Posted on: Jan 21, 2018 07:48AM - edited Jan 21, 2018 08:51AM by B123
hello, looking for advice please. My effected side has always been a little bigger then other following BMX and implants. My effected side is a bit swollen on upper top/side of implant, my underarm is numbish and achy all the way down my arm, shoulder stiff but feels better when stretching.. I have no redness and it's not hot. I did shovel heavy snow 3 days ago but I also had a root canal a week ago. I had antibiotics and z oak to protect from infection. Is this just a typical LE? I have had feeling before and wore a sleeve but with root canal imso nervous. Thank so for any help
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Posts 1 - 19 (19 total)
Jan 21, 2018 10:21AM Shellsatthebeach wrote:
I would be more nervous to shovel heavy snow. My PT told me not to lift heavy items. Do you see a lymphademia specialist? If so, I recommend calling as soon as possible.
Jan 21, 2018 10:54AM Sara536 wrote:
I saw a PT soon after surgery to help with stretching and smoothing scars which were thick and tight. She happened to also be a lymphadema (LE) specialist so she took a lot of measurements around each finger and around several places on both arms. She showed me some arm exercises to help prevent LE. Those measurements came in handy as a baseline reference and she was able to assure me that there had been no change.
Jan 21, 2018 11:36AM B123 wrote:
I forget about the rules of lifting sometimes, but it’s been 6 years. I just want to make sure it’s not an infection? I have a Velcro chest compression, should I wear that? I have never seen a Lymphedema specialist. I wouldn’t know where to start plus don’t think it’s covered by insurance
Jan 22, 2018 05:17AM Binney4 wrote:
Here's some information about the kind of infection we can develop when we're at risk for lymphedema (it's called cellulitis):
Almost all insurance, even medicare, will cover lymphedema treatment, but many (including medicare) won't cover the garments we need to control it. So you should be able to see a lymphedema therapist and have it covered by your insurance. Do check it out! You need a referral from any member of your medical team. Here's how to find a well-trained lymphedema therapist near you:
Please keep us posted and let us know what you discover.
Jan 22, 2018 08:45AM B123 wrote:
That’s so helpful, thank you! I have been wearing my sleeve and my chest compression garment I got from PS at beginning of this nightmare. Seems to be helping.. Are these signs of LE? Why would shoveling this time trigger it? Ugh! Some pains felt on both sides but it’s better..
Jan 22, 2018 10:57AM Veeder14 wrote:
Yes, cellulitis, it's really dangerous. I got this after upper leg lymph nodes removed and I developed seromas, I didn't even have Lymphedema. Before the red skin rash showed up, I had a high temperature and the chills all night. The red rash kept spreading despite being given IV antibiotics at the ER, and antibiotic pills the next morning. The infection went right into the seromas within 24 hours which required immediate surgery to get the infection cleared up. My white blood count was off the charts also. If you ever have this see your doctor or ER right away.
Jan 22, 2018 11:26AM B123 wrote:
omg Veeder, I’m so sorry that you went through that. You really just scared me. I am going to call my mO tomorrow. The swelling is not bad now that I started the compression, but I feel movement in the breasts “crawling”, pins/needles on side of breast and under arm (always have) numbness down arm and shoulder side and back of it gets zings. My good side with a mastectomy has zings and slight crawly feel to. I just don’t know if I did something or if something is wrong?
Jan 27, 2018 06:50AM - edited Jan 27, 2018 06:51AM by hugz4u
I don't recommend shoveling snow unless your in fine shape. The sudden shovelling puts to much stress on your arm and sends in lymph fluid quickly. This is ok if you have nodes to clear but us being nodeless it isn't good.
If you must dig then do a couple minutes. Raise your arm straight in air and pump slowly 25 times every so often. Drink tons of water to wash out stagnant lymph fluid and rest the arm during and after.
Much easier to have someone else do it so you don't get a le flare and spend much money trying to fix it. Hire Boy next door. It's cheaper in long run!
Jan 27, 2018 07:16AM ksusan wrote:
I go to an exercise class with a lot of arm work. I built up to it gradually, stay hydrated for class, and do MLD before and after. I have compression garments with me in case I notice swelling. This ongoing practice helps me feel more confident about using my arms outside class in ways that the class supports. For example, I recently felt comfortable kayaking for over an hour because the motion was one I do a lot in class and my body is used to it.
