How do I cope with post-chemo muscle fatigue

Texas357

I exercised regularly, 30 mins a day, throughout chemo. So I was shocked when a few days after my final treatment, I suddenly couldn't stay on the exercise bike for 15 seconds without extreme muscle burning. My legs felt like rubber just walking across a parking lot.

It's been nearly 3 weeks now and my muscles still burn when I try to do anything. What the heck happened? Could it have anything to do with the 10 pounds of water weight, which also appeared overnight after that last treatment?

I'm not tired. I've got lots of energy. I just can't use it because my muscles aren't cooperating. Suggestions? Is there such a thing as pushing too hard?

SoCalLisa

The center where I was treated had a physical therapy

program for post treatment  ladies...it really helped me

alot..they did a strength assessment prior to starting and

I did VERY poorly..the program helped me more than I

can say..

dlb823

Texas ~  I had very weak leg muscles for the first two or three months post chemo (TC).  Something as simple as climbing stairs made my thigh muscles burn terribly and my legs almost give out.  I'm now 6 months from my last chemo and back to walking about 4 miles a day, but still can't run more than a few yards because my legs still feel strangely "heavy," and occasionally, if I'm tired, I still notice that stairs are hard.  It just takes longer than anyone ever tells us for our bodies to repair themselves from the damage from the chemo.  Also, if you're on Tamox or and A/I (or got off HRT, as I did) the decrease in estrogen affects your muscles too.

In the mean time, you might want to check out the Motivation thread.  It's a group of us who are all trying to get back to exercising and encouraging each other in spite of our temporary physical limitations.     Deanna

Katalin

Small suggestion:  make sure your thyroid is functioning properly.  Chemo sometimes shuts the little sucker down, and it presents with (among other things) muscle fatigue.  Your GP can order the tests.  Good luck!

Texas357

Thanks for the suggestions. I start radiation in a week or so, and my radiation oncologist says she will monitor my thyroid. Hope it's okay! I've always had such a fast metabolism. BC takes so much from us.

lisasayers

I know it took a couple weeks after that final treatment before I was to pre-chemo levels.  I taught Zumba all through chemo, but after that last treatment, I got winded very easy and my legs felt like they would give out on me!  You will come back around! 

I also did a seven day detox to help flush the garbage out of my system and they help rid me of the water weight.....  You may want to look into something like that when you can.

Hang in there......

xpectmiracles

I too have noticed a significant increase in muscle fatigue after the last treatment. All throughout my chemotherapy I was able to exercise. Now, I find that I can't even take the clothes from the washer to the dryer without needing to take a break! I feel pathetic! I have been wondering if I am anemic. How long will this last? Should I call my onc?

lisasayers, I usually do a detox fast every spring. How long did you wait post-chemo to do the fast? Did you ask onc before or just do it?

xpectmiracles

bump

ktym

Texas: what chemo regimen did you have?  I posted regarding TC myopathy on the Taxotere/Cytoxan thread if that is what you had

Texas357

Yes, it was the taxotere that caused all my major side effects.

bomber410

I know it took weeks/months to work that crap through my system.  I, too, was on taxotere.  Eye tearing.  Muscle aches and fatigue, joint aches. I exercised all through treatment including radiation.  The quality wasn't there.  Getting up from a chair or out of bed in the morning was all about the muscle and joint pain.  That subsided after 4 months.  Water weight went in about 4 months.  I started taking CoQ10 300 mg several months ago because the muscle fatigue lingered. I could fast walk the Komen 60 mile 3 day but didn't have the leg lift and strength to run for extended periods.  Not sure if it helps but in combination with time passing I am much stronger and running/biking well. I've been doing track workouts again to work on my speed and endurance.  It's going well.  I am now 19 mos post chemo.  I guess it is all relative to what you are after. 

Texas357

Bomber, did you see an opthalmologist for your watery eyes or did they ultimately clear up on their own?

I had my tear ducts opened once during taxotere treatment, and I'm not anxious to repeat that painful process if I can avoid it.

bomber410

My eyes just worked through the watery crud.  I took several weeks.

Texas357

Thanks. It's been 4 weeks and it seems to be slightly improving. I'll give it more time.

