MPNforum Magazine

Fatigue reduction strategies

The Fatigue Project– the first field reports

“Fatigue is a kind of pain,” wrote one patient,

Fatigue, by far the most common MPN blood cancer symptom, carries heavy costs.  There are the physical impacts, the lethargy causing reduced appetite, loss of skeletal muscle, depression and longer term cardiac and organic impacts.  And, like pain, there are the hidden costs of our inability to function at an optimal level.  Fatigue keeps us from showing up —  affecting family, work, enjoyment of life as well as physical well-being

Is there anything we can do about it?

What follows is the first of the the Fatigue Project reports:  The testimony of MPN patients, giving witness to techniques that have worked to modify the effects of pain…and some that haven’t.   The object:  To derive a comprehensive plan staged for MPN patients at all levels, stepped from small beginnings to a full lifestyle program to maximize our potential within the challenges of our MPN. 

It started with a generous offer from The Mayo Clinic’s Dr. Ruben Mesa to help us explore strategies to reduce MPN associated fatigue.  MPN patient participation was invited via a blast e-mail to patients and  Facebook posts.

To participate in the Fatigue Project, click here.

We’ve had a clear picture of the extent and impact of MPN fatigue at least since 2006  when the landmark study partly designed and written by Joyce Niblack was published.   The work of Mesa et. al. on the MF Symptom Assessment Form, published in Blood in 2011  helped define the  extent and nature of impairment caused by MPN fatigue.

Now we can  up go the next step and do something to relieve those symptoms. By sharing our experiences we can help caregivers and healthcare providers produce a stepped, clear and verifiable program we can all follow.  

The Fatigue Project

We’re not trying to frame an hypothesis to explore the causes of fatigue….simply uncover the most effective strategies to overcome it.   There have been conclusive studies demonstrating the lack of association between anemia factors like low hemoglobin levels and fatigue and yet, for many of us,  falling levels of Hg still correlate with our perception of increased fatigue.  There’s speculation that depression and other psychological and emotional impacts play a role in MPN fatigue.

 What is indisputable, however, is the effect Fatigue plays in our MPN life.

MPN fatigue is capable of rendering us diminished or even comatose, MPN-associated fatigue impacts every aspect of our lives.  While it may be crucial to determine the cause of this fatigue —  just as  it has proven useful to quantify and characterize it — nothing comes close to the need to relieve this crippling impact on our social, economic, and spiritual lives.

Thus, leafing through these e-mails from fellow MPN patients, most of us are far from objective. We are looking for answers. We’re hoping to find effective practices that can be turned over to Dr. Ruben Mesa and his associates at the Mayo Clinic and, hopefully, others at other institutions, to structure some means to test the relative effectiveness of one or more strategies to relieve fatigue.

So far, all input is qualitative. Anecdotal. And, from a rigid, scientific perspective, therefore, unreliable, not reproducible.  We could use a more carefully studied, reliable and tested tool. However,  the reason to pursue this research is not to get a kosher seal of approval on one or more techniques but to help us select an optimized therapeutic path to lead us out of a fatigue- dominated life.

A note on the Strategies, below:  In the interest of presenting clear capsule conclusions and tactics, we have edited these first patient submissions to the Fatigue Project, . This is only a preliminary step.  (The full text of all submissions has been archived.) We clearly need more input differentiated by patient demographics, disease type and relative progression.  But it’s a beginning we can build on and, best of all, try out right now.

As you’ll see reading these abstracts, there seems little doubt that exercise helps. It’s a position strongly endorsed by the research. The impacts of exercise on physical and mental health seem inconvertible. Question is how does that apply to us?

Some of us have serious physical limitations. Some of us are reluctant to spend limited productive time curling dumbbells or riding bikes long distances.   A definitive, staged, exercise program, prepared by professionals, perhaps funded by government or foundation grants and accompanied by a  step-by-step instructional video could be the first fruit of this effort…even before the research itself is fully designed, the cohort recruited and questionnaires  deployed.

 The causes of blood cancer fatigue may be varied and unknown. What is indisputable, however, is the effect Fatigue plays in our MPN life.

 Capable of rendering us diminished or even comatose, MPN-associated Fatigue  widely impacts  our lives.  While it may be crucial to determine the cause of this fatigue —  and it has proven useful to quantify and characterize it — nothing comes close to the need to relieve this crippling fatigue that impacts our social, economic, and spiritual lives.

To participate in the Fatigue Project, simply send an e-mail to ourMPNforum@gmail.com. And type FATIGUE PROJECT in the Subject box.  You will be added to the study cohort and, when the research is designed you will be sent the full questionnaire.  

