Muscle Fatigue/Exhaustion

Mellie289 · October 2013

Hi Everyone - I'm looking for a little feedback so I can communicate more effectively with my MO this Wednesday about my SE's. I have had four rounds of TC and will have my 5th infusion (of six) right after our follow-up meeting.

The last two cycles, I have felt severe muscle fatigue, stiffness, some soreness and a loss of flexibility that has continued into the next cycle. My muscles feel like they are near the point of exhaustion always while I am at rest - it takes very little activity before they are shaking and to the point of giving out.

When people say they are suffering from fatigue, is this what you mean? I don't feel tired, I don't need naps - when I'm sitting still, I feel quite energetic mentally. I just don't have the physical strength in my muscles any more to stand very long, walk very far, lift anything heavy or hold something light for very long.

Is this fatigue? Is this myopathy? Is this part of peripheral neuropathy? (With regards to that last one, I've had some definitely PN this last cycle in my hands that has pretty much resolved, but I saw shrinking muscles on the list of symptoms for Chemotherapy-Induced Peripheral Neuropathy at this American Cancer Society page: http://www.cancer.org/acs/groups/cid/documents/webcontent/002908-pdf.pdf)

Also, if anyone has had this, some feedback would be great because I'd like to know how worse it could get if I do two more cycles. I feel like I could become completely incapacitated if this gets incrementally worse with each cycle. Or any advice on what you've done to alleviate some of this? I'm thinking of trying massage therapy or yoga, although I don't think I could hold any of the poses. I know walking is suggested to fend off fatigue, but for muscle fatigue?

My MO is on maternity leave and I'll see someone who is covering her patients - she was very brief with me last time and this didn't get addressed. She's not really asking me questions (although my regular MO didn't really cover much either in our follow-ups) so I need to prepare in advance to deliver my information to her. I've been quite discouraged these last two rounds to have not bounced back to normal physically before heading into the next round and I'm worried about this worsening, along with the PN in my hands worsening by continuing.

Thanks for any advice!

Mellie289 · October 2013

Thanks for the advice, kayb. I do tend to eat quite a bit of protein, but maybe I haven't been getting in enough - especially in the early days post chemo when I've been focusing on fiber to keep things moving. I didn't have any diet advice from my MO. I'll try to be conscious of eating more this round.

I said myopathy above, but I'm wondering if it's fibromyalgia as I'm not sure what that would feel like either. I tried a little self massage on my arms last night and I feel like the connective tissue around my muscles is really tight. I've had that before in my legs and back and had to go for months of physical therapy. Maybe it's just another example of the chemo stirring up an old weakness, as it does?

Jennie93 · October 2013

The muscle pain and weakness is pretty common. I also did 6 TC and it was one SE that did get worse and worse over time. My MO was the "Queen of SE denial", lol, any time I told her about anything, she would act like she never heard that before. But then thankfully I had all my fellow warrior sisters on here to learn from! By the end, the muscles in my thighs hurt so bad I could hardly make it up a flight of stairs. Apparently what causes it is when your RBC/hemoglobin levels drop below a certain point, oxygen doesn't get to the muscles as well, so they hurt. It will go away after chemo is done but it takes awhile, a month or two.

Fatigue is more like an overwhelming feeling of tiredness. Toward the end of chemo I felt like I was walking around in cement boots. Every little thing was such an effort.

The neuropathy is more of a concern. It might not go away. I had just a little numbness in my fingertips which took longer to go away after each dose. MO suggested taking vitamin B6. Can't hurt. I got the feeling that if it had gotten much worse they would have reduced the Taxotere dose a little. So be sure and mention that. Are you sticking your fingers in ice during the time the Taxotere is going in? That can help prevent it some.

SpecialK · October 2013

I took a 3-pronged approach to stave off potential neuropathy - 30g of L-Glutamine, a B6 capsule, and 1500 mg of Acetyl L-Carnitine during chemo. My PN resolved by the next tx until #5, then it stayed (hand/feet and tongue) but resolved by a couple of months PFC. Jennie is correct on the low hemoglobin affecting the muscles. Often, your hemoglobin is dropping as you progress through chemo, like a stair step. It drops right after a tx, then comes up a bit, then drops farther with the next tx and does not recover as well. That is why the muscle fatigue is cumulative. Take a look at your CBC next time and look for the hemoglobin number. The larger the muscle (thighs and glutes) the more you will notice it - but all of your muscles are affected. This is something that improves relatively quickly when you finish chemo - most report great improvement at about the 6-week point. You can try to improve the red cell count by eating protein and iron-rich foods but it is a SE that you really just have to ride out.

Mellie289 · October 2013

Thanks for the further responses.

Why do MO's refuse to listen to symptoms presented by patients of SEs just because they aren't on the list they got, probably when the drug was first introduced based on a clinical trial with a limited number of people? My MO seems to think nose bleeds I had during my first two cycles weren't related to chemo, but they showed up on exactly the same 3 day window, and I had to fight to keep the nose bleeds from happening the last two cycles with very frequent spraying with a saline nose spray (I had some very minor nose bleeds, but not the ones that lasted 1- 1 1/2 hours like the previous two cycles).

