Post Cancer Fatigue

kmnichols58

you are not alone, its been 4

you are not alone, its been 4 yrs since treatment started and some days i feel worse than when i was going thru it all, i had TNBC and cancer free but these side effects are awful..praying for you

kmnichols58

tonigary said:

i saw same article and was also relieved....have been diagnosed with chronic fatigue, fibromylgia, chronic myofascial pain, etc.....7 year survivor of breast cancer and still tired most of time.....gp put me on adderallxr so i can work....

did the adderall help the

did the adderall help the pain at all, i am sure it gave you energy

rq

JPJC said:

Fatigue
Hi,

I am a Stage IV Colon Cancer survivor for 5 years now and continue to have issues with fatigue. I also have neuropathy issues that are very common according to my nurse at the cancer treatment center.

It is nice to know that I am not alone on this issue of fatigue. Sometimes I have energy and sometimes I get so tired that I feel like I am getting sucked into the couch and that there is a large weight pressing down on me, keeping me there. I carry a cot with me in my vehicle, so that if I am someplace where I can take a nap, I just pull it out and I do. It sounds kinda' goofy, but I don't care what anybody else thinks about it.

My oncologist is tired of hearing my complaints about fatigue and I understand that. He needs to focus on caring for those he can help and really can't afford to spend time on people like me, who are in remission.

None of the medications that I have had prescribed for me have helped with the low energy level or the pain and neuropathy in my legs. In addition, most of the meds make me crazy or give me suicidal fantasies, so I have stopped taking them. My marriage sucks and my spouse doesn't want to have any physical contact with me - I understand that because I look a bit grotesque.

Sometimes I question my faith and then feel like a hypocrite for doing so. It's pretty crazy - I should be thankful that I am still here and all that stuff, but sometimes I wish the cancer would just come back so I can get this crap over with.

Sorry if this sounds depressing, but that's my situation. It does feel good to get it off my chest and I suspect that I am not alone.

If anybody has any suggestions - please let me know. I'd rather get tips from somebody who has been there.

Neuropathy

My mom had severe neuropathy from treatment. We have found that accupuncture and lazer chiropractic do wonders.

NoTimeForCancer

kmnichols58 said:

did the adderall help the

did the adderall help the pain at all, i am sure it gave you energy

kmnichols58, tonigary has not

kmnichols58, tonigary has not been on the board since 2008 so I do not think she will answer.  I just wanted to let you know.  

I wish you luck on your search for help.

Leplastrier

granny44 said:

I'm so sorry you all have been through so much - makes me feel almost (but not quite) "lucky". I have (or had, depending on how one looks at it, I guess) State 2b invasive breast cancer; 4 surgeries; chemo (8 rounds) and am supposed to be on entiestrogen treatment, but have stopped taking it for the very reasons described - chronic fatigue, joint and bone pain, neuropathy, "chemo-brain", etc. I haven't read the CURE article, but will get the magazine. I feel relieved to know that others are experiencing these after effects, or whatever they are. I'm not very far past treatment (last chemo was Nov. 11, '06), and was already discouraged because I'm not feeling that much better than when I was on chemo - but now (after reading your stories), I guess I'll just work on adjusting my attitude! Thank you so much for sharing - and blessings to each of you.

about your antiestrogen meds

Hello,

I am fresh out of breast cancer op, radiation x 30 and now on Arimidex. I am supposed to take these for 5 years they say. It worries me as I am bloating and fatigued, but have trouble exercising because I believe I need a knee operation. Hehe a bit of a catch 22.

Just wondering how you are doing now, and wether you are still off the meds?

Cheers and kind regards

 

Adrienne(Leplastrier)

Ro2002

tonigary said:

i saw same article and was also relieved....have been diagnosed with chronic fatigue, fibromylgia, chronic myofascial pain, etc.....7 year survivor of breast cancer and still tired most of time.....gp put me on adderallxr so i can work....

Almost 15 years Cancer Free still in Pain

March 25th I will be cancer free for 15 years. I live with chronic fatigue and pain everyday. I am becoming depressed- I am 37 years old, and feel like I am slowly dying, I am not living life. The pain seems to become worse with each passing year. winters are even harder. I was in the hospital in December, and am out of work for the next two weeks. I was diagnosed with fibromyalgia....No fibro meds have helped- but I believe everything I am feeling is from my chemo- ABVD for hodgkins Lymphoma stage 4. I also had TB a year after I completed chemo. At this point I am feeling helpless! At this point I am afraid to take any medication because of the long term effects it may have on my body.

Ro2002

hodgkoid2003 said:

Fatigue, Disability, ADA
I see a late effects doctor at Sloan Kettering who specializes in those suffering from treatments that cured their cancer. In my case, over 19 years ago, for Hodgkin's Disease. Though I don't recall the conversation from last October exactly, we did talk about the fact that my fatigue has increased, especially following emergency heart surgery (late effects related) last April. The important thing that he told me, it was "normal". It was definitely a relief to have this conversation in front of my wife, totally unprompted. So at least, now, she knows I'm not just being lazy, and I don't feel like it.

