Pain management with lymphodema

Hi , I have lymphodema and I’m struggling with the pain in my elbow joint … it’s debilitating , I’m 2 years finished treatment , full auxiliary clearance chemo and radiotherapy, just was wondering if any other lady had this problem and what is the best pain management. ? Ive been put to pillar to post and it’s still not sorted . Thank you Deborah x

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Hello
I had masectomy and axillary clearance three years ago and have developed lymphedema recently.
Sometimes my elbow does becomes painful, i manage to self-massage ( i found videos on youtube) and found i can get the pain to go away. Sometimes i massage for an hour if it gets very congested and swollen. I also bought a mobyderm autofit arm bandage, it is very easy to put on and take off, and i do some simple stretching and yoga exercises with it on. I try to self massage and do some excercises every morning. I never manage to get the swelling completely down, but manage to stop it bothering me.
It is only the beginning and i am still learning how to deal with it.
I have a massage with a physical therapist once a week but find that isn’t enough.

I also try to cut out alcohol, i find i can’t tolerate it any more.I wonder if it is related to the lymphodema. I try to drink more water during the day, instead of just tea and coffee.

Hope this helps

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I had chemotherapy radiotherapy,10 lymph nodes removed 23 yrs ago .
We have managed with light massage moving the fluid.
I get a very heavy aching arm.
I have started to get elbow pain
Thinking I will have to speak with someone medical.
Hope you get your self sorted

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Thank you ladies , I do massage faithfully but I do find that say when my period is due which I don’t have now the pain is absolutely excruciating and I’m in tears but it does subside , the elbow joint is the worst , I’m at the consultant now on Thursday just to get a second opinion … it’s just a crazy journey we are all on , love to you all and thank you for your reply’s x

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Hi Debs,
Have you found any relief? I hope so.
I have recently been diagnosed with lymphoedema and found it difficult to get my head round.
I find that when mine is bad it does hurt although a friend that I know who has it never gets pain with it.
Katie x

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Hi Katie , aww I know some people are very lucky they have no pain but it can happen that some ladies can get it and it’s chronic !! I went to my consultant and she was so empathetic and understood that this is draining this pain I’m suffering, I’ve been scanned and bloods all done but it’s all been put down to nerve endings just playing havoc in my arm .
Katie , I’m
So sorry you are going through this too have you been given me a compression sleeve? gabopentin is great for the nerve pain and works so ask for that too if you can xx

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I only get pain with prolonged activity like hill walking it’s more a dull ache . The affected arm is also weak and swells in heat . I’m lucky as it’s mild have compression sleeve but makes little difference tbh

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Yes I’m just waiting for the sleeve and glove.

Having a better day today, mentally.

I’ve been told I need to give myself time to process everything. Patience is not my strongest quality but I am trying.

Hope you are feeling ok today.

Katie x

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Katie , it takes so long to process things so please don’t be sore on yourself… give your wee body time to adjust , mentally I think it’s an ongoing task and learning about the new you , its not easy at all … I’m a year passed since my treatment finished and I can honestly tell you the bad days are as traumatic as the very day you were told . I am a hairdresser and I’ve had to give up my business as now I cannot stand and do colours etc because of the chronic pain in my arm …cancer really does take so much from us .im
Glad you had a good day today and felt stronger xx

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Hi Susan , it’s ongoing nag pain isn’t it but I do think it’s just having to adjust and accepting of it but here it takes a while , that’s great you are out and about

Hi all,

I just wanted to see if anyone else has had major problems with getting their prescribed sleeve or glove? I have had 2 weeks of constant conversations with my GP surgery and pharmacist and it’s 1 problem after another. I feel like I’m going in circles.

I know I will get there and luckily I am managing with massage and light movement, provided I don’t do any very energetic stuff.

Thanks all,
Katie

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Hi Katie , I had a few trial and errors trying to get me sorted , they gave me a glove first then a sleeve which nearly stopped the blood flow in my arm but it just takes a while to get the right thing , I ended up with one that comes over both arms which is much better . Your lymphodema nurse should help you x

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Sorry just seen this . The arm feels damaged which basically it is . Mostly no pain but mobility reduced and hurts as I said when I walk long periods but I just carry on …

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I’m still under specialist care of cancer hospital they sort the sleeves etc . It’s a bit triggering going back but at least they know what they are doing

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Thanks all.

I am sure it will be trial and error for me too. My issues are that the Dr wrote a written prescription which was lost in the post. Then the pharmacist said that the pip code for my sleeve on the prescription doesn’t match what the letter from the lymphoedema clinic says. So now I’ll have to go back to the drs on Monday to see what they say this time.

I have been told that they are difficult to prescribe and for pharmacy to order.

All very strange, but I am still experimenting with self management.

Hope you’re all enjoying the lovely weather this weekend.

Katie x