Pain weeks after mastectomy

[Missbabs]

Thanks ReeseeB but can't see any links. Could you send them again.

[ReeseeB]

Hello fellow survivors. I would like to invite women with Post Breast Therapy Pain Syndrome (including: chronic chest wall pain, scar pain, arm pain, and/or neuropathy following breast surgery and/or radiation) to join the Facebook Post Breast Therapy Pain Syndrome

You are not alone. We have over 300 women in our group. All are welcome

Here are some informational links regarding PBTPS:


Thank you : )

[Missbabs]

They are heavy but I am 38F and felt much better because I feel more balanced now & it doesn't move about. It also presses on my chest which also seems to help the wooden feeling I have. It looks much better too! Good luck.

[strawb]

Hi Missbabs
That's fab news, I'm so glad you've got the help you needed. I'm still waiting for my chicken fillet appointment, are they as heavy as they say they are?

[Missbabs]

Hi. Just thought I would thank you all for your support over the last few months. I am so much better now. The physio has worked wonders with the cording in my arm and is now working on the wooden feeling in my chest, and it is working. To anyone having problems please remember to do the exercises even though they hurt. I never thought the burning pain would stop but I have been on Amitriptyline for about 5 weeks now and it has really helped. Got my proper prosthesis last week and feel much better. I am determined now to get on with my life to the full and enjoy every minute. Lots of love. XXX

[Saved]

I am 6 weeks post right masectomy. I have the wooden board feeling and I discovered a way to get relief. I use my Palm to press down on the chest and I get instant relief. I do this quite often during the day. I still have a seroma and my muscle is being stretched by my expander so I don't know if that is why it is working. I Drained my seroma 5 times and stopped so my right breast is actually now bigger 38d as against 38c for the left. I often joke that my softie should now be used on the breast without surgery

[Grammad]

I too have to do my stretching exercises for my arm's mobility everyday. I am 5 months out from my first surgery for double mastectomies and reconstruction, It's a very long process, as my Plastic Surgeon say's, it's not a sprint it's a long distant run! I'd rather have a sprint. 

[Grammad]

I will be going in for surgery on Monday Jan 12 to have the expander put back in. Hope this time it goes well and no infection and the nerve pain doesn't come back with a vengengence! I am so looking forward to seeing my breasts grow! 

Hope all is well with all of you and things are going better for all your healing needs. God Bless!

[Missbabs]

Hi. Went to physio again and she is working wonders on my arm and my chest also feels like it is starting to move a bit to. If I don't do the exercises regularly a few times a day though, it doesn't half stiffen up again. She still says that 8 weeks is early days yet. It really helps to hear from you all though because I am sure, even though our families and friends love us, they get a bit fed up hearing about it and to be fair if you haven't experienced it you have no idea how horrible it feels!!!!! Hugs to you all. X

[strawb]

Mine is beginning to calm down now and I'm sure its down to the Amytriptline. I hope you get some help with it because it does get to you for sure. We're all doing really well considering what we've had done and sometimes I think we all have to remind each other that we've been through a pretty heavy surgical procedure and it will take time to heal. Sending a hug x

[strawb]

Hi Brewster, glad you've got good arm movement now. Mine is improving too, thanks to the exercises (some days I really have to force myself to do them though). Did you get the swelling sorted out? I've got it too, under one arm. I found that conventional painkillers didn't help me either so I'm grateful for the Amytriptiline, its been brilliant. Good luck with it hon x

[strawb]

Hi Kentstar, I get this too. I'm counting on it coming in very useful during hot weather, like an instant coolant 😄

[Rattles]

Hello missbabs, don't feel inadequate if mindfulness doesn't help. You aren't a baby - depending on surgery type, size etc, nerves that are damaged will vary. Go and discuss pain with GP or ring Helpline, Rattles x

[Missbabs]

How can I get help with that? I really try to ignore it & be positive but find it really hard, well actually, to be truthful impossible. I try to appear ok and it must be working because so many people say how well I look but when I'm on my own it's a different story. I am not a wimp cos have had other episodes of pain in my life but this is so different. Thanks for your support and I send mine back to everyone. X

[drdspg]

Hi missbabs, your GP is right in saying that it is usually 4 weeks to really get some change. You may however notice some small changes earlier than this. Without wanting to harp on about it- mindfulness really does work. Really hoping you get the pain control sorted.

[Kentstar]

One of the weirdest sensations for me is when I have a cold drink and I feel as if the water is trickling down my chest. I suspect that is nerve damage. I am just over 4 weeks post op and I think I am surprised how much the surgery has affected me as I have had very little pain, the discomfort especially the sunburn feeling is worse some days than another's. I just want to feel normal and able to do everyday things again! Hopefully your pain can be controlled, living with constant pain must be awful, sending you positive vibes x

[Brewster]

I am 5 weeks post bilateral mastectomy. The wooden board feeling you describe is a perfect analogy and resonates with me.,it's pretty uncomfortable,isn't it? I have a reasonable range of arm movement now but also feel,like I have a vice around my chest, nerves jangling .,I have stopped taking pain killers as they don't work and just trying to put up with it and hoping it will pass xx

[Missbabs]

