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My arm

14 REPLIES 14
Guest user
Not applicable

Re: My arm

sleeves Hi all ,
thanks for your words of support.
I went back for my follow-up lyphoedema nurse appointment todayafter wearing the sleeve everyday practically since the appointment a couple of months ago.instead of 14% bigger it is 7% result.Am so pleased.She did say however that I will have to always wear a sleeve.Period due ,hubby still in Afghanistan and work is stressful at the moment so I did well not to cry..i know I should feel lucky I survived cancer but at times I want to scream " it is not fair" and stamp my feet. I feel a bit hard done by.I have high blood pressure and neurofibomotosis too.Anyone else feel hard done by?
Ayway it is good to have here to let it all out
Anyone managing to do rowing or boxing without adverse affects to their arm?Want to keep fit but bit nervous about making the arm worse.

Hope you are all coping

Charliexxxxxxxxx

karen
Member

Re: My arm

Hi susanne,
you\'ll really find it tiring when you first go back.....i would advise a phased return if possible.
i see you\'ve just been diagnosed, hope everythings going ok [ well as it can do under the circumstances}.....whats the next course of treatment for you?

take care
karen x

Guest user
Not applicable

Re: My arm

hi karen

glad to hear your arm turned out to be ok, you\'ll hav eto take it easy !!!!
saw that you are a nursery nurse - so am i working with 3-5 yr olds, hoping to get back in the new year
take care lol susannexxx

Guest user
Not applicable

Re: My arm

sleeve Hi all,
Glad to know it is not just me. I have not got my sleeve yet but know that I will wear it. It is worth it if the achy heavy feeling goes.I also have asked if on nights out or on holiday I can leave it off.I was tol;d that was fine. It is important that when very active to wear it.
I will have to adjust my exercise programme .I like body combat,( lots of punching) rowing machine and cross traineer apparently all the wrong kind of things. I should do pilates , yoga and swimming. I can use light weights but have to listen to my body.I have been told all this before as I also have high blood pressure.I am not a good patient.
thanks

karen
Member

Re: My arm

Saw BCN today, reckons it was a case of just over doing it, got another leaflet re., lymphatic massage and exercises.
hardly any difference in measurements of arms.
Sorry to hear about those of you who have lymphodema, i can imagine wearing the cuff is like wearing a \'\'badge\'\'
you were all so good to take the time to reply to me .
Thank you very much for that......think i\'ll have to start remembering there are some things i shouldn\'t do.

take care all
karen x

Guest user
Not applicable

Re: My arm

I wear a sleeve Hi,

I just want to share that I have also experienced tightness and heaviness on my affected arm before. What I did was quickly wear my compression sleeve and it really helps.

I\'m actually living in SEA and my physiotherapist here told me that \"if it feels heavy and tight\", it probably is, and to trust my instincts.

I exercise almost every day. I walk, I also do pilates and have started yoga. I always use my sleeve when I\'m exercising. I also use my sleeve when I travel in the plane and also when I feel too hot (which can be quite often, here in the tropics!) and feel that my arm is starting to get heavy.

I was once in Cambodia and my arm got really heavy and painful. I quickly wore my sleeve the rest of the trip and made sure I went to the pool every evening to cool off. I didn\'t swim, but just walked around the pool. When I got backk home and saw my physio, she said that my arm was fine and that I did the right thing by wearing my sleeve. So for anyone out there who has had this problem and can\'t seem to contact/see their bcn, you might want to try this in the meantime.

christiane
Member

Re: My arm

I wear a sleeve too! Hi Karen

I wear a compression sleeve too and the arm is a lot easier when I wear it . I wear the gauntlet type of sleeve. I asked the lymphodemic clinic if I could leave it off if I go out socially in an evening and she said I could - so I do leave it off then!

I also have lymphodema of the breast and you can\'t wear a sleeve there. Wish I could!

Good luck with it, Karen.

