Copy
View this email in your browser


Good morning and welcome
to Day Three of the PhysioPod UK and LWO Community 
Lymphoedema Awareness Campaign running from
March 6th to March 11th 2022 which focusses on lymphoedema of the arm

 
 
An introduction from Gaynor..

The Challenges of Arm Compression

By Gaynor Leech

Arm lymphoedema can be diagnosed with both Primary and Secondary Lymphoedema and L-W-O Community support group members may be affected in one arm but several of our members do have lymphoedema in both arms. As with all lymphoedema, self-care is crucial so, daily routines of skincare, compression, healthy lifestyle, and movement are crucial.

Daily Wearing of Compression

The daily wearing of compression is essential to those living with arm lymphoedema, the compression works by putting pressure on the tissue to stop fluid-build up, support the muscles and help the lymph fluid drain from the affected area. While our members fully understand the importance of wearing compression it does create huge challenges for them.

Sleeves and Compression

In this article I will be looking at sleeves with the emphasis on how these fit over compression garments. Every day off the shelf clothes do not take into consideration the wearing of compression sleeves or swollen arms.

During my research I was fascinated to come across the ‘Story of Sleeves’ which details the history of sleeves and how they have changed over centuries.  The diagram shows all the different types of sleeves that we are likely to wear in the 21st century.  When this was shown to our members, they were able to tell me exactly which sleeves they prefer, and the sleeves that don’t work for them and why they are not compatible with compression.

The biggest complaint our members have is that when buying clothes when wearing a compression sleeve, they need to buy clothes that are one to two sizes larger than normal.  This is not good for their self-esteem and has a serious effect on mental health. They find material used in clothes either cause static between the clothes sleeve, and the compression sleeve. Often a long sleeve will not sit right over the compression sleeve and as one member put it “There is a lot of tugging to get clothes sleeve over compression”. This is both exhausting and sometimes painful. Clothes sleeves over compression may look creased. Therefore sleeve (1) would be too tight and long t-shirt sleeves (6) would not sit flat over compression making it uncomfortable to wear and very tight.

Leg of Mutton sleeves (10) would be too tight for an arm with lymphoedema and too big for the unaffected arm.

There was a consensus that Cap Sleeves (2) look awful with compression because with a cap sleeve there is an unsightly gap between the sleeve and the compression sleeve.

While not in the above image sweatshirt sleeves don’t have enough give in them. Our members also tend to steer clear of anything with a cuff, buttoned cuff and do not like elasticated cuffs which can be painful over a compression sleeve and leave indentations on the unaffected arm.

The remaining sleeves would be suitable for someone wearing compression. Bat wing sleeves where a favourite with some of our members.  We do have knitters in our group and hand knitted jumpers are a preference for those members.

One member posted:

“I do not wear any tops with elasticated cuffs, whether they are wrist or upper arm length. I cut inner elastic to loosen the style to keep my body comfortable, without the tightness”.

Another member posted she would wear (7) and added:

“I do not wear tops with sleeves that are too tight, too short and have cuffs. I wear tops with sleeves that are very wide and extremely rare to find”.

On a personal level I don’t wear arm compression as I don’t have lymphoedema in my arm. Since my lymphoedema diagnosis I too have had issues with clothes, even standard sized clothes can vary in size depending on the cut and manufacturer. I was fortunate enough to find a good seamstress who totally understood how I felt and adapted the clothes I wanted to wear without costing me a fortune.

Colours of the Rainbow

There was a time when compression sleeves where in beige or black but thankfully compression manufactures have listened to lymphoedema patients and sleeves now come in a variety of colours. In the poster below, you can see how our members have coordinated their clothes to their compression sleeves and this bolsters their self-esteem.

 

Self Care Advice for Arm Lymphoedema and Lymphoedema In General

With thanks to Jane Wigg of 
The Lymphoedema Training Academy and Lymph Vision

Below is a summary of the tips but please watch the full video above to hear the explanations behind..
EXERCISES FOR ARM LYMPHOEDEMA

With thanks to Cancer Research UK

Learn about the exercises to do if you have lymphoedema in your arm or you're at risk of getting it. This video shows a series of exercises to follow starting with neck exercises, then shoulder ones, then arm exercises ones for your neck and finally wrist and hand exercises.

These exercises can help to keep a range of movements, help move the lymph fluid through the system and can help you to feel better.

For information about lymphoedema please visit: https://www.cancerresearchuk.org/abou...
 
Breast Cancer LWO Community Members Story
"Following my breast cancer diagnosis in 2007, I developed very mild lymphoedema in my right arm, non-cancerous side. This was due to an incorrectly inserted PICC line for chemo administration. It didn't cause me much distress and I didn't wear a sleeve. However, in the summer of 2013, which was a warm one, my right arm swelled very quickly one day. I went to clinic and started to wear a sleeve. Unfortunately, two months later I was stung by a wasp on my left hand and my arm started to swell. As I had a spare sleeve, I was able to control it very quickly.

