Today I just feel really down with Lymphedema

Earth_Sky

Today I am just so tired of the flare ups with Lymphedema. I am a strong woman & can deal with pain pretty good, but today I just feel like crying in the corner. I have tightness in my arm, down the side of my chest wall on side of were I had my mastectomy which was nearly a year ago. I suffer from phantom pain at times and perhaps everything decided to act up all at once today.

Sorry to be a fussy poster today, I wish this on no one in the world and understand others suffer even more then I do. Just give me some words of encouragement today please. Thank you for listening to me.

kathabus

I had a lumpectomy but developed breast lymphedema from the radiation. It is a little in my arm. I lost a some range of motion in that arm, also.

I did 8 weeks of PT and got exhausted from that. It didn't really resolve much. And it was a bit of a letdown. And then I was told I needed more PT. I almost didn't do it. Just wanted to move on with life.

BUT....I went. I changed PTs and I told myself....I'm gonna do more. I'm gonna take the at home exercises seriously. I'm gonna do manual massage at home regularly. I'm gonna take care of myself. And low and behold....my breast looks great. So much improvement.

I guess my advice is to....feel what you feel....but then stand up....ask yourself what you can do to try to improve things....get help if you need it! Schedule some more sessions with a lymphedema specialist if you need it. Have you done any work with one?

ThreeTree

Earth - I'm so sorry. I really hate those days when it all catches up with you! I say if you feel like crying in the corner, do it! I'm one who does not shy away from crying, as I think it really helps relieve the stress and anxiety. Like releasing a little steam from a valve - it's a good thing.

I hope you feel better soon! Take care.

cyathea

Hi Earth_Sky, I echo what kathabus and ThreeTree wrote. LE is a beast, isn’t it!

I am almost at my one year mark for my BMX and I’m still struggling with LE (just truncalat first but now it has progressed to my upper arms) and a frozen shoulder/rotator cuff injury. The pain is awful, but not the kind that needs constant meds but the fact that it is so unrelenting just wears me down.

Some days are just too hard for a “stiff upper lip” attitude.

I let myself embody this frustration. I tell myself it is OK to be tired.

But I also try to “get back on the horse” with self care methods as soon as I can since I know that ultimately this is what is best for my long term health and well-being. Currently, my insurance won’t pay for more physical therapy so I’ve tried acupuncture and it has helped my shoulder. I still have a long way to go until my shoulder has full range of motion and is not so painful, but I’m grateful for the limited relief that this treatment provided. Unfortunately, my insurance doesn’t pay for acupuncture and the grant at my hospital only allows for 10 treatments. So after next week, it will be back to only doing self care. 😥

It’s hard. We’ll get through this together. (((Hugs)))

Rah2464

Earth Sky thanks for giving voice to what we all feel some days. The pain and discomfort can just grind after a while. But I agree with the other posters, I acknowledge it, then get to work trying to make it better with self care. I try to clear my lymph twice a day now (I know, something else to do). That can help so much. But it is trying and sometimes I feel like I am in that movie Groundhog Day. If it helps, you are not alone, and we all understand how this feels. Sending Hugs and Blessings your way for a better tomorrow.

Earth_Sky

kathabus, Thank you so much for listening to me. I had been going to PT and follow all her requirements for exercising and doing my massages. I think part of this is my fault for I was moving some heavy flower pots. grant it they were only 15lbs. I used to lift without a blink of a eye 75lbs and told those days are over. Try telling a farm girl not to lift.

I do have appointment with my doctor & will follow up with my PT.

I promise I will stand up strong and carry on with my journey. All the very best to you.

Earth_Sky

ThreeTree, you are so correct that sometimes crying helps. It will make me stronger in the end. All the very best.

Earth_Sky

cyathea, My BMX was April 2020 & some days feel like it was yesterday. I repeated to myself "keep a stiff upper lip" and "keep calm & carry on" daily, but feel off the wagon. I will pick myself up and keep fighting. I just have to remind myself that it takes time and do what I can.

So sorry your insurance did not cover all that you need. I fear that will happen one day to me so I will get as much info from my PT.

Do you suffer from Phantom pain after your BMX? I have it several times a week and sometimes it last for a few minutes then other times for hours.

Thank you for reaching out to me and yes we will get through this together. Many prayers and hugs.

Earth_Sky

Rah2464, Thank you... that is a good word "Grind", for it really does grind at us at times. Some days I feel great and then I go off & do something to trigger a flare up. I am making it a habit to do my massages more. I been doing them at the end of the day but started today doing them several times. It does seem to help. I need to be more positive and since it is warming up and snow is melting I can go for hikes on the trails again to clear my mind.

Many hugs and prayers.

Anonymous

Earth_Sky - Dealing with LE certainly is a grind. Do you wear compression garments? If not, you should try it. I also bumped up this thread that has an easy exercise you can do multiple times a day.

https://community.breastcancer.org/forum/64/topics/796890

Rah2464

Earth_Sky I think we are twins. Farm girl here as well, and like you, used to lift all kinds of feed bags, hay bales, equipment and never blink. Used to decline help to load up things at the feed store or nursery. Not anymore. Hate that loss of independence. Oh, and I too have feel great days where I then overdo. You would think I would learn by now. Nope hope springs eternal !

Earth_Sky

Rah2464, it is nice to hear from my twin (grin) we farm girls worked hard and it is in our blood to be independent. My friends and family used to call me a mule for how much I could carry without a blink of a eye. I loved that name for there are some pretty mules out there and yes we can be stubborn. I just need to go slow and not overdo it anymore. Lol as I typed the word overdo.

I love your last few words there .... hope springs eternal ! So very true.

Have a beautiful day. Loves and prayers always.