VISIBLE SIGNS OF LYMPHEDEMA - A PICTORIAL

lago

pagowens I can only speak for myself but when I first noticed problems (before the swelling) my arm definitely felt heavy not numb. Usually when I exercised. When I woke up in the morning, even when I did have visible lymphedema my arm actually looked and felt better.

At the very least I would watch this. 

pagowens

Thank you all so much.  I've been researching the carpal tunnel syndrome and those symptoms jive with what I am feeling.  I am on Femara, since last September.  I'll be recalling my Oncologist, going to the therapist as well and may even go to my primary doc who does accupuncture.

I appreciate your advice and help. 

Pat

Margaret55

Thank you so much for posting these Lindalou.  I had injections for carpal tunnel in February this year (2011) and a few months later I was diagnosed with  lymphoedema, I think myself personally that the injections have triggered this.  I had a lumpectomy 3 years ago on the left breast and also had lymph nodes removed.  Can you or anyone else tell me what you think of this.

Thanks

Margaret

kira66715

Margaret, the injections could have triggered lymphedema--some women have no problems, but for other women it's enough to push them over the edge into swelling.

Are you getting treatment for the lymphedema?

Once you have breast surgery and lymph nodes removed, you are always at risk for lymphedema.

So sorry it showed up--hopefully it settles down quickly.

Kira 

bestock

All went well while flying from NV to NC and back .

I just wore the compression sleeve and drank a lot of fluid. I also just did some little movements with my legs,

as my nurse said people with LE do tend to get more blood clots  in legs??? (I am sure my fellow travellers next to me wondered what I was doing)I had NO Problem. Thankfully

duckyb1

Just got the ok to go to a Board Certified LE specialist............They have approved 8 visits, and said if I need more they will comply.......I am thrilled..........I was told make sure your LE person is Board Certified since just anyone can do more harm if they don't know what their doing.....I was told just a Physical or Occupational therapist isn't always qualified to do LE treatments.

First appt. will be June 2nd.,

lago

There is no such thing as a board certified LE specialist. You should check these links out:

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm  

Find a LANA certified therapist: http://www.clt-lana.org/therapists/default.asp

sacphotomom

I have a question?  Did any one here have their reconstruction after diagnosed with LE and how that would effect recon?  little back history .. had Bi lat Mas in 3-10 did not do immediate TC's  because was told that I wouldn't be needing radiation.  (Didn't like any of the PS I talked to and decided to wait til had more time to look)..  ..after surgery found out lymph nodes were 20 out of 28 removed! So radiation was a must.  still haven't had any recon done .  now I'm thinking it could be crazy painful with Le..My arm swells up after I wear my Prosthesis for a day..even my new lighter weight ones seem to aggravate the LE!  so cant imagine wearing heavy TC's.. Anybody?

lago

sarphotomom I asked my PS about that since I have exchange surgery coming up. He doesn't seem to think it will be much of a problem… we'll see. But I will admit my PS was the one who sent me to the LE MD when I told him I had LE… and he sent me to one of the top guys. I have to give my PS credit for that.

I'm just not sure if I will be able to get my sleeve on after surgery. I'll need help

LadyinBama

I've just found this thread. Thanks to LindaLou for posting these pictures. These are very similar to what my LE looks like. It was so subtle at first, I didn't recognize it coming on, and thankfully, it has not gotten too bad. I had my first consultation and treatments with an LE therapist last Dec. Did fine for a while, then had another flair up that she thinks could have been brought on by 3 surgeries in a row in February and the re-start of chemo. So I'm back to a weekly schedule of visits and massage and wearing my compression sleeve and glove daily. I'm not responding to therapy as quickly this time, but it's not getting worse either. So I guess it's just wait and see. Anyway, good luck to all who are dealing with this little extra gift of BC!

sacphotomom

Thanks for responding so fast Lago,  .. I am worried about it since my LE has flared again my arm is 1" bigger then the last time I had my therapy..  I am wondering if it has something to do with the fact that I have broken out with Shingles.. I was supposed to go have my arms wrapped this week only to be in too much pain to go and there are some blisters on the top part of my arm so cant be wrapped just yet. and I cant get my compression sleeve on just yet either.  .. My clothes are fitting very weird in the sleeves kinda snug.. I will be wrapped in 2 weeks now .. I cant touch my skin around the blisters/ skin  it hurts too much..so not doing the sweeping that I should be doing.  