Eight years on, and my arms were stable. I'd worn a right-hand glove which had really helped with the swelling. I didn't have any issues with my left hand until early last year. I had my Covid vaccinations in my left thigh. Soon after the first, I had pain in my shoulder area, and last summer I was diagnosed with frozen shoulder. Since then, my left hand is considerably more swollen. It's difficult to know if the frozen shoulder (FS) has caused this. Reading the FS forums on Facebook makes me think it may have. Generally, my lymphatics haven't been as good since my two AZ vaccinations.

I'm fortunate in that my arms are still relatively slender. My trunk region is also impacted by lymphoedema. I've had a double mastectomy and last year after my FS, I decided to stop wearing my soft bras and have chosen to go bra free. I think that's helped a little. I haven't attended clinic for a lot of years, as they signed me off quickly when my sleeves were prescribed.

I religiously wear sleeves every day. I find a nice warm bath very pleasant early evening, and in the mornings, I have a quick wash then the sleeves go on. I used to moisturise my arms every night, but I haven't found that, for me, to be very beneficial, as the sleeves deteriorated more quickly. I have an oily skin also.

Recently I've paid for fortnightly MLD sessions on my arms. That's helping my left hand and I now wear a glove on that side. I clear my groin nodes regularly to help my trunk. I don't find my trunk that bothersome, although if I look in the mirror it's clearly larger than it should be.

In 2013 I cried for a month knowing I would have to wear sleeves forever but now they are part of my life! I don't really think about them.

In summer 2019 I went for a private consultation to Oxford to see if some new surgeries into lymphatic improvements would help me. It was very useful, but I've decided against it as my arms are still relatively slim. The surgeon agreed that the surgery may not bring me great benefit due to my mild lymphoedema. It's also a costly procedure"

Liz Johnson has been a member of L-W-O Support Group since April 2015 this story is part of our initiative to give our members a voice.

#MemberEngagement

 
PATIENT TESTIMONIAL DEEP OSCILLATION IN SELF CARE OF SECONDARY LYMPHOEDEMA OF THE ARM

The 'PhysioPod' - A Lifeline in Lymphoedema Self-Management during the COVID-19 Situation

RECEIVED DURING THE COVID PANDEMIC

"On March 12th 2020, I had my last swim for what may be a very long time With my growing awareness of the COVID-19 situation, it felt as though self-isolation would be a sensible precaution for me to take. Alarmed and alert, but not panicking.  All of us with long standing Lymphoedema know how important it is to take good care of ourselves, we’ve developed our strategies and we’ve taken them into our daily stride, haven’t we? And we deal with it. 

 

I had Lymphoedema diagnosed first in 2004, several years after my first treatment for breast cancer. But it took another ten years before I realised that it wasn’t just affecting my arm, but was affecting my neck and trunk too. 

I don’t think that mine is an uncommon story. 

A second occurrence of breast cancer resulted in a mastectomy in 2017. 

It was a bit of a set back (in so many ways!) but it had marked effects on the status of my Lymphoedema. We had to up our game! 

So until the COVID-19 pandemic, my daily routine included swimming – which I love –with resistance exercises, also in the water. The water pressure is the equivalent of whole-body compression suit, you can work out without getting into a sweat, it keeps your muscles supple and flexible, it keeps you fit – yes, it does all the things that we know are great for managing Lymphoedema. 

I kept it on an even keel, with MLD from Anna, my therapist, every three weeks – and I would love to have more if I could afford it! 

And as these things weren’t always quite enough, I had my Deep Oscillation Personal (aka PhysioPod).

I had come to recognise those subtle signs that tell me that things are building up – the heaviness, the tightness, the actual pain if you don’t get your act together. The immediate effect of the machine on pain relief are scarcely believable - oh, but please, do believe it! The visible signs that the lymph has moved are incredible, the immediate softening of the taut, full uncomfortable skin, and the immediate remedying of those very firm spots that probably signal impending fibroses. It deals with all those things. It puts control back into my own hands, and that's really, really important for me. 

But since my self-imposed lock down in March, I received a shielding letter on 24th April, because I'm considered vulnerable. I know I am not alone in this, and like many of you, I suspect, I felt sort of shocked by the reality of it. But the practicalities of it mean that I'm grounded until at least the end of June. So no swimming. And no MLD massage. And I wonder when I will be able to resume either of them, safely or at all. 

Once again, a re-think of the self management! 

I can do the necessary: the gentle stretches, the lightweight resistance exercises, the simple lymphatic drainage, and the deep breathing that I have been taught. But I know that even taken together, they won't do the whole job. 

The PhysioPod will be my lifeline in this. 

I have always rated it highly as part of my self-management routine. 

But I know now that I can rely on it absolutely. 

I'm so very grateful to have discovered it."  

Patient Name Withheld

Lymph Driven with Deep Oscillation
August 2021: In this special research report, Dr. Miguel Amore and María Del Rosario Pineda proved lymph is driven (with ICG) by Deep Oscillation equipment (oscillator applicator head moving gently over the surface of the skin).

September 2021: Marie Reynolds London wrote: "Deep Oscillation makes a huge difference to therapy - moving stagnant lymph is key to overall wellbeing and skin health"






This email was sent to <<Email Address>>
why did I get this?    unsubscribe from this list    update subscription preferences
PhysioPod UK Limited · Sherbrook Road · Daybrook · Nottingham, Nottinghamshire NG5 6AS · United Kingdom