Just diagnosed with lymphoedema

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Hi all - please help, I was diagnosed with lymphoedema in my right arm last week and now experiencing severe pain in wrist, my elbow is swollen and feels ‘like jelly’. I was at the hospital today for my herceptin and the nurse said I looked ‘peeky’ I told her I was really really tired the past week so she checked my blood. She told me that there is something showing up regarding vitamin D so then had x-rays taken, won’t get the results of those till next week but have to go thru the weekend worrying. Has anyone experienced anything like this or am I just being paranoid. Please please let me know.

Thanks

Jean

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Hi Tina

I’m sorry to read you’re having such a tough time at the moment. Whilst you wait for the other forum users to reply with their experiences and advice you may find it useful to have a look at the BCC booklet ‘living with lymphoedema’ as it includes information on how it can be treated and ways that the symptoms can be managed. To read this just follow this link:-
breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTemplate/PublicationDisplay/publicationId/16/

Also if you need to talk things through or just have some extra support please give the BCC helpline a call as here you can talk with a trained member of staff who will offer you a listening ear as well as information if required. The number is 0808 800 6000 and the lines are open Monday to Friday 9 to 5 and Saturday 9 to 2pm.

I hope this is helpful.

Best wishes Sam, Facilitator

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i have lyphodema and it is a most miserable thing,i go to see lyphodema drainage specilist and it really do work,the surgon who treated my br cancer adviced it,i had it every week for a few months have gone 6 months and started again,it is difficult to get it on nhs but not impossible talk to the dr or nurse.
if you get little skin brush gently stroke upwards of the other arm thats ok then the bad arm graduarly coming across the chest going upwards movement all the time,the idea is body will compensate and drainage will go to unaffected side,good luck i hope you get reliefe soon

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i have lyphodema and it is a most miserable thing,i go to see lyphodema drainage specilist and it really do work,the surgon who treated my br cancer adviced it,i had it every week for a few months have gone 6 months and started again,it is difficult to get it on nhs but not impossible talk to the dr or nurse.
if you get little skin brush gently stroke upwards of the other arm thats ok then the bad arm graduarly coming across the chest going upwards movement all the time,the idea is body will compensate and drainage will go to unaffected side,good luck i hope you get reliefe soon