LE Pain

Anonymous · June 2014

I'm sure for those of us who have this, the associated LE aches, discomfort and what not has never been nice. I've always been under the threshold of having to think about painkillers. Ive always been able to counter it somewhat with fist pumps and exercises or evening out given activities. Last month or so Ive had to rethink this as Ive had burning and aching issues in the shoulder and arm growing in intensity and frequency. The last week its been everyday except one. Its usually lat4e in the day and keeps me awake at night. I don't seem to recall seeing a lot on the pain aspect here and what people are actually doing if they're really struggling with it..

If you are, what are you doing or what are the best painkillers and have you been successful in getting the pain level back under control. Strangely we're in winter here when you'd think the pain would be less.

floaton · June 2014

Musical, for me anyway, working with a great pt who has shown me how abnormally I've been using my arm and shoulder due to pain and le, along with giving gentle stretches / excercises to help it move/work more normally, has been very helpful with the pain, even the burning / skin discomfort. I was wary at first it'd make everything worse, but going very slowly hasn't flared my arm. I think it's helping my brain reprogram a bit after being uncomfortable / in pain for a while.

I know this isn't for everyone, and the pain you're feeling may be very different than mine so may need a very different approach, but the other thing that has been helping me with the burning arm pain is taking a day off here and there from compression (with the blessing of my let). For me, it helps with the "nervy" skin burning that was getting impossible to take and we thought might be making my swelling worse. Then I'm good about it again until my arm gets hypersensitive again. It's a calculated balancing act that I'm hoping resolves once my nerves have healed more.

steelrose · June 2014

Musical, thank you for this post. I'm experiencing the same troubles in my breast/trunk, and I'm looking for solutions. I understand that not everyone experiences pain with lymphedema, but I certainly do! Sometimes it's just a burning sensation, other times it's full on pain... especially at night. I haven't found a pain medication that will touch it, and I've tried Naproxen and Gabapentin. I also wear a compression camisole all day, and I'm doing my stretching and exercises. But although I feel great when exercising/stretching, it often triggers a flare-up that night.

I will be following this thread! Wishing you well...

Rose.

Anonymous · June 2014

Thankyou for your responses.

I had LE pretty much after finishing Rads (nearly 4 1/2 yrs ago). To start with LE was minimal swelling (above elbow only) and the usual aching and burning but to a much lesser degree than what is happening now. Wore sleeve for a couple of hours, (no gauntlet or glove) until I read here the advice was you should have a gauntlet or sleeve. Upon discussion with my LEist a gauntlet then glove was included in the mix. Also it was "suspected LE" on my prophy mx side 11ths after BC mx. Been wearing Juzo OTS on that arm but no gauntlet or glove and my hand has never done anything. Theres no visible swelling but occasional aching.

Over a year ago, and for no real reason I could see, the BC side arm swelling got worse and moved below the elbow, and the aching and burning has been increasingly getting worse. I might just say I do have issues with PN (peripheral neuropathy) which sure throws a spanner in the works where not only LE is concerned, but breast surgery as well. We know that some of us (to varying degrees) will experience numbness and other symptoms of nerve damage for the rest of our lives. Its hard for me to separate out which is from surgery and which is PN and which is LE.

floaton I may just very well heed your advice about "giving my arm a compression break". Last time I tried that though it had the adverse affect. However theres other things in the mix now and Im going to mention it to my LEist. Appt is still about 10 days away. From your dx notes, yes, youre still in the process of healing and so hopefully that will get better and better and thats one less thing to deal with.

steelrose, Hugsss. So sorry you are experiencing that and LE sure has "a life of its own". Theres another pain forum on BCO but I think a specialized pain thread here cant hurt. (OK that pun wasnt intended but if we can smile about something....) Im taking gabapentin for PN but the very minimal dose. I suppose what Im taking is not even working. One way to find out. Stop altogether. Going to look up our NZ equivalent for Naproxen

Im even beginning to describe some LE pain as nothing but VICIOUS.

