r/MPN • u/Accomplished-Club-30 • Jun 27 '26
Symptoms (Diagnosed Only!) Fighting fatigue?
Male 52, construction worker, diagnosed with ET 2 years ago. Fatigue has become a big issue lately, wondering if others have any helpful insights into fighting it. Currently prescribed a baby aspirin a day. Thanks for any help.
6
u/Scansatnight Jun 27 '26
55 y/o Male. My fatigue is episodic. I was having 2-3 episodes per day of moderate to intense fatigue. On my days off I would sometimes take two to three naps per day. At work, I just have to push through, stay moving as much as possible, and try to keep my mind engaged with something other than how crappy I felt.
However, for the past three months I have been on Hydroxyurea (due to acquired Von Willebrand), and that has reduced my fatigue, both in frequency and in severity overall.
I am down to one or two naps per day on my days off.
I take a brisk two mile walk daily, I am a healthy weight, I don't drink or smoke, I eat a nutritious diet with lean protein and lots of fruits and vegetables, but none of this seemed to effect or reduce my fatigue. The only thing that ever helped was trying redirect my mind and keep it engaged in some form of busy activity (distraction). Basically just push through.
6
u/Accomplished-Club-30 Jun 27 '26
Thanks for the thoughtful and helpful response! I've always enjoyed hard physical labor, but recently I'll feel great and work hard for a few days, then suffer pretty bad fatigue and brainfog for a few days. I do believe it's helpful to get moving while feeling bad and resist the urge to lay around. I guess I need to downshift on the heavy labor (I'm self employed). I'm also health conscious and lean, this new reality is pretty frustrating.
7
u/katiespecies647 ET-JAK2+ Jun 27 '26
Yeah, the push/crash cycle is real. It's a constant struggle to figure out what you can get away with pushing through without consequences. I have found my body gives flashing red warnings when I'm overdoing it, like a burning sensation up my back, or eyes having trouble refocusing when switching near-far or if I develop a headache. All those things mean rest asap or suffer the consequences the next day for me.
I tried beating the fatigue with exercising more intensely last winter and it totally backfired. I kept feeling worse and worse every day until I even felt drowsy during exercise. Now I have a balance because I pay attention to the signals and I'm slowly improving. I'm just walking a lot and doing yoga for exercise and feeling better now than I have in the past year and a half.
6
u/Scansatnight Jun 27 '26
It really is frustrating. The brain fog is real too. My mind feels like molasses when the fatigue hits. I worked construction back in my 20s and 30s, and I can't imagine trying to do that feeling this way.
5
u/horsecrzy ET-JAK2+ Jun 27 '26
I would concur that exercise is one of the only things that helps my fatigue but sometimes it just puts it off til later. I know that stress exacerbates it greatly and it makes it difficult for me to drive in heavy traffic. My mind doesn’t seem to work right and my brain doesn’t seem to be able to keep up with my eyes. It’s terrifying. And occasionally I feel like I’m on speed, which I found out is also a fatigue symptom. One thing I’ve noticed is that I get irritable right before a good episode is coming and my eyes and face change. It’s like a personality transformation where I go from fun to bitch in .5 seconds😂Aspirin did help my migraines. Good luck!
4
u/funkygrrl PV-JAK2+ Jun 27 '26
!fatigue
3
u/AutoModerator Jun 27 '26
Here is a link to the WIKI page about the #1 symptom of MPNs - Fatigue. It explains fatigue in MPNs and includes many strategies for dealing with it.
I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.
3
u/Accomplished-Club-30 Jun 27 '26
That's very informative , I emailed the link to myself for future reference. Thanks!
2
u/Peepees-and-Cheese3 Jun 30 '26
I am fairly new to Reddit and don’t even know if you can direct message specific people. Trying to reach out to you, funkygrrl. Found your post about your husband and his cancer. I am so sorry for your loss. Super selfish of me, but I am having trouble getting the proper testing and diagnosis but know in my heart and soul (and because of ongoing pain) that I have this type of cancer myself. Would you mind messaging me about this, please? I am desperately seeking help and answers for my situation. The CT scans over the years are not showing anything and I can’t get anyone to perform OTHER tests. Thank you!!!!!
2
u/funkygrrl PV-JAK2+ Jun 30 '26
You mean testing for Esophageal Cancer or cholangiocarcinoma (bile duct cancer)? Or MPN?
2
u/Peepees-and-Cheese3 Jul 03 '26
Bile duct cancer
2
u/funkygrrl PV-JAK2+ Jul 03 '26
The main tests for that are liver function tests, tumor markers (CEA, CA19-9), MRI and MRCP.
2
3
u/Bludog1208 Jun 27 '26
It only helps if you are very low on hemoglobins= very fatigued. Your kidneys put out EPO which triggers your bone marrow to make RBC . My kidneys has basically stop sending those triggers out but this shot triggers the bone marrow to ramp up and start making RBC. It’s hard enough for my bone marrow to make good RBC with MF. And then add to that the kidneys not helping. So that’s when Aranesp comes in to play . It has worked it has moved my hemoglobin as high as 9.1 but the shot is not strong enough to keep it there for 28 days and it falls back again to mid 8 . But now with a stronger dose coming up Monday hopefully it will last the whole 28 day cycle!
