Primary Lymphedema stage 1

Soph8920

Hi there ,
I have been diagnosed with Primary Lymphedema stage 1 a few days ago. I am still wrapping my head around the idea of having a life long illness.
I would like to know if there were any diet and exercise from my fitness pal that would be suitable for my condition.

AnnPT77

Hello, and welcome!

Have you talked with your medical team about getting a referral to a registered dietitian (RD) for advice on eating strategies for best management of your lymphedema, and/or a referral to physical therapy for guidance on suitable activity/exercise? Those kinds of professionals really have the specialized expertise that would be ideal.

I think none of us - or very few anyway - are medical professionals, so I (and maybe others) would hesitate to give you advice related to a medical condition, despite being willing and even eager to help if I could. Those few medical professionals who are here, I believe are generally bound by professional codes of conduct not to "treat" people for who they don't have full medical history, among other factors.

I hope someone(s) with a similar health condition may come along and be able to speak from personal experience.

There do seem to be some mainstream organizations that offer education and support, such as the Lymphoedema Support Network in the UK:

https://www.lymphoedema.org/

That's a membership organization, but they do have some free information that includes some of what you're asking about:

https://www.lymphoedema.org/information/just-diagnosed/

There's a list of resource organizations for lymphedema and lymphatic disease here, some of which are peer support or provide patient education information:

https://lymphaticnetwork.org/living-with-lymphedema/related-organizations

Once you have an idea of what diet and exercise strategies are good for you in your circumstances, MFP can 100% be helpful.

In general, with any medical condition, reaching a healthy body weight (if not there already) and getting overall good nutrition are useful things (though there may be special provisions you need to follow because of the medical condition, as you've obviously realized). Once you have some personal eating goals, logging your food on MFP can help you learn what foods and eating routine help you hit those targets.

On the exercise front, once you know what general guidance is suitable for your situation, there are lots of resources to learn about exercise, and groups/threads to help one make exercise a consistent habit. (I use MFP in this way myself, posting on a workout thread as part of my accountability plan. There are also challenges, and that sort of thing).

I understand how scary it can be to get a new medical diagnosis. (I've had some experience like that in my life, as someone who's a cancer survivor, has been diagnosed with early-stage COPD, etc.) For me, the more I learn, the more I can take that learning one day at a time and be proactive, the more empowered I feel and the better things go, generally.

I wish I could be more helpful, sincerely, but please know that I'm out here cheering for you to find a happy path that will keep you in best possible health long term. I hope we'll keep seeing you around MFP!

Best wishes.

ythannah

I was diagnosed with primary lower-limb lymphedema in my early 20s. I have never been overweight. At the time, the only management strategy offered to me was compression stockings, and that remains the case today at age 58. I've seen Vodder lymph drainage massage recommended but unfortunately we don't have any Vodder practitioners locally.

As far as diet, I am on restricted sodium anyway due to hypertension. That may help. One of the medications I take to control the hypertension is hydrochlorothiazide, a diuretic. That may also have helped. Probably the worst things for my condition are heat and humidity which are kind of unavoidable in summer.

Any exercise involving the leg muscles can be useful as the muscle action helps to move fluid. But in all honesty the only thing that really makes any appreciable difference for me is compression stockings.