good news story re lymphodema

I thought I’d post this as it might be helpful for anyone recently diagnosed or really worried about lymphodema.

I was diagnosed with lymphodema in my left arm a year ago. It was mild but nevertheless I had to wear a compression sleeve every day, do my lymph drainage and exercises. I had a constant tightness around my wrist and the whole thing made me feel very low.

However, one year on and my left arm has gone down so much and is now a whole 1 cm smaller than my right arm (as it should be 'cos right arm is dominant) that I no longer have to wear my sleeve every day, only when I’m doing something like housework. I still do my drainage and exercises every day. I wasn’t surprised when the nurse told me this as I have no tight feeling in my arm at all now.

I know I’m lucky and others have had a lot more problems than me but I wanted to show that there is some hope even with something chronic like lymphodema. I couldn’t afford to pay for manual lymph drainage and I’ve done nothing special.
Lymphodema can’t be cured of course but this shows how much it can improve.

take care all, Elinda x

Really pleased to hear this, so thanks for sharing.

Can I ask how you found out about ‘drainage’ that you say you do every day? I have been seen by an NHS specialist who fitted me with a glove and sleeve, but have got no instruction on drainage (other than an offer for MLD in 6 months time). My mild case has now become much worse - even though I’ve been wearing the compression sleeve and glove every day for 3 months. My arm is purple this morning and so painful. I’m typing with one hand and can’t even touch my hand to my shoulder now as the arm is so swollen, and can’t hold a pen to write.

Called the clinic this morning and was told to go to my GP. Or someone can call me back on Thursday. I’m not overweight, I run ever other day, work full time and finished rads in August.

I’m worried about a blood clot as it looks so purple. Let me know about the drainage. Any other tips welcome.

Thanks
Annie

As someone who is going next monday to see the lymphoedema nurse re. swelling round my wrist, this is really good to hear. I was left with terrible cording after surgery and I am hoping it is just the tendons that are swollen. After watching my mum suffer with it for years, she couldn’t even lift her arm towards the end of her life, it is something I really don’t relish but I suppose in the grand scheme of things it is a small price to pay.

Thanks for sharing this news and I would also be interested in the lymph drainage exercises.

HI Annie

that doesn’t sound right at all. You definitely need to get seen by someone very quickly so I’d get an emergency with the GP. It is possible that it’s infected and that needs urgent treatment. Likewise if it were a clot that would need urgent treatment too.

The self lymph drainage is something I was shown by my lymphodema nurse. Once you’ve resolved your current problem with your arm you may like to buy a DVD from lymphodema support network.
lymphoedema.org/Menu5/Index.asp#VIDEO

I did though find it helpful for my nurse to go through this as well.

For a good set of exercises I use the ones from the Haven:
thehaven.org.uk/how-we-can-help-you/lymphoedema
Look at the bottom of the page for the video clip.

I think the recommendation is not to wear the sleeve, do drainage or exercises if there is any possibility of infection/clot etc.

Please don’t hesitate to get to your doctors.
take care, Elinda x

Hi Sunshine1

Please see exercises in the above plus a good fact sheet about care for the ‘at risk’ arm.
I hope you don’t have lymphodema but if you do, then I hope you’ll feel encouraged by my story. Elinda x

Thanks for posting Elinda, it certainly makes me feel a bit better. I have mild lymphoedema in my hand & arm. I’ve been wearing a glove & sleeve for the past few weeks as directed by my lymphoedema nurse but the back of my hand swells more when i wear the glove. I spoke to the nurse yesterday & she said a lot of people get that & to just wear the glove not the sleeve. She does seem a bit vague & i don’t feel that confident in all she says. Her advice always seems quite conflicting.I can’t have drainage yet as im still having chemo but stories like yours do help.
Sunshine1, i do hope u get on ok at your appt & hope it’s not the dreaded lymphoedema. Good luck.
Annie, i agree. that doesn’t sound right,i think u need to get that seen to, hope it goes ok.

Thanks everyone for your support and the really great info about the exercises - I’ll order the dvd. Just to let you know, I went to GP, who referred me to A&E. On the way to A&E I met my Macmillan Nurse, who miraculously found my surgeon!

They took a look and said that the ‘blue’ colour looked like that sleeve and glove were too tight. ‘Something’ had made the arm swell, and putting the sleeve/glove over a swollen arm is bad (I thought it was good, but apparently not if it has increased in size from when you were measured).

So, I have a tubigrip on the arm now and have to wait to see what happens in the morning. It’s b***dy painful, but at least it isn’t as blue any more - and it hasn’t increased in size any more, so that’s good, as it had got big enough.

Elinda, I’m determined mine will be fine after this little difficulty, but this has taught me to be a bit more careful. I am the sort of person that ‘hopes’ things will get better, so yours is a good lesson as you actually did something about it and I will too

Thanks everyone
Annie22

Somwehere on You-tube there’s a video demonstration about self drainage that i found very helpful, and my macmillan nurse lent me the DVD as well as demonstrating it.

hjv, I didn’t know you couldn’t do self-drainage till after chemo, or is it that they won’t send you to a massage therapist to be “done” til after the chemo? Or do you have a port or other venous access for the chemo that they don’t want you to damage if you massaged over that area?