I am going to be fitted for a new compression sleeve as soon as we can get my arm swelling down..

Every one have a Great Day!

 

lago

sacphotomom your PS won't go near you anyway till the shingles have healed and the pain is gone. I got "the shingles" 4.5 weeks ago. My exchange surgery was supposed to be this Friday but we pushed it up to June 24th to be sure I'm all healed. I'm sure not wearing your sleeve and the fact that you have shingles on your arm could be causing this. I had shingles on my lower torso.

I'm so sorry you have shingles. They suck! Just to warn you. Once the blister's start to dry up then the pain does get worse… and I mean have pain killers, narcotics handy. I never took any narcotics or even a tylenol after my BMX. During chemo I only took Aleve for 2 days each cycle for nuelasta pain. Shingles I was on ibuprofen constantly but one day I actually took 1/2 a norco twice. I would have continued but it made me nauseous, spacey and very constipated. Wasn't worth risking hemorrhoids IMO.

BTW I'm doing much much better with my shingles this week. I had a pretty big break out. Still a bit itchy at night but I'm function again.

sacphotomom

Lago Thanks for the heads up on the pain   I have been on the pain meds and yes the chemo pellet poops are back.. I had been nauseous, spacey,  too.  Then I switched drugs with a zofran before, so  much better... Today I am on ibuprofen only .. So much better with the attitude too, I was in the ugly pain mood before, being so drugged up!.. And the feeling of having an overly tight bra on came back too.. that pain, I thought was long gone!  So are you still in pain, after 4.5 weeks?

lago

5 weeks pain is 99% gone. I feel like me again. Yay! thanks for asking. Hope you don't have it as long as I did.

Janeybw

I have only just joined having had my surgery (bmx with te) a week ago today and your pictures were just what I needed to see.  THANK YOU Lindalou--you are an amazing woman!  I have yet to read through everything, but I will be doing that.  I had only 2 nodes removed on each side and don't know yet their status.  I am assuming negative since not more were taken.  My surgeon does beautiful work but is a man of few words!  He will say more when he calls with the patho report this week.  What a blessing this site and members like Lindalou are!

GramE

This is not meant to be an advertisement - check out GSleeve website for a very affordable sleeve to alert medical persons to the risk for lymphedema.    I have contacted them and they are sending me brochures to share with patients and medical persons.   Phone:   1-866-9 SLEEVE.

Nancy 

GramE

bump 

sacphotomom

Shingles are gone but the pain in one place is still there .. the last couple of days I didn't take anything to see if it is real bad .. just the one in the back where the biggest blister was.  so still on Advil for that but other wise I'm good.. 

YEA!  this past week I have been very bad, in a good way.. I did so much yard work My arm swelled up.. ( my thoughts were damn this BC/ Lymphedema, I'm going to do what I want! ) It has gone back down, but still swollen at the very top where it has been for a while now.  I had to change my wrapping til next week because of the shingles on my arm but now they are gone and I will be wrapped up next week.. Even though I am very sore (muscle wise)I haven't felt this good, Mentally in a very long time... I forgot how good it feels to garden and get all sweaty,dirty and then take that long shower and sleep like a baby..without any help from drugs!

lago

sacphotomom So glad to hear you are in a better place both physically an mentally.