That said, I also stayed hydrated, did MLD before and after kayaking, and evaluated whether compression was needed before and afterward. If I do any raking or shoveling, I do no more than 10 minutes without switching arm movements, taking a break, or drinking water.
Jan 27, 2018 02:42PM ksusan wrote:
Thanks. Just really saying that it all requires planning and building LE intervention into out routines, but it does become more automatic.
Jan 28, 2018 04:27AM Outfield wrote:
There's no uniform, absolute rule about what you can or cannot do with lymphedema. Everybody's different.
That said, the studies that have shown benefit to exercise ramped up the amount of exercise, starting at a low level of challenge. If you're not in great shape and exercising regularly, shoveling snow is like jumping into working out at a pretty high level of challenge.
Have you seen anybody about this? I recommend you get a referral to a good lymphedema therapist and get back in to be seen again. If you're not familiar with how to manage your own lymphedema, it's normal to need guidance. https://www.stepup-speakout.org is a great website created by some very wise women who have been involved with this discussion board. It's really well-researched, and it includes some things doctors always seem to forget to tell you.
Finally, I too like Veeder have been really sick with cellulitis and ended up in the hospital. Cellulitis is different than just a flare of lymphedema swelling, and sometimes the symptoms can be different than cellulitis in other parts of the body since surgeries for breast cancer often damage sensory nerves. Both times I've had it seriously, I've had loads of bacteria in my blood, a high fever, felt miserable, yet not been able to feel any pain from the red patches on my arm. I'm now in the habit of looking at my arm in the mirror if I start to feel cruddy.
Good luck, and I wish you endurance dealing with this. Having learned that I can exercise really as much as I want (given I work up to it) and having dealt with some flares and been able to bring them down again (I use bandaging if it's bad, my night garment if it's mild), I don't feel the panic and despair I felt when it was first diagnosed.
Jan 28, 2018 05:03AM B123 wrote:
oh.. thank you ladies for all your responses! SO helpful. I did not know about working up to things. I was so frustrated with the thought that I can’t even exercise without issues. Where do you get your sleeves from? I would love to buy a better one.
Outfield, what is vadeer? I’m sorry for what you have gone through but so glad you have pushed through. Thank you for the link!
Ksusan, can I ask what is MLD? I’m afraid to do anything anymore. I am so tired of the numbness and pains.. The swelling really scared me.
Hugs4, I have shoveled many times before, never flared this much. I really felt it, it’s much better but I do still feel it.. enough where I’m scared to do anything..
Jan 28, 2018 10:18AM ksusan wrote:
MLD=Manual lymphatic drainage. Search for it on this board for links to videos.
Jan 31, 2018 11:09AM Outfield wrote:
Sorry, that definitely wasn't clear. "Veeder" is the forum name of someone who posted above me on the thread who also had problems with cellulitis.
B123, it's easy for me to feel even a little cavalier about my lymphedema now, but believe me, when I was first diagnosed and I was panicked out of my brain. I thought my active life was over, and I thought I'd be disfigured by swelling. I drove my lymphedema therapist a little nuts, I think. I just wanted to say that I get it about being afraid to do anything, but at least for me it was not like that forever. I learned how my lymphedema behaves, I got so I felt in control of it, and then I went on doing everything that I did before (with one exception - I don't let my arm go in a hot-tub anymore). My life is not wrecked.
This really is a medical problem where you must be an educated patient to get good medical care - doctors are taught next to nothing about it, and not all PT's and OT's are qualified to treat it. Even among people with lymphedema "certifications" you have to be careful because being certified as a lympedema therapist isn't the same as being licensed as a nurse, PT or medical doctor - there is no one governing body issueing the certificates and making sure everyone is learning a minimum amount of relevant stuff. Do go to the website I listed above, and keep looking until you find someone good. They really are out there, and there are more of them all the time.
Jan 31, 2018 11:18AM B123 wrote:
outfield, thank you and I will definatley check that out. I guess after 6 years, still have a lot to learn.. but that’s why we’re here and thank god for each other! I’m taking it easy with that arm and not pushing so much.. started the stretches so hoping that this will stop feeling so prickly and numb.
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