I had 2 ops one in August second one in September - had 14 lymph glands removed in all. Swelling under are was awful at first. Honestly don’t know if arm was always like this after ops or whether people commenting on it have made me think maybe all is not well.
My right lower arm and wrist in noticeably larger than the left and under my arm often feels tight especially after a nights sleep- fingers are OK. So my question is - is this mild lymphoedema and what should I do about it?
Also I love aqua fit and have only gone back for one session so far - we do about 20 minutes of arm work using the water as resistence to tone the arm - pulsing water and using dumbells - is this OK or should I do the exercises but not make much of an effort?
Hi Rainforest - this might not be much help to you just now but BCN told me on Friday to do stretches but NOT to use weights. I’m having a wee bit of bother with ‘Cording’ at the mo, no Lympho but we were talking generally about post-op exercise at the time.
I’m sure there are threads on this forum that would help you or if you can ring the helpline tomorrow I bet your questions/worries would all be sorted.
Hi rainforest, I have lymphoedema and mine started during radiotherapy with lower arm and wrist swelling then my hand,my arm also ached and felt tight.I would make an appointment with GP or BCN if you have one,if it is lymphoedema the sooner you get it under control the better.
hi rainforest
Definitley a trip to GP or BCN. I’m nearly 5years from surgery. I get lymphodema as my lymph nodes were removed. It can be managed and most of the time I have it under control. But if I do too much of anything with my right hand it swells. I don’t not do anything I just split jobs up and definitley dont do any weight bearing stuff. It aches under my arm and I get toothache of the hand when it’s bad.
My ETA chunters at me if I don’t wear my sleeve. She can tell it’s bothering me as I walk round the class with my arm looped over my head. (A habit I got into just after surgery, when the swelling was bad.)
Horizontal resting solves it.
Cherish yourself
Chinook
I would keep up with the exercises but not with weights though there is some research getting done about lifting weight with lymphoedema…tis all very confusing for us lymphoedema sufferers,no-one seems to know or agree what they are talking about !
Good luck xwelcomex with your appointment sound like par for the course having your symtoms ignored by medical professionals.My bcn told me it just took a while to settle down post rads and a doc I saw told me I had mastitis and you don’t get lymphoedema in your breast ! Funny that,seeing as I then got diagnosed with lymphoedema to breast trunk and arm…hmmmm. However, once I got in the system after much stamping of feet I have a great relatinship with my nurse and at least I’m confident that my condition is now getting managed. It is very unpredictable though so just have to keep on top of it.
I have just been diagnosed with lymphoedema, I too was told it was due to healing from the operation etc etc but I persisted and low and behold it was lymphoedema. I have been given a sleeve to wear but I find it is making the area of skin between my thumb and index finger really sore, does anybody else have a problem with this and if so what do you do? Does wearing this sleeve really help as mine just feels so tight. I was measured by the nurse so it has been done correctly. Any answers would be appreciated.
Thanks all
Karen
It seems you have to be quite persistant about lymphodema. I mentioned a couple of times to my surgeon who told me not to worry. Then when it started getting uncomfortable above the wrist I rang the BCN and she referred me straight away to the lymphodema nurse. I think they’re possibly a better route than the GP.
When I told my lovely GP I had lymphodema she was surprised. This was because she though it happened immediately post surgery - so it shows there is a lack of knowledge in this area.
I had very little in the way of visible swelling. It was more sensation such as a tightness and pulling feeling above the wrist, it also felt a bit tender to the touch. When the nurse looked at my arm she couldn’t see it either but then when she did the measurements, she found that my left (non dominant) arm was larger in quite a few places.
Measurements after wearing the compression sleeve have showed its gone down.
In the meantime I would stop the weights until you’ve seen a lymph nurse.
Here’s a link about weight lifting and lymphodema which may be helpful in the longer term:
Just a note to say BCC have an information booklet ‘Living with Lymphodema’ which you may find useful to read. If anyone would like to order a copy of this or read it on line just follow this link:-