Arm pain after lymph node removal and mastectomy

[awmc]

I am 11 days into ALNC and in absolute agony. Have had three drainage at the breast clinic and one leakage during the night.  Very painful, underarm, doing my best to keep mobile but soreness with each step.  Was prescribed Amtriptyline and started taking it this evening to see if there is some relief .....  

Reading other posts I see I am not alone in my suffering.  I realise the pain I feel is because of nerves that were damaged during surgery.  Ouch! Ouch! Ouch!   Any other suggestions?  A pain numbing skin cream perhaps?  Anything?

speedy recovery all!

[Juliemilward]

 What helped you ? I am 5 weeks on and climbing the Walls.  Waiting for an appointment at breast care unit and for my gp to ring me back. Having other major problems as well. Hoping you are getting on well 

[Bottyboo]

Hi ladies. I had a therapeutic mammoplasty with full node clearance in February. I also happen to take amytriptilene for trigeminal neuralgia 10mg at night. I have had no issues with my arm apart from the numbness although now even that is so much better. I thought I was just one of the lucky ones which is just as well as I have had horrendous issues with wound healing and am still undergoing treatment for that as well as chemo. However I am now convinced that the amytriptilene has helped enormously. From speaking to ladies who have had problems this is what their GP has prescried so I'm sure it helped prevent in my case. Some ladies moan about the woozy feeling the next morning but I take mine at 6 pm around teatime and this helps. It is primarily for nerve pain but also helps with sleep. It is also very safe with no addiction issues and once you find the dose that works you don't get used to it and have to increase it. You can also just stop it with no withdrawal symptoms. Maybe worth a try xxx

[lisa24]

Hi I'm exactly two weeks on from mastectomy and auxiliary cleareance and I'm struggling with pain I've had naproxin today but doesn't help much at all but I'm struggling do the excersises as much as I should but then there's the fear of overdoing it I'm seeing my consultant and bcn on Thursday see what they think it's rotten isn't it hun x

[samjs]

Jmeg,
Obviously your mum is really worried; imagine the situation being the other way round and it being being you and your daughter. I find myself in both situations; mum was diagnosed in March then I was diagnosed in April. She feels guilty I have it even though the consultant assured her it was unlikely genetic as she is older. However even if she hadn't got it she would have prefered to have got it than me having it. Just talk to her and let her express how she feels. Also how you feel may change dramatically as you go through the different stages.

Good luck
Sam xx

[jenanne]

The Haven website has excellent info on breast cancer and there is info and videos on arm/chest swelling, lymphoedema:-
Go to:- http://www.thehaven.org.uk/how-we-can-help-you/lymphoedema

[Nextstep]

Jmeg,
With regards to your mum don't forget that you are still her daughter that she loves, and most mums would rather take on the worst pain themselves than see their child suffer. That doesn't go away at any point from what I see. My mum has been so anxious about me even though she has her own health concerns. I think the best thing you can do is have regular contact so she can see you are really ok and not just saying you are and allow her to help you in whatever way she can, I think that will make her feel better. Mind you my mum still thinks I am putting on a brave face and not telling her the whole truth!

[samjs]

Hi Helm and everyone else, I had WLE and SNB last Wednesday and I am having similar difficulties with my arm. After the first two days I had almost full movement and actually think I got quite complacent and over used it. Anyway by yesterday afternoon I felt like i was carrying the heaviest of weights, my whole arm ached from shoulder all the way down to my fingers, in the end I went bed and took pain killers. Woke at 4am this morning and had to take more pain killers and couldn't get back to sleep for this dull heavy aching. Trying to lay off using it as much today but doing the exercises.

Sam x

[torchy_Kathlee]

Hi Its 10 months since lymph node clearance, I still have soreness and sore breast not all the time, I try and stretch as much as possible and it helps, but sometimes it makes the area puffy, then it goes down, still get pangs from breast but not hardly so often, I feel that they did get worse on the anatrozole, however still plodding keeping stretching.
torchy Kathleen

[Jo_BCC]

Hi jmeg,

Welcome to the forums. Your mum might benefit from speaking to one of our helpline team, they're here to support the whole family if necessary. Calls to the helpline are free 0808 800 6000 lines are open Mon-Fri 9-5 and Sat 10-2.

Take care,

Jo, Facilitator

[jmeg]

hi all i am new to all this had WL and all lymph nodes taken last tuesday no pain from WL site but my arm is driving me mad,strange sensattions feel like i ve got sweat running down arm but when i wipe bone dry ultra sensetive feeling cant seem to wear anything with sleeves,got a fair amount of movement but then i get like cramping pain and very odd muscle twitch thing going on is this all normal,
My other problem maybe wrong thread to put on but my mother is in pieces about my cancer,me and my daughter (21yrs) are laughing and joking about it as much as we can but mums finding it hard any tips to get her just to accept its happening and for her to treat me as normal.

