Hi At long last managed to get back on new web site! Still struggling to come to terms with lymphoedema. Got two new sleeves today. Standard length instead of long. However I find my arm always seems worse after I have worn sleeve. Really aches if I wear for a day. Does anyone know why? Also how often during the day should you do SLD and/or exercises. My right arm is 1 ins larger than left. But the left seems to look as though it is wasted because of all chemo/Herceptin. Is that possible? Would be grateful for advice.
Hi Starfish
Sorry you’re having to cope with lymphoedema as well. It just adds insult to injury, doesn’t it?
If your arm seems worse after wearing the sleeve all day, it might be worth making sure at your clinic that it is a good fit. Too loose and it will slip down, too tight and it will constrict lymph flow. Are your fingers more swollen at the end of the day?
Also, if your arm is aching after wearing the sleeve, is there anything else wrong with that arm, eg, tennis elbow? A lymphoedema sleeve pressing down on a tennis elbow can be painful.
I always find new sleeves a bit of trial. I normally wash mine by hand, but with new ones I give them a couple of goes in the washing machine (with some other clothes) to relax them a fraction. I try to use a short, cool programme (30 or 40 deg) and a high spin speed. This might be something you could try.
As for SLD, I do it once a day (for about 15 mins), in the morning, before I get dressed, I throw in some deep breaths and stretches as well, just to get everything going. After I’ve done that, I tend to think that I’ve devoted enough time to this ******* condition for one day, so, apart from wearing my sleeves, and being generally nice to my arms, that’s it. (I should add that I’ve also got a hand-held laser and before I do the SLD, I use that on my arms). I also take concentrated grapeseed extract as this is also thought to support the lymphatics.
I have to say that apart from stretches, I don’t really do exercises. I know I should, but I refuse to have any more of my day taken over by this…
I would have thought SLD twice a day max. would be enough, Starfish. After all, you want a life. Any more than that and it is controlling you, not the other way round.
That’s me. What does everyone else do?
I can’t answer your query about chemo/Herceptin - but perhaps your arm just looks ‘wasted’ simply because the other one is bigger?
X
S
Hi Bahon
Many thanks for your helpful comments as always. We know we can rely on you for down to earth sensible advice about this ***** condition.
I received two new sleeves yesterday. They are pretty easy to put on. Getting used to them is another thing. How can you do normal things in them? Cooking? make pastry, washing hands, etc etc. I find them and it very restricting.
You might be right about another condition. Everything seems to have got worse after end of rads.
I will pm you for the name of that private lymph physio you know.
Very many thanks.
Hi Starfish
Do you have sleeves with gloves or gauntlets? I don’t have hand swelling myself and so I just wear armsleeves (bad enough), but I do know that handpieces can be very irritating and awkward; the gloves because they come down so far and the gauntlets because they can’t be removed, I think, without taking the whole sleeve off?
So…I can’t be much help on this one, sorry. Have they given you any advice at the clinic on how to cope with everyday situations such as the ones you have mentioned? Is your arm very bad? If it’s not, I was just wondering if your lymphoedema nurse has suggested that if your arm appears to be fairly stable and perhaps as a morale booster more than anything, that you might be able to safely leave it off for a while, under certain circumstances?
There’s no denying they take some getting used to. What sort do you have? Most people seem to get issued with Medi sleeves, which I used to find too long, hot and scratchy, especially in summer - and not very ‘flesh-coloured’ to boot. However, there is lady who posts on here, Lynni, who has recently been given a new Medi sleeve which is much more comfortable, so I think they may have taken some of the criticisms on board and either changed their product or the NHS has opted for something different from Medi. If yours continues to be so uncomfortable, I think you should mention it at your clinic - they may be able to try a different brand.
There is a well established link between radiotherapy and lymphoedema, unfortunately. I developed all sorts of shoulder/neck problems when I was having it too and altho’ they are still slowly improving, they haven’t gone away and I had rads 4 and half years ago…!
A bit later on, today (I hope,) I will pm you a link to a website where there are pictures of what a well-fitted sleeve should look like, which might be some help to you in deciding whether yours are OK.
Cheerio for now
X
S
My right arm is 4cm (approx 1.6 inches) bigger than my left, but then it is my dominant arm. The lymphoedema nurse is merely keeping an eye on it, so no sleeve for me. I must say 1" does not seem that unusual if you are righthanded, so I’m surprised at the necessity for a sleeve at all.