Beverly11

Hi Lisa - I was wondering if you know the type/brand of detox that you used.  I will be done chemo in June and definitely considering one.

Inspiring to read women getting stronger and fit again! 

cp418

We have a local Wellness center that has Yoga classes for cancer patients.  It wasn't open yet when I finished chemo wo I starte daily walks as I was very anemic and wiped out from treatments. It took months to get fit again and slowly rebuild my blood counts and endurance.  Breathing was affected too but maybe that was from getting tired.

Hazel67

It's good to know that I'm not unique -- I googled "muscle fatigue + chemo" and found this site.   This weird feeling in my thigh muscles began after the third chemo (and yes, it included taxotere) and hasn't lessened yet, two months after finishing - I'm not stopped from brisk walking,  but sure do feel it climbing the stairs!   Muscle aches are described as a side effect of chemo - but this is more like a worn-out, overused feeling.   At least I'm not alone!

Georgiagirl27

I just found this page....I had finished chemo/radiation about a year and a half ago.  I'm still dealing with chemo after effects.  One of the drugs I had was taxotere.  I wish my oncologist had told me I would be dealing with the fatigue still and now the muscle pain.  I used to be pretty flexible but now I can't bend over without pain in my hamstrings.  I also still get very winded just doing regular yard work.  The taxotere had caused me to build up fluid in my lungs and lower body when in chemo.  I had to have the fluid in my lungs drained.  I still have numb fingers and toes.  I'm only 48 and feel like I'm 80 most days.  Will I ever get my body back the way it was before chemo?

jmbr57

So glad to see your post. Just finished taxotere and carbo 5 weeks ago and have the muscle fatigue in my thighs, neuropathy in my feet and swelling of my feet and lower legs. I also have what I refer to as chemo tears. I know that I have a long way to go before these chemicals are out of my body, but it does help to know I'm not the only one with these symptoms. I just keep drinking lots of water to try to flush everything out. Hope you feel better soon.

liefie

It took about 8 weeks PFC (Taxotere and Cytoxan) for my tired rubber muscles to become somewhat normal again. My muscles were also really stiff - could not fold my legs under me as I always did on the couch. Four months PFC I finally had the energy to go back to the gym. It is a long process.

Rosina0015

So happy I found this thread. It's been 6 weeks since my last chemo. I have the same leg muscle weakness and my legs tend to give out on me when walking sometimes.



My upper thighs were in extreme pain from just squatting for a few mins to clean my sliding glass window. It hurt so much to walk, sit on the toilet etc. My Onc today said that muscle weakness was normal at this point. Who knew? I sure didn't. I thought by now I'd be feeling much better.



Also my neuropathy still is an issue. Tired achy sensitive feet.



I'm going to keep walking at the gym and not give up. I'm determined to strengthen my core before my next surgery.

Mellie289

Just found this thread looking to see if anyone is experiencing the same thing. I keep hearing about fatigue (which I know well from past hypothyroidism) and this is just in my muscles - total muscle fatigue that goes to exhaustion with almost any activity, especially in my thighs and glutes. This set in during cycle 3 and hasn't given up 4 weeks out from the last treatment. It's so discouraging to see bomber410 say this subsided after 4 months and dlb823 still feeling some leg heaviness 6 months out!

I was trying to see if doing exercise (as little as that is possible) will help or hinder if the muscles are going to exhaustion so quickly. I keep hearing that I should be doing exercise to fight the fatigue, but like Texas, I don't feel tired. I have lots of energy. My muscles are just unable from the moment I wake up in the morning until I sometimes crawl up the stairs at night to go to bed.

