Hi everyone. I got diagnosed with ET with an MPL gene mutation in December 2021. I take 75mg of aspirin a day. My platelet count hovers around 500 and goes up if I'm fighting any viruses. The fatigue aspect is what I'm really struggling with. It makes me feel incredibly low. My GP has put me on antidepressants. I catch lots of coughs and colds, and they hang around for 3 weeks but my white cell count is fine. I can't imagine feeling like this for the rest of my life. Has anyone got any tips on how they manage the fatigue? When I speak with my Haematology Dr and I report fatigue, I feel that it's not taken seriously. I have an appointment with her in December and want to be armed with as much knowledge as I can get. I know they're unlikely to prescribe Hydroxycarbamide but I wondered if anyone else had been prescribed anything to help with fatigue. Thank you in advance 😊
Fatigue: Hi everyone. I got diagnosed with ET with... - MPN Voice
Fatigue
Fatigue is the number one MPN constitutional symptom. Some hematologists do not know how to manage it properly so they do not provide much support. Do bear in mind that there are other reasons for fatigue, including nutritional deficiencies. It is worth ruling out other causes. Suggest specifically checking iron, B-vitamins, Vit D, Magnesium, and whatever else the doc suggests.
Regarding MPN-related fatigue, there are things you can do. Here are some resources.
mpnvoice.org.uk/living-with...
mympnteam.com/resources/man...
patientpower.info/myeloprol...
All the best moving forward.
Thank you. She regularly checks my iron, vitamin B/D and magnesium. They always seem to be okay. I have read the links you shared with me. I really appreciate it 😊
Fatigue is my biggest symptom also. It's awful and I'm sorry you have it. I have found only one thing that helps me.
This is going to sound wildly counterintuitive - but what helps me is high intensity exercise. When I started out, I was too tired to even walk around the block. I laid in bed every evening after work- I was just too tired to get up. Then one day I started an early morning routine of high intensity training classes. It was so sooo hard to get out of bed but once I did and did it again and again... a couple months in I noticed my energy levels were getting better and better and now I feel like my old self (almost). If I skip a few days of exercise, I feel that old nemesis fatigue creeping back in to take hold. I've tried lots of supplements, sleep aides, etc. to no avail. High intensity workouts have help me tremendously. I hope you find relief too!!
Thank you. I have started to go for long walks and I'm also starting to purposely lose some weight. Hoping the combination of the two will help.
Well done. Keep it up! I hope you get some relief very soon!
I am there with you..I had always exercised but when the fatigue got really bad it was a "chore" but I too found that if i actually kicked up the exercise intensity, I had less fatigue and felt better..
Do you have lots of stress in your life regards work ect, I was suffering with fatigue a lot was told to take magnesium and a multi vitamin but most of all to look at my work/ life relationship and since giving up my business and eliminating lots of stress I’m a lot better than I was, combined with some exercise and a healthier diet, all the best!
I have reduced my commute and I work less hours than I used to. There is a link between my fatigue and when my stress levels are elevated at work. I can't afford not to work unfortunately but maybe I need to address it with my managers and see if there is a work around. I will ask about the magnesium and multivitamins. Thank you for your reply 😊
Hi. I don't have ET but I have PV, I to get incredibly tired. I have discussed this with my manager at work and she has given me extra breaks and a longer dinner break for the two days I am there. They are very understanding of my situation. She says that I come under the The disability Act. Whether I can manage to take these extra breaks is down to me. I work in a cancer hospital with children in Proton Therapy. Perhaps if you discussed it, you may get some support. The other idea is to see occupational therapy at work. All the very best to you. This forum is very helpful to us all. X
I'm quite a stubborn person and I've always been reluctant to ask for help but maybe I need to be a bit more honest about how I'm feeling. Thank you for your reply 😊
As others have said , fatigue is number one symptom, 92% if I remember correctly. But there is things one can try, apart from healthy diet and weight/ deficiencies in vits etc it is worth checking thyroid, low thyroid can cause fatigue, most docs just check TSH but Free T 3 and Ft4 needs checking. Throid blood tests should be done around 9am fasting but not dehydrated.Most docs won’t treat thyroid unless TSH is over 5-10 but it should be about 1 if not on thyroid meds, Ft3 and Ft4 should be in upper quartile. There is good info on thyroid on website Stop the Thyroid Madness. Worth checking thyroid.As somebody mentioned exercise makes a big difference, that’s well documented, if poss try to do at least 30 mins of fast walk/jog/cycle etc, anything to get heart and lungs going and blood pumping (also reduces thrombotic risk). Keep moving , I do a little exercise before breakfast and lunch , climbing stairs or fast walk and longer workout in evening. I find it helps a lot. If not used to exercise start slow and build up slow to avoid injury. If none of that helps it might be worth trying a functional medicine type doc to check other things, some of these docs are good but many chancers.
Thank you. I'll make sure I mention FT3 and FT4 in my email before my next bloods are taken 😊
Hi! There’s not a lot I can add but just to share that you are not alone. I also have ET- MPL, diagnosed in Nov. 2021 and taking aspirin and Hydroxycarbamide. My main symptoms were overwhelming tiredness and persistent headache. Many of the other symptoms have lessened since starting meds- platelets hover around 500 down from 1200, except- you’ve guessed - the fatigue! I am lucky to be retired so donot have the extra stