, I guess the days after it went on was the last day of PT and everything had gone up a cm. But we only got a chance to try it once, so I don't think that's really a good sampling. Right now I'm back to compression sleeve during the day and wrapping at night. I'm just glad I wasn't put back on foam wrapping 23-7.
I'm supposed to get one of those lymphatic drainage massage .....the wrap thing where it does it for you. That might be nice.
One thing about the hospital, I got to show my sister what happens when we don't do all the stuff we do at home - Jolly Green Giant Hand. Wow, did it puff up with me not doing LE exercises and massage plus eating hospital food and no wrapping, no compression. So what we're doing is beneficial. Just not to the point we'd like.
Nighty nighty. Up way past my bedtime for a chemo day tomorrow.
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Frill, I hope you're doing better!
My armpit feels a little irritated. I shave it every day because if I don't the little hairs poke and irritate the area. It feels irritated after shaving this morning though. I'll be in a panic for awhile, praying I don't get cellulitis if the irritation is from a nick from the razor. Ugh!!! I washed it with antibacterial soap before and after shaving.
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Hi Everyone
I am leavign for Paris on Thursday, and I know this is last minute, but I have very slight Lymphedema but don't want it to get worse with the plane ride. I have a sleeve from the PT but no guantlet. Do I need one and if so, should it be the same size as the sleeve?
Thanks!
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I wear a sleeve and gauntlet when I fly. My lymphedema is mild as well but I am faithful about wearing it when I should, exercise, flying, physical repetitive jobs around the house etc.... Enjoy your trip!
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Thank you teacher. Is it the same size as your sleeve?
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Yes it is.
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HomeMom - my sleeve & gauntlet were both custom made. The 'stock' gauntlet was not tight enough at the wrist. But yes, I use both when i fly or other repetitive tasks.
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Thanks ladies! I guess I gotta get one overnight lol
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Hi all. I don't have LE but I'm considered higher risk because of the amount of lymph nodes taken out. I wish I would have gone to a specialist breast surgeon who might not have taken out so many nodes. I have pain when if I use my arm too much during the day, but compressing clothes and warm blankets really help. I also get nerve pain like sudden twinges in my arm and where my breast was. Healing from the surgery has been the hardest part of my journey until now. I was off work for 4 months because my arm was in no condition to go back to work. Thank God I am right handed or I would be useless. I've been seeing an LE specialist and she says I do not have LE or any signs of it. She says what I'm feeling is probably just nerve pain, but it scares me still. So I was wondering, what were your early signs of lymphedema? And what led up to it? Thanks!
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Hi, LovingisLiving! Imagine that, same surgery group and now we're here.
I still have the phantom twinges (that's what I think of them as) in my chest, but they've gotten a lot better. But the other day of the PT was massaging that area and she said I had some scar tissue building up. Maybe that could be what's going on with you? Your LE person will be able to check that to see. I didn't have any LE, just a tiny bit of swelling that was considered normal post surgery and now I have LE. My "people" think it's being aggravated by Taxol because I'm doing everything else I'm supposed to and my body just is not playing right. My last dose of Taxol is Thursday, so I guess we'll find out.
As to what led up to it, in my hand, it was literally overnight. I woke up and looked at my hand and was grimacing to myself about cancer, blah blah blah and realized that my other hand looked normal. I saw PT that day, measurements were taken, started the wrapping routine. It works on everything but my hand. Now my tiny fingers (4.5 ring finger) look like sausages. *sigh* My fingers held out for a long time before they puffed up.
Your soreness isn't due to any cording? I wasn't given the right post surgery stretches for almost a month, by then my range of motion had diminished greatly. I did the exercises about 2-3 weeks, started PT, got it approved 2 weeks later and during that time was almost back to full ROM. She broke up several cords that first visit. Those can happen without any LE.
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Frill, I have LE in one arm and hand, and the hand was very resistant to wrapping. The LE therapist finally ordered a custom glove that did the trick. I wrapped for a few weeks and now wear a sleeve and the glove.
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Hi Frill! Nice to see you here but I'm sorry you're still going through chemo. How are you feeling?
I think I have the scar tissue that you're describing, but in my arm. It's kind of a hard area that the PT massages. Still so sensitive in that area. I don't have "visible" cording anymore, but I feel a lot of tightness. I think the nerves in my arm were damaged. My PT/LE specialist says if I still have these symptoms after 1 1/2 years, I will probably have them forever. But she isn't concerned because it's "only" been 5 months. Hard to believe it's been that long!
