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I still can't get back on my feet after two and a half years??

jazdrop
Posts: 1
Joined: Apr 2014

Hello, I'm new here but would like some advice please.

I finshed my treatmet two and a half  years ago.... but i still feel awful? I had a lumpectomy, 4 nodes removed (all clear) 3 months of chemo, Doxetaxal and the C of FEC.....and 20 sessions of radiotherapy, i also suffered for a year afterwards with problems with myheart, which are now seeming to get better.

The troulbe i have is that i am still not back to 'normal'....i am so extremely tired all the time, i now have sleep apneao and have a machine i am meant to use to help me, but i just can't get used to it so have not used it properly yet, but i am so weak, i can only do half the things i used to....im so exhausted, severly exhausted all the time, i do have an underactive thyroid but im on meds to make that normal. I ache from weakness, i get spasms all over my body???? For example, when i go to the toilet for a number 2 ( sorry) everytime i try to wipe my bottom my stomach muscles go into a severe spasm, it makes me cry out, so i have to sit there and keep trying....if i turn around my back muscles or belly muscles go into this awful painful spasm, i get it in my calves and it is soooo painful i scream out loud, i get it in my toes, the spread apart painfully, i get it in my hands sometimes and i now get it in the front of my thighs, it feels awful but is so painful....i also still get a bit of the neuropathy in my hands and feet. But the weakness and tiredess is my main problem....my family keep saying to me,,,,,, come on get a grip, your ok now...you should be back to normal and doing all the things you used to, they sometimes say im just being lazy, and my daughter has said that she feels i sometimes use iit as an excuse not to do things and be lazy, she is very outspoken im afraid.....but this just makes me feel so unhappy, because i feel so unwell in myself..... i have actually said to my husband that i feel it best if i leave the family home, then they wont all keep going on at me to do things and stop being lazy, because i know i cant do all the things they want me to do, i just don't feel strong enough, or well enough, sometimes my wrist go so weak i can't open a jar.

I just don't know what to do anymore as this gets me down...I do suffer with some depression and i take anti depressants for this, but its more anxiety than depression...i have an adult special needs child and this can really be hard work sometimes. But, does anyone else still feel so badly exhausted so long down the line, somedays it takes all my strength to get out of bed and just do the basic housework..... i don't want to feel like this, it upset me massively, but i don't know what else to do.

Sorry to go on.

Marcia527's picture
Marcia527
Posts: 2731
Joined: Jul 2006

Have you talked to your doctor about this? The least he could do is stear you to a specialist. Hope you feel better soon.

carkris's picture
carkris
Posts: 4523
Joined: Aug 2009

it sounds like you have other side effects or new problems. Marcia is right you should go to the doctor and explain everything that is going on. I hope you get some answers.

whle I dont feel normal i would say I am vastly improved and chemo did not go well for me, so demand some attention, and tell your family to walk a mile in your shoes

eihtak
Posts: 850
Joined: Oct 2011

I am so sorry for your situation. What you knew as normal a few years ago is probably not going to be your normal anymore, but that doesn't mean different can't be good. The side effects of cancer and treatment can occur immediately and also much later, years later, but I agree there is more going on than the usual challenges that most face.

Please call your doctor, or another doctor if that one does not seem concerned.  Maybe some of your concerns are related to your anti-depressant and that will need to be adjusted....just a thought??

As far as the spasms and cramps, I get them also, though maybe not that bad. When I get one in my stomach I try to immediately stretch like arching my back and take some deep breaths. That usually helps, but the leg or toe cramps.....OMG!!!! I can relate. I take Vitamin D and have noticed that they are more frequent if for some reason I have not taken this for a while....like if I'm out and go a week or so without. Also staying hydrated seems to help alot.

I also became very anemic over the past few years and often required blood or iron infusions during treatment. I eat a healthy diet but supplement with 1 iron pill daily and have noticed a huge difference in not feeling so tired/exhausted.

I'm sorry that you are not getting the support you need from your family but if they have not experienced this personally some people are just unable to understand. Some things like illness and exhaustion may look like laziness to them and just as its hard to see things our way, its also hard for us to see things from their point of view.

Again, it sounds like you have your hands full and could use some help.....please do talk to a doctor soon and let us know what they say. 

Iwill have you in my thoughts and be waiting and hoping for some positive news.

katheryn

disneyfan2008
Posts: 5388
Joined: Oct 2010

Sorry you are going through this..thinking of you..

Denise

1blessedmom
Posts: 14
Joined: Apr 2014

I know exactly how you feel! I feel the same way but I've only been done with treatment for 4 months. I'm still pretty weak, have joint pain, get back spasms and can't do alot of what I used to do. I've noticed if I don't move around and try to exercise it doesn't get any better. I walk on my breaks at work and it gets the stiffness out of my body. I know I have to start excercising or I really feel like I'm not going to get any better. I know I have to push myself because my mind says one thing and my body says another. If you are immobile you truly are not helping yourself. If we want to get better, we have to push ourselves physically and accept that healthy eating and exercise needs to be our main focus. We've fought the fight and need to get the mental attitude that the best is yet to come. I wish I had my husband here to support and encourage me. He died 2 years before I was diagnosed. I too have a young adult son with special needs who lives with me. It's not easy, but we made it through the most difficult part. I want to get healthy and strong for my first grandbaby who will be born the end of June. For me, I have to get out of the "victim" mentality and get a "victor" mentality. Please don't let this defete you. We have already defeted what has brought us here. It's time to focus on getting strong and moving on! 