Sorry i don’t know how to search You-tube to find that video again, I think it was linked from the lymphoedema website. It was an american teaching site with several sections and linked videos with anatomy, sleeves, self drainage and other apsects.

Great to hear the encouragement Elinda. Mine has improved a fair bit since i quit work :slight_smile: but then the weight started creeping back up and it got iffy again. It’s good to think we can have some control!
I also love how you don’t have to wear your sleeve every day now, but only when you do housework. This really encouraged me, as I thought i was such a slob only hoovering once a … as I know too many people who give the impression they do actually do lots of housework every day whether it needs it or not, and when you go to their place it’s always immaculate so i thought… anyway does this mean if i quit housework altogether, my LE will go into permanent remission (we know it’s incurable) LOL.

Annie, i’m really puzzled by your story, why is a tubigrip okay if a sleeve isn’t, duh? Don’t they both compress?

I think this is one of the massage tutorial videos I found useful youtube.com/watch?v=QA-wi0d7-Ro
and also this one youtube.com/watch?v=Q9FP6AHj9Eo

Sorry I can’t find the best one.

Hi all

Hymil - these videos are quite different from what I’ve been shown by the nurse and from the lymphodema society. Probably the main difference is that the drainage I’ve been shown is specifically to help provide new channels for lymph to flow from the arm. It starts in the neck but then I do a specific set of techniques in my good armpit, across my chest and also on my bad arm.
The other thing is getting the pressure and speed (slow) which you do this. That’s why it’s good to have a nurse involved as she/he can check if you’re doing it right.

I’m like you with the housework. I do it once a week. I’d love my house to be immaculate but only if someone else is doing the housework. There’s got to be more to life than hoovering and tidying up!
I do wear my sleeve other times too particularly if i’m doing any active. But now I never wear it if I’m going out for the day for example.

I have actually put on half a stone since I was diagnosed with lymphodema yet its still dramatically improved. Of course, it might be even better if I lost weight and I am trying hard again. My lymph nurse weighs me at every appointment which is a bit depressing!

Annie - its really important to get the sleeve right. The whole point is to increase the drainage not cause a point where the blood and lymph can’t flow properly.
I don’t know if you’ve put on a lot of weight rapidly because I can’t understand how it can get that tight. Are you reviewed on a regular basis? Perhaps the sleeve was too tight to start with?

It took me about 3 attempts to get the right sleeve.
If I were you I’d ring the lymphodema nurse or clinic you go to and try to get an appointment before Christmas or at least get their advice as to whether you should continue with the tubigrip. I’m also very puzzled by that - was this something the surgeon recommended? Remember they’re not experts in lymphodema management and its important to get the pressure right. Good news though that its improved.

The other thing is that I was told not to wear my sleeve at night. In fact I always take mine off about 6pm.

Hjv123 - my hand got puffy when I had a sleeve and a glove. I switched to an all in one sleeve/glove and it improved. I sometimes get a bit of puffiness but my hand measurement has actually decreased.

take care all, Elinda x

Hymil. i don’t really know why she can’t do the drainage/massage till chemo is finished. She just said she’d show me how to do it afterwards as it shouldn’t be done during chemo. I don’t have a port or anything like that. I don’t really have a lot of faith in her to be honest. She doesn’t seem to give out enough info for my liking,i have to keep asking.
Elinda, the nurse did say she would try me with a combined sleeve/glove but my appt isn’t until the 20th Jan so i’ll just have to hope it doesn’t get any worse in the meantime. I do feel a bit lost with all this lymphoedema lark & slightly paranoid about it.

Hjv123 - That does seem a long to wait which is a shame - any chance she can see you sooner? Anyway don’t get paranoid. When I first thought I’d developed lymphodema my surgeon said he didn’t think so and so I didn’t follow it up for 6 months when I asked to be referred to the lymphodema nurse. I realise now that it had definitely started back then so it went untreated all that time. It did take a while to get it under control, get the sleeve right etc and I wasn’t shown lymph drainage techniques straight away.
I’m always careful but much, much less paranoid than I was when it was first diagnosed. My nurse is fabulous which helps and she has always said from day one not to let it rule my life.
Elinda x

nwlymphedemacenter.org/vid_mngmntA.php
scroll down to below the first video window and choose Demo 1 and Demo 2

My nurse gave me it in small bits too, I some times felt I had to drag it out of them after having gone online and found out for myself. One visit I did get a trainee who didn’t seem to have much clue, but I never saw her again (maybe she failed the trial day!) But actually there’s two advantages to not being told it all up front: (a), you don’t retain everything the first time, especially if you are stressed or anxious, and sometimes the more they say the less you remember; and also (b), they get to see you several times, see how the arm is coming under control or not, build some sort of relationship and get a feel for how you are coping generally, not just with the lymphoedema, then if there are other issues eg changing your job, depression etc they can help support that too, rather than just being technicians on the swelling. Especially as they are often in the later stages of treeatment when you may be losing touch with the acute care teams, and starting to get into the post-acute stage blues (aka adjustment: Is this the new normal, should i still be this tired/sore/stiff/irritable after six months.)