can somebody tell me when it stops hurting

dbhadra said:

So sorry to hear you have been in pain for so long
What does your doctor say? Are you able to get the pain medication you need and is it working? If MIT they should be able to give you something else.

I had very little physical pain with my mastectomy and lymph node removal (lots of emotional pain though) however a dear friend of mine who just had reconstruction had pain for 6 weeks. So I guess it also depends on the type/extent of surgery .

Do talk to your doctor if you are nit getting relief.

Laura

butterflylvr said:

Oh my gosh you poor dear.
Oh my gosh you poor dear. You have been through so much in such a short time. I had a double mastectomy, a second surgery to remove damaged skin, tissue expanders placed and expanded over 7 weeks. Six and a half weeks of radiation all within 5 months too. Fortunately for me I am not experiencing the pain you are. I would have to think some of it is normal as your nerve endings are finally starting to repair themselves from the trauma they've been put through. But you pain sounds way too excessive. I hope you are keeping your doctors informed about each and every ache, you shouldn't have to suffer like it sounds like you are.

I wish I could be of more help to you, but I am sure within a couple more weeks some of that pain will subside. Gentle hugs...
Lorrie

cinnamonsmile said:

I had a bilateral mastectomy
I had a bilateral mastectomy and node dissection with no reconstruction or rads (rads may increase scar tissue adhesions I am told my the physical therapists). I was in TERRIBLE pain since the moment I woke up from surgery.If I remember, I think it was a couple weeks before I could get up unassisted, go to the bathroom unassisted,etc. My pain was NOT normal. I have post mastectomy pain syndrom or neuropathy from the surgery and scar tissue adhesions. It is awful! Seven months later I still have such pain I can not function properly.

I have pain and numbness across the chest area, armpits, the back of my upper arms,shoulders, and the side round the back a bit like near the bottom of the ribs. Even my drain hole scars hurt. Here is a list of my symptoms that I have had, some have gotten better(and they vary by area and degree): pain, prickly pain, dull pain, feeling like I got beat with a baseball bat pain, an awful tugging pain, pinching, pulling, skin hypersensitity to any type of touch or temperatures (sometimes when I am in the car and the air conditioning hits the back of my arm, it feels like I am being burned with a blow torch),electric shocks, numbness, I feel like there is a cactus under my arms when I shave and the hairs grow back.Thats all I can think of now. But it has severely limited my daily activities, like showering, hair washing, household chores etc
Last February my surgeon put me on gabapentin. I think she started out at 800 mg, then bumped me up to 1200 mg a day. I got a referral to the pain clinic in June but the insurance lady screwed up and so I didn't see a dr until July. The first PT I saw last Spring had little experience with mastectomy patients so it was useless.

On breastcancer.org, there is a forum call Surgery. Within that forum, there is a topic of discussion called Post mastectomy pain syndrome and there are many women talking about that type of pain. Here is a post I wrote there:
I got fed up and saw a medical internist. She referred me to the Pain Clinic and new physical therapists (I have two, they job share). I received a series of ganglion nerve block shots in the neck for the right side (the left didnt warrant it in my opinion) and cortisone shots for a spot on the right where the nerve block didnt work. I started out with two shots a week, then down to one. At my last appt. the dr. and I decided the pain was subsiding enough that I didnt need it. They did up my gabapentin to 1800 mg a day and added amitriptolyne 25 mg (it helps with pain and sleep...I was still waking up in pain even six months after the surgery). The nerves were and are taming down but I am also seeing an excellent psychologist who specializes in patients with chronic pain.

In addition to the neuropathy from the node dissection and BMX, I have scar tissue adhesions. I had no idea how tight it had gotten!! I see them twice a week for an hour. They massage and work out the scar tissue, work on nerve desensitivity thru massage as well, stretching, and some LIGHT strength training (I had one of the therapists GUNG HO on buffing up my weakened muscles and set me back considerably. After a discussion with my pain dr. we decided the MAIN goal is pain reduction. He asked if my strength is good enough for what I need to do and I said yes. So they were informed, by me, that I will not be doing anything so strenuous anymore. So we use the weight of my own arms for strength training).

I finally feel that I have a team of professionals that have their act together and I am getting some where. I still have residual pain left over (chest area, down the sides to where the ribs end, around the back like where a bra would be near the sides, and the back of the upper arms, and armpits).

I highly recommend a pain counselor (if they are good). I have had two sessions and its amazing.

I used to be able to do very little with my arms. Then I could do more and did more, but would be in severe pain by 6 pm (weird that that time was consistent). Now I have very good days and work like mad, and it takes one to three days to feel the pain. The counselor explained and showed a graph...Over exertion leads to pain, in my case my depression gets worse, then inactivity and more depression.. And the cycle continues. My current assignment is on days when I feel good, don't go gung-ho, scale back the activities to a medium range and pick a point of activities right below that. I am to do that, then add a little bit more, plateau, add a little bit more. He gave me some reading and what an eye opener.

I finally feel like there are people in charge of my pain, not the pain controlling them. I can not say I control my pain yet, but they tell me in time, I will.

I also love my one pt therapist who is into yoga...what a way to have pyschological tactics to deal with pain, too.

I still feel lost in the pain, but I have people pulling me through.

But what is odd, I am sort of scared of life without pain...It has only been a constant and controlling my life since January 2011, but wow, what a thought huh? It has become such a driving force in my life...

I really hope this helps anyone out there who is and was struggling like I am.

The medical internist sent me into the pain clinic with this thought though...maybe they can help me, maybe they can't but it's worth a try... at least if things didn't work out, I had the umbrella...My pain dr's were similar in their attitude..we will try this shot..if that doesn't work we try this approach and made it clear we would keep trying until all options were exhausted!!!

