Forum Discussion
Lymphoedema and recurrence fears
Hello everyone. It has been ages since I have posted. Since this site was re done I no longer got notifications, then 2 major surgeries in 2016 and life kind of took over.
I was diagnosed with Lymphoedema about 8 weeks ago. Everthing was going along swimmingly. I had lymphoedema but only to a fairly minor degree then one morning about 8 weeks ago woke with a swollen hand and arm. Such a shock. So have had the intensive therapy with the bandages and now have a compression sleeve which just keeps the lymphedema controlled to a point. My struggle is that I was just being able to move on after treatment and surgeries, then this. The constant reminder every day is there now and am really struggling. Is there anyone else in a similar situation?
I was diagnosed with Lymphoedema about 8 weeks ago. Everthing was going along swimmingly. I had lymphoedema but only to a fairly minor degree then one morning about 8 weeks ago woke with a swollen hand and arm. Such a shock. So have had the intensive therapy with the bandages and now have a compression sleeve which just keeps the lymphedema controlled to a point. My struggle is that I was just being able to move on after treatment and surgeries, then this. The constant reminder every day is there now and am really struggling. Is there anyone else in a similar situation?
64 Replies
- I confess I tend to be cautious about articles from natural medicine practitioners even if it is about their own experience. May be helpful in some ways but the Belle Gibson story burns and don't start me on Paleo Pete!
- Not advocating this site as I don't know much about it but they had a bit of a write up on lymphedema in it which interestingly lists Tamoxifen as a contributor to it. https://thetruthaboutcancer.com/lymphedema-causes-symptoms-treatment/
- They do have different compressions and I guess you wont know until you try it, unfortunately. I think you could choose one you like for when going out and want to look really nice, or for daily use once the lymphodema is back to manageable levels. There is the option to ask for assistance or for help on the site if you have more questions.
Hiya Girls,briseis said:
Hi Primek,primek said:I've got a sleeve through lymphedivas. It it very light. Easy to put on and has the separate hand piece. I am lucky enough not to need it daily at this time. Just thought I would share.
https://www.lymphedivas.com/en/shop
How do you find the sleeves? My physio said not to get them as they don't compress very well. She has ordered a custom made sleeve from Varisan. I like the Lymphedivas but don't want to spend that money on ones that don't work. I need daily compression but don't need to wear at night.
my lyphedema therapist said whilst they may be ok for the mildest of lymphedema, they don't really have enough compression. I agree though great for a fun thing to wear every now and again. They do look great.
Paula xx- My therapist is happy for me to get one for a bit of fun but has warned it's simply not the same as my 'real' one and can't provide the same effect on my arm. So great for an occasion but not suitable for me all the time.
Hi Primek,primek said:I've got a sleeve through lymphedivas. It it very light. Easy to put on and has the separate hand piece. I am lucky enough not to need it daily at this time. Just thought I would share.
https://www.lymphedivas.com/en/shop
How do you find the sleeves? My physio said not to get them as they don't compress very well. She has ordered a custom made sleeve from Varisan. I like the Lymphedivas but don't want to spend that money on ones that don't work. I need daily compression but don't need to wear at night.
I will be definitely looking into this. They look so great:) - well in comparison to what I have anyway lolmum2jj said:primek said:I've got a sleeve through lymphedivas. It it very light. Easy to put on and has the separate hand piece. I am lucky enough not to need it daily at this time. Just thought I would share.
https://www.lymphedivas.com/en/shop
They look awesome, just worry because I need custom made garments that if I get the measures wrong they may not suit.
Paula x
Very interresting article hey:) Thank you for sharingsocoda said:Hi lovelies, There is research being done - don't give up hope!! http://www.upi.com/Health_News/2016/06/23/Method-to-reroute-lymphatic-system-may-help-lymphedema-treatment/8841466684985/- That is a good idea Ne. If I had done that I may have not gotten to this stage. Thank you for your kind words too :) Stay vigilant, but don't let it rule your life whatever you do. Stress less:)
- I totally hear you. I had my surgery in 2015 and 22 lymphnodes removed (was a full lymph clearance). I am 41 and in constant fear for lymphoedema. I go to my lymph physio every 3 months to measure my L dex and it drives me insane the constant fear when I just feel slightly swollen etc. I am so sorry that you have to go through this lovely. I can only imagine how tough this must be and as you say being a constant reminder. I hope it settles down soon and that you respond well to treatment. We are all here for you.