I really hope the Taxotere did the trick for the cancer cells since it has been so unpleasant and is having these lingering effects.

ziggypop

Hi ladies - I finished Chemo over a year ago. I could barely walk up the stairs after - legs felt like painful rocks & shortness of breath after about four steps. I dropped things all the time - they just slid through my fingers because I couldn't really feel them & I couldn't get jars open. Slowly all the issues have resolved themselves. My onc told me that in general it take 3 to 5 weeks for the chemo drugs to leave your body (which is good in a way because they are still presumably having some effect). Then your body has to repair itself. Just know that for most people the issues clear up over time, hair grows back, nails get back to normal, muscle strength returns & neuropathy resolves. But you just had a lot of toxins put in your body & it takes time.

ktym

Hate to be a downer here, but, yes I believe there is such a thing as pushing too hard after taxotere does a number on our muscles. About 5% get a true myopathy, they don't know if it is direct muscle damage or related to neuropathy. For most those get better and it isn't an issue. For those of us with permanent neuropathy it is a different story. So, I'll just pass on what worked for me because I wish someone had given me that advice when I was finished with chemo. I was a hard core fitness enthusiast before breast cancer and worked out (although not as well on bad days) all through chemo. So I pushed hard after chemo ended and it turned out to be the worst thing I could have done. I learned the hard way over several months that pushing it only set me back. The old good burn feeling after a work out meant I was left weaker and could do less. So I learned slow gradual increase in activities and backing off the second I felt the acidotic muscle ache feeling starting, was what I needed to do. It has taken a frustratingly long time to build some muscle up and get into shape again. I can't help but wonder if I hadn't wasted months of assuming my muscles would recover if I wouldn't have done much better sooner. I'm sure this isn't true for everyone, but, for those with severe permanent muscle and nerve damage I think you have to relearn how to exercise for the new reality. Since it took 3 years for my onc to admit the damage was permanent, he wasn't much help during the relearning phase

ziggypop

I'm going to second what kmmd said - go SLOW. Not only can you set yourself back, but you can also trigger LE buy pushing to hard if you've had nodes removed or rads. Most people ill not end up with permanent neuropathy, but either way recognizing what your body has been through, take it slow. Most oncs recommend just walking at first.

SeaJay

This page was the first thing that came up when I googled my symptom and I had to joined to say thank you because it was such a relief finding this. I finished my last of 8 Fec-T  treatments 4weeks ago I had some muscle weakess in my abs (felt like I was getting the burn you get when doing sit ups while standing or walking for any length of time) but it was only every now and then, a week after my chemo finished I started to notice the burn when walking up stairs and if I didn't rest when my abs started playing up I felt winded then as the days went on it got worse until one day in the 3rd week I completely crashed  I just couldn't get out of bed at all because my stomach muscle, legs, feet and arms just wouldn't work and hurt (so far its only happened once fingers crossed that won't happen again) it really knocked me for six mentally I am 32 and felt like I was 90years old. I am on week 4 now and learning to work with and not get so frustrated with my current body limitations, recognizing when I need to stop and rest before my body makes the choice for me has seemed to help the recovery time in between activities shorter so I can do more and not feel so useless.

axg24

Hi seajay

I had 4 cycles of cytoxan and Taxotere and what you're describing sounds like what I had too. After 2 weeks post last chemo on 1/2 was when I started feeling the muscle ache. The pain was so bad that it was hard for me to get out of bed. I literally have to lift my leg with both hands so I can get out of bed. I had back pain too and can hardly bend to put on my socks. My thighs were all red and warm. Doctor said it's a side effect that would go away eventually so I started slowly doing stretches and short walks as much as I can and just like you, my body told me exactly when to stop. After 1-2 weeks of doing that, the pain got more manageable and only at worst when i wake up in the morning. In fact during the first week, it felt better right after stretching but the moment I am in one position for an hour, they start hurting again.

I am now 2 months post chemo and it definitely got better. I am more mobile now, doing yoga and Zumba almost everyday. There are still times when I still feel like a 90 yr old( am 48) when I am getting up from sitting...difference is now i can cover it up much better and pretend that everything's ok until I loosen up my muscle which takes less than a minute.

Hope you feel better soon.

Geosomin

After my third taxotere I started to experience the muscle pain and water retention in my calves and thighs and stumbled across this posting. So glad to know it's "normal" although I wish someone would have warned me. I am trying to exercise when I can but the aching muscles is new - makes it hard to do much of anything, but I will keep at it...I miss my pre chemo crossfit days. Some day my muscles will be back Only one chemo left!

