Is there anyone out there the same as me? I have Lymphoedema in my fingers hand and arm and feel completely alone
Finger hand & arm Lymphoedema : Is there anyone out... - LSN
Don’t feel alone, I developed lymphoedema in my left arm, hand and fingers after breast cancer surgery. I saw a lymphoedema therapist privately for lymph massage and found both the massage and advice she gave useful. Unfortunately this is very rarely available on the nhs.
I found a book by prof peter Mortimer, let’s talk lymphoedema, really informative and useful.
It felt like the last straw when I first developed it. I’d come through the cancer treatment and was just finding my feet again when I developed lymphoedema. All the professionals were full of gloom about what I couldn’t do. Everything was negative. Enough to get anyone down but that was 2 yrs ago. It takes a while but you find what you can do and it’s not as bad as it first seems.
When did you finish your breast cancer treatment? That takes it out of you and I found that it took my body a lot longer than I realised to get over it.
I finished my cancer treatment in August 2018 after having 3 ops in just 13 weeks (hernia and 2 breast cancer) then Radiotherapy, so it’s only four and a half months ago. I had Lymphedema diagnosed end of September 2018. I have come a long way since diagnosis i think. My hand and arm has got stronger than it was due to me trying to do things. It is in my right and I am right handed - how about you?
3 operations, you've been through the mill! I had 2 and that was enough.
I finished treatment for primary breast cancer in November 2016. My lymphoedema was diagnosed in September 2016 at the end of my chemo and before I started radiotherapy. Mine is in my left hand and arm, and in my torso, but that isn't an issue.
You very soon learn what you can do and what causes you problems. I was told that the list of don'ts we are given by the hospital was written in the 1920s which is why we are told to avoid washing up, scrubbing and sewing but it doesn't mention car mechanics.
Do you have a compression sleeve and glove? And are they made to measure? If not, request made to measure when you go to the clinic.
I am now 51 and I was very fit and healthy before my cancer treatment. I realise now that it took me a good 12 months to fully recover and coping with the lymphoedema diagnosis at the same time didn't help.
I found it useful to see the lymphoedema therapist, the LSN has lots of good information and there is so much helpful information on this site. I later realised that a lot of the information given to me by the breastcare nurses when I was diagnosed was out of date, so don't just accept everything you are told.
Massage, skin care and exercise are important but so is living as normally as you can without over doing things.
I ended up having LVA surgery in Oxford, which was only available privately. I was one of the lucky ones for whom it worked. It's a lot of money and a gamble and it's not a cure. I had planned on replacing my car but decided that my arm was the priority. Hopefully one day it will be available on the NHS. I still have slight swelling in my arm and hand but can manage without the compression now.
Wow that’s a lot of info, thanks. It’s so good you can manage without compression now, it was worth the money you spent wasn’t it.
I do the skincare well and excersise and I eat well too so those are good things my nurse tells me. I was a slim and healthy 63 year old before the cancer so I suppose that put me in stead. I have an appointment at the Lymphedema Clinic at a Hospice in a few days. My nurse seems up to date with stuff and has got me some good made to measure hosiery for my hand and arm.
Do you what I would really love to do? - actually meet someone wearing a glove and sleeve and sit and talk with them in person. Have you ever done that?
I've seen other women wearing compression but have never sat down and had a conversation with anyone about the condition other than the professionals.
I think it was worth every penny I spent on the operation, not sure I would feel the same if it hadn't worked though.
It sounds as though you are in good hands and it might be worth asking your nurse if there are any patient groups in your area.
Good luck with finding some support. I swim regularly and this has helped my arm/hand/fingers situation to the extent that I have been able to do without a glove and use a Mediven gauntlet from their Harmony range.
The LSN is a great organisation run on a shoestring, and as an earlier post suggests their is a good FB page if you're on social media.
Hi Im from Sheffield England , after being under the hospital for eight weeks because they thought my breast cancer had come back, when it was proven it hadn't i was diagnosed with lymphedema, this is going back to beginning of November 2018, I wasn't referred to lymphedema clinic till January 10th 2019, my arm and hand at that time was badly swollen, now 6 weeks later and still havent got an appointment with the clinic, my arm is a lot worse,plus my shoulder is seizing up and I now have tiny blisters all over my arm. I think it is disgusting in this day and age to have to wait all this time for an appointment to any clinic. I was a 73 year old fit female who loves her dog walking and gardening, but slowly I am giving in to the fact that if I don't get help soon will be disabled
Hi, I live near you and have lymphoedema in my right hand and arm. I was also diagnosed months after I developed lymphoedema and had to badger the cancer team until I was finally referred to the lymphoedema clinic -where the lead nurse was on sickleave having developed...lymphoedema!
I then threw myself into more research about the condition and my options, at no time did I get any help (except for on this forum which was a lifeline). I finally got referred to a consultant in lymphoedema in a different city , but it was exhausting .
I totally feel for you -I hope that you have finally received the help that you need. It really is shameful what so many people, already shaken by cancer have to go through.
I’m sorry to hear of the distress you had to endure, and yes I agree, having been through cancer, Lymphoedema is the last thing we need. I recently had my lymph nurse try me on a combi glove/sleeve which leaves my fingers free. I feel I can now face the world, it has lifted me so much. The separate sleeve and glove got me down so much but at the time my fingers were swelling too. I have had the combi for a couple of months and feel it’s a life changing thing - for me anyway. After lots of prayer, my fingers no longer swell up, how wonderful is that. Have you got a combi? If not, and your fingers don’t swell, ask for one and see what a difference it makes.
I'm so glad to hear that you've got a garment which is working and are in a better place
When I wear compression garments, I wear a made to measure elverex glove and separate sleeve. I am interested in finding out about the combi though...it has always seemed to make sense since there would be less restriction around the wrist.
What make is yours? Is it made to measure? How far up your arm does it go and is it more difficult to get on and off than the separates? Sorry, questions, questions!
The garment is Mediven Harmony C 1 Comb Armsleeve with Grip Sand. You will need to be measured, as I was by my lymph nurse. It fits on my thumb just below my knuckle and across the bottom of my finger, so they are completely free, and up to 2 fingers below my armpit. Hope you get one - all the best.