My LE flared up a little this past weekend thanks to the AC being out all last week. It came back on Wednesday so it's getting better. Not too much swelling but some numbness and denseness in lower arm. I do have some heaviness in the other arm ( not diagnosed with LE but I'm pretty sure I'm a stage 0 in that arm). I don't notice any denseness or weakness though. Started lymph massaging again… not that I ever felt it did any good but it can't hurt. I'm also weening off my diuretic so that isn't helping either. I'm giving that a week and if I start putting on the bloat I'll be contacting my NP again to see what they want to do. I still think my fluid retention is Herceptin related at this point not left over from chemo. Hope I'm wrong.

sacphotomom

Lago .. What are you taking as far as a diuretic and does it really help .. no one has even mentioned a diuretic.. but then again with the pain meds I have been on... ooh the constipation it would cause..lol

The weather, here in Sacramento, has been so cool,  winter like, I have been loving it!  I am not looking forward to it getting into the 100's like it will probably do after a few weeks of 60's  ....Wondering how much I will swell up.. anyway ..

Everyone have a Great week! 

  

LadyinBama

Sacphotomom: I hadn't thought of the heat as a contributor. I've had an LE flare up and it's not responding to compression or massage like last time. It's been in the high 90s, both temp and humidity wise, here for two weeks. That might be part of the problem. I go to my PT tomorrow. I'll ask her.

lago

sacphotomom I am taking a very low dose diuretic. I started with a 1/2 of Triamteren 37.5 mg/hctz 25mgs. Yes I actually spliced that little pill in half. Just started last week taking 1/2 pill every other day. I'm weaning off it  now. It really did help. I was about 5-6 pounds of fluid heavier with out it. My legs were super shiny and my belly was so bloated. So far I seem to be doing OK weaning off. It appears the bloat was left over from chemo. I had at least 8lbs of fluid from chemo.

I had a really bad case of the shingles not too long ago. I did take 1/2 a Norco twice one day pain was so bad. This was the first time in my life I ever took a narcotic. (Didn't need any during chemo or after my BMX). I became constipated as well as nauseous and spacey. IMO the pain meds wheren't worth the SE. I wen't back to taking ibuprofen. At least it took the edge off the pain.

LadyinBama several of the women on the Illinios thread (including me) are having flare ups that doen't seem to be resolving. I think mine is a litte better but we are having even more humid, hot & rainy weather this week.

GramE

I do not have lymphedema, but am at risk for it.   One thing I notice about other aches and pains is when the barometer is high,  over 30, meds are needed to be comfortable.    

sacphotomom

Hey yesterday I noticed that my swelling went down...whoop whoop.. ,my arm looks normal...unfortunately now my arm is jiggly...lol  it must have been bigger because of the  shingles...  l'Il find out next week how much it has gone down, since I am to be wrapped up may be it won't be as long now..

sacphotomom

ok so my arm looking smaller was all in my head .. wishfull thinking. I guess. but the bandages are on and its going down little by little.. time time time guess its just going to take time!

Just_V

Hi all - I have a question - I had a UMX on 6/8/11 - my arm pit and the underside of my upper arm are achey - like if you were to pinch the loose skin without any muscle - that is where the ache is -- but no swelling (I actually measured) and none of the other visible signs... should I worry? If I need to have it checked out, which doctor do I ask (I truly had no idea of the huge number of different kinds of doctors involved with BC - they need a class just to understand them all)!

Just_V

lago - I get that same nausated feeling with morphine based drugs, but do fine on vicodine drugs - might ask to have something else prescribed?

lago

vhshea I have vicodine too from my BMX that I never used. Actually have another prescription for more since I have my exchange surgery this Friday. Didn't fill it since I still have the other stuff. Hopefully I won't need it.

Still have thickness and very slight swelling in upper part of the lower left arm but not as numb. I think it's just going to take time. Upper right (undiagnosed) arm still a bit sore but no swelling or thickness that I can see. Next week the humidity is going to go down but I won't be able to exercise for a bit after surgery. Exercise does help me especially walking.

sacphotomom

Lago Lots of good vibes being sent your way for your exchange surgery on Friday.. walking is the way I keep sane!  

Its 100 degrees out today ... YUK!  just too dang hot... I would bet that all you in the humid areas, having flare ups, are due to the heat!  

OK stay cool ladies!

LadyinBama

Iago: Good luck tomorrow. I didn't have pain with my exchange. Hope yours goes smoothly!