International MPN News, Science & Opinion

Fatigue Edit

Fatigue Reduction Strategies

 

I manage to function.  I will not give into it anymore than I have.  I have started walking a mile at night whenever possible.  I pace myself with house work. When I get a little tired, I sit down and get on the computer or read; after 20 minutes I am usually ready to go again. When I am away and in a colder climate (I live in Florida), I find that I have quite a bit more energy and am able to do quite a few things as long as I have a little down time. I never take naps but find that I need nine hours of sleep a night.

I keep alert with the news, newspaper, reading, computer, etc.  I try to see my friends and go out for lunch or a movie every so often.  I started swimming again a few months ago, but it is too cold now.  I am hoping to keep my walking up every night.  – BQ

 

The best thing for me to beat fatigue is to stay involved and passionate about my work. – MM

 

I have been on Intron from the beginning. Over the past years night sweats and tiredness in the head developed. I have no solution. I sleep more hours. I run three times a week. – EC

 

Having interesting work or activities helps one either overcome or not think about any fatigue. In addition, if you need a nap, take one.  I do my own house and yard work.  I also signed up for a one-hour exercise class twice a week.  (I hate it, but know that it is good for me). Often the psychological challenges are much more of an issue, especially at diagnosis.  – HA

 

I take Pegasys for my MPN, which can also cause fatigue. I have learned not to beat myself up over it and try to find ways to enjoy the lazy days. If I need a nap, I take one.  If I am too tired to attend a social event, I try not to let it get me down. I am hoping that some regular exercise helps and am heading out for a two-mile walk right now!  – MO

I used to read Jeremy’s comments about exercise and thought he was crazy but it has helped me.  I also schedule things.  I spread out the week now that I’m retired, so that I don’t overdo it on any given day which then makes me too tired to do anything else.  That way I can still do most things.  I have also looked at my priorities and realized if I want to do something for fun, then housekeeping, etc. can wait.  I have also learned to say “no” which was always hard for me.  Overdoing it makes me pay sometimes. – JC

The fatigue made it difficult to stay motivated. So, four years ago, I challenged myself. I picked something quite foreign to my comfort level. I researched and selected a running program. Cycling and swimming were my usual activities of choice. I never really ran except way back when in high school. I had wanted to participate in a triathlon for many years even before my ET melodrama. This was still my goal, but you need to be able to run to cross the finish line for the final event within a triathlon! I started a walk/run program. I registered for my first 5k to keep myself training. I built my way up to a 5k endurance race and ran that race.  I didn’t break any records but it felt good. My mood improved even more and the weight I had added the first few years following my ET diagnosis started to drop.

I stepped it up and registered for a two-day, 250km bike ride the following year (2011) that was a fundraising event benefiting cancer research. There were many built in motivations with this plan to keep me training. I continued to run several times a week and swim at least once a week. A few months prior to the big cycling event, I knew I had trained well and could ride the distance. But more significantly, I realized that I was sleeping through. – SG

 

As disease progresses, so does the fatigue.  My short time fix is meditation, prayer, drinking lots of water, and some walking. Exercising is difficult as it burns up what little energy I do have. Daily vitamins and blood boosters such as the elixir found in natural food stores help. – DP

If I exercise, I just ache so much afterwards.  My daily/weekly routine pretty much consists of taking care of nine dogs, my 90 year old mom, keeping the house straightened up, laundry, cooking, etc.  I keep this pace up until I get so tired that I just take a day and sleep as much as I can. I never seem to feel refreshed though, and I often have trouble finding energy to do what I have to do. I am obese which doesn’t help. – MH

There has been nothing that helped the fatigue. Doctors have thrown antidepressants at me because they didn’t know what else to do. One hematologist told me to touch my toes, and when I did, the doctor told me that I was not that fatigued. Another doctor said if I had a two-year old to run after, I couldn’t be fatigued. Not only do we suffer from debilitating fatigue, but we have to deal with doctors who lack understanding. – MM

