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Post Treatment Fatigue

lyolan1
Posts: 95
Joined: Jul 2009

Hello Everyone,
I hope that this message finds everyone doing well with treatment and recovery. I am 7-8 weeks out of radiation and chemo. I had my peg tube out a few weeks ago. I was really feeling quite good. So good, that I worked (2) days on a stone masonry project with my crew last week. I am from the Boston area and the weather was on the mild side. Well, today is Monday, and I have felt exhausted ever since those (2) days of work, I never left the couch today. My question is: Does the fatigue last forever? Is it from too much too fast? My body is stiff and my shoulder joints are especially painful. Also, my torso feels very cold, all the time. Comments appreciated. Alex.

SASH's picture
SASH
Posts: 276
Joined: Apr 2006

It takes time to recoup from the assault your body went through in treatment. It can take months to get back all your energy. Everyone is different and it took me about 2 1/2 months after I completed all my treatments to even think about going back to work. When I did go back, I started slowly and gradually made it back to full time. There are still times that I am tired on the weekends due to poor sleep habits during the week and I have to spend time just relaxing and taking naps. When you need to rest, rest. When you need a nap, nap. When you are feeling good, don't over due it.

pk's picture
pk
Posts: 192
Joined: Aug 2009

You are just starting to come back from the torture your body has endured. My husband is 12 weeks out and has really noticed a change for the better. At 2 months he was feeling much better, but the last 3 weeks even better. He's actually in SD pheasant hunting. So stay optimistic, but don't overdo - your body needs rest to heal.PK

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

I'm 14 months out from treatment (11 months out from a modified radical neck dissection) and I still have a tendency to get tired in the afternoon. If I'm busy or have something occupying my time and attention, I don't notice it -- but if there's some down time, I suddenly find myself yawning and ready for a nap.
I'm a whole lot better, though, than I was a year ago. I'm sure you'll see improvement as time goes on.

-Jim in Delaware

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

I agree with SASH & pk it all take time to come back keep active but don’t over do it, start little by little and give you body time to build up again. Also to be on the safe side have your doctor check your thyroid gland to make sure it is working 100%, sometimes right out of treatment is will stop producing a much needed hormone that keep the body balanced. Take care and God bless

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

I must be unusual but it has been two and a half years since completing my treatments and I still am fatigued. There is no returning to what I once did. At least not right now.

I can mark each month in my recovery with more and more desire to get better. So much so that I took on more than I was able to do. I laid sod on my lawn. I took on a new flower garden. Made a small vegetable garden with my own soil mix. Each one of these projects made me feel worse. It was harder than I thought it would be. It didn't look like I thought it would be. Nothing was as I thought it should be. Each time I got weaker and depression came to be a comfort zone. All I am saying is sometimes to much is to much. I have no immediate need to work. Why did I force the issue? I think I paid in the long run with diminished ability to get better.

Just take your time. Keep eating, hydrating, and make sure that your thyroid levels are at the appropriate levels just as Hondo suggested.

Landranger25's picture
Landranger25
Posts: 207
Joined: Nov 2009

Alex, I am glad to hear you are trying to get back to work. I agree we are all different and must recover accordingly. One thing I do know is, I know me. I know what I need and what makes me feel better and those are the things I do. Not only does this help me physically but it helps me with my attitude as well. I too have stiffness in my shoulders, trap muscles neck and jaw. (Rads I'm sure) In the shower every morning I open my mouth and strtch my jaw as far as possible, then move to neck. Stretch up and down, side to side as far as possible. Reach with my arms stretching those traps and lats in my back. I will work through this. I haven't tackled any big home projects yet like some of you, just the basics to help my wife like laundry and dishes, vaccuming and trash out. Will have to clear snow here soon. (Michigan) I've mentioned hockey with my daughter. Keeping up with thirteen 11 and 12 year olds on the ice couple times a week sure helps. (She plays on a boys team!) Anyways, keep trying! I believe we appreciate more the things that we had to work harder for or that we didn't come by easy. Keep trying and do the the things you know work for you.

Mike

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

What you are going through is perfectly "normal" and it will get better I promise. Two things to focus on short term:

1) double up on your hydration. IMRT continues to work for awhile and if you get even slightly dehydrated it can enhance fatigue.

2) Next bloodwork have them check your TSH level. If it is high you are probably Hypothyroid meaning you will need to start taking Synthroid or Levothyroxin. It is very common in HNC radiation-treated patients that the Thyroid gland is compromised over time. Mine showed up at about the 18 month mark. Once I started the Synthroid my fatigue improved within a week and was reduced by 90%. It was a miracle. I felt like a new man and still do several months later. So check that too.

