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Debbie L. · 05-04-2012, 07:53 AM

Dear KS. Dangit, that wasn't a nice morning surprise for you (although the carrot comment made me laugh). I feared lymphedema almost more than cancer, in the early days. I did end up with a mild case that has been easily controlled these 11 years, although as Snolan said, it hasn't disappeared altogether.

I hope yours will be easily manageable also. I hope that appointment with the therapist is soon. If it's not, and you feel the swelling is getting worse, call and get them to bump up your appointment, because the sooner you get on it, the easier it will be to get a good response and keep it under control.

I wouldn't think you'd have to quit your job. What kind of arm/hand movements are involved? I learned quickly what kinds of things aggravated my arm, but instead of having to quit doing those things, I still do them but always with close attention to the exercises and manual lymph drainage (your therapist will teach you about that) that works best for me and my arm.

I do think that each case of lymphedema is different -- different triggers, different things that help the most. And so it will take awhile for you to learn what works, and what doesn't, as you manage your lymphedema. Some people get it only in their hand, others will have giant upper arms with the hand unaffected, still others it's in the chest or breast. Or all of those places.

If your lymphedema therapist seems too autocratic, with lots of mandates as to what you MUST do or not do -- I'd suggest that you get a second opinion. Lymphedema research is a work in progress. There are a lot of leftover mandates from the days before we had ANY research. The mandates were formulated by people with the best of intentions but some of them, upon closer investigation, just do not seem to be true.

Sorry to run on. Lymphedema is a favorite topic of mine. I even took the class to be a therapist, before discovering that while RNs can be certified as therapists, they cannot be reimbursed for their work (sheesh). But that was 10 years ago and there have been lots of advances in our knowledge since then.

Good luck and keep us posted.

Debbie Laxague

05-04-2012, 07:53 AM	#3
Debbie L. Senior Member Join Date: Jul 2006 Posts: 463	Re: and then came...lymphedema. Dear KS. Dangit, that wasn't a nice morning surprise for you (although the carrot comment made me laugh). I feared lymphedema almost more than cancer, in the early days. I did end up with a mild case that has been easily controlled these 11 years, although as Snolan said, it hasn't disappeared altogether. I hope yours will be easily manageable also. I hope that appointment with the therapist is soon. If it's not, and you feel the swelling is getting worse, call and get them to bump up your appointment, because the sooner you get on it, the easier it will be to get a good response and keep it under control. I wouldn't think you'd have to quit your job. What kind of arm/hand movements are involved? I learned quickly what kinds of things aggravated my arm, but instead of having to quit doing those things, I still do them but always with close attention to the exercises and manual lymph drainage (your therapist will teach you about that) that works best for me and my arm. I do think that each case of lymphedema is different -- different triggers, different things that help the most. And so it will take awhile for you to learn what works, and what doesn't, as you manage your lymphedema. Some people get it only in their hand, others will have giant upper arms with the hand unaffected, still others it's in the chest or breast. Or all of those places. If your lymphedema therapist seems too autocratic, with lots of mandates as to what you MUST do or not do -- I'd suggest that you get a second opinion. Lymphedema research is a work in progress. There are a lot of leftover mandates from the days before we had ANY research. The mandates were formulated by people with the best of intentions but some of them, upon closer investigation, just do not seem to be true. Sorry to run on. Lymphedema is a favorite topic of mine. I even took the class to be a therapist, before discovering that while RNs can be certified as therapists, they cannot be reimbursed for their work (sheesh). But that was 10 years ago and there have been lots of advances in our knowledge since then. Good luck and keep us posted. Debbie Laxague