Recent Lymphedema Diagnosis

Danielle, lymphedema is a steep learning curve

The first thing is to read the National Lymphedema Network position papers--especially the one on treatment:

http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm

Also, the stepupspeakout page on treatment:

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

I assume you have a qualified lymphedema therapist:

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

Although many of the women on these boards use pumps, the standard treatment is CDT: manual lymphatic drainage, bandaging, compression garments, exercise.

Pumps are used if that is not enough or there are other reasons to go to a pump. If medically necessary, insurance will cover most of the cost of a pump.

Kira

Danielle,

If you haven't already, get a referral to a certified physical therapist like Kira suggests.  He can evaluate your situation and figure out the best course of action.

You don't want to just get equipment yourself, because getting the wrong thing could make it worse.

I don't know where you are at in your treatment?  My lymphedema started at the end of chemo, and bothered me a lot through radiation, but now (2-3 months from radiation) I am doing better and better with it.  I wore my compression garment (a sleeve) basically all the time through the end of active treatment and I think it really helped keep it under control.  My PT helped evaluate me and choose the right garment.

I also did weekly manual lymphatic drainage with the PT until the end of radiation.  It felt fantastic.  She also taught me things to do at home.

Good luck! 

I would definately agree with seeing a specialist.  My lymphodema specialist is a physical therapist who is LANA, so my insurance pays for the "physical therapy" with no problems.  They fitted me with a Medi (non-custom) compression sleeve since my swelling isn't still stage 1.  I because of that I can order the same glove/sleeve since I know my size.  She was also able to tell my the size I would need if I wanted a diva glove, even though they don't supply those.  Your therapist should definately be able to help you pick stuff out, even if its not stuff they carry like the pretty diva gloves   Good luck and yay for trying to get it under control

The hardest part was figuring out when I needed to use the sleeves vs the wrapping (which I am still learning to do) so make sure to ask under what circumstances your PT recommends what methods for controlling/reducing your LE. 

Informated, welcome!

I'm sorry you're dealing with both arm and truncal lymphedema. I am too, and it takes a lot of managing!

The chronic infections are really worrisome. Have you seen an Infectious Disease doctor who's familiar with lymphedema? Are you on long-term low-dose antibiotics?

You don't mention wrapping for your arm, so I wondered if you've learned to do that. It's such a great tool for self-management and keeping ourselves out of trouble! 

Glad you found us, and hope you find the same support and encouragement here that I've found. Lots of great ladies here!

Gentle hugs,
Binney

Momine, do NOT wear the sleeve at night. Sleeping in a sleeve like that can actually constrict lymph flow in one area if it becomes twisted and you  aren't awake to notice.

In fact, you don't mention a that you're wearing a glove with the sleeve, so if you have swelling in your fingers and no glove, you should also NOT be wearing the sleeve during the day at all. The reason is, with the sleeve on and no hand compression, lymph fluid will be forced into your hand and make it worse. Here's a brief article explaining why hand protection is necessary when wearing a sleeve:
http://lymphedivas.com/lymphedema/gauntletandsleeve/

Not every PT has the specialized training needed to deal with lymphedema, so you might want to check out the training credentials that are needed. Information about that here:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Besides elevating your arm, be sure to drink plenty of water (helps dilute the lymph fluid) and stop at intervals and take several deep abdominal breaths (stimulates the largest lymph vessel in your body). With your arm elevated, slowly open and close your fist to help "pump" the fluid from your hand. Keep your arm elevated in bed tonight on pillows.

Hoping you get good help with this soon! Gentle hugs,
Binney

Momine, yes, the chemo drugs do contribute to lymphedema flares and swelling. If you've learned some self-Manual Lymph Drainage massage you might want to do some extra node-clearing and massage daily until you're done with treatment. (Looking forward with you to that day -- hope it's soon!) If you haven't learned it, now's a good time. It's a great "tool" to have going forward.

Be well!
Binney

Hi All,

Just got home with a "mild" diagnosis. Shocked as all get out because only had one lymph node taken. I have a sleeve because flying to Maui on Sunday. I appreciate the links posted earlier and will go download them now.

Thanks,

Susan