 

I’m still grappling with ways to fight fatigue.  Some days are better than others, but it seems to always be lurking around waiting to pounce on me.  I am a Montessori school teacher with 24 students between the age of three and five.  Children this age are very active, demanding, and need constant monitoring.  Once I open the door to my classroom, I’m up and running and don’t have time to even think of fatigue, so just keeping busy (or HAVING to keep busy) helps to keep the fatigue at bay.  The problem is that after the school bell rings to dismiss the students, the fatigue hits me and I feel totally wiped out!  I can hardly find the energy to pack up my things to go home!  – EL

If I have to get out early I always blend some fruit together and also drink a coffee to wake me up. Fruit really helps to wake you up and make you feel lively. When using the car I try to park a little bit away from where I want to be so that I walk and get the system going. This helps me feel alert. On days when I am tired, I must eat sensibly.  Quick fixes are definitely not good. I don’t go for foods with a lot of sugar or starch. They just make me even more tired. Yoga is good as it helps me have good posture, which really does help. Any exercise you like doing will help. Motivating myself is hard when I feel very tired. I have to keep reminding myself of how I will feel better for doing it. –  MA

What I have learned over the years is to carefully listen to my body and stop to rest when I am feeling tired.  The main thing is not to push myself beyond my endurance because when I do I pay a big price and end up feeling extremely exhausted  the next couple of days.  Of course a really good diet helps with fatigue.  Also, it is imperative that I get at least seven hours of good sleep a night. These may sound like simple, common sense ideas but I cannot stress how important they are to live. – ML

Fatigue is still my biggest problem in SCT recovery.  I found out about my disease in October, 2011, and had the transplant in April, 2012. Doctors said I had the blood cancer for at least ten years, and it was at “end stage.”  Without the SCT, I had less than a year to live. I just got through the fatigue with a “can do” spirit, even at the advanced stage. – PB

I start every morning with a mile walk. I don’t know how much it helps because I did this before being diagnosed with ET, but I think it helps get things moving for the day. It is good for me and my dogs. – M

I am 76 and do not know if I have any fatigue or if it is only the normal aging process. I cannot take stair steps two at a time anymore as I have for most of my life.  I do about ten minutes of exercise most mornings.  I have had PV for about 8 years but am not symptomatic of most of the normal complaints.  I notice that when I do normal exertions that I get tired after about 20 minutes. – LO

 

On bad days, when it’s all I can do to get out of bed, I will sometimes stay in bed. That’s right, there’s nothing like 12 hours of sleep for a couple of days in a row to recharge my batteries. I’ve accepted that I’ll never have the energy that I had before I got sick.  I’ve learned to appreciate the times that I feel like getting out of the house and enjoying life. I echo the others with advice to exercise, but nothing regimented. I like my activities to be fun and interesting. – DM

Here are my key coping strategies (not in any particular order):

1.  Use a sound machine that makes white noise.  While I still have difficulty falling asleep, once I am asleep I tend to sleep well.  Sometimes I tell my hubby to turn the machine off so I can wake up and get out of bed!

2. I have sleep apnea, so I use a CPAP machine at night.  I can’t say that I like using it, but if I go more than two to three nights without it, my fatigue definitely worsens.  I wonder how many people with sleep apnea go undiagnosed.

3. The thing that helps me the most is Concerta, an ADHD medication.  It provides a boost of energy AND also diminishes my “foggy brain” symptoms.  I can focus on tasks much better and don’t feel the need to close my eyes for a few minutes.  Apparently, this drug has great street value, so I must meet with the psychiatrist every three months to check in and get refills.

4. Regular walking helps boost my energy and general well-being (even if I need a nap after walking one to two miles).  I haven’t been able to walk much the last few months because of chronic, painful, intermittent inflammation in my feet (perhaps erythromelalgia?)  I can feel the difference. I’ve tried yoga a few times and really should give it a fair shot.

