don't know where to start

2timer · March 2014

I had a bmx in late August of last year. Afterwards, the right side of my left hand (where 6 nodes were removed) was 50% numb. I told the bs in September and he sent me to physical therapy. I had one appointment and was given a handout with some exercises that I should do. Other than the hand numbness, I had no problems with either arm so I figured it was due to nerve damage. I never really did the exercises.

Fast forward six months and about two week ago I noticed that my arm (left) felt funny so I started to take notice. My left arm is swelling along with my hand and is noticeably larger than the other arm. I also get pitting -- depressions from pressing my arm on objects that takes a long time to go away.

I think I might have lymphedema.

I'm shocked because I figured I wouldn't have to deal with this. I thought if I got it it would happen right away. I had no idea it could show up months later. I'm worried and don't know what to do. I'm trying to see the physical therapist again for more information. I do see my BS next Friday but all he'll do is tell me to see the PT like he did the last time. So what should I do now? I've started doing some of the exercises but those were recommended before I started having the swelling, I don't know anything about this disease except that it makes your arms swell.

any ideas?

NancyD · March 2014

You need to find a physical therapist specially trained for lymphadema massage, and you should get fitted for a compression sleeve, which will help move the lymph fluid along and perhaps contain some of the swelling.

The therapist should be able to relieve some of the annoying symptoms like aching and tingling, but the swelling is probably never going to go away completely, and you will always be at risk. A good massage therapist will also show you how to do manual self massage.

There is also a risk of cellulitis, an infection caused by bacteria in the lymph fluid. Protecting your hand and arm from small nicks, cuts, and burns is important.

Keep well hydrated.

These are all my basic rules that I follow. I'm sure there will be other helpful women who come along with some of theirs.

Binney4 · March 2014

2timer, I'm so sorry! Lymphedema is a nasty surprise, for sure. But you're right on top of it, and with the right kind of help you'll be able to get this under control and keep it that way. Hang in there!

For starters, you'll need to find a well-trained lymphedema therapist near you and get a referral from any doctor on your team (even your PCP). Not just every PT or OT has been trained in this very special treatment. Here's how to find one near you:

http://www.stepup-speakout.org/Finding_a_Qualified…

As for what you can do now, starting new exercises may not be the best help. You definitely don't want to get fitted for any compression garments until your arm has been treated (the standard treatment routine is called Complete Decongestive Therapy, and it involves a gentle massage, special therapeutic compression, and specific exercises.) Once the swelling is reduced you'll be fitting for a compression sleeve and glove or gauntlet to help you keep it that way! Until you can see a lymphedema therapist, try to keep your arm elevated whenever possible (on the back of the couch while you watch TV; on pillows at night). Stay REALLY WELL hydrated (helps dilute the lymph fluid and keep it moving). And stop every once in a while during the day to take some deep, abdominal breaths (stimulates the largest lymphatic vessel in your body). More ideas here:

http://www.stepup-speakout.org/How_You_Can_Cope_wi…

Emotional coping can be rough too, so here's an article that has helped some of us wade through the discouragement of this diagnosis:

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

And OF COURSE do come here and ask any questions that come up. Tell us how we can help, please!

Gentle hugs,
Binney

Anneb1149 · March 2014

I had biopsies done on my right breast and lymph nodes last Oct. I started chemo about 2 weeks later. At the oncologists office for the 3rd chemo, I noticed my right hand was slightly swollen. She didn't seem concerned. By the time I went for my 4th and final chemo, a month before my surgery, the swelling was obvious and extended up my arm. They did an ultrasound to make sure it wasn't a clot, then decided to leave it alone until after the surgery. They sent me to a physical therapist who massaged it, then wrapped me from my fingers to me shoulder in ace baNdages. That was not fun, mainly because I am right handed. After seeing the therapist about 3 times, I went to a boutique that fitted me for a compression sleeve, a gauntlet (a glove without fingertips) and a night sleeve. The sleeve and gauntlet are much more comfortable than the wraps were, and much more easy to manuever. The night sleeve is big and bulky- I go to sleep with it on, but usually end up pulling it off sometime during the night. They say my lymphodema started with the biopsy of the lymph nodes, and once they have messed with the lymph nodes, the lymphodema can start anytime after that, maybe even years later. Hope that helps some

vlnrph · March 2014

Sounds like Anne got pretty standard therapy except I hope she actually rec'd short stretch (not Ace type) bandages! We don't want someone reading this to go out and get the wrong product in an effort to self treat. Good thing they checked for a possible blood clot.

I can relate to giving up on the big bulky sleeve during the night, especially during warm weather. Also agree that it is no fun when you're right handed and that's the side that is affected.

Indeed, LE can show up after months or even years after treatment. That's why it's called a "late" effect.

I didn't swell until chemo was over and my energy began coming back. Started doing things like garden work and orchestra rehearsals and there it was. 2timer might remember a similar trigger if she thinks about it but sometimes there's no correlation to events/injuries.

Kicks · March 2014

Be sure you see a CERTIFIED LymphEdema Therapist - not just some PT or OT that says "I know all about LE!".

Anonymous · March 2014

2timer sorry for your nasty surprise. Theres great info here and the ladies here know heaps. These posts above are great advice and Id just reiterate, we do have to be aware of that dreaded cellulitis. None of this is fun. It takes time to get our heads around this darned LE and eventually we do. We have to because theres no other choice.

Anneb and vlnrph ... I so agree....when your dominant side is effected most it puts a whole different spin on LE. Example: My mitt gets 10 times dirtier than it would if it was my non dominant side. I cant tell you how annoying it is to suffer the added insult of a perpetually filthy hard to clean glove!

hugz4u · March 2014

Stick with us and we will guide you, we probably know more than your doc.

I have become more dominant on my non LE side... But my dominant glove side still gets filthy. I have come to find popping on a medical glove during bathroom time easier than taking it off. I wash Hands with medical glove on to get my other hand clean then throw it away. Most times I don't have a medical glove and that is the pits cause then the LE glove has to come off.

bhd1 · March 2014

hugs is right . The ladies on this board are very knowledgeable and caring. I hope you can find a good le therepist close by. ASAP. Is your hand still numb?

2timer · March 2014

My hand has been partially numb for months. I still feel that this is nerve damage (but I might be wrong). The swelling has been noticeable for a couple of weeks. I was able to get into to the lymphedema clinic today so hopefully I can find out what's going on and what I should do going forward. I do intend to read the posts here and get as much information from you guys as I can. There seems to be a lot of experience and knowledge on these boards.

don't know where to start

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