When I look in a mirror I can’t see any difference in the size of either arm. But I do have very skinny limbs!
xxx
Hi
Thanks Bahons, ages since I’ve been called a lady lol.
My new sleeve is called Mediven Mondi, previous was a Mediven 550, new sleeve alot more comfortable. In the past I used a brand called “Juzo” which was comfortable but was changed back to Medi when I had to have a made to measure one (cost being the factor).
I have a made to measure gauntlet which goes as far as base of fingers and round base of thumb, and I find it awkward at times. I sometimes unhook it from around my thumb (if that makes sense) and fold it back over sleeve so my hand is free from it if eg I want to wash my hands or put moisturiser on. Maybe shouldn’t do this, but makes things easier sometimes.
I do my SLD for 10 mins and exercises 10-15 mins twice a day.
Take care
HI Lynni
Many thanks for advice. I have two new sleeves and they are much more comfortable and seem easy to put on. They are made by Medi but not made to measure. I too fold the gauntlet back which is a lot of the time. I find the gauntlet very inconvenient. The difference between right hand (affected and dominant) and left is 1/8 ins. I am going to see if I can get second opinion after reading other comments.
Take care
Hi all
Starfish - I don’t suppose anyone measured your ‘bad’ arm before you had surgery, did they?
It’s a good idea to, but it hardly ever seems to happen. That way you would have known what was ‘normal’ for it and whether there had been any significant change.
If one hand is only 1/8 different from the other, that is only a tiny amount. Perhaps you only need an armsleeve; one that stops at the wrist? Just a thought. I think it’s an excellent idea to try to get a second opinion from someone else.
X
S
This may be a silly question but how much bigger would one expect the dominant arm to be anyway. I was told to wear the sleeve all the time as the arm would definitely get worse if I didnt. I am so scared to do any of the things I used to do for fear of it worsening. Really the whole thing is dominating my life. I did take measurements of upper arm before op and measured it again a few weeks ago and it is still the same.
Hi Starfish
What a miserable time you are having with this.
Reading what you have posted, I really think you need to make sure firstly that you do need a sleeve and secondly that if you do, the ones that you have fit correctly. If you only have swelling in your forearm, you may need (but the NHS may be reluctant to supply) a custom sleeve.
I don’t really know what a typical difference between a dominant andnon-dominant arm might be. I imagine it would depend on your build and lifestyle. I remember Martina Navratilova’s playing arm being much bigger than the other…
Can you get back to your clinic quickly? I think you definitely need more advice from someone who is qualified,can actually see you arm and can judge how you should be using it. If there is a long NHS waiting list, could you afford to see someone privately?
I do hope you get something sorted soon - you may need to be very persistent (squeaky wheel, grease, and all that). Let us know how you get on.
BTW, did you get the pm I sent you a little while ago?
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S
Hi S
Many thanks for your advice. As you can tell I am very despondent at the moment. I am going to go and see someone privately I think. In the meantime I am doing all the things SLD etc & sleeve. But I have been told none of them may work. So no encouragement there. In fact NHS seems to be lacking in encouragement full stop as far as I can see. If only they realised what effect this has on moral.
I havent checked for your pm yet. Not quite sure how to. But thank you for taking the time to send it. I will definitely get to grips with it!
Take care & once again thank you for your invaluable advice to me and all of us in the same boat.
x
Hi Starfish - hope you’re still there!
Click on your username (top rhs of screen) and then you will be taken to a page where you can see your inbox, etc.
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S
Hi S
Thanks. I’ll just do that.
x
Hi again Starfish
I’m sorry to hear you feel so down about this. It’s not surprising, as you said, it’s something else to come to terms with.
I’m sorry too, that you seem to be getting the reactive rather than the proactive version of lymphoedema management. This does happen and as you say, it’s so, so, bad for morale.
People are shown SLD and given sleeves and exercises. SLD helps but it’s not as good as MLD (Manual Lymph Drainage) from a professional. Sleeves tend to stop things getting worse and can help to maintain an improved arm in that state.
Once you get to know your lymphoedema a bit better, you may be able to work out what annoys it and what seems to do it good.
If you can afford a private therapist, they are usually very good and, of course, are not under any time/target pressures.
Hope you caught up with my pm (or perhaps I made a mess of sending it???)
Keep in touch, won’t you?
X
S