swollen hand- help!

Lightandwind: sometimes it just all adds up and tips the balance into lymphadema--the ability of the lymphatic system to transport lymph fluid out is compromised by surgery/rads/infection/inflammation and when it gets overloaded, we swell.

I had sudden onset of swelling after bug bites, and unfortunately, it's never gone away.

Whenever you have nodes removed the entire quadrant is compromised: it's the arm/breast/trunk/back and anything that gets inflammed in that quadrant can bring on swelling.

I agree that the doctor should make sure there's no blood clot, but then they need to send you to a lymphedema therapist.

And yes, pain is part of lymphedema-when my hand swelled, it hurt to make a fist. Now, if I'm acting up, there will be an ache in the area.

We have a section on stepup-speakout about what to do while waiting for a lymphadema therapy appointment:

http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#while%20waiting

What to do While Waiting for Your First Appointment with a Qualified Lymphedema Therapist

DO NOT try and treat this yourself!!! Proper professional treatment is essential to getting control of lymphedema and preventing its progression. Treatment can be expensive and inconvenient, but this condition is life long, potentially disfiguring, disabling and possibly life-threatening (if you get an infection known as cellulitis) so professional evaluation and treatment as soon as possible is essential.

1) Get evaluated promptly by your doctor to rule out other causes for the swelling in your hand/arm, and get a referral to see a well-trained lymphedema therapist;

2) Drink plenty of fluids -- staying well hydrated helps dilute lymph fluid and keep it moving freely;

3) Elevate the swollen arm or hand as much as possible during the day and on pillows at night; support the arm well so that it doesn't tire;

4) Several times a day pause and do some deep breathing -- this helps stimulate the largest lymph vessels in your body;

5) Raise hands over head as high as is comfortable for you, three times a day, and pump fists 20 times;

6) Call for medical help immediately if you have severe pain, redness, fever or feel ill;7) You can try mild compression gloves by either Sammons Preston or Isotoner® Fingerless Therapeutic Gloves if your hands and/or fingers are swollen until your appointment with your lymphedema therapist. Be sure to bring them along to your appointment;

8) Do NOT use ACE wraps or any other wraps without the advice of your lymphedema therapist after your evaluation and your treatment plan is scheduled.

Let us know how you make out.

Kira

Lightandwind, it is essential that you see a qualified lymphedema therapist, and many PT's take weekend courses, and the quality varies.

A qualified therapist has taken a 135 hour course and ideally has supervised experience.

Also, just because someone is trained, is no guarantee.

I'd suggest you check out the stepupspeakout info on therapists and treatment:

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

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

It's not uncommon for the arm to feel achey. Please let us know how you're doing.

Kira

Lightandwind, many women hold fluid in their arm pit, as the whole "quadrant" is impacted--chest/back/arm--sounds like treatment will give you a lot of relief.

Lightandwind: you need to be vigilant, and with lymphedema, cellulitis can start fast and spread fast. Any redness, warmth, pain, increased swelling, fever, fluish symptoms--please get an urgent medical exam.

Here's a link on stepup-speakout on cellulitis:

http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm#CELLULITIS_%28INFECTION%29

Lightandwind: if your hand swelled in the isotoner glove, it was somehow trapping fluid, so don't use it. LE treatment is a combination of standard care and trial and error. And we're always in flux--my therapist calls it "whack a mole". Some people get progression no matter what they do, but the vast majority flare early and then, with treatment, settle down. Of course there are flares. The unpredictable nature of the course and the disease are another frustration, along with the widespread ignorance of it, and difficulty accessing good care.

Totally agree with Kareenie: gap exception--they have to provide the care, and it's their fault that care isn't readily available.

As far as damaging your lymphatics: cellulitis can damage the lymphatics, so that's another reason we want to avoid it, but no one has a clue the extent of that damage, and if it can be avoided when you catch it early.

Since lymphatic fluid stagnates in lymphedema, sometimes protracted courses of antibiotics are needed--kind of like treating an abscess, where the antibiotic can't get to the infection. We've seen women here get a course of IV followed by several weeks/months of oral antibiotics.

The good news is that your swelling went down on its own. Now you just need to get a LE therapist, and your onc sounds like a solid resource, and maybe go on an additional course of antibiotics.

There is an image in NEJM, and I can't get photobucket to work with this program, but it shows a good image of cellulitis, although the text says she "didn't have palpable lymphedema", yeah.

http://www.nejm.org/search?q=breast+cellulitis

At the beginning of getting LE, we are all on a steep learning curve, so ask any question that comes to mind.

Kira

Hi all.

My Dad had a lesion under his arm years ago.  His lymphedema was intense.  His arm was probably 12-14 inches in diameter.  He could not wear a shirt with sleeves.  I thought his skin would split.  It was incredibly painful.  He could not use his hand or arm.  Could not tolerate a sling, so he carried his arm around on a large pillow.  It was bad enough that amputation was an option, but he would not accept that it couldn't get better.  He just didn't get treatment for that anywhere near in time.

When I had lymph nodes removed myself years later, I asked about that.  I got a referral when I noticed swelling.  Caught it not quite fast enough but faster than most.  Two and a half years later, I have worn my sleeve daily and my arm is almost entirely normal in size.  The reduction is clear on my chart.  I do the exercises and massage when my arm feels full, but most of the time that is not necessary if I wear the sleeve.  And it takes a certified lymphedema therapist to prescribe the sleeve, so get to one asap if you have swelling in the affected arm.  Better yet, get a referral for a baseline before you have any problem.  Some hospitals are providing that free now as part of the preop before surgery.  I like that.  They will also tell you how to protect that arm from trauma that can cause lymphedema, and who to call if it happens.