Hi I am posting my message again as just noticed my title was wrong! Spellcheck!!!
I have lymphoedema in my whole left leg and the doctors I have seen believe it is a post thrombotic condition following a DVT I had in that leg in 2021. Otherwise I am very fit and healthy. I have always done a lot of sport and am trying my best to continue but it is hard as my leg feels very heavy and often I have pain/pins and neeedles/numbness/tightness.
Overall I am struggling to come to terms mentally with having this condition as well finding the physical side effects limit my lifestyle. I have had very little support from doctors and generally feel lost. I am scared about what the future holds for me and find it difficult to talk to family and friends as I feel like I am always moaning.
I have never even met anyone with lymphoedema and think it would help me to talk to someone in a similar position. I contacted LSN and there is no support group in my area or even relatively close by.
I live in East Hertfordshire and would like to set one up. Even if it is just an unofficial social thing. Is there anyone who lives in Hertfordshire or nearby who would be interested? It would be great if there were maybe a few of us.
If you joined the LSN (of not aleady a member) you could go to their AGM in September and meet lots of lymphoedema patients there. They also have at least one very experienced , lymphoedema professional, speaker.It might be worth joining some of the lymphoedema face book groups. It is though one of those that I met a local lymphoedema patient and we meet up for lunch, when we can ( North West London).
Separately my private MLD therapist asked me if I would meet for coffee with another patient of hers - newly diagnosed with lymphoedema and struggling to get her head round it. I was very happy to meet with her and she seemed reassured meeting someone with lymphoedema since childhood who has had a good, full life. It then turned out she probably didn't have lymphoedema but we had had a lovely meet up!