Frustrated

Diana63

Frustrated

Diana63

I am so frustrated, I will start feeling better then something will knock me down. All this week I felt like I had the flu, achy & icky. Then I realized I am probably dehydrated from med I'm on for my heart. Well I started to feel better then my hips started having these pains I have never had before. I know Tamoxifen will cause some joint pain, which I have had all along but this is real bad and it burns. Of course my first thought is bone mets, it just started last night but this really hurts bad.

I am changing oncologist next week so they will probably do a work up and I will find out whats going on. Anyway just venting, I feel like I keep letting my family down and scare the crap out of them every other month.

cancersucks

Hi Diane,

So sorry you are having pain, don't think you're letting your family do. NONE of this is your fault. Sounds like you are being pro active and getting another oncologist, try not to think the worst, hang in there until you know all the facts,You are in my thoughts and prayers. CS

Diana63

Thank you CS, I just feel so useless sometimes. My family has been nothing short of amazing during all of this, and I keep thinking if I ever get better I will make it all up to them.

weesa

Just a thought--how is your Vitamin D level? This has been such a long,hard, dark winter! Been feeling a lot like you describe myself, and I am done with treatment. Normally, I would blame the Femara, but can't do that anymore. Doubled the Vitamin D and glucoasmine chondroitin, and feel so much better. Let us know what you find out!

karen1956

Diana....sending you ((((((((((((hugs)))))))))))))....I echo what cancersucks wrote....I'm just marked 4 years from Dx and I am still not back to the me pre bc....and doubt I ever will be....Like you, I am hard on myself....I know I do alot, but its not what I used to be able to do....bc....the gift that keeps on giving....good luck with your appt with new onc....

Bugs

Hugs, Diana!  Hip pain seems to be so common among us all.  I attribute alot of my hip pain to lack of estrogen.  I like Weesa's idea!  If you're still having the pain next week, mention it to your new onc.  I'm sorry you've had such an icky week.

KerryMac

Diane, I get aches and pains all the time. I am sure yours are just the regular kind. You are also probably feeling nervous in that you are changing Oncs, that will bring up anxious feelings.

Try not to worry too much.

jenn3

I too am still suffering with aches that weren't there before, but.............our bodies are going through so much right now.  I would mention it to the onc so that they can evaluate it and put your mind at ease.  In the meatime I sending (((HUGS))).

diana50

HUGS diana. trying to recover from all of this treatment is a challenge.  i think the hardest thing we do.  your family loves you so much; all they want is for you to be healthy...and a part of their lives.  you are doing that** our peeps want us HERE...

talk to your new oncologist. share everything. speak your mind.....you will feel better and know that someone is listening.  very important**

diana50

Anonymous

Diana  I get the same feelings also.  Really achy and weak and flu like lately.  I've been attributing it to the Arimidex, being at the height of winter, and I also feel worse when there are storm systems moving thru.  It is so frustrating, isn't it!?.  Hang in there babe, make sure you are keeping up with your vitamins D and getting some exercise.

Barb

Cowgirl13

Weesa, could you tell me how much vit d and  glucoasmine chondroitin you take?  Do you also take a multi?  Thank you!

JacquelineG

I get hip pain periodically (am on Tamoxifen and had an ooph) and heard others do too! Try not to worry, it's probably the lack of estrogen!

Jackie

Diana63

Thank you Weesa, Karen, Bugs, Kerry,Jenn, Diana, Barb,cowgirl & Jacqueline, it feels a little better today. I just can't stop feeling crappy, I will have a good week then 3 or 4 bad days. I know I should be more grateful to be alive but I get tired of pulling my family down. I haven't had my vit D checked since my treatments stopped a year ago, thats why I changing oncologists. I think I was dehydrated from my meds for Congestive Hear Failure. Its so hard to stay on top of what the right amount of liquid I should take in. All of my doctors have been a pain since this all started so now that I can move around some I am changing all of them. They don't even touch me when I go in, except my good boob. None of them have followed up on me and then act like its my fault I feel like crap. She was supposed to change my meds and work with me but never had me come back in to change anything. Then she said she wanted to put in a defibrillator, and if I argue with them they call me difficult. I told her no defibrillator and she got mad and said you could drop dead, and I said take this any way you like but you can drop dead too.

My brilliant radiologist was the one that watched me go into congestive heart failure and instead of sending me to a cardiologist told me to work out more to get the fluid moving. He acted like I was a big baby and needed to tuffen up. That was a year ago and I am still suffering the consequences of this mess. I was hospitalized for 7 day and had over 47 lbs. of fluid on me.

I know I will get better I am just getting impatient. Thank you for your huggs and words, you guys are the greatest

Anonymous

((((((((((Diana)))))))))))))))))  Oh honey, I didn't know you were also dealing with the congestive heart failure also.  Geez that really sucks.  I'm so sorry you're going thru all of this.  Your heart issues may be what's contributing to the stress that BC, chemo and rads have done to your body, and not feeling well.  I hope you will have more confidence in your new onc.  Working out may be too stressful for you, and make you feel more tired.  Talk to your cardiologist about your onc pushing for a defiblilator, and if it's something that should be considered. Your cardiologist will be able to recommend what kind of working out you can handle also.   

