Archives for posts with tag: exercise

The most commonly searched term on my blog is “lipoedema”.  There is little understanding out there of the condition and frustrated ladies take to the internet to see what they can find out for themselves, because there are precious few in the medical arena who have any understanding of the condition.

So I thought I’d write a blog on how you can get help – what I’ve found out over the last couple years as to what works and what doesn’t, keeping in mind of course that while one thing may work for you, it may not for someone else.  I’m not going to go into what lipoedema is today as I’ve written a blog on that before, here‘s a Wikipedia explanation.

The first place I send people is to LASS (Lipoedema Australia Support Society).  This is a group of fiercely strong women who are searching for answers and getting information out there in as many forms as possible.  This year a number of them did the unthinkable – they bared their bodies for photos to make posters to put in doctor’s surgeries (or anywhere else they felt it might raise awareness).  You have to understand that most of these courageous women have covered up for their entire lives.  They have a closed Facebook group that you can join and I’d strongly recommend this.  The group has many files with information on diets, treatments that women have tried, surgeons, therapists, compression, financial support available through the government, and much more. They are organising their second Lipoedema conference for June 2016, to be held in Melbourne.

Lipoedema ladies, photo courtesy LASS

Lipoedema ladies, photo courtesy LASS

I’ve learned (from the LASS FB page) that a Lymphoedema and Lipoedema Community Seminar is being held on the Gold Coast on the 10th September at the Beenleigh Distillery/Tavern, 114 Distillery Road Yatala, late notice I know, but if anyone is in the area you should check it out.

On to concrete things I’ve learnt.  Again and again I hear from various sources (including the patron of LASS and my lecturer, Prof Neil Piller) that water exercise is the BEST thing for lipoedema.  That could be as little as floating around in the water if your knees or hips can’t cope with too much more, walking in the water, swimming or doing water aerobics.

If you can’t get into the water, then walking is always good.  Or rebounding.  Or whatever exercise you are used to doing, the main thing is to keep your body moving and active as much as you are able within the constraints of the condition.

Diet.  Now here’s the thing.  There isn’t any one diet that has been proven to help, but there are many diets that have been tried with some success.  The RAD diet by Dr Karen Herbst seems to be very effective.  Prof Piller recommends an anti-inflammatory diet.  To me, they all seem to agree that eating a diet high in whole, unprocessed foods is going to be beneficial.

Treatment.  The most frustrating thing of all is the lack of treatment (other than of course the lack of diagnosis or belief that the condition exists).  Common sense tells us to keep up the exercise and watch the diet but what else has been proven to work?  Nothing.  But, most women do respond favourably to manual lymphatic drainage and compression (obviously if they can tolerate it).  Dry body brushing also seems to help.  There are  deep breathing exercises that have been proven to stimulate the lymphatic system (thank you Prof Piller for his research).  There has been discussion on vibration plates and Prof Piller has done some research and found that these can be beneficial if used on a very low setting for a short period of time.  Care must be taken with other pathologies such as weak knees or hips.

The Rolls Royce of treatment is WAL (water assisted liposuction).  The link is to a study published on PubMed.  This is a specialised form of liposuction which minimises the damage to the lymphatic system, uses local anaesthetic rather than a putting you completely under and harvests fat rather than general tissue.  There are a number of procedures over a few weeks and compression is worn afterwards to maximise the results.   Post operative recovery is excellent.  This treatment is not available in Australia yet but Germany is advanced and experienced in the procedure and the follow up recovery period.  German clinics and hospitals are at the forefront of lymphatic research and treatment.  The main form of liposuction used for lipoedema in Australia is called Tumescent Liposuction.

Where to from here?  That’s up to you.  If you haven’t been diagnosed yet, but suspect that you have lipoedema then I’d suggest finding a doctor, physiotherapist or massage therapist who can diagnose you.  Easier said than done.  There is a list of therapist and doctors on the LASS FB page that may be of assistance.  In Australia you can get a care plan to see a physiotherapist for five sessions that Medicare will subsidise.  Massage therapists are not covered by Medicare but most will be registered with private health funds which can offer rebates to help offset the costs.

