Strategies for dealing with MDS Fatigue
January 26, 2019 at 10:37 am #44998Ellen WeissParticipant
Any one have and strategies that help with the extreme fatigue that comes with MDS? Husband diagnosed 1.5 years ago. He is in the ‘wait and see’ category and so far, for the past 1.5 years his numbers have been steady. However, he experiences frequent spells of extreme fatigues.January 30, 2019 at 2:25 am #45014Kathy LynchParticipant
Hi, I was diagnosed with low grade MDS…pretty steady 10.0 hemoglobin for the past 10 months…. I’m also in the wait and watch category. the fatigue is really hard. I haven’t been able to find anything to help….just tired of being tired….but your husband and I are lucky to be “stable.”
Hope people can share their secrets and tricks with us.
All me best to you bothJanuary 30, 2019 at 9:45 am #45015Allan RomriellParticipant
Agree with Kathy, tired of being tired. I am also low risk watch and wait for past 20 months. I try to get enough sleep and take more rest breaks when working around the house, yard etc. But, I am almost always tired and some days are worse than others. I have noticed that I often don’t feel any worse when I am up moving around than just sitting so I try to stay as active as possible. Don’t really have any magic cure, just keep going and try to stay positive. And I am also thankful to be stable for now and try to keep going as long as I can. All the best to everyone suffering with this disease.January 31, 2019 at 12:28 pm #45033tamParticipant
My approach to combat fatigue is to stay active. I have an exercise schedule that I carry out each day regardless of how I feel at the outset. I have an Excel document that I use to track my progress. I find that it is important to have an exercise goal and to track progress on a daily basis. It doesn’t matter at what level you are currently at just try to set a daily goal and do it. As you progress add a bit more to your exercise routine. It can be as simple as walking up and down the stairs in your house five or ten times per day, or walking around the block each day. Having the goal and tracking it daily gives you something to work toward. I have been “wait and see” for 5.5 years now and have not significantly lost my energy level. I work hard it and continually add/change my goals as I progress. I started tracking my exercise routine the first day after my MDS diagnosis. Daily tracking helps me understand how my body is changing with age and with the disease. Good luck.January 31, 2019 at 12:47 pm #45034Chris BallmerParticipant
I don’t exercise.
I don’t try to ‘maintain energy’ I don’t believe it works for me, though it may work for other folks, different metabolism etc. I try not to think about it too much, being too obsessive about my body reminds me of my progression, I’d rather spend my time thinking about things that I always did before, live my best life regardless of energy… so far its been working for me.March 5, 2019 at 6:49 pm #46242Eric KingParticipant
Hi Ellen et al.
I also have low risk MDS and doing the watching and waiting. My issue has been the recovery from the effort, not necessarily the effort. I can drag myself to the symphony or do the gardening or whatever. But it’s the next day, and then sometimes the next next day, that are the most difficult.
Now at least I’m aware of this pattern and can plan accordingly. I agree it’s challenging, especially when others don’t quite understand that we don’t look sick.
Good luck.March 6, 2019 at 7:28 am #46248Bob CookParticipant
It seems counter intuitive, but I try extra hard to be physically active. It seems to help. I suspect maybe becasue it’s been helping me sleep better so the rest I get seems to be more energizing. Weekdays are too full for me but I usually try to nap a bit on the weekends. Same category, diagnosed 15 months ago, no treatment yet and stable but lousy numbers.March 6, 2019 at 9:24 am #46249Donna ClabaughParticipant
For seniors, check your insurance and see if they have SilverSneakers benefit. Mine does and it is great. I registered at two of the local gyms that have pools, hot tubs and steam rooms along with all of the exercise equipment. It was totally FREE for me to sign up. I have been recently diagnosed with Myelodysplastic Syndromes & Myelofibrosis with a JAK2 mutation. My doctor has not told me which risk factor I am but the research I have done says that the MF with the JAK2 is more agressive. We have not started any treatment yet, I see him again later this month to decide what treatment we will start. I don’t have enough energy to use the equipemnt but I go and do the water exercise class and sometimes I just go and swim and exercise on my own. I find the hot tube and steam room really help. I have a COPD and a lot of shortness of breath from the anemia. The steam room is like doing a breathing treatment. It helps a lot.March 6, 2019 at 9:12 pm #46261staceyParticipant
Within a few years after being diagnosed with MDS, I was diagnosed with both hypothyrodism and low Vitamin D levels. Both of these have fatigue as a symptom. My vitamin D still continues to be mysteriously low. I don’t know if these are a result of the MDS or not, but I just wanted to mention them as a heads up in case that is something some of you haven’t had checked in awhile that could be contributing to your fatigue. Also, they say not drinking enough water adds to fatigue, and I know I’m not always great with that either, especially combined with the dry, cold weather I’m having here in Pennsylvania. On the rare days I do exercise, I think it probably does help me sleep better, but I have to admit, some days I’m just too tired to think about it, and I don’t make it a priority in general. I’m impressed with those of you who are both motivated and also able to keep up with a regular exercise routine.
-StaceyMarch 16, 2019 at 12:16 am #46319Ellen WeissParticipant
Thanks for taking the time to reply. We had not thought about drinking water to help with the fatigue. — Ellen
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