As far as social security covering disability for fatigue, not too sure. Perhaps this is something that can be talked about with your doctor first, and then perhaps a representative from your social security office.

That being said, under the last presidency, the ADA (Americans With Disabilities Act) was amended to include (and please forgive my political incorrectness), that people with cancer, being treated from cancer, or dealing with issues as a result of, are considered disabled. The writing is actually more detailed than my summary, but perhaps that may give hope that since we fall under protection of the ADA, that it would make it more possible and less complicated to get SS benefits.

I don't know if that answered your question, but I hope it gave you some direction.

Paul E. (hodgkoid2003)

Pain and Fatigue

Hello Paul, March 25th I will be cancer free for 15 years, I am 37 years old and  I deal with chronic pain and fatigue. The winters especially leave me crippled. I was treated in Cornell Preb. NY NY for hodgkins lymphoma stage 4.  I feel like I cant function at work or at home. Atleast at home Im on my own schedule - I am always in pain, its hard to remember, the more stress I undergo the more pain I have. In accordance with the ADA have you gone on disability? I can not just quit my job, I have two children 17 and 8 that I need to support. I just cant do this anymore.

JerzyGrrl

Ro2002 said:

Almost 15 years Cancer Free still in Pain

March 25th I will be cancer free for 15 years. I live with chronic fatigue and pain everyday. I am becoming depressed- I am 37 years old, and feel like I am slowly dying, I am not living life. The pain seems to become worse with each passing year. winters are even harder. I was in the hospital in December, and am out of work for the next two weeks. I was diagnosed with fibromyalgia....No fibro meds have helped- but I believe everything I am feeling is from my chemo- ABVD for hodgkins Lymphoma stage 4. I also had TB a year after I completed chemo. At this point I am feeling helpless! At this point I am afraid to take any medication because of the long term effects it may have on my body.

Have you...

Ro, have you got someone on your care team that you're able to connect with about them considering what's going on with the WHOLE you, someone you could say what you've just posted to and they could help coordinate your treatments? Some health plans have case managers, some primary care physicians do this, some medical groups have coordinators. Plus some folks are just plain better and more sensible at doing this sort of thing for patients. There are lots of options to deal with the sort of issues you've described, but finding the right mix of them for YOU can be tricky and take a while (Not to mention adding depression, which can turn your motivation to figure this out to "Meh," doesn't help in the least).

BTW feeling depressed and/or not wanting to take yet more meds aren't unreasonable feelings, but they are just feelings and not something you're necessarily going to have to be stuck with. 

Does your medical card have a customer service / care number on the back? Calling that number could be one place to start. 

peachie60

Extreme fatigue

I have started experiencing extreme fatique this week also.  It will be 2 years this August 2017, since I had surgery and brachytherapy for a very rare type cancer.  I am so glad that I found this message board and am seeing that I am not alone in feeling so tired all the time with very little energy.  I am trying to work my full-time job, and find it really hard to get up lately and get moving.  I also have the Fibromyalgia along with Osteoarthritis.

Hellokitty7

I had breast cancer. It's

I had breast cancer. It's been six years and I'm still suffering from fatigue. I'm always tried. I eat healthy and take vitamins but nothing seems to help. So no, you're not alone. 

Hellokitty7

I had breast cancer. It's

I had breast cancer. It's been six years and I'm still suffering from fatigue. I'm always tried. I eat healthy and take vitamins but nothing seems to help. So no, you're not alone. 

cilla1982

3 year hodgkins survivor

hello my friend,im still dealing with chronic fatigue 3 years later,doctors have been no help so far,just pacing myself,plenty of sunshine,and listening to relaxing music..i hope daily they find a answer for all of us..well wishes cilla

suelou9999

lajolielolita said:

I am always tired and no one understands!
I am hodgkins lymphoma survivor. I was diagnosed in 2000. I am only 26 and I feel like I am 86. All my doctors say the same thing... Well you have a hypothyroid so lets check those labs and see if its not your thyroid. Yep, it never is! No doctors seem to have any answers and yet everyone close to me either think I making my fatigue up or they think they have a diagnosis for me. I wish I could make people understand how I feel. I am sooo tired almost all the time and adderall is the only thing that makes me feel like a normal person with a normal energy level. I hate to be a person that depends on a drug but the truth is, I do. Without adderall I wouldn't be able to work, heck I wouldnt be able to get out of my bed because I just feel that tired. But i cant tell this to my family and friends because they cant understand. I dont know how and I dont know why but having cancer/chemo/radiation changed me and I feel less alone to know there are others out there that feel the way i do.

How are you doing since this post? Has the adderall been a help

My husband was treated for Non Hodgkin Lymphoma in 2014

kih

i am feel tired, looks like

i am feel tired, looks like pos fatigue of cancer

kih

valeriemom said:

post cancer fatigue

I thought after two years I would be ready to go.  It isn't so.  I am so tired all the time.  After chemo, radiation and surgery, I am taking Anastrozole for 2.5 more years.  It is wearing me out. After reading. it makes me feel at least like I'm not crazy.

me too, after 01 year of

me too, after 01 year of treatment, i am feel tired; i thought the fatige was gone, but it didn't