HillBillyNana's picture
HillBillyNana
Posts: 106
Joined: Jun 2009

I can understand what you are going through. It took me several years to get my strength back. I use iron skillets to cook with, and for quite some time I had to have my husband move them to the oven and out of the oven. I felt so victorious when I first took one out of the oven!! And my wrists are still not strong like before chemo. I cannot rise from a squatting position, for about two or three summers I could not stand heat from the sun. If sunshine touched my skin even through the car window, it made me physically sick - for a time I could not bend over doing yard work - I would be sick. It has been 10 years since I finished chemo and radiation. I have to remember that during that time, my body has aged. I have leg and foot cramps. But so does my husband. We take quinine when they come on. Can't get it in U.S.  but we order from canada. Finally - this year I have been working outside. I feel stronger. I can endure longer periods of activity. I agree with all those who advise you to keep moving. I'm not 59 any more, but 69 alive is great! I do hope you find ways to endure the weakness until you can get your strength back. And I hope your family will come to understand that it takes time to recover from those treatments. Do all you can do and be patient til you can do more.

skm011897
Posts: 6
Joined: Jun 2014

Very well said. Sometimes thats all we can do. Stay positive and remember what made u fight this in the first place. For me its my kids, my husband, and my parents.

SIROD's picture
SIROD
Posts: 2177
Joined: Jun 2010

Hi,

A cpap device does take a while to become accustom to it.  Please give it a try.  Perhaps you could ask for a different mask.

I don't know how I would without mine.  It helps me so much.  My fatigue also is from ongoing chemotherapy but without the cpap device, I know I would be so much worse.

Make another appointment to visit your specialist in cpap devices and try for another mask.  I was determine it would work for me.  So I didn't give up without trying for months.  It's not easy trying to sleep with some noise and a hose in a mask.  I dropped the device on the floor the first week I had it.  You have to learn to sleep in the same spot.  No more tossing and moving around during the night.

Give it another chance.

Best,

Doris

 

RozHopkins
Posts: 469
Joined: Dec 2010

Nearly four years after cancer here.  I still feel it takes a huge effort to do things, anything.  House hold chores, getting dressed, getting up.  Yoga and Pilates has taken care of arthritis in my neck and shoulders.  I have had a few episodes of pain in my feet, toes, hands, elbows and ribs, terrible spasms in the back left and right.  Anti inflammatories handle those after about three days, then stop taking them.  I am sure something is wrong but until anti inflams don't work then I will check it out deeper.  I truly believe the hormonal side of cancer and chemo cause or worsen health problems.  I copped out of taking anti estrogens after three years in order to sort out things I thought were not right.  Had jaw bone disease and a polyps no one found until I got proactive, both caused probably by treatment.  The weight then fell off and I now love feeling lighter and happier.  I eat healthy and exercise.  I also feel people who suffer from depression (I have done so all my life) handle things differently.  For instance when the joint pain strikes I get the most horrific night terrors at the same time.  It is all to do with who you are, your actual nerves, and how one part of the brain affects another part of the brain in each person.  Then my jaw bone specialist made an off the cuff remark that people like me get night terrors when something flares up, the pain part of the brain sets off other parts into reacting.  Very interesting and everything I knew but felt stupid voicing to doctors who can only treat patients by the book instead of thinking out of the box.  Tiredness.  Sometimes the urge to sleep is overpowering and seems rather dangerous while driving.  I used to think it was because I have low blood pressure, but I know it is not normal.  That is for another day, the more you dig the more some of us find.  

 

Please find someone who will listen to what you are saying.  There has to be something going on and at least some of your symptoms can be helped.  You are aware and asking us for help, thats the first step.  Keep pushing because you are completely right.  Re approach the thyroid problem, get checked for any deficiencies, even mets just to put your mind at rest.  Perhaps a bone scan.  Do you have a good friend or a member of family that could go with you and get things started.  Ignor those who don't understand, in fact I think I would have called them out.  You need understanding.  Plus Cymbalta antI depressant helps aches and pains as well as depression.  It was a complete fluke that I was on it when diagnosed and had no pains.  When I thought it was time to come of it, whoa the pains hit hard.  I could barely get out of a chair.  This drug is given to people just for joint pain but for you it could have a dual purpose like me.  Good luck.  Don't despair.  Sorry I have rambled.  

skm011897
Posts: 6
Joined: Jun 2014

Hi im kelly. I have a similar story to yours. I too have suffered from depression since I was a child. My cancer caused my depression to worsen, anxiety and heart palpitations,  sciatica, bone pain, and muscle aches. My dr switched me to cymbalta for the same reason. To help with the pain and the depression. A medication called nabumetone, an NSAID, helps massively with the bone pain. Thank u for the information u have shared. I too feel like I am not alone anymore. Glad to know someone else is like me. :)

sweetvickid's picture
sweetvickid
Posts: 446
Joined: Nov 2009

I know what you are talking about.  Found a great accupuncturist and chinese medice Dr.  The muslce spasm are happening less.  I can actualy sleep for 3 hours at a stretch insteadof just one hour.  I am feeling some energy and interest coming back in things instead of making myself do things.

jendrey's picture
jendrey
Posts: 377
Joined: Sep 2009

Sounds like a potassium deficiency to me.  Hope you are feeling better soon.

(((hugs)))

Jenn

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