Hi mh24
Presumably you’ve read all posts in this thread (including mine - 7 / 20).
Eventually, the treatments knocked mine right back (very slightly puffy hand not obvious at all). As in my entry before, if you can afford it, persevere at home with the pneumatic massage sleeve. Much easier than faffing around with strapping and compression garments, although these will help to kick start improvement.
I know that anger so well, but it does fade away. Try to be patient in both respects. You will get there 
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Hi MistyK
Thank you for your encouraging message. I will try to be patient, hopefully when I get the compression sleeve (
won’t have to wait too much longer), and get to see the lymphoedema specialist I will feel better about it.
I really appreciate you sharing your experience and your suggestions.
Thanks again
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Can I just dive in re faffing about with […] compression garments?
It takes me less than 30 seconds to pop mine on in the morning. The most of that time is making sure it’s lined up property so that the elbow section will be over my elbow and not either side of it.
I doubt my night-time one takes 5 seconds.
They go in the washing basket as quick as a pair of knickers and go on a delicates wash with the rest of my undies once a week. Line or airer dry.
No faff whatsoever in the 3 years that I’ve had lympheodema. As for kick-starting improvements - they work and keep me to within acceptable levels (<8% difference between my arms) so more than kick-starting
I’d say wiring up a pneumatic massage sleeve is a faff - where would I plug it in and sit or lie to be comfortable. I have looked as I had hospital pneumatic massage last year and I investigated buying for home afterwards.
The only time I don’t wear my cuff is when swimming or sunbathing lying down. Only one person has ever commented on my cuff - a checkout lady said that she hoped my arm got better soon. She obviously thought it was a short-term injury bandage.
Breast cancer treatment - the gift that keeps on giving but lympheodema is certainly not a deformity to me.
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I had it in my boob last year . Really heavy and red and pitted . Even a SNB can cause it , radiotherapy too as scar tissue and damage from radio all restrict lymph fluid I saw a private lymph nurse , she recommended keep moving .
Anything , even walking but swimming and aqua aerobics are good) compression ).
I hate those , so I started the mini trampoline classes ( also good for joints and bones ) and I went back to yoga and the gym .
Also , keep your weight down ( hard on Anastrazole).
Touch wood no flare ups since .
The Lymphoedema society have videos on you tube .
Good luck x
Hi
I didn’t mean to imply that compression garments were difficult to manage. It’s just that, in my case, it took a lot of trial and error finding anything that actually tackled my particular trouble spots - the back of my hand, between my fingers and in the crook of my thumb. That was a very tricky area onto which to apply sufficient compression. I tried full arm wrap-around cuffs, kinetic tape, heavy strapping from hand to armpit, self draining massage, and about 4 different types of really tight woven sleeves and 4 types of woven gauntlets (with and without mitten fingers), with foam templates and pressure pads (which were difficult to position effectively). I also had sessions of manual lymphatic drainage and used a body brush. This was all over a period of about 6 months or more, and was down to my brilliant NHS lymphoedema therapist who persevered with determination. But everyone is unique.
With regard to the pneumatic sleeve, I found that it was this that finally managed to reduce the swelling almost back to normal. The machine sat on my coffee table beside a power socket, I rested my sleeved arm on the arm of the chair and let it do its stuff for half an hour whilst I watched telly. Simples.
I have very slight puffiness at the base of my fingers still (imperceivable to anyone but me) and haven’t used anything at all now for about a year. Perhaps I’ve got off lightly in the end, but I’m not taking anything for granted.
Good luck to everyone who is finding their own path to getting on top of lymphoedema.
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Hi,
I am quite new to this forum. I had an ALND a year ago and have recently developed swelling in my fingers. I had a CT scan and doppler to rule out recurrence or DVT in the arm as it was quite tender and painful.I am awaiting a lymphoedema clinic referral now as all was clear. I really don’t want to have further unnecessary investigations.
I have now noticed 2 distinct swellings on my forearm which are getting bigger, Has anyone experienced this as part of the lymphoedema?
I would be very grateful if anyone could tell me if this happens normally, as opposed to just generalised swelling. I wasn’t able to find much evidence of this out there.
Thank you!
Hi, I know I’m late to join in here but I wanted to share my experience of having lymphodema in my left arm for 13 years since my first BC with axillary clearance and rads.
My local Lymphodema clinic were really depressing and down beat and I couldn’t bear it so looked for other help. I found a Deep Oscillation practitioner who had previously been a nurse. She introduced me to Deep Oscillation therapy and it has changed my life. It stops the lymphatic fluid from pooling and also from any fibrosis which only happens in the very long term. It gave me so much con fidence that I could actively manage my lymphodema that I went back the the gym and very very slowly stared weight lifting amongst other things. I now deadlift half my body weight. If this impacts my lymphodema at all, (which it normally doesnt cos of how very very slowly I built up so my muscles were never under strain), I know I can have a deep oscillation treatment and it will be resolved
I’ll.post the website details as you need a properly trained practitioner. Sadly it costs £
One other thing. I sing a lot and that stimulates the area around the sternum where we have a lot of lymph nodes so that helps drainage a lot.
All the best in this much neglected world of lymphodema.
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I have had it for six years and will have for rest of my life that’s how it works unfortunately but it’s stable thanks to regular checks at clinic so and compression sleeve which I have to wear every day apart from special occasions. Dont leave it you will be provided with all you need by NHS
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