I am more than happy to talk to anyone about options if you’d like to send me a message.  This condition is something I am passionate about and education is vital, there is not enough information available and it can be very confusing and overwhelming trying to sift through what is out there.

http://www.lisahiggins.ntpages.com.au

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The second day was always going to be full … I was to attend the Smith and Nephew hosted breakfast session – breakfast at 7.30 and a talk at 8, followed by the full schedule of talks from 9am to 5.15pm, followed by the Conference Dinner at the War Memorial from 7pm till 11pm.  But it started slightly differently – I woke up and thought, “wow, it’s much lighter than yesterday” then looked at the clock and saw it was 7.35am!  Not a good start.  I did manage to get to the start of the Smith and Nephew talk, well, it was 8.03 and I had only missed the introduction.  I thought that was a pretty heroic effort.

The talk was pretty much the launch of the JOBST Elvarex Plus, the latest innovation in compression.  The garments are made using 3D knitting techniques and are seamless and the edges have been improved so there is no unravelling.  We were shown some of the machinery that was designed specifically to test the hardiness of the material.  They look pretty impressive, the fingers and toes have no ridging or seams and they seem to be exceptionally well designed, click here for more information.  At the moment they are only available in custom-made garments.

There were a number of presentations on studies that morning, I’ll give the titles of the talks and the conclusions in brackets – The prevalence of LE following gynaecological cancer (one-third of women have swelling by 12 months post surgery, three-quarters by 24 months); incidence and risk factors for LE at 18 months following surgery for early breast cancer (at 18 months, 10% had swelling, mainly in women who had node dissection); generalised oedema post taxane-based chemo in women with early breast cancer (incidence of LE in the arm on affected side increased at 6 months after completion of taxane-based chemo); Improving the way we measure bilateral upper- and lower-limb lymphoedema (Bioimpedance spectroscopy (BIS) is an effective diagnostic tool for measuring lymphoedema).

I attended a Kinesio taping workshop that has inspired me to go off and do the course.  We used it on a muscular level, as we didn’t have guinea pigs with lymphoedema to experiment on, but we saw instant improvements in the range of motion in a number of people with shoulder issues, pretty amazing.  I’ve already sent off for details of the next course!

Kinesio tape

Kinesio tape

The afternoon session had talks on: the feasibility of night-time compression systems for breast cancer related lymphoedema (early results suggest use of night-time compression is not significantly better than standard care, however, they are preferred due to their comfort and convenience in application); Review of the evidence of lymphoedema treatment effect (reviews consistently concluded that complex physical  therapy is effective at reducing limb volume. Reductions were also recorded using compression garments, manual lymphatic drainage and compression pumps. Insufficient evidence to support these treatments as stand-alone strategies); low-level laser therapy (LLLT) for lymphoedema (this was a review of a number of studies, which concluded that there is an emerging and reliable evidence base for the positive effectiveness of LLLT for lymphoedema); LLLT for fibrosis, capsular contracture of post-mastectomy breast implants (this study was done on mice, placing silicone implants subcutaneously on mice then irradiating the site to induce fibrosis.  Results – no capsular contracture in either group, but the implants receiving LLLT had tissue that was better “organised” and had less inflammation.); Do women with breast cancer-related LE need to wear compression during resistance-exercise? (no change in L-Dex readings were observed for either compression or non-compression control groups, immediately post-exercise and 24 hours post-exercise); The acceptability and perceived effectiveness of treatments prescribed for the management of LE (this was a survey sent out to members of the LA Associations of Victoria and Queensland – outcome was – understanding patients’ perceived acceptability and effectiveness of treatments is necessary to determine whether treatment strategies proven clinically effective are feasible in the real-world settings); Imaging in LE in clinical practice (Dr Keely talked about Venous Duplex Scans, Ultrasound of soft tissue and Echocardiography).