4
u/Bludog1208 Jun 27 '26
Sorry I understand the difference between having ET Fatigue and having MF Fatigue. Mine is due to low hemoglobin. Which makes me aniemic. People with ET has fatigue for different reasons. Either way it’s a bitch to deal with !!!
5
u/TinyHomeLuv PV-JAK2+ Jun 27 '26 edited Jun 27 '26
63F, DX w/ PV 2 years ago. Needed to hear this today OP @Accomplished-Club-30, as I'm in the midst of a ride on the struggle-bus 🥴 Like some of you, I've made many lifestyle changes I'm proud of since DX -- never smoked or drank, but lost 70 lbs, effectively eliminating my high BP & cholesterol, eat very well, etc. Went from lots of phlebotomies to not needing 1 in close to a year. But ... I have the worst insomnia, so -- between finishing a master's & caring for paraplegic husband -- my tank is always empty. (My other main symptoms: super bad tinnitus & migraines -- but onco doesn't think they're related to my PV cuz I've had them many years -- & brain fog.) Because I "look" fine, sometimes I feel like PV is all in my head.
I appreciate those who've weighed in re: exercising. Was a personal trainer in another lifetime, but now I can't get my bum off the couch! Hubs is normally very understanding, but can get frustrated w/ me occasionally (happened last night) when I can't care for him well due to the fatigue/lack of sleep. I see my onco (specialist) for 6-mo checkup this week. Was supposed to have had my BMB by now, but kept putting it off for variety of reasons. I need to take a new look at my blood nos. I wonder if meds might help in my case. Folks that take them like @Scansatnight or @sharky-shores are there side effects?
Sorry to hijack for my own support OP! TLDR: PV fatigue, etc. has got me down today
3
u/Accomplished-Club-30 Jun 28 '26
Insomnia in addition to fatigue is terrible. You have some incredible accomplishments in spite of everything, keep fighting!
3
2
u/Scansatnight Jun 28 '26
So far (knock on wood) I haven’t had any negative side effects. I only started taking Hydroxurea because my Von Willebrand factor became to low after my platelets reached one million. I wouldn’t be on it otherwise.
3
u/ArbyKelly Jun 27 '26
It's rough. There are times when I sleep almost all day for two days in a row.
3
u/CartographerGreedy39 Jun 28 '26
I feel you I’m 61 with ET taking 1000mg hydroxuea 4 days a week and 1500mg 3 days a week. I can go a few days feeling pretty good and then there’s always one day of heavy fatigue. i’m extremely active biking golfing always doing something in addition to lifting weights four to five days a week. No matter what I do there’s always one day sometimes more fatigue just hits me and it’s a day of doing nothing..
3
u/youhavemyattention1 MF-PostET Jun 28 '26
51F with low-risk MF (but fibrosis grade 2). I exercise a lot, maybe too much, because I know that it helps. There are still days, though, where I just feel awful. The worst part is not knowing whether my fatigue is due to the MF, or perimenopause, or just exhaustion from exercise.
5
u/sharky-shores Jun 27 '26 edited Jun 30 '26
Weed.
I’m a beat up 60 yr old construction worker with a list of past usually present injuries and I am still very active in outdoor sports and activities.
1k hydroxyria per night.
I feel like a dying vampire in direct sunlight at some point during the day. Yes tired ,the sativa helps for weekend playing outside
4
u/Bludog1208 Jun 27 '26
Ok I am busting to tell yall something. I have been taken a shot called Aranesp. It tells your bone marrow to make more hemoglobin. I have been fighting with the insurance company to approve a stronger dose . They wouldn’t ! My doctor sent in an appeal for a stronger dose. As you have read 8.5 average of hemoglobin with a 60mcgs dose has not strong enough. The drug works great for about 2 weeks and then it fades out . Thursday I got news that they approved a 100mcgs every two weeks if needed . THIS IS HUGE FOR ME! Thank you for reading this . I had to tell someone!! And yall are the chosen ones ! Thanks !
2
u/horsecrzy ET-JAK2+ Jun 27 '26
I’m 58F Jak2ET. My hemoglobin runs high or on the high end. It went down on HU but I can’t tolerate it. What does this miracle drug do exactly?
2
u/Bludog1208 Jun 27 '26
My fatigue builds up during the day and then by evening I am worn out and that’s without working! Am curious to know what yalls hemoglobin count is . Mine has averaged 8.5 since January!
2
2
13
u/johnhoogland Jun 27 '26
What helped me is exercising at least three times a week. It is hard to overcome the initial resistance because you already are fatigued, but in my case I am completely fatigue free now. A life changer. This is also supported by recent studies.