Does arm swelling sometimes take months to get under control?

[LynGl]

Hello everyone, I was diagnosed with this rotten condition in arm last November and given antibiotics. I have regular check ups at clinic and nurse was concerned the swelling was still getting bigger (its definitely worse in the heat) even though I wear the compression sleeve 12 hours every day. I had a scan at hospital to check under arm nodes were ok and they were-massive relief at the time but nurse has sent me back to breast care for blood tests and further scans. If nothing wrong then she'll let me try bandaging. Im worried sick. I just wondered if anyone else had a swollen arm for this amount of time (9 months) without there being anything 'sinister' going on? Does it just take a long time to go down sometimes?

[AnneBury]

Don't panic! People have swollen limbs for a long, long time and decent management can also take ages. Partly because different things work for different people and it can be trial and error to see what works. Most of us find hot weather makes things worse (but not permanently). The Lymphoedema Support Network lymphoedema.org has loads of information and a telephone help line.

[LynGl in reply to AnneBury]

Thank you so much for replying so quickly and for your reassurance. One more question, do you know if its common with this condition to get a few tiny broken veins on the affected arm and chest?

[AnneBury in reply to LynGl]

It is not something I am aware of. The cause of my lymphoedema is different to you though ( i was born with faulty lymphatics) and it is in my legs. As I mentioned the Lymphoedema Support Network has a telephone help line (office hours). Phone them tomorrow. They can talk you through things and give you information. Telephone number on website. I am sure you will find them helpful, and reassuring. Also look up lymphoedema on the website NHS Choices.

[LynGl]

Yes I spoke to them last week. Thank you

[Lorns100]

Have you had any manual lymphatic drainage?

[LynGl in reply to Lorns100]

I've tried 2 types of compression sleeve and was just starting SLD but it was stopped after the first session until I've had further tests. My lovely nurse explained that for LD in the arm, they don't recommend MLD because the sleeve/bandaging does the job just as well. I was about to start the bandaging when the nurse recommended I go back to breast care clinic for more scans and blood tests. I know she is just being thorough but I really wondered if anyone else has trouble getting the swelling down even after several months, without there being anything 'sinister' going on.

[lovesradio]

Hi Lyn

I have left arm lymphoedema following mastectomy and some node removal. You don't say what triggered the arm lymphoedema as that may have some bearing on the degree of swelling. The cornerstones of treatment are skincare, compression, movement and protection from injury along with techniques for lymph drainage such as SLD and MLD. My arm was worse after a holiday in Croatia a few years ago when I left my sleeve off too often and also got a bit hot and sunburned - stupid really! Vanity prevailed but didn't do much for my arm. I swim and practice yoga. I also make sure I swing my left arm when I walk and I wear my sleeve from when I get dressed in the morning to when I get undressed at night. I get two sleeves at a time after I explained to my GP the need to rinse the sleeve out at night and let it dry naturally, just doesn't dry overnight in Scotland even in July!

[LynGl in reply to lovesradio]

Hello lovesradio! Thanks for your post. I had same treatment as you in 2011 and last November arm swelled up and it has continued to gradually get bigger. I was initially on anti biotics and had a scan which revealed nothing- thank goodness, although lymphedema nurse has referred me back to breast care clinic for more tests because in her view the swelling should have gone down by now because I wear the sleeve all day every day. Obviously Im a bit worried and I just wondered if its taken other people many months to reduce size a bit. Like you I am fit and active and have just started swimming again. I do a lot of hill walking but was told to support y hand/arm in a pocket and after every walk my arm really aches so I shall definitely try your method of arm swinging in future!

[lovesradio in reply to LynGl]

Good luck with getting the swelling down as it can take time to settle. The LSN has a good DVD to show suitable arm exercises. Oh and my physio recommended wearing an old sleeve while swimming. I did for a while when I was trying to get a reduction in swelling but fortunately my arm has been pretty stable recently.