I just wondered whether there was anyone with a diagnosis of M.E. otherwise known as Chronic Fatigue who has undergone a mastectomy?
I have M.E. with its usual weakness of muscles, fatigue, poor concentration, poor short term memory etc and I have adapted my life to live with it. The main implication for me is that I have had to give up my profession as a full time teacher but you just have to adapt and keep your life simple!
However, in August 2009 I was dx with BC and after 2 lumpectomies and a mastectomy in February 2010 I am trying to recover…
Obviously surgery affects everyone differently but I am plagued with painful muscles all over my trunk,right down to my waist!It is far worse nearer the wound and my arm just dangles lifeless by my side so I am very concerned.
Post operative trauma may be responsible but I’m wondering whether anyone with M.E. has been through similar weakness after a mx.
If so do you have any advice?
I do the exercises (often with pain relief) but I do persevere and want to do everything I can to recover well before imminent radiotherapy.
Hope somneone out there can identify with my situation.
Thanks from Welsh girl.
Hiya - hope some ladies out there can help you W. Four weeks post op from mx now and i think the pain i have now is from the expander implant and no longer post op trauma, I would say that’s probably been the case for a week or so - don’t know whether that’s remotely relevant or not but just saying i think i experienced the post op stuff for about 3 weeks. I hope someone can advise on the ME slant.
Lynnx
Saw surgeon yesterday for results who is pleased with my wound/operation recovery but cannot find sufficient reasons why my arm is so weak and just hangs by my side…
He asked what does my M.E. consultant say but as everyone knows who has this condition, there are no specialists if you leave London where I used to live…
So I’m still hoping to find another M.E. sufferer on this site who could share their symptoms after surgery or in my case, mastectomy.
Welsh girl
Thanks Lynn for your interest. Greatly appreciated. You always seem to be around when I’m disappearing down the toilet…
Read about your concerns too and am really sorry you’re going through this trauma. I hope you find the strength to get through this next stage. You sound a real fighter and I know you’re going to give it your best attack. Remember to support yourself as well as others as you give so much on this site. As I said before you are a star!
Hello, I am not in exactly your situation but I can relate as I have been diagnosed by my GP with Chronic Fatigue SINCE the surgery. I had a radical mastectomy on the left nearly 2 years ago. Before my diagnosis of BC I had bouts of fatigue but not full M.E. I recovered well from the operation. The physio exercises were painful but worthwhile. I decided not to have reconstruction as I wanted to minimise the recovery time etc. I also decided not to have chemo for the same reason, and because for my circumstances (40 yr old, triple neg BC) the chemo apparently wasn’t going to make too much difference to my chances. Even so, 2 years on I am still fatigued and have had to radically simplify my life. Am having a CT scan in a couple of weeks just to make sure the fatigue is not anything worse.
I’m so sorry you are having all this pain, as if you hadn’t enough to cope with the M.E.
Very best wishes with it all.
Oriana
I’m really sorry to hear you have M.E. too.
It is so debilitating isn’t it? I had learned to pace myself and do everything in small efforts and then sit down a bit in between with a sit down activity to try and help my need for achievements!
But now after recovering from my mx 5 weeks ago I have a dead right arm which when used becomes intolerable. It feels as if my muscles have been taken out of the upper section.
GP and surgeon disagree the cause which isn’t helpful but today my nurse was going to speak to my GP to see if a referral for physio could be put into place. Fingers crossed something will come from this…
BC recovery is difficult without the extra issues of disability.
I can’t find any information about anaesthetics affecting M.E. and wonder whether this may be affecting my recovery.
Thank you so much for responding owilmott.
As you state the simplified life is our mainstay! Do hope the CT scan brings no more unpleasant news. Do let me know how it goes.
I’ll be thinking of you,
Welsh girl
It’s now 12 weeks since my mx in February and I finally got to see my oncologist for the first time! Such a long wait!
Had various complications with pain caused through cording in my chest area as well as a dead arm since surgery, so I’ve been having massage and physio recently as well as relying on painkillers.
Wanted to start radiotherapy asap as this waiting trying to recover is a soul-less time. It is like being in a limbo state where nothing seems to move forward…
Eager to meet oncologist and had loads of questions about rads ready when she declared that I was not well enough to start rads. I have M.E. and it’s difficult to know which pain belongs to which cause but I knew my general health was deteriorating…
Absolutely stunned by news and wondered whether anyone else has been in this position?
Bad Luck Welshgirl. it’s so disappointing when you are looking for progress and moving on to the next stage of treatment, and you did so well with your list of questions too!
Has anyone suggested checking your nerves… i don’t mean your anxiety etc We would all be hopping mad what you’ve been through, I mean actual nerve conduction… could they have been damaged during surgery. Lots of us get temporary nerve damage during under-arm surgery, stretching stuff round under the skin to get to those nodes and all that, that’s why we get those wierd prickly feelings and areas of numbnesses, only mostly supposed to be temporary, mine still getting better after 3months.
There’s a thing like a variation on a TENS machine they can use, called a nerve stimulator, that sends an electrical impulse where they think the nerve is and the arm (or whatever) is meant to twitch in response, they use them when they are looking for the exact spot to inject a regional anaesthetic. Not sure if it comes under anaesthetic specialty or neurology. Thinking about it now, i’m also not sure how they would know they were in the right place, if they didn’t get a twitch, hmmmm.
When you say dead arm, is there feeling from your fingertips, does your hand move at all? Is there a line on your skin you can feel up to but not beyond? Are you having to type onehanded? The chest tightness and cording do make it very hard to move your upper arm, but I would think it should in general be getting better not worse. Have you been in touch with surgeon since s/he tried to fob you off on ME specialty?
About the ME link, can you ask GP or maybe do it yourself, telephone your old consultant in London, maybe this is a FAQ if you ask the right person. Is there anything like an ME soc website/helpline? Hope you find the help you need soon.