Hello everyone. I used to use this forum a lot but haven’t been on for a while! I’ve had lymphoedema for about four years, in my left arm. It’s very mild and, having worn a sleeve for about two years, I don’t use one at all now. However, I’ve had a sore shoulder on and off for about a year now. It tends to ache in the morning and evening. I mentioned it to my consultant and he wasn’t concerned. I wonder if it’s to do with the fact I don’t use this arm as much in term of lifting etc Or, linked to surgery (lumpectomy and aux clearance)? Has anyone else had anything similar?
Perhaps mention it to your gp, and ask if a physio could have a look at it.
That worked for me 
christine xxx
Hi, I have had a very sore painful shoulder for at least a month, More in the scapula area. I have been so worried that I went to see my consultant last week. He examined me and said he was not concerned, he thinks it could be caused by a build up of lymph fluid in his words “it’s like a traffic jam”. (I had lumpectomy anc in June of last year). I have had a few physio sessions but to be honest they didn’t help me, so I’m just hoping that it will eventually ease off. I hope yours does too. Michelle xx
Hi Hatts,
I also have had a sore shoulder since mx, 2years ago, I have been having physio for about six months and it has made a big difference to me. I think that sometimes when you are aware you should not be doing lots with that particular arm you tend to not do anything and that makes it ache/sore even more. Give physio a chance, it took about eight weeks for me to notice a change x
Thanks everyone. That’s really useful to know. I definitely am conditioned to not using my left arm as much anit so its probably weakened it to a degree.
Hi Hatts
yes, have had painful shoulder from about 3 months after my Mx and axillary clearance - I’m now 4 years down the line Some of it I discovered from a physio was because I was holding my arm differently. I got in the habit of bringing it in closer to my body (initially as protection but then it became what she called a maladaption). You might be doing the same. She also advised me to make sure that I don’t tense up the shoulder when I walk and to make sure I swing my arm.
I have found that the better under control my lymphodema is then the more improved the shoulder pain. My lymphodema is mild but I’ve recently had an exacerbation and my shoulder pain has increased with it. I do think there is a link with the fluid build up and the shoulder pain.
To be honest, I didn’t find NHS physios much help at all. They treated the shoulder which helped short-term but didn’t look at things like the way I was walking or identified exactly where the pain was. I paid to have private treatment from someone who dealt with chronic pain. It wasn’t cheap and it was a struggle financially but it was worth it for me.
take care, elinda x