5. Laughter!  Believe it or not, I find that a few real good belly laughs EVERY DAY go a long way to boosting my energy and reducing my aches and pains.  I seek out humor in books, YouTube, movies, and my two hilarious teenagers. – MP

I do sport activities twice a week.  It helps for fatigue but also to lower stress from work and from being sick, thus less relieving fatigue. I take a 15-minute nap when I have the opportunity.  I also changed work to have less stress.  – AB

Mind over body is important.  I do not readily accept that I CANNOT do something that is important to me, whether it involves kids, job, volunteer work, socializing, cleaning (not always my favorite), projects, etc. Just do it. Once my make-up is on, I’m out of here. Caffeine: A good cup of coffee or tea really helps.  At least I’ve convinced myself that it is so.  Pacing: I am not a napper (mom said I gave them up at 6 months), but try to have two days a week that are less busy.  A day with veg. time really helps, especially in between really packed days.  Spending time with others who have more struggles than I have and who need a hand helps.  Walking: I park at the back end of parking lots and trudge across to the store.  Laughter: Humor totally invigorates me. I actively pursue things that make me laugh. – KV

By introducing new nutritional, weight lifting, and cardiovascular exercise changes to my life, I have profoundly improved the quality of my life. I have reprogramed my mind and body to focus on making my body whole again. Today I have zero fatigue and am able to compete in business with anyone thanks to the diet and exercise changes I have made. I don’t enjoy getting up some mornings at 5:30 AM to make my way to the gym, but I know how great I feel when I have completed my workouts.  I know if I skip my exercise program, as I have at times when traveling for business for extended periods of time, within three to four weeks fatigue slowly creeps its way back in to my life. I now take my workout clothes with me so I can continue exercising.
 – JS

For me, the key is engaging in regular physical activity, at least 5 days per week. I make sure I get at least 30 minutes of aerobic activity, at a moderate or vigorous pace, and also some lifting or core strengthening. Exercising regularly not only fights fatigue directly, it actually helps me reduce stress and sleep better, which have indirect effects on my alertness and function. I also found that eating a good breakfast with some protein, and having nutritious snacks between meals are essential to maintaining stamina throughout the day.  Also, when I was iron deficient, it was much tougher to fight fatigue and associated iron deficiency-related mental slowing.  Being on interferon has been a mixed blessing; not needing phlebotomies allowed me to restore iron levels to normal, but I am pretty sure interferon is contributing to fatigue. I don’t take any supplements, though I do take a high potency multivitamin and a bit extra vitamin D3 (1000 units). – MG

I have a siesta daily, no matter what, usually around 3pm. Friends know about this, so no one calls between 2-4pm.  If I’m in town or have an appointment and can’t see myself getting home at that time, I lie down in the car, and always leave a duvet and pillow on the back seat.  Often it seems I need a protein hit first in the morning and particularly in winter, I might have dinner mid-day, and a glass of red (which never stops at “a” glass!) I’m not shy of taking a couple glasses in summer either. I relax/rest often, cat-nap, and get up afterwards with energy for five to six hours of further activity.

I love my food. I love my garden. I enjoy long walks by the shore. I enjoy theatre, meeting friends, etc.   Living is the key. Enjoy life to the fullest as long as you can. It’s not about caution now!  – DH

I had the fatigue we hear of so often but one day in desperation I went for a bike ride.  Within twenty minutes I found no fatigue, so continued for two hours. On returning home I was literally buzzing. The key seems to be aerobic exercise (if you are able and your doctor approves.)  Endurance exercise seems preferable.  Since I increased my rides I have not had fatigue for four years.  Exercise is so important to me that I now consider my rides part of my medication.  – JT

If I force myself to work out, my fatigue goes away about 10 minutes in, and this relief lasts for quite a while.  Swimming seems to help the most, but it is the most worrisome due to the itching issue.  Biking and running help too. I don’t know why, but there seems to be a strong connection between exercise and fatigue for me. – MI

 

 

 

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