Diana63

Thank you Shanagirl, some days I feel like I can climb a mountain, and other days its a struggle to walk. I asked about a work out plan and they wanted me to come to there gym to do it. I cant go out that much and have responsibilities that keep me at home. As soon as the weather clears up I am going to start walking everyday and work my way up. I have three goofy dogs that I can drag with me.

I don't want the defibrillator at all no matter what they say. I know my body cant take anymore surgeries, and I know someone that has one. He said its the most painful thing he has ever had done. If I had listened to my body and not the doctor a year ago, I wouldn't be in this mess now. I am done being a follower, and listening to everything the doctors say. I am taking control over my life again, I am tired of letting these idiots do whatever they say is best for me.

blondie45

Diana63 - what heart med(s) are you on? I am asking because I was feeling the some way, I have these new pains and the word burning is what caught my attention as that is what I would describe. I also have fibro though too. Anyhow, mine pains go from my knees to my elbows to my ankles and I mentioned it to onc and he thinks it is my fibro and/or the tamoxifen acting up especially since I am soooo anxious/nervous right now having had the herceptin stopped and finding out my ejection fraction was half of what it was supposed to be.

Pure

Diana, Thinking of you! I hope you are feeling better-hang in there!!!

Diana63

Blondie,I am on Lisinopril, Spironolactone & Carvedilol for my heart and of course Tamoxifen. I have had hip pain since chemo, so thats nothing new but this is a new more intense pain. Its right in the middle of my lower back and it hurts then burns. I might have just pulled a muscle but I am going to get it checked just in case. The last time they checked my heart it was between 25-30%. I had a MUGA before chemo and it was at 57%, so the chemo and stupid doctors brought this on.

blondie45

Yep, I agree with your last sentence. I am also on lisinopril and tamoxifen so I am sure one of them is causing my different symptoms or I have even considered delayed side effects of the herceptin (though I see you aren't getting that). Yes it is best to get it checked out then if it is staying in one spot and becoming intense.

KerryMac

Diana - what day is your appointment?? I will be thinking of you.

hollyann

Diana, I had those same exact pains in both my hips and lower back....I could barely walk across the floor and of course I thought mets.......Fortunately it turned out I had bursitis in both my hips....I had just let it go for so long that it affected my hips and back and feet......Might I suggest you go see an orhtopaedic doctor?.......I went to one here in Alpahretta and he fixxed me right up!......I actually have more mobility and flexibility than I have had in years.......Turns out the Tamoxifen started it all...I switched to an AI after my hyst and ooph and that contributed some to it too.....Now 3 cortisone shots in each hip later and I feel like a new woman.....I wish you well and hope all goes well with your appointment.............

Diana63

 Blondie, Its probably nothing but more SE's I'm sure but you know what always lurks in the dark corners of our minds. Its funny before BC I bet most of us never went to the doctor, unless we were pregnant but now we live in a doctors office. As women we are always last on the to do list, and if we don't get to us then it can wait.  

Kerry, it was on Wednesday but I will have to move it back some. I have to get my records and I didn't have enough time to get any of them yet. I will let you know when I go in and what they said, I just hope they don't look at me and say how do you feel, come back in 6 months.

Hollyann, I hope that you are right and it turns out to be nothing. I didn't know Tamoxifen can cause bursitis, I will look into it.

KerryMac

Diana - you know there have been several times when I have been "sure" I have mets pain - it has felt different, like it is inside the bone, etc. then in a couple of days it has gone. I think it is good to bring up your fears with your new Onc, but our minds are very clever, and they can conjure up all sorts of phantom pains. I know it is easy for me to say "don't worry" but I will say it anyway! Hope you get to see him sooner rather than later.

Diana63

Thank you Kerry I know its probably nothing, its not hurting as bad as it was. The weather has cleared a little so I will do some stretches and take my mutts for a walk today. When the pain stops I don't think about it, then I will pick up something or move funny and it will start up again. Thank you for thinking of me

kimber3006

Diana - I'm not as far along as you, so I'm not in any position to share regarding post-chemo issues, but I wanted to tell you I've been thinking of you and keeping you in my prayers.  I hope the new onc works out great for you!

Diana63

Thank you Kimber

Diana63

Update, my back & leg are feeling much better, I have an appt. with a new oncologist on April 7th. I have been trying to do some stretches and then start a small exercise routine. I keep forgetting how long my body has been out of commission. It took time to get me this way so it will take time to pull myself out of it.

KerryMac

Great to hear your back is better.

Exercise is good! Start slowly, but it is amazing how quickly your body starts to respond.Join us in our Fitness challenge.

Good luck with the new Onc!

kimber3006

Glad you're feeling better!  Hope the stretches and the new onc both work great for you.