Dejaboo · June 2014

Musical I am sorry that your pain has gotten so bad. I hope you can figure out something that will help. I have not found any pain meds to help

I am one that has a ton of pain with my Truncal LE (my arm is usually pretty good to me) I have started Dry brushing- about 2 weeks ago (mainly for my trunk) It is really helping. I follow the dry brushing with a mix of Coconut oil, Lavender oil & Lemongrass oil. I skipped dry brushing this past Saturday & I could tell!

I like having a pain thread in the LE forum...As our pain really is different then other pain. What someone might suggest us to try for it would often never work. And that to me makes it extra frustrating.

floaton · June 2014

Dejaboo, thanks for posting about the lymph brushing - I started trying it after you mentioned it in another post and think it is helping me too, especially with my trunk and hand.

The pain of this (emotional and physical) is really awful. Since mine is mild in appearance and there isn't much to "see" my surgeon actually asked my pt if she thought my pain was even real. It's too much weight for me to pick up my toddler so she goes to other people when she's upset because she knows mommy won't pick her up. Not to mention the constant ache (on a good day). I guess what I'm trying to say is that I agree this forum is a great idea.

Anonymous · June 2014

Dejaboo, yes it is frustrating, and thanks for your suggestion but what is dry brushing? Im pretty keen on coconut oil and I "inherited" a huge jar of organic oil from a family member. I use it for my general moisturizer as there are so many chemicals these days in the stuff you buy which I try to avoid.

I often say to myself, There was BC........ then there was LE.

It sure throws us an extra backhander. Youre right, the pain "has a life of its own" and Im sure many of us, if we were to describe it, would find a lot of similarities. This might sound weird but when my aching is at its worst its quite localized/specific but not sharp. More heavy and if I could see it Id describe it as VERY "metallic". Yeah I know that sounds crazy ...but... oh and thats not counting the grazed and/or burning feeling on various areas, nor does it describe a certain tiredness when your arm tells you its had enough.

floaton, WOW, that's awful that you can't pick up your toddler. Hopefully the little one will come while youre sitting down or something? All these things add up don't they. Your surgeon has a clear case of foot and mouth disease. Better not say what Id like to do.

steelrose · June 2014

floaton, grrrrrrrr... to your surgeon. If only these people could spend a day in our bodies!

I've mastered sleeping propped up in bed on my back now. I find that if I lay as still as possible when an attack hits, as opposed to fighting it, the pain isn't quite as intense. I often clutch a pillow around my breasts and trunk. Vicious indeed! I ache constantly, but it's those attacks at night that really get me.

I'm having an ultrasound tomorrow, and my oncologist says it may be able to detect the lymphedema in the breast. I couldn't stand the pain of a mammo now.

Good luck to everyone fighting this nasty stuff!

Anonymous · June 2014

All the best for your US steelrose. Ive found a pillow very helpful but I must get it in the right place or it can make the aching worse.

Dejaboo · June 2014

I am a pillow hugger too.

I have slept with a Pillow tucked just right into my chest for so many years now...

Floaton, I am very glad the Dry brushing seems to be helping you too!

Musical I am going to start a thread with Dry Brushing for the subject & we can all discuss it there

aunt_paula · June 2014

Another pillow hugger here.

I don't know what to do lately; the swelling doesn't seem so bad, but the pain in my left arm and shoulder is relentless. I'm wrapping day and night, and doing my fist pumps and MLD. Would the heat cause it to dig in, or could there be something else I need to do/not do?

floaton · June 2014

Musical, sometimes she'll come over if I'm on the floor, but she's a very physical baby and throws herself around a lot and expects I can catch / protect her, which often ends badly for either me or her. We're a little too young for "gentle" just yet !

Steelrose, hope the u/s went ok! That's exactly what I said to my pt - that my surgeon and I can trade arms for the day and then we can discuss whether my pain is real.

Pillow hugging for me has to be done cautiously - too often and I can feel the front of my shoulder getting tight and more painful. But it does help the rest of my arm feel more comfy. It can be such a tricky balancing act .

Anonymous · June 2014

Well my arm has been behaving itself the last couple of days. Maybe it was because I did a little too much digging in the garden. Another thought came into mind, being in winter now, and we're having fires, I have to be SOOO careful that I kit up and dont get my arm hot when I put wood on the fire. I can physically feel the burning very quickly even if I've got plenty of layers on. Of course it would have to be my dominant arm...(grrr)

Likewise, I used to LOVE a hot tub on those mean winter days or when youre aching after hard work or something. Well that's out for me as well.