If my arm was okay, I would probably never think about my breast cancer during the day. But I have to be so careful about what I do with my arm. Sometimes I forget and carry something a little heavy. My PTO says she isn't as concerned about carrying as she is about getting injured in that arm (like cuts, insect bites, even hard bumps) that could lead to infection. She mentioned that she has a lady who had 2 nodes removed and got LE, and someone who had 30 removed and no LE. It's just a toss up, just like everything else we go through.
Good luck with your future treatments and I hope all goes well for you!
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I had 13 Lymph Nodes removed in Oct 2015 at the time of a Bilateral Mastectomy , did 6 rounds of Chemo during which I developed Lymphedema in my left arm. I went to physical therapy for exercises and got a sleeve. I was told I had a mild case but could get worse during radiation.
I started radiation last week ( 5 days a week M-F for 6weeks ) and on Sunday woke up in the middle of the night with horrible neck pain and my arm & hand swollen. I knew the arm and hand could swell but did not know if could effect the neck/shoulder area. Has anyone had this and if so what helped with the pain?
Isn't it enough to have cancer, go thru surgery , go through chemo and think you are in the last phase ( radiation) and then develop LE????
Very frustrated!
Alicia
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Hello Alicia, sorry that you have found yourself amongst the "swell sisters". Yes, wherever there are lymph nodes, there could be swelling. I would recommend going to a Certified LE Therapist. You mentioned that you went to PT before. Was that person a certified LE Therapist? If so, go back, and learn manual lymph drainage. If not, find a certified one. It is really important for the person to be certified so you do not get bad advice.
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm this link can help you if you need to find one.
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Hi Aliciavg, and welcome to Breastcancer.org. We're so happy that you found us and decided to join this amazing and supportive group of people.
If you need any assistance, please don't hesitate to reach out to us. We hope to see you again on the boards!
The Mods
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Thank you glennie19 for the information. I am not sure if she was a certified LE Therapist or not. I went a few times and she did a gentle massage where she barely touches the skin and tries to move the fluid to other Lymph Nodes, she fitted me for the sleeve as well and showed me 2 exercises in which you move you effected arm up and down a wall to get the fluid flowing. I will look at the information on the link you sent and hopefully find someone that can provide some relief.
Thank you again!!
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Doing gentle massage sounds good. She may be a Certified LE therapist,, I just mention cuz there have been people here who have been to PT's who were not certified and they didn't get help. Best of luck, and do keep us posted. That website has lots of helpful information.
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My LE showed up after rads. After 5 years it's pretty stable, very manageable.
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Perhaps this has been asked already......but is there one kind of LE therapist training that is better than another? I had one treatment once, not from a certified therapist and I left no better than when I walked in. I have some swelling in my upper arm and truncal swelling, with 14 nodes removed in 2009. It is not painful yet, just discomfort. I am a jeweler so I use that arm when pounding the metal and am concerned that the limited swelling will increase. Certified therapists are within 50 miles but none closer. I would like to choose one that will help and am just not sure which school that trains them gives the best results. Any answers to this question? Thanks and sending good thoughts.
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This website might help with your question Barbara:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
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GmaFoley-I went to that site but my question is more which discipline is more helpful to the women here, a LANA therapist or someone that is certified to do MLD. The person I had that gave me one treatment did MLD and she may not have done it right, but it did nothing for me. In that case should I be looking for a LANA therapist or do they do the same type of massage.......or did I just find a bad therapist? Hoping someone can give me some insight. Thanks for reading this question.
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My LANA therapist is certified to do MLD.. In fact I now have 2 in my town and they both are wonderful in controlling the LE. The swell didn't go down overnight it took about 3 months to get it in control, but once I started using my compression sleeves and torso garments, it did pretty well. I only have slight swelling until the summer comes, then it is compression most of the time.
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I had the same experience as Gma. It took 2 months going twice a week to get the cording broken up and the swelling under control. In the mean time, the therapist trained me to do MLD myself every day so now I only see her maybe twice a year. Lots of people throw around terms like MLD, but make sure they are certified as the StepUp site describes.
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Thanks, GmaFoley and MinusTwo, now I have a better idea where to start. My first experience was so disappointing that I have waited all these years before considering looking again.
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