[Helm]

Hi, thank you everyone for your comments and support:) It is good to know that the experience is 'normal' although it's not pleasant, and I wouldn't wish it on anyone. I've also tried massaging my arm, which I think does help to a degree, and switched to short/loose sleeves. That really makes a difference. Yes, progress is slow and it's hard sometimes being patient, but I have to keep in mind that these things take time. My surgeon said today that if I don't see any improvement soon I should ring the breast clinic to see about seeing a pysiotherapist - so it's nice to know there is that option if I need it.
I've found also that wearing a bra, even though it's my usual size and feels comfortable when I put it on, it really overstimulates my nerves (I think that's what's happening) - my skin feels so sore and bruised. So I'll be sorting that out tomorrow. All these little things you learn as you go along:)
I wish you all a steady and complete recovery!:)

[Melrose15]

Hi Helm. You have my sympathies! I too had a mx and anc 7 weeks ago. It's been a very slow healing process with each day bringing a new ache, sensation and worry but it does get easier, promise 🙂 Unfortunately I now have cording and am waiting for physio but no longer have the ultra sensitive burning feeling in my arm so not all bad 😉
In the early days I found a vest top with a loose shirt over the top more comfortable to wear. Also avoiding tops with seams that rub against your arm. The burning and sore feeling is strange isn't it?!. Someone suggested gently brushing your arm with your hand or soft fabric helps. It takes some getting used to but improves. I slept with a soft v shaped pillow slightly propped up for ages. Now I can sleep on my good side and my mx side with the pillow tucked under for support. You may find keeping your arm raised when resting or watching tv more comfortable too, I had another firmer v pillow I used on my lap which was perfect. When you're sitting try stretching your arm out to your fingertips in all directions or putting your hand behind your head and leaning to the opposite side. It does feel uncomfortable but as everyone has said keep up the exercises and it does get easier. I remember crying because I couldn't do the walking your fingers up the wall exercise! Finally for me massaging my chest and arm twice a day with cream helped. I got a huge pump action E45 from my doctors along with some strong painkillers for at night. (Free!)
In weeks to come you'll look back and see how far you've come. It's hard because we don't know what's 'normal'. I'm very friendly with my bcn's now as I'm always on the phone asking questions 😉
Good luck with the rest of your treatment, take it easy and each day as it comes.
Hugs Emma x

[Karis]

My sympathies - this is so miserable and sore. However, as regards the early post-op exercises, I would proceed gently and be a bit cautious about overdoing it. Things are still healing at an early stage. The helpline is very useful as you can really talk things over, and decide whether you need to go back to the breast care team or your doctor. Best wishes K x

[mggdggn@yahoo.co.uk]

Just a little tip that might help, I bought a stress ball to pump when sitting watching tv or laying in bed before sleep... The stretching really helped take the strain out of the arm, and I never had cording or lymphodema. I got cording in arm with chemo and again this really helped... Pain at time was hard going but refused to take pain killers... so would recommend giving this a try....
Good luck
Maggie x

[catzooo]

Hi Helm. I had Mx and lymph node clearance on 25 march. Tried all sorts of pain killers from my GP none of which really work as its kind of nerve pain rather than aches. Sensitive irritated feeling And clothes rubbing on skin hurts. I found some cheap crop tops in Primark which are comfy to wear under a tshirt and stop the clothes rub.
i found that exercising the arm helps. It hurts whils you stretch it but afterwards does feel much better. I have been seeing a physiotherapist 3 x week as I was unable to lift my arm above my head into the position needed for radiotherapy. got cording too - as I extend my arm you can see it from my wrist to the inside of my elbow. Then my hand goes numb if I extend arm too far.
Got to say that after 2 months it is still far off feeling normal. I have a Harley Davidson waiting for me in the garage. But no chance of riding that for a while yet. It vibrates way too much.
After 2 weeks you are still healing. It does get better, just far slower than what you expect. Keep on with the exercises.

[spookymoo]

Hi Helm I hope you don't mind me commenting on your post. I had full lymph node clearance in February this year when I had my WLE and had to go back in May for a mastectomy (left side) and an immediate DIEP recon. I am sorry to say I have had problems with my underarm sicne February - cording and pain and discomfort - even doing the exercises (although I have been a bit lazy recently!) and the clearance has been more uncomfortable than everything else! I understand it can take months for full range of movement to come back, if at all, unfortunately. I am waiting for a referral to the lymphodema clinic. (During my DIEP my flap failed twice and I had to have a vein graft from my left arm - which is the arm I had full clearance from - and I have a huge horrible scar running from my shoulder to my elbow!) I was mad as hell when they did this as more worried about gettting lymphodema than the flap failing - so waiting for a referral as a preventative measure. I am also trying to get booked on a "pink Ribbon "pilates course run by the Fountain Centre at my loal hospital which I hope might help. I haven't really had any good ideas from anyone on how to limit the discomfort and haven't found painkillers work either. It's poo, isn't it? Sorry i can't be of any help. But just wanted you to know that your are not alone in feeling rubbish. Not that that helps much. Sorry x Em x

[Helm]

I had a single mastectomy two weeks ago and full lymph node clearance on the same side, and am wondering what other people's experiences are. I've had cording, discomfort and my range of arm movement is stil very limited. I am trying to perservere with exercises.
I've read in the booklets that were given to me by the breast care nurses that the cording and discomfort in the arm after lymph nodes are removedcan happen, so I guess it's pretty normal. But it's so frustrating! I think part of me is concerned that it'll be a long while till I have 100% movement back, as it's slow progress. Painkillers don't really help either, I've tried paracetamol and Ibuprofen, and wear loose clothing on the arm otherwise it can get pretty uncomfortable.
I had thought that the discomfort following a mastectomy would be related to the breast, but seems like that's not a problem, but the lymph node removal is.
Does anyone have any suggestions or experiences to share regarding recovery on this?