Christiane

delamere
Member

Re: My arm

wearing a sleeve Hi lepetitchat,
I\'m really feeling for you having to wear the sleeve every day and i know what you mean about it being an \"outside badge\". I was really worried about having to explain to people why i have to wear a sleeve,but i find that if i just say that it is to help my circulation, they are satisfied with the explanation and i don\'t have to go into my whole history.

Keep your chin up and best wishes
marg

Guest user
Not applicable

Re: My arm

lyphoedema I would get it checked in case. it was 2 years ago I thought I had and the lymph nurse said I was probably right. It is offical now as of yesterday i have lyphoedema. i am gutted and so angry and emotional. My husband is in Afghan for 6 months and I feel this is the final straw It is a long term condition and I have to wear a disgusting pressure sleeve every day .Cannot stop crying. I was not like this with the mastectomy,chemo or radio. What is going on?I feel I am being vain and pathetic. But it is an outside badge that I had cancer. I dont want everyone to know.
My symptoms were that myarm would get creased by seams on clothes and not go away.it feels heavy and uncomfortable.
it will not be a waste of time that is what they are there for.It is better to know for sure one way or the other

karen
Member

Re: My arm

Thanks girls for your replies.
am going to bcn tomorrow afternoon.....arm ok now though.....but she said to still go over.......its 2 years since i finished my treatment....although i do realise that lymphodema can occur at anytime....my job [ nursery nurse ] obviously involves lifting....work with 0-2\'s.....so perhaps that doesn\'t help either.

thanks again
karen x

delamere
Member

Re: My arm

Get it checked Hi Karen,
I hadn\'t had any problems with my arm until the hot weather we had in June, (remember that ?), it started feeling heavy and tight. then i went abroad in August and it got worse, was really painful and \"fat\". When i came back i contacted hospital and although they tell you to get it checked straight away, couldn\'t see the lymphodema nurse till end of september as she was so busy!
Advice and reassurance she was good though and i have a sleeve just to wear when i am exercising or doing housework ect. I have been using it a month and my arm is much better. Although i was worried about wearing it, i just tell people its to help my circulation, don\'t need to go into detail.
Please get it checked as soon as you can, it will be worth it.
Best wishes.
Marg

Guest user
Not applicable

Re: My arm

Fat arm Hi Karen.
Yes .....I had the same \"fat\" arm \"thin\" thing. Please get it sorted....my lymphodema took awhile to become full blown.....I got an infection from a rose horn while gardening and with in an hour my arm had become so painful and swollen I went to AanE. I did know that I suffered lymphodema until I was examined. It has degrees of \"fattness\". I wish I had gone sooner. Sorry..... I made it sound a bit scary.... it is bloody painful....so don\'t leave it ....hope it\'s good news.....Take care hugs an smiles xxxxx Onetit

Guest user
Not applicable

Re: My arm

hi karen

i too get tightness in my arm, mostly at the end of the day.
my arm was slightly swollen when measured and bcn got me a sleeve just in case, so far i\'ve not used it, i\'m due to start rads and she said it could get aggrevated, so i\'ll be keeping a close eye on it
hope yours turns out to be nothing to worry about
lol susanne xx

karen
Member

Re: My arm

My arm have been experiencing some \'\'tightness\' in upper arm of effected side over the past week, got my husband to measure it and there was no difference if anything \'\'bad\' arm measured less than the other.
this has happened before...it also tends to go down my outer chest wall as well.....it always goes off after a few days.
did ring and mention it to breast care nurse today [ not my usual one ],
she said that up to 20% of fluid can be retained before swelling appears and wants me to go and see her thursday.
arm is feeling better at moment......surely if this was indication of early lypmhodema it wouldn\'t only appear now and again.....certainly don\'t want to waste nurse time.....did think maybe it was just a case of overdoing it.
anyone had anything similar or have any advice?

karen x

karen
Member

My arm

My arm