So my suggestion is to get help!!! Make your dr's listen. I was in the dark thinking that severe of pain when I got home from surgery was normal. Now I know, thanks to ladies on here and breastcancer.org that what I am experiencing is not normal!! It seems to be that in your gut you suspect something is not normal. I wish you the best and hope you find some relief!!

After having a few weeks of no nerve block shots, the pain had been creeping back. But my dr. is wonderful. All I have to do is call the clinic and they will give me shots! I guess we just have to figure out how often I need the shots so the roller coaster of pain I am in doesn't spike as bad.

cinnamonsmile said:

I had a bilateral mastectomy
I had a bilateral mastectomy and node dissection with no reconstruction or rads (rads may increase scar tissue adhesions I am told my the physical therapists). I was in TERRIBLE pain since the moment I woke up from surgery.If I remember, I think it was a couple weeks before I could get up unassisted, go to the bathroom unassisted,etc. My pain was NOT normal. I have post mastectomy pain syndrom or neuropathy from the surgery and scar tissue adhesions. It is awful! Seven months later I still have such pain I can not function properly.

I have pain and numbness across the chest area, armpits, the back of my upper arms,shoulders, and the side round the back a bit like near the bottom of the ribs. Even my drain hole scars hurt. Here is a list of my symptoms that I have had, some have gotten better(and they vary by area and degree): pain, prickly pain, dull pain, feeling like I got beat with a baseball bat pain, an awful tugging pain, pinching, pulling, skin hypersensitity to any type of touch or temperatures (sometimes when I am in the car and the air conditioning hits the back of my arm, it feels like I am being burned with a blow torch),electric shocks, numbness, I feel like there is a cactus under my arms when I shave and the hairs grow back.Thats all I can think of now. But it has severely limited my daily activities, like showering, hair washing, household chores etc
Last February my surgeon put me on gabapentin. I think she started out at 800 mg, then bumped me up to 1200 mg a day. I got a referral to the pain clinic in June but the insurance lady screwed up and so I didn't see a dr until July. The first PT I saw last Spring had little experience with mastectomy patients so it was useless.

On breastcancer.org, there is a forum call Surgery. Within that forum, there is a topic of discussion called Post mastectomy pain syndrome and there are many women talking about that type of pain. Here is a post I wrote there:
I got fed up and saw a medical internist. She referred me to the Pain Clinic and new physical therapists (I have two, they job share). I received a series of ganglion nerve block shots in the neck for the right side (the left didnt warrant it in my opinion) and cortisone shots for a spot on the right where the nerve block didnt work. I started out with two shots a week, then down to one. At my last appt. the dr. and I decided the pain was subsiding enough that I didnt need it. They did up my gabapentin to 1800 mg a day and added amitriptolyne 25 mg (it helps with pain and sleep...I was still waking up in pain even six months after the surgery). The nerves were and are taming down but I am also seeing an excellent psychologist who specializes in patients with chronic pain.

In addition to the neuropathy from the node dissection and BMX, I have scar tissue adhesions. I had no idea how tight it had gotten!! I see them twice a week for an hour. They massage and work out the scar tissue, work on nerve desensitivity thru massage as well, stretching, and some LIGHT strength training (I had one of the therapists GUNG HO on buffing up my weakened muscles and set me back considerably. After a discussion with my pain dr. we decided the MAIN goal is pain reduction. He asked if my strength is good enough for what I need to do and I said yes. So they were informed, by me, that I will not be doing anything so strenuous anymore. So we use the weight of my own arms for strength training).

I finally feel that I have a team of professionals that have their act together and I am getting some where. I still have residual pain left over (chest area, down the sides to where the ribs end, around the back like where a bra would be near the sides, and the back of the upper arms, and armpits).

I highly recommend a pain counselor (if they are good). I have had two sessions and its amazing.

I used to be able to do very little with my arms. Then I could do more and did more, but would be in severe pain by 6 pm (weird that that time was consistent). Now I have very good days and work like mad, and it takes one to three days to feel the pain. The counselor explained and showed a graph...Over exertion leads to pain, in my case my depression gets worse, then inactivity and more depression.. And the cycle continues. My current assignment is on days when I feel good, don't go gung-ho, scale back the activities to a medium range and pick a point of activities right below that. I am to do that, then add a little bit more, plateau, add a little bit more. He gave me some reading and what an eye opener.

I finally feel like there are people in charge of my pain, not the pain controlling them. I can not say I control my pain yet, but they tell me in time, I will.

I also love my one pt therapist who is into yoga...what a way to have pyschological tactics to deal with pain, too.

I still feel lost in the pain, but I have people pulling me through.

But what is odd, I am sort of scared of life without pain...It has only been a constant and controlling my life since January 2011, but wow, what a thought huh? It has become such a driving force in my life...

I really hope this helps anyone out there who is and was struggling like I am.

The medical internist sent me into the pain clinic with this thought though...maybe they can help me, maybe they can't but it's worth a try... at least if things didn't work out, I had the umbrella...My pain dr's were similar in their attitude..we will try this shot..if that doesn't work we try this approach and made it clear we would keep trying until all options were exhausted!!!

So my suggestion is to get help!!! Make your dr's listen. I was in the dark thinking that severe of pain when I got home from surgery was normal. Now I know, thanks to ladies on here and breastcancer.org that what I am experiencing is not normal!! It seems to be that in your gut you suspect something is not normal. I wish you the best and hope you find some relief!!

After having a few weeks of no nerve block shots, the pain had been creeping back. But my dr. is wonderful. All I have to do is call the clinic and they will give me shots! I guess we just have to figure out how often I need the shots so the roller coaster of pain I am in doesn't spike as bad.