SpecialK - I haven't seen tongue on the list for peripheral neuropathy. This last cycle, I definitely had a few days of tingling/numbness there. Strangely, later in the cycle than the hand symptoms appeared. SEs are weird! Good to know to include that in my list of PN symptoms tomorrow.

I just started taking some L-glutamine this week and I expect to get some Vitamin B6 (Amazon) by Thursday. I like the idea of not taking lots of supplements while the chemo is still in my system anyway, so Friday will be a good day to start the B6 after my Wednesday infustion. I think I have some L-carnitine already but was unsure about using that since there was a study out that showed it could make neuropathy better or worse depending on the time frame.

Jennie - I haven't iced my fingers. I see conflicting things about the as to whether it helps with neuropathy. I thought it was more for saving the nails and mine have so far hung in okay with lots of nail polish to strengthen them (they are peeling underneath). The initial MO I consulted with (first opinion) said no for icing and it didn't come up with my chosen MO.

I'll be sure to check about my RBC count tomorrow. I haven't gotten copies of my bloodwork in a while and originally, RBCs weren't dropping. Maybe they took a nose dive cycle 3 and I didn't know it. I've been skipping some weeks for testing since it seems nobody in my onc's office notices or cares if I get blood drawn in the two weeks between my treatments unless I phone them to ask about the results. I wanted to save my arm the extra needle pokes if it's not necessary and the exposure to potentially sick people in the waiting room at the diagnostic center.

I'm thinking that I need to be eating some liver in the next few weeks.

SpecialK · October 2013

mellie - sorry I didn't post back after your answer! Your nosebleeds are most likely due to dropping platelets and soft tissue irritation - platelets are affected by chemo, but regenerate quickly as they are the blood cells with the shortest life span in the body. Almost everyone I know who had chemo did have nosebleeds - it is a very common side effect. The RBC can drop but the number you should really look at is the hemoglobin number - it is the direct effect on fatigue in the large muscles, not necessarily the RBC number. The anti-neuropathy cocktail includes Acetyl L-Carnitine, which is a little different than L-Carnitine. Here is a link comparing the two (in rats, lol!):

http://www.ncbi.nlm.nih.gov/pubmed/15591009

You are correct on the nail icing, I have not seen any info indicating that there is an anti-neuropathy benefit, but there is a trial for the icing of nails to prevent damage and lifting.

6cats · October 2013

mellie289 -- I'm one of the rare "tip of the tongue, lips and gums" numbness folks... yes, according to my MO, it is not common, but some people have numbness there as part of the Taxol neuropathy. Maybe we should start a "tip of the tongue" club!!

Winner13 · March 2014

I am glad to see this particular thread. I am heading into Round 5 of 6 and this week I got hit with major muscle fatigue. To the point that regular daily activities like typing on my computer make my arms feel like I have been lifting weights. I have recovered pretty well up until this round and it doesn't make it any easier going into treatment on Friday.

Thanks all for sharing.

Geosomin · March 2014

Thanks -I am glad to read about this. It puts my mind at ease a bit. I'm going into my last (yay) taxotere treatment on friday and this last one really wiped me out energy wise, gave me some neuropathy on my face, hands and teeth (yup...tingly teeth. Good times), and made my calves and leg muscles ache terribly like I'd done a serious boot camp workout (like I used to be able to before chemo) despite me not having much energy and not being able to do any exercise up until then. Very strange. I am glad to only have one left, and relaxed to know that this is "normal"...going from being very fit and active to having my daily activity being walking across the room for a nap is very strange indeed! I miss my muscles...

fredntan · March 2014

my doc does labs twice week. I'm in my anemic phase now. my current chemo brings my counts down. was supposed to get blood today, but they were booked. so tomorrow. another sign of anemia is being slightly short of breath. though I don't have that now. just muscles burn when I use them.

AmyQ · March 2014

Oh ladies, I feel so badly for you. I recall muscle fatigue so badly that I had to lean over the bathroom counter to support myself while brushing my teeth. As everyone has said, it does go away, thankfully. Icing fingers and toes is suppose to help your nails from lifting and it worked for my fingernails but I did lose 4 toenails, several months PFC - go figure.

Life really does improve after chemo. I will be thinking of you as you finish up your treatments and start to get stronger.

Amy

MellowYellow · August 2014

finished chemo, six rounds, about ten days ago. My legs feel like I've run a marathon, very frustrating as I haven't been able to walk my dog for about a week. Fortunately, I have a daughter who will do it, so puppy doesn't suffer. I always seem to get crazy temperature fluctuations that don't amount to an infection but can suck the life out of me when I'm hot. The Neulasta makes me ache for days. Fingers and toes so sensitive I can barely do up my pants. I do know all these things will gradually go away, but with each treatment they seem to hang around longer. Oh well, I will survive. Looking forward to these side effects passing and having energy again. Never thought I'd be grateful for my extremely thick eyebrows, but I still have a bit of a brow line.

Moderators · August 2014

Welcome to our community MellowYellow. You will see quickly that you are not alone here.

Thinking of you!
The Mods

Muscle Fatigue/Exhaustion

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