Most mornings my arm is down from bedtime. Having a pillow help raise it has been a big factor for me..

aunt Paula, so sorry you are having these difficulties with pain. Gentle hugs. Lets hope we can help each other out. Not sure what you mean by the "the heat digging in". Are you meaning the summer heat in general or getting hot in bed? I'm sure you'll know by now with wrapping, its very tricky to get it right consistently...(well at least for me) and maybe it may be a little too tight? If you are suffering from summer heat, what about a fan by the bed. I find that invaluable.

Theres a neuropathy thread in the CHemo forums, and for some of us this is a very real factor that adds to our pain.

floaton, not so nice that this has happened to you so early. Theres a lot of sacrifices we have to make, and not being allowed to forget is another one.

Dej, will go and have a look soon. Thanks.

steelrose · June 2014

Wow, lots of pillow huggers here! Well, the doctor who did my breast ultrasound didn't detect any lymphedema in the breasts. And she said because I'm not swollen anywhere, that it couldn't be lymphedema. I'm not so sure this is correct. There are ladies here who don't show signs of swelling. The MRI detected swelling under the breast, along my ribcage. I really don't know what to think now. For those who don't have visible swelling, how were you diagnosed?

Musical, I'm glad your arm is behaving. I popped a Naproxen last night when I couldn't stand it anymore, but it didn't do a thing. I'm giving up on the pain meds I think. I'll be clutching my pillow tonight!

Thanks for the well wishes...

Rose.

aunt_paula · June 2014

I have visible swelling in my neck and torso now, but didn't at first; I first noticed aching in my hand and arm, and my elbow felt weird. I am no expert by any means, but I think you're right that she isn't correct. I don't know if this is how it works, but I would think that as fluid fills in the spaces in whichever areas are affected, pain could be present before swelling appears (if it does). I hope you're able to get some relief!

Last night I just couldn't stand it, and though I'm not sure this is a good idea, I got my seven-year-old to walk on my back and shoulder. I had underestimated how much he's grown, so there was more pressure than I expected! I had been taking ibuprofen already, but iced my shoulder afterward (most of my pain is in my left shoulder and upper arm) and of course hugged my pillow, and it has been better today (still keeping the ibuprofen going, so it may have nothing to do with my back-walker ). I also bought a brush today and started dry-brushing when I got home, and it may be totally a psychological effect, but I have not had the kind of pain I normally do. I'm going to do it twice a day and see how it works. Anything at this point is an improvement!

Oh, by "heat digging in" I meant the summer heat in general. It is hot and humid here, and since this is my first summer to deal with LE I wasn't sure if it was the heat itself, or just the LE "blooming" in some way. The wrapping has definitely been a learning curve! It helps so much on the left side, and I don't lose my patience with it anymore there. The right side is another story! I am working on it, slowly--or at least it feels slow!

Hoping everyone is having a pain-free weekend.

Anonymous · June 2014

Steelrose, I agree with aunt paula, going from memory I had very little if any visible swelling but more aching and burning. Yes, I've also seen it discussed here that swelling doesn't have to be present for you to have LE. It seems to be that Doctors can be very ignorant of LE and its really great if they're open to a bit of info and I'm grateful mine is. I do think there is a very characteristic ache that is typical of LE. At the very least it is a strong indicator along with the associated burning from surgery and severed nerves.

Naproxen is available here on script, but whoa, some of the more common side FX are something I'd be better to pass on. Sure hope you get that pillow organized just right and get some relief.

Of course any heat issues have to be watched carefully as that could point to the dreaded cellulitis. The other night I got up in the wee small hours and looked in the mirror to check nothing was going on, such was the heat in my arm. Fortunately it was nothing. My LEist noticed on my last visit that my arm around the elbow area was quite hot so Im ever mindful of keeping a look out.

AuntPaula humidity is a killer. Hope you find some relief from that. Great that the brush is at least giving you some relief.

Hubby sometimes helps with MLD and sometimes his hands are a tad rough from the days activities and even that can make my arm feel very sensitive as if its been grazed.

LE Pain

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