Thanks so much for all your replies. The physio is working well on the cording in my arm but I have started talking Amitriptyline but doc says could be 4 weeks or more before it kicks in. The burning is still really bad in my arm and chest & the wooden block feeling is horrible. I am trying to be patient but it does get to you after a while doesn't it? You start thinking you will always be the same. It must be terrible when you have it on both sides! I will try not having salt and see if it helps in fact I would try anything at the moment!!!!!!! A good new year to you all. X

[drdspg]

Basically, nerves get sliced during surgery so pain is not surprising. Amitryptiline is excellent for treating pain. It does need to be prescribed by someone who is aware of your cardiac history. Amitryptiline is also used as an antidepressant so can help with sleep, anxiety and low mood. Chronic pain is hard to live with so certainly do consider amitryptiline. Can I also suggest that you ask your GP or oncologist if there any qualified mindfulness therapists available. This is a well researched therapy and would be very helpful for you. I get a more amusing side effect of all the nerve snipping- I get phantom itchy nipples!! They itch terribly at times even though they are no longer there!

[strawb]

Hi Grammad

I was interested to read your point about salty foods and thought back to when my chest tightness was at its worst and it started on Christmas Eve when I had a lot of salty snacks at a family party.  I don't use salt at all, either in or on my food and your post has suddenly made me realise that it could well have been that. 

Hugs L x

[Grammad]

I was diagnosed with BRCA2 five years ago. After watching my sister and an Aunt, also BRCA2 go through breast cancer, chemo, double mastectomies and reconstruction I also was diagnosed with breast cancer of my right breast. Thankfully I didn't need to do chemo. On August 12,2014 I had double mastectomies and expanders placed at the time of surgery. During that time I was dealing with nerve pain on my chest. So bad that I was exhausted and crying by the end of the day. Finally my Dr. prescribed Gabepentin to help heal the nerve damage from surgery. That did not help ease the pain at all so he prescribed Oxycodone to help ease the pain while the nerves were healing. IBP and Tylenol did not even touch the pain. Eventually the pain started to subside. Now for the new part. In October I had to have the left expander removed because of an infection that would not clear up with antiobiotics. After that surgery I noticed when I would eat salty foods my chest would feel tight and swollen even under my arm pit area. Which would cause the nerve pain to return. Has anyone else had this problem with salty foods? 

Hope you all have a healthy New Year!

[strawb]

Hi Missbabs

Me too! You're not alone, I promise.

I had a bi lateral mastectomy and 4 lymph nodes taken on 1st December (quite a start to advent :D) and you've perfectly described the feeling I have in my chest - it is just like a wooden board.  Sometimes its like a wooden bra that's too small but that passes thankfully.  I was getting some horrible burning pain, like I'd been sunburnt on the inside if that makes sense?  I already take Amitryptiline for sciatica - 20mg every night (cause they can make you a bit drowsy) and my GP suggested taking 40mg to help with all the post surgery pain and I have to say its lessened a lot (they do take a while to kick in, a few days).  There are two other drugs that can help the nerves stop firing pain signals - Gabapentin and Pregabalin but I don't know if they're compatible with any of the heart meds you may be taking?  Its definitely worth exploring if you are able to because, as I say, it has helped me a lot. 

I also have cording despite doing the exercises.  It started a few days ago and it runs right down beyond my elbow but I'm working on stretching it every day which is helping but I'll be having rads this year after chemo so I need to get the arm working really well.  As if we don't have enough to deal with, there are all these other post surgery problems to deal with aren't there?

Sending a hug to you, L xxx

[Susan8574]

I'm on amittyptiline and it's settled a bit, started on 10mg then did 20mg on a night, seems to be slightly better but not sure if it's down to time it meds, bur it gets u down .

[Rattles]

Hello misbabs!

Me!!!!

I posted in another thread about this topic but had no replies. I am taking pregabalin which has worked for me, though it has unpleasant side-effects. The plan is to take it for 8 weeks, then slowly reduce the dosage with the aim of dampening down the pain in the nerve endings. My situation is a bit different because I have had multiple surgeries and I'm two years on from the last breast surgery, its early days for you and I'm sure your pain will improve.

I have also been using local an aesthetic patches which you apply to treat the local area.

I understand that amytriptiline and another drug beginning with a g are also used.

I also used a feather to gently touch the area. My physio suggested this. Instinctively, you avoid it S its painful but it calms the nerve-endings. Not instantly but over time.

I'm sorry you are dealing with this but would love to hear how you progress and am happy to answer any questions.

Rattles

[Kentstar]

Hi, I haven't had nerve pain that I can't cope with as mine passes quickly. However, I have seen forum posts whilst researching where people have reported amitryptiline worked for them. I am sending positive thoughts and hope you manage to control the pain x

[Missbabs]

Can anyone help. I had a mastectomy and 11 lymph nodes removed on 12 th November 2014. Straight away after surgery I had numbness from my elbow up under my arm. Went through the usual pain with the drains etc then started with 'cording' in my arm. I am seeing the physio every week now and she is working wonders with that but the burning in my chest and arm are getting worse, not better. Painkillers are not working and I am feeling sick all the time with the pain and the 'wooden board' feeling in my chest. My physio said I need a drug to target nerve pain and wondered if anyone had any experience of Amitryptiline which she has suggested. I am a bit concerned as I already take medication for heart disease. Please, please has anyone else had these awful nerve pains?
W