– ZS

The Strategies

I do manage to function as I will not give into it anymore than I have to.  I have started to walk a mile at night when something else does not interfere with it.  I pace myself with the house work, when I get a little tired I will 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 do have quite a bit more energy and am able to do quite a few things as long as I can 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 do try to see my friends and go out for lunch or a movie every so often.  I started back to swimming a few months ago, it is too cold now.  I am hoping to keep my walking up every night. – BQ Florida

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

Have been on intron from the beginning. But over the past years night sweats and tiredness in the head developed. I have no solution. I sleep more hours. I run 3 times a week.—EC

 Having interesting work or activities helps one either overcome or not think about any fatigue. In addition, if a nap is needed, then take one. I do my own house and yard work but also signed up for 2-days a week 1-hr. exercise class (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. Hoping that some regular exercise helps….heading out for a 2 mile walk right now :-)  – MO

 I used to read Jeremy’s comments about exercise and think 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 over do 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, housekeeping, etc. can wait.  I have also learned to say No which was always hard for me.  Over doing makes me pay for sometime. – JC

The fatigue made it difficult to stay motivated. So, 4 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! So 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 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 2-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, some walking.  Exercisingis difficult as it burns up what little energy I do have. Dailyvitamins and blood boosters such as the elixir found in natural food stores. – DP

 If I exercise, I just ache so much afterwards.  My daily/weekly routine pretty much consists of taking care of 9 dogs, my 90 yr old mom, keeping the house straightened up, laundry, cooking, etc.  I keep this pace up til 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 justgetting the energy up to do what I have to do. I am obese which doesn’t help either. – MH

 There has been nothing that helped the fatigue. Also Dr’s would throw anti depressants at me bc. they didn’t know what else to do. One hematologist told me to touch my toes and when I did, told me that I was not that fatigued. Another Dr. said if I had a 2 yr old to run after, I couldn’t be fatigued. So not only do we suffer from the debilitating fatigue, but we have to deal with Dr’s who lack all 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 (three, four, and five year old) students.  Children of 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 I think just keeping busy (or HAVING to keep busy) helps to keep the fatigue at bay.  The problem is: 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 have a coffee to wake me up. fruit really helps to wake you up and feel lively.,,,,,,When using the car I try to park a little bit away from where I want to be so that I can walk and get the system going, find it helps me to feel alert….Find on tired days, must eat sensibly, quick fixes are definitely not good, so mustn’t go for food with a lot of sugar or starch just makes me even more tired…Yoga is good, as it helps me have a good posture, which really doeshelp. Any exercise you like doing will help, although 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 and 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 for the next couple of days .Of course a really good diet helps with the fatigue. Also, it is imperative that I get at least 7 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. I was told that 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 advance 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, and is good for me, and my dogs.- MM

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 and learned to appreciate the times that I feel like getting out of the house and enjoying life. So, I will echo the others with “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.   A sound machine.  It 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 2-3 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 3 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 1-2 miles).  I haven’t been able to walk much the last few months because of chronic, painful, intermittent inflammation in my feet (perhaps erythromelalgia?), and 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 twice a week – it helps for fatigue but also to lower stress from work and from being seek, thus less fatigue. I do a 15 minute nap when I have the opportunity I changed work to have less stress  – AB

 Mind over body…I do not readily accept that I CANNOT do something that is important to me. Kids, job, volunteer work, socializing, cleaning (not always my favorite), projects, etc..Just Do it…Once my make-up’s on, I’m out of here.Caffeine..A good cuppa 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 6mos.), but try to have 2 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 need a hand…Walking.I park at the back end of parking lots and trudge across to the store.   Laughter…Humor totally invigorates me. I actively pursue the things that make me laugh.  – KV

 By  introducing new nutritional, weight lifting as well as cardiovascular exercise changes in to my life I have had a profound improvement in 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 dont enjoy getting up some mornings at 5:30 AM to make my way to the gym to start my workouts 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 I am 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 strenghtening. Exercising regularly not only fights fatigue directly, it actually helps me to reduce stress and sleep better, which have indirect effects on my alertness and function. I also have found that eating a good breakfast, with some protein, and having nutritious snacks between meals are also essential to maintining 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 for that time, I lie down in the car, put the passenger seat right down and always leave a duvet and pillow on the back seat…Often it seem I need a protein hit first 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. And I relax/rest often cat-nap, and get up afterwards with energy for 5/6 hours of further activity…I love my food. I love my garden. I enjoy long walks by the shore. And I enjoy theatre, meeting friends etc., etc.   Living is the key. Enjoying life to the full 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 ride , within 20mins I found no fatigue so continued for 2 hours on returning home I was literally buzzing. The key seems to be aerobic exercise (if you are able & your Dr says ok) preferably endurance also.  Since I increased my rides I have not had the fatigue now for 4 years . In fact it so important to me I now consider my rides as part of my medication.  –JT

If I force myself to work out (swimming seems to help the most but it is the most worrisome due to the itching issue but biking and running help to)  my fatigue goes away about 10 minutes in and lasts for quite a while. I don’t know why but there seems to be a strong connection between exercise and fatigue for me…-MI