A lot of the talks were very evidence-based and statistical which is why I chose to list them out with their conclusions.  The ones that made an impact on me were: the studies on using the Low Level Laser, these showed benefits to using LLLT and I felt justified in purchasing one last year; and the study on wearing compression during exercise – I would have expected there to be a difference, but I think the take away message was that it’s a personal choice, wearing the sleeve will not do harm (of course there’s always the odd person who’ll prove that wrong!) and for some there may be an improvement, but try it and see.

Then there was the conference dinner.  It was held at the beautiful War Memorial.

war memorial view We walked through parts of the Museum to get to the event but it wasn’t really long enough to have a proper look at the exhibits unfortunately.  There was an opening ceremony with Maori dancers performing a number of dances, culminating of course with the Hakka, always an awe-inspiring event.  Literally as we finished the main course a DJ started to crank up the music and in an instant the dance floor was filled with women – I’ve never seen so many women dancing in one spot in my life. I asked one of the guys the next day if he found it odd – he really did!  And we boogied until after 11 (I was dragged onto the dance floor by those who shall remain nameless … Kelly!!!!!).

All in all a very full day.

If you’d like info on any of the talks, please message me.

Day 3, coming up!

I often ask my clients to write guest posts for the blog and most of the time they say, “you do it”.  This week however, I’m posting for one of my clients, Cathy.  Cathy has a real “can do” attitude, she does all she can to help keep her lymphoedema under control and she’s on a mission to spread awareness wherever she goes.  Here’s a short recount of her story …

 

The lump is early Breast Cancer!

On the table are all the cards – fright, fear (and some anger – why me!), surgery, with removal of 23 lymph nodes, chemotherapy drugs, radiation treatment and more importantly, expected cure.

Good news – I’ll be better next year!

That was the plan and yes I did it all.  Lymphoedema from the surgery was the most unpleasant surprise and it was there by the time my drain came out.  All my care givers were most reassuring and early physiotherapy started.  After six months I was attending a “lymph clinic” and measured for compression garments – ugly things but good for control!  A few lessons for self drainage techniques, my swollen and uncomfortable arm became a daily focus, there must be more I can do!

 compression sleeve photo

Compression sleeve and gauntlet photo courtesy Google Images, http://www.justcallushealthsolutions.ca

Google remedial massage – and I found Lisa Higgins – my lifesaver in so many ways.

Regular professional massage treatments have controlled my discomfort, mobilised my lymph flow and with her encouragement and happy outlook I feel good.  The compression garments continue, swimming and exercise do help.

Happiness is my friend,  Cathy

 

Visit my website here for more information

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On Saturday 15th March 2014 I attended the first Lipoedema Australia Support Society (LASS) Conference in Sydney.  This was a remarkable event on so many levels.

Firstly, LASS was set up by women who suffer from the condition Lipoedema as a support group, in order to share their stories of diagnosis (or non-diagnosis in most cases), treatment, diets, where to find clothing/shoes/boots that cater for the condition, practitioners who are open to learning about the condition and many other issues.  These women have to fight every step of the way to get their condition recognised and treated and they support each other on their journeys of understanding and acceptance.

Having said that, I need to point out that LASS has no funding.  And the members are not medically trained professionals who can give advice.  And yet, this is a powerful group of women.

Four ladies spent untold time organising this conference, contacting health professionals who came to talk at the conference at their own expense!  Without exception.  Have you ever heard of such a thing?  When they first started organising the event they had no idea how many people would be attending but the room catered for 50 … there was a waiting list.  Besides the committee ladies there were those who brought prizes for the raffles and most importantly, those who made amazing cakes.

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Gluten free, dairy free cupcakes

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Anniversary cake with the LASS logo, how very professional … and yummy

The first speaker was Dr Helen Mackie, who has worked at a variety of hospitals in Rehabilitation Medicine and is now in private practice at Mt Wilga Hospital in Hornsby, Dalcross Adventist Hospital and Sydney Adventist Hospital.  She is the Medical Advisor to the Australian Lymphology Association.  She spoke about surgical options for lipoedema, in particular about tumescent liposuction (here’s a link to the Wikipedia listing on tumescent liposuction).