Jan8500

As others have related, I came across this thread when I googled muscle pain + completion of chemotherapy.   It's very reassuring to know that I'm not alone.   I finished my chemo (Taxotere, Carboplatin, Herceptin and Perjeta)  a month ago.    I didn't have the muscle burn during chemo but it began a couple weeks after my last infusion.   I thought it was from lack of using my hams and quads and calves so I worked at stretching those muscles.   The burn and tired feeling got worse.   After reading the posts here I realize that the drugs are the culprit and that it might take some time to resolve.   I also have chemo tears which require dabbing with a handkerchief every couple minutes.   I saw an opthamologist last week and he told me that the ducts were fine but that I should use Tears or some similar eye drops frequently throughout the day.    It has seemed to help.  He said the chemo creates severe dry eye which in turn causes the overflow.    One sidenote.   The chemotherapy really worked for me.   My invasive breast tumor was 3.5 cm before I started treatment and now it is impossible to find on an MRI.   I have surgery in a few days and the surgeon told me she wouldn't know where to go if it weren't for the metal markers from my biopsies.   Thanks to all who have contributed to this thread.

savd314

Like many of you, I also have had extreme muscle fatigue, predominantly in my quads, hamstrings, calves, and butt, and also the fluid retention from thighs to feet that some have mentioned. Member kmmd posted something on another similar thread where she said her integrative medicine person thought the muscle problem was mitochondrial. That resonated with me, and I have been reading around the internet, trying to educate myself on how mitochondria work and how to help them work better. Basically, the job of mitochondria is to convert food and oxygen into energy (in the form of ATP) by way of some chemical conversions. When working normally, mitochondria "recycle" the elements needed to make ATP, which makes the energy-making process more efficient and quicker. When they're not working optimally (think, after damage by chemo drugs) mitochondria have to build ATP "from scratch," meaning more chemical conversions are needed, and the process is therefore slower. This slow pace means cells can't get energy fast enough, hence the feeling that you've exercised to exhaustion while not actually having done much. The reason exercising at a lower intensity, or for a shorter period of time, or on alternate days instead of every day works is that these things allow the mitochondria some time to catch up on energy production. But what also helps is providing the  elements needed for producing ATP and for boosting the function of your mitos. You might want to research and/or try some of these: alpha lipoic acid, acetyl-L-carnitine, Co-Q-10, d-ribose, magnesium aspartate, resveratrol, NAC, NADH. I used alpha lipoic acid, acetyl-L-carnitne, Co-Q-10, and magnesium aspartate throughout my chemo but recently have added resveratrol and d-ribose, and within 48 hours noticed that the fluid retention was down and that my muscles felt less heavy and wooden. I think the d-ribose in particular, which is a sugar essential to making ATP, has made a great amount of difference. I also have fibromyalgia, and d-ribose is recommended for that condition as well.

If you want to read more, here are some articles you might find interesting: 

This one explains how mitos work and defines chronic fatigue syndrome as the symptom of mitochondrial failure: http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure

This is an article on d-ribose. See the skeletal muscle section and recommended dosage guide near the enda:  https://www.lef.org/magazine/mag2008/may2008_D-Ribose-Energize-Your-Heart-Save-Your-Life_01.htm

This is about massage, and how it encourages muscles to construct mitochondria:  http://breakingmuscle.com/health-medicine/science-says-massage-heals-your-muscles

Hope something in here will be of help to someone. Many thanks to kmmd for your post which led me to try some things that helped.

CRams

I, like so many others here have stated, was soooo thankful to find these posts.  I had myself convinced that I had blood clots until I read all of the above information.  I completed my last chemo treatment (taxotere and cytoxan) on Feb. 26 of this year.  Swelling started one week after last treatment (never had swelling all through chemo until then).  Pain in legs started several weeks later.  My oncologist tried lasix, steroids and an echo-cardiogram for the swelling.  Lasix and steroid did not help and echo came out ok.  Oncologist insists swelling is not from chemo and referred me to my general practitioner!  Turned to internet out of frustration.  I too have the muscle fatigue/stiffness/tightness.  Swelling is in legs, ankles, feet, abdomen and face.  Am very interested in the information savd314 shared about the supplements taken to help with this.  Was wondering if you take all of the supplements together (seems like a lot to take).  Also what dosage did you take?  Also wondering if anyone has done a detox to rid the body of the chemo drugs.  If so, what detox did you use?