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Arm paIn after node clearance

13 REPLIES 13
MrsLET
Member

Re: Arm paIn after node clearance

Have to say I had nerve pain until almost week 6, it’s horrid but there’s so much healing to do 😢 x
petra1962
Member

Re: Arm paIn after node clearance

Hello, thank you for this thread!  I’ve been looking for some information/help about the nerve pain.  I had WLE and sentinel node biopsy.  I thought I’d done really well after the surgery, but three or four days later the nerve pain kicked in.....  It’s so hard to describe nerve pain to someone who’s never experienced it.  As I was already on a low dose amitriptylene for back pain, I’ve spoken to my GP and increased the dose, so currently on 20mg at night, but still in lots of pain.  I’m going to talk to her again on Friday, so maybe I’ll ask if I can increase it again?  Or does it take a while for it to take effect?  Maybe I’ll ask her and see what she says.  This nerve pain is definitely the worst thing to cope with right now.  I have to have further breast surgery next week, but really hope I can get this nerve pain under control before then.

pastasmissus
Member

Re: Arm paIn after node clearance

normal painkillers don't work well on nerve pain (the burning feeling). Talk to your GP about amitriptyline or gabapentin. Amitriptyline makes you sleepy, so only take at night.

(I'm a GP)

shirleyvalentine
Member

Re: Arm paIn after node clearance

Hi - I had WLE and axillary clearance 9/8/18. First week post op I was surprised at how little I was in pain, I thought I was totally rockin it... I spoke with a BC nurse who warned me things would ‘start to wake up though’. Just over a week post surgery I developed a seroma and had to have it drained - that night post drain the nerve pain kicked in. It was so painful, I couldn’t stand even clothes near me, ended up wearing my husbands large baggy T-shirt’s and no covers touching me in bed at night. I’d read on other threads about it being described as a thousand baby bees under your skin or having bad sunburn and then rubbing it with sandpaper, this was a very accurate description! 

 

I’d already read about amitriptyline being a possible solution, as regular pain killers just don’t touch it. Thankfully, I already had some at home prescribed months ago for migraine prevention, (I had decided not to take them as a daily drug due to the potential side effects), but as it was the bank holiday and I was in so much pain (arm, underarm, breast and nipple) I just went for it, I think I would have taken anything! I started on 25mg, which made me feel I guess a bit tipsy and sleepy, so I took them at night. Once I managed to get hold of my GP post the B/H she prescribed Amitriptyline in 10mg doses up to 50mg. I got up to 30mg where my nerve pain was in check, side effects only lasted about  4 days, I didn’t drive or operate heavy machinery during those days 😉

 

I was on 30mg for 6 weeks and have this week only been on 10mg. I’ll stop them all together on Friday. They were my savior and for me worth the side effects. My skin is still slightly sensitive between the two scars, the back of my arm still tingles now and then and occasionally my nipple is a bit sore/sensitive, but I know it’ll all take time to settle down so I’m just going with it for now. 

 

I developed cording so have been to physio even though I regained excellent shoulder movement less than two weeks post surgery. I had my seroma drained 3 times in the end, but now I have a large lump of bruise/scar tissue under the arm (hard golf ball) which is delaying my radiation therapy so quite frustrated that I can’t move on yet.... next stop: review number 3 with the oncologist 23rd October. 

 

Good luck everyone with your recovery and healing. x 

 

Kitty03
Member

Re: Arm paIn after node clearance

Hi everyone, first time posting on the forum but thought I’d jump straight in on this thread to get myself started as this is definitely what I’m struggling most with after my operation. I had a lumpectomy and axillary clearance on September 14th and a follow up op on Friday as the margins weren’t clear and the nerve pain in my upper arm is still really bad!! The armpit tightness is slowly loosening and the excercises are becoming easier and less painful but the shooting pain/burning/tingling/numbness and general horrible sensations in my arm are still really bad. My BCN recommended trying an anti inflammatory gel on the area so got one with 5% ibuprofen and started using that yesterday and it did help a tiny bit so worth a try perhaps? X

Jay68
Community Champion

Re: Arm paIn after node clearance

the massaging isn't to relief the pain - but to help the lymph system with its drainage - again it's not necessarily massage but gentle stroking (in the correct direction, ie away from wrist and up and into chest) this helps prevent lymphodema and gets the lymph system working.  

 

Exercise is the best to help with mobility - the pain just takes time to improve...

MrsLET
Member

Re: Arm paIn after node clearance

Hi JacqB, fingers crossed it all goes, I still have really horrid ‘soreness’ under. Y armpit and down the back of my arm. Hurts to the gentlest of touches 😞 I’m trying to gently rub Bio oil in when I’m doing my scars in the hope it helps. The thought of massaging it makes me feel ill!!! Looks like I’d best focus on my exercises too!! Xx
JacqB
Member

Re: Arm paIn after node clearance

Thanks Sally

I do need to put more effort into the excercise, I simply cannot imagine hanging off a door frame! but I will work towards it! I’ve still got serious nerve pain but it is early days and I have been told I can ask for specific drugs but would really like to avoid them.

Jacq X
SallyG63
Member

Re: Arm paIn after node clearance

Hi Jacqb

I had my node clearance getting on for 6 months ago and still have complete numbness over a large area of arm, shoulder and down my back. I don't get pain as such but do sometimes still get a sensation of it raining on my shoulder and some general discomfort. I can't sleep on that side. Doing the exercises, including hanging onto the doorway and walking backwards and forwards to stretch the scarring out, does help regain the movement. I had physio to help with that and have pretty much got a full range of movement back in that arm but you have to carry on with the exercises daily or everything tightens up again I still do mine a couple of times every day to maintain the status quo. I find massage helps a little but mainly to the scar, nothing else.

JacqB
Member

Re: Arm paIn after node clearance

Thank you for responding ladies. I shall definitely try the massage along with a little patience and if that fails will ask for the drugs! 😊
Jacq x
pastasmissus
Member

Re: Arm paIn after node clearance

if severe, worth talking to your GP about painkillers specifically for nerve pain such as amitriptyline or gabapentin. Normal painkillers don't work well on nerve pain (the burning/shooting/electric shock type pain).

 

Jay68
Community Champion

Re: Arm paIn after node clearance

JacqB - just seen your message and I'm sorry you are experiencing pain.

I had a single MX and anc this time last year and know exactly how you're feeling. The inner arm pain you are experiencing is the nerve damage caused by the operation. It does certainly get better.

The length of time depends very much on each individual.

It is important to do your arm exercises at least 3 times a day.

Very gentle stroking exercises of the whole affected arm from wrist up to elbow and from elbow to armpit and from there across the chest will help - use something like E45 cream whilst doing it.

You will get through this - the pain will get better - it does however take time.

I still get odd tingles and aches in my arm and armpit - it's something I've learnt to live with and just grateful to be here still....

Take care my lovely x
Xela
Member

Re: Arm paIn after node clearance

Jacq sorry hear you’re still suffering. Haven’t got the answers just wanted to give you a hug. But maybe the nurses on here can give some advice xxxx
JacqB
Member

Arm paIn after node clearance

Hello ladies
I’m suffering terribly with nerve pain two weeks post axilary node clearance. My inner arm is on fire and none of my pain killers touch it. Can anyone tell me if they’ve had this and how long it lasted.
TIA Jacq x