Next we had a preview of Fat Legs and All, a puppet film created by Avril Lunken in consultation with LASS, to help raise awareness of lipoedema.  Avril  is an OT who usually creates a flyer for lymphoedema awareness month but took a very big leap out of her comfort zone this year, working with writers, puppeteers and musicians to create a visually stimulating, educational, short story.  Amazing job.

Dr Lyndall White then spoke about overcoming the emotional challenges of lipoedema.  Dr White is a Consultant Psychiatrist in private practice at Belmont Private Hospital.  She talked about PERMA – Positive emotion; Engagement; Relationships; Meaning and Achievement.  Most important, talk to you family and friends for support and reach out to a professional to help you come to terms with what is happening in your body.

Then the man who has it all … all the up-to-date scientific research into lymphology as well as a very cheeky sense of humour and an ability to speak without taking breath … Prof Neil Piller, Director of the Lymphoedema Research Unit at Flinders University.  Neil is passionate about lymphology and is a patron for LASS.  He tirelessly educates about lymphoedema worldwide and is very generous with his time.  The take home message (if I tried to summarise his talk I’d never finish this post) is … try and eat a Mediterranean diet – one rich in olive oil, coconut oil, avocado oil, red wine (after all, it does have Resveratrol), almonds, walnuts, fruits and vegetables and oily fish like salmon, tuna and herring.  And exercise as much as you possibly can.  He had us all up taking five deep breaths, extending our arms as far back behind us as we could go (I give this exercise as homework to my lymphatic clients) to stimulate the lymphatic system.  He recommended swimming, yoga, tai chi but also any activity that your body is comfortable with, so if you like running and it doesn’t cause you pain – then run!  I know the running comment was of particular comfort to a number of women who enjoy running but have been told they should not do it and so were in two minds.

Next up was Kristin Osborn, owner and therapist at Newcastle Lymphoedema Clinic, also a sufferer of lipoedema.  She was wearing a fab tee-shirt with “Hippy Lippy Lady” on it, which is the name of the Lipoedema Awareness Campaign she has created.  She spoke about the Reid Sleeve Compression Garments, the only garments recommended for lipoedema patients (I’ll be looking more into these, that’s for sure).  She has set up a seven step program to treat her clients; anatomy education, products, handy hints & tips, infection control, safe and effective exercise, self massage and diet.  Her website has lots of great information you can take to your GP to try to educate them!  www.newlymphclinic.com.au

Following Kristin, we had Dr Susan Hodson – Medical Officer, Lymphoedema Services, Ballarat Health Services, Queen Elizabeth Centre, Ballarat.  She has written a paper called Lipoedema management: gaps in our knowledge.  At the start of her talk she jokingly introduced herself as “one of them”, as in … a medical practitioner.  But clearly she is different.  She also advocated exercise and diet in the management of lipoedema and spoke about some possible imbalances to look for, eg, check your thyroid function; cortisol levels (cortisol has been linked with weight gain which can play a part in lipoedema); and check the endocrine system as insulin production may be up (also a factor in weight gain).  Yet another passionate professional working to help ease the pain of lipoedema.

Lastly we had three members talk about their personal experiences getting diagnosis/treatment for their lipoedema.  It is not appropriate to relay those stories here but I’d just like to commend these women for their bravery in sharing experiences and photos with the gathering.

Here’s a link to a fantastic YouTube video entitled, You Mean It’s Not My Fault: Lipoedema, a Fat Disorder.  Well worth watching and sharing.

I’ve  barely scratched the surface of the day’s proceedings.  I met many courageous sufferers of lipoedema and some passionate practitioners (and some women who were both) and I just know that we can raise awareness of this condition.  We all just need to get talking.  Who’s with me?