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You have a lipoedema diagnosis … what now?

I ran a live chat titled “You’ve got a lipoedema diagnosis … what now?” as part of Lipoedema Awareness Month 2023.

There are often posts in lipoedema support groups saying that someone has just got diagnosed and they have no idea where to start making changes. Or they are 100% sure they have it and don’t know what to do first.

Firstly, you don’t need an official diagnosis to start making change. And here in Australia, there is no actual benefit to getting a diagnosis … yet. Our Medicare system doesn’t recognise lipoedema, so there is no financial benefit to having a diagnosis, nor is it highly recognised by the medical fraternity.

But the emotional benefits are huge. Validation that you are not imagining your body changing and not responding to dietary or exercise changes; that you have not caused it by doing something wrong.

It’s all well and good getting the diagnosis, but often that’s all you get. There may be no support or information around what you can do to support yourself to be the healthiest version you can be once you have a lipoedema diagnosis.

Here’s a link to an earlier blog I wrote on How to live well with lipoedema, which was published in the ATMS journal last year.

Here’s the recording of the chat …

It may seem pointless making change as lipoedema doesn’t respond to dietary or exercise stimulus but it is incredibly important to get as healthy as possible to slow the progression of this chronic disease. While eating well and getting fit does not reverse the symptoms, your entire body benefits from these changes.

Therapist

I recommend finding a good therapist to support you, whether that’s a massage therapist trained in manual lymphatic drainage like myself, a physiotherapist or occupational therapist, a nutritionist or a psychologist. Find your support person, or support team.

Compression

Compression is vital and this is quite often the one bit of information you are given on diagnosis. Specialists often say they would like you wearing Class 2, custom-made, flat knit pantyhose … ASAP.

I’d like to offer a word of caution here. Going from no compression to custom-made, flat knits is quite a stretch – no pun intended, because these garments don’t have a lot of stretch! They are a hefty financial investment and can be difficult to get on and off.

I suggest starting with something more gentle and less expensive, to ease your way into wearing compression. You can start with lymph stimulating compression like the Bioflect Pro stockings or the Solidea range of lipoedema garments which are lymph stimulating and medically graded. You could also try CZsalus.

You could even start with some sports compression from Aldi, Big W or Kmart or any of the sports store (eg Skins).

Class 2 round knit compression may be all your need if your limbs are normally-shaped.

If you are more advanced and have lobules of fat, or fat pads at your knees, then custom-made compression is definitely required.

Nutrition

This is a hot topic and not one I’m going to go into in any detail because I believe the way of eating you choose needs to be individual to you. Look into anti-inflammatory ways of eating. Basically, avoid processed foods, eat the rainbow and as close to nature as you can. That sounds very simplistic, and it is, but this isn’t the place for specific recommendations. Talking with a nutritionist who is familiar with lipoedema will be beneficial.

Exercise

Find what works for you. Walking in the water is my top choice as it’s gentle on the joints and a good workout. Walking in general is great. Aqua aerobics, rebounding, vibration plates, tai chi, yoga, pilates. If there is an exercise you enjoy, which doesn’t cause you pain, do that.

Dry brushing

Here’s a link to my video explaining how to open your lymph nodes and then dry brushing to stimulate your lymphatic system.

Community

Find your tribe. Join an online support group such as the one hosted by Lipoedema Australia or set up one of your own in your area. There are a number of lunches held throughout Australia – see if there is one near you or set one up yourself.

You can find more information on how you can work with me here.