New lymphedema pain

cinchgirl

Hello all,

I have been dealing with truncal lymphedema for about a year now and recently finished another 3 months of therapy (end of August). All went well and much progress was made with the MLD and compression night garments thanks to an awesome therapist.  However, in the past couple of weeks I have noticed a "new' sort of pain running from my armpit area down to my elbow. It is slightly reddish in color and somewhat swollen and warm, no streaks.  The worst part is it is very tender to the touch and hurts much more than before, UGH. Could this be cellulitis without the rash?  Or could it be that the sleeves are keeping the fluid from building up in my arm and is starting to accumulate it that area instead? I Have an appointment with my therapist this afternoon to get her opinion.  Any advice or similar experiences would be very much appreciated!

carol57

Cinchgirl, I'm glad you're seeing your therapist, because I hope she will have you evaluated for cellulitis immediately. The reddish-and-warm part of that story makes me very suspicious, although normally I believe cellulitis tends to progress rapidly, so 'a couple of weeks' would seem unusual if it is an infection. Best to rule that out in any case.

Kira's therapist has described LE treatment as 'whack a mole' -- You knock your LE down in one spot, and it pops up in another location without warning.  I am praying that your therapist has some good ideas for whacking the mole today.  Let us know what you learn from her.

Carol

cinchgirl

Thanks Carol for the reply.........I went to my therapy session yesterday afternoon.  Jo (therapist) did all the measurements and decided that I have pulled or strained a muscle underneath my arm/armpit area.  The pulled muscle and me limiting its use has re-inflamed the lymphedema and so here we go again.  I'm scheduled to see her 2 times  weekly for 4 weeks starting out.  Then go from there.

Hopefully Jo can work her magic and get me up and going again...........

carol57

Cinchgirl, How lucky you are to have a good therapist! Good luck with the therapy program, and I hope you're back to 'normal' (hard to say what that is with LE!) soon!

cinchgirl

Yes, very fortunate to have such a great therapist.........however, since my visit to her last week something else has come up.  I noticed on Friday that there is a very "distinct' cord under my arm now.  I looked it up and from all indications it seems to be "axillary web syndrome" or "cording".  It has all the features from what I can see and the intense pain. Ugh!  I go back to therapy here in about 2 hours and will let my therapist check it out and see if she thinks the same.  I know that I am in good hands with her.

Will update after my therapy this afternoon..........thanks all.

akmom

Any news, cinchgirl? What did the therapist say about cording?

cinchgirl

Yes, it is most defenitely axillary web syndrome. The cord is very distinct and runs down to my elbow (that is the part you can see).  However, the pain can be felt down to my hand.  My therapist thinks that the cord runs the lenght of my arm but is just not visible the entire way down. The therapy is helping tremendously with the pain and I am scheduled for 2 times a week.  However, there are some days that are worst than others depending on what I am doing.  It seems as though right now the computer work and things I do with my hands make it more painful. 

I have gone online and read tons of information about cording and from what I have read I should not be one to get it.  I had "0" lymph nodes removed and this is what the experts say causes cording. But, on the other hand I did recieve more axilla radiation than I probably should have (thats another story). ugh!So, my thinking is that the lymphedema, which came first was caused by the extreme radiation that I recieved to that area and then the cording came next.  Like my therapist says, I'm just an "over-achiever" !

  I would really be interested to know if there were any ladies out there besides me who have been diagnosed with AWS and NOT had lymph nodes removed? And I thank everyone here for all the support and information that they have shared with me and others.  It helps to know that you are not alone.  Now, I await my 6 month mammo followup coming tomorrow.  I'm sure this cording thing is not going to make that any more fun than it usually is.........lol.  I will check back following my mammo tomorrow.

jules aka cinchgirl