The first symptom of fatigue is when I wake up feeling generally tired.  I’ll feel tired until noon, then the first wave of real fatigue hits.  Usually the waves intensify greatly around 5 pm. The fatigue will go on for 2-3 days and then subside.  It’s worse in the winter – then I’ll cycle between fatigue and normal every few days for weeks.  In the summer, I can go for months with no fatigue….Exercise does not help my fatigue.  I keep trying, since others report that it helps.  I stay pretty active despite the fatigue, but exercising while fatigued just makes me more exhausted.  I’m sure staying in shape makes it easier to bear the fatigue so I just keep pushing through it…I keep thinking that one day there will be no more fatigue but it’s been with me for several years now and sooner or later it always comes back.  –EJ

I was diagnosed with essential thrombocythemia (JAK2 positive) at age 62 … am now 67 and on 1,000mg/1,500mg hydrea (alternating days). Fatigue has been a constant problem for me; however, I try to do all of my energy-zapping tasks prior to my first dosage of hydrea each morning. I’ve found that little 20 minute naps give me renewed energy, if only for a little while. – SW

Fatigue was the most prevalent symptom when I was diagnosed with ET at an annual physical.I thought it was just old age approaching. I was 64. I am now 77 and on HU. If it is really bad, only rest and sleep will help, but staying busy helps. I find that now that I help my single parent son with his two children, homework and delivering, I feel much stronger.
Hope it continues. – GH

MF12 years.
Rain or shine I go for a long walk.
I will be tired coming home but the fatique is gone.
Eat well ! – NA

After 10 years with PV, I have good days and bad days. I don’t ever have a lot of energy, but when I do have some, I like to go for walks, play with my cats and spend time with my husband. We recently started kayaking. He teases me and tells me how slow I am while he sits and waits for me to catch up. I keep my mind occupied with art and books. 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 and learned to appreciate the times that I feel like getting out of the house and enjoying life. So, I will echo the others with “exercise”, but nothing regimented, I like my activities to be fun and interesting. -DM

To tell you the truth I have fought through fatigue my entire life. I was diagnosed with PV in 1998 at 51 years of age. How I combat fatigue is by going to the gym every day, walking my dogs 2-3 miles a day, eating properly…organic as much as possible, avoiding processed food. I feel great every day and have no lack of energy in spite of the fact that I am most likely now progressing to MF. Hope this helps, – KL

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 minute – LO

My husband relies on 5 hour energy drinks and V8 Energy drinks. He is typically more active than most people without MF! – LJ

Walking daily, no matter how fatigued I am, helps a lot. My last hem/onc stressed the importance of daily walks at an appt. I thought He couldn’t possibly understand how fatigued I was. After he told me to stop rolling my eyes, and listen, I did! It has helped for years. – LV

Some things that help:
– giving in and rest for a good chunk of time- for me this was part of learning to accept that I have fatigue, and I have to deal with it
– start moving- even if it is for walks of 5- 10 minutes at a time and even if it feels like my body is too heavy to move through the air.  If I can get to 20 minutes, the fatigue starts to lift.
– meditate (I have several good guided meditations on my iPod- the relaxation and focus on the “breath”, boosts my energy)
– have coffee. lunch, dinner with friends/family who have a sense of humour. A good laugh is very energizing
– in the same spirit – I have learned to do everything I can to avoid negative and unpleasant people – they are a drain anytime, but particularly if you are battling fatigue
– start to learn something – for me it is Tai Chi and a musical instrument. Once my mind is engaged in the effort to acquire a skill- the fatigue lifts
– do something unexpected for someone at least once a day (takes you outside yourself I guess – and keeps you busy thinking of things!)
– I am more vigilant about healthy eating (always was, but more intake of protein has helped)- my appetite goes down with fatigue, so every morsel needs to be nourishing.
– I find it helps to have a good cry occasionally – the release seems to ease the pain of fatigue – I suppose it helps the grieving process related to the loss of your old strong and durable self (this is harder for me to deal with then the diagnosis of PV with the risk of potential problems down the road) – Maureen

I applaud this effort to try to better assess MPN-related fatigue and hope that it yields helpful results. However, I can’t help but wonder if it will lend itself to clinical trial design.  I hope it does.

There are some days when my fatigue is so great that I end up sleeping away the day and I allow myself to do that once in a while. ..Just as those who engage in regular exercise will tell you that they have more energy, not less, as a result of that exercise, I find that getting up and becoming involved in something — whatever that something may be — usually results in my feeling significantly and progressively better as the day goes on.  Even if it doesn’t involve what would normally be considered exercise, just moving around and engaging the brain seems to have a positive impact on fatigue.  It’s likely that this would be difficult, if not impossible, to quantify, other than offering self-scoring scales where the individual reports energy levels or fatigue levels at various times during the day and notes activity levels at the various time points.

Another variable will of course be age.  Since I’ve never had the experience of being a certain age until I reach it, it’s difficult (impossible) to know how much advancing age impacts energy and fatigue levels.  But I do know that I’ve always had a great deal of energy and the ability to accomplish a tremendous amount. And I also know that I’m no longer able to do what I could do not all that long ago. – CO

 You can help make MPN history and help relieve fatigue for MPN patients. Join the Fatigue Project here.

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