Wow, you have been through a lot and held up very well. Happy Holidays to you and your Fam. From Mexico...............Feliz Navidad y Ano Nuevo a todos.................JK

TIM_WWJD
Posts: 38
Joined: Jan 2009

I am six months post treatment and want to add that you need to check your TSH level more than once. I had fatigue after treatment so at a month I had my throid checked and it was fine. Doctor told me it was just my body healing, which was probably true. I got better but slowly and I finally asked a couple months ago to have my TSH checked again and it was way high. My throid apparently worked for awhile and then shut down. I started synthroid and like was said it was a complete turn around until a couple weeks ago. I came crashing down because the synthoid was working too well. They cut my dose in half and it feels like I am back on the right road. All this to say once they start adjusting make sure they monitor you regularly. Good luck and God bless.

lyolan1
Posts: 95
Joined: Jul 2009

Happy Holidays to our Crew, I hope everybody is doing well. It has been a while since my last post. I checked my thyroid and blood tests all came back fine. However, I was so beat durring the holidays. Today, for some strange reason, I felt pretty good. I went bowling with my family and my younger sister's family, ten pins, three strings. I was on the ground for 2-days. Today, I feel pretty good, who knows. Hopefully, it will be a series of 2 steps forward and 1 atep back. I just want to get back to living. Alex.

pk's picture
pk
Posts: 192
Joined: Aug 2009

You are getting there. It takes time. My hub is 3 months out and the fatigue is not nearly as severe. He's eating EVERYTHING, has been pheasant hunting twice. Food still tastes weird and of course he still has to spit junk out every morning but...... all in all he's doing very well. PET scan tomorrow. PK

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

HI Alex,

I had Chronic Fatigue many years ago and am now 14 weeks post treatment and find the recovery similar.

I find it's like you are taking off on a motorbike with a busted fuel gauge. You are unsure how much juice you have in the tank !

Your body will allow you to go into reserve fuel 'at the time' but you will have to pay extra for this extra fuel you used later i.e. the fatigue you get after certain activities. I was often knackered for a few days after over exerting myself without realizing it.

If you can swim 20 laps of a pool, don't, just swim say 8 and see how you feel the next day. Apply this to other routines or exercise and you will get a handle on it. THe problem is you may not necessarily feel tired at the time you are exerting yourself, but you will feel it the next day(s).

Learn to limit your activity till you understand your level of condition. It will take some time to recover but maintaining 'some' exercise is very important, even if it's just a 30 minute walk a day to start with and then build on that.

Hope this helps.
Scambuster

ratface's picture
ratface
Posts: 1231
Joined: Aug 2009

I assume you were fairly fit if you work with stone? If so you will recover rather quickly. I believe getting strong is proportional to your pre-cancer level of fitness. That said you may be pushing it a little. Why not try some exercise at home, some cardio and maybe some light weight training. With exercise you can easily time and measure improvement and that is, as previously mentioned, a huge psychological boost. If I remember right I was a couple weeks ahead of you in treatment. For comparison I can now spend 30 min on a treadmill between 3-4 mph. I can do 30 min of light areboic exercise with small 3 lb weights for thirty min. I just recently stopped napping during the day. I am also cold all the time.

fishingirl's picture
fishingirl
Posts: 188
Joined: Nov 2009

You and me both, Ratface!! I am cold most of the time. I'm turning the heat up in the house, and my husband is behind me turning it down! lol! I'm cold most of the time because I don't have much meat on my bones yet. Getting there, but it's a slow go:)
Cindy

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

I am still fighting fatigue and it has been almost three years. I lost a lot of weight and am only now regaining strength. I think I did to much to soon. Each time that I thought I was getting better I would over do it. It would set me back in my recovery. I tried to push past it by trying harder. More frustration and more set backs.

I truly believe that I am getting better... finally.!!! I am not over doing it any more. Doing a little is better for me than doing a little bit more and paying for it later. One must try to get better when in recovery but it is important to understand the limits that only the individual can determine. I am sorry that I had a hard time understanding what has been good and what has not been good for my recovery. Time helps heal but it helps more if you use your time to make it have value that appreciates.

lyolan1
Posts: 95
Joined: Jul 2009

Hi Ratface, I am on a roll with (3)days of feeling good. I agree with you on many points. I felt so good that it was all behind me. Wrong. I was absolutely freezing for about a week and could barely get up. I am going to take your advice. However, I think that periodic fatigue is part of getting better. Did you get your p-scan done yet. Stay in touch, fight on and stay strong. Alex.

ratface's picture
ratface
Posts: 1231
Joined: Aug 2009

Fishing Girl I'm going to ask for a thyroid test. I've never been this cold in my life. Granted it has been hovering around 5 degrees here most of the week but still I better get it checked out.

Alex I got scanned at 4wks and and there were still some things questionable. Too soon too tell really. I've had a neck disection since and pathology from that has been negative. I'm not scheduled again until early February. I try not to think about it too much and Hope February is a good month for me.

I had an exercise routine prior to being diagnosed so I was in decent shape and used to exercising. I am 40 lbs lighter now so the treadmill is actually easier as well as the stomach crunches.

You RED blood cells may still be low and that would mean you are still anemic and would explain your fatigue. Buy youself a cheap multi vitamin with iron which will speed up the anemia recovery.

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