Vaccine query: Hi, I was diagnosed with Lymph and... - LSN


4,864 members2,257 posts

Vaccine query



I was diagnosed with Lymph and Lipoedema in October in both legs. I showed the Lymph nurse my arms as well as the upper arms are definitely disproporitionately larger and they are heavy and achey. Her response was "you can have compression for those as well if you like". I said no as I didn't fancy having all that to deal with at once.

So, should I be avoiding vaccines (obviously thinking about C-19 at the moment) in my arms?

I am also concerned I might have more general lymphoedema as my tonsils were very large until I was in my early 20s, I have lymphatic colitis and when I was born I was checked for congenital adrenal hyperplasia and I'm now wondering whether that was genital oedema. Do I need to push to have this investigated before having the vaccine too?

Many thanks

6 Replies

Talk to your lymphoedema clinic or GP.

Boudica78 in reply to Lynora

I have talked to my GP who (understandably) wasn't sure about doing anything given the current situation - though I didn't mention vaccine query as I've only read about it since. So I'm wanting to know exactly what I'm asking for before I contact the clinic

Lynora in reply to Boudica78

If your GP isn’t sure, then talk to the lymphoedema clinic.


Hi Boudica78, I hope you understand that we are not able to give individual medical advice, Lynora is right to suggest you discuss it with your lymphoedema clinic as they will know your complete medical history, the general advice re vaccines is on our website it does sound as though you may benefit from being referred to a lymphoedema specialist - not sure where you live but london and derby are the two main centers.- your lymphoedema clinic will have contact details but you would need GP approval and the london service will only accept referrals from a consultant.

Many thanks Lynora and LSN folk. I wanted to be sure it was worth chasing up - particularly at the moment.

I read the general vaccine advice and thought - well I don't really know what's happening at all and it sounded like I should before I had it.

All the best

Your having Lymphödema in your arms as well as in your legs presents a complicated situation. As for the Covid vaccine, myself, I would go ahead and get the shot, as the LAST thing you need is to get Covid-19 on top of all you are dealing with. Even if you get a sterile, carefully given shot, it doesn't guarantee that your lymphödema will increase. Covid-19 can be life-threatening for everyone, generally speaking. If you check it out you can find a place that offers lymphödema treatment and the latest knowledge and advice. Nurses and doctors are not knowledgeable enough to advise you. It takes special and intense training. I am not familiar with the LymphSuppNetwork, but I know and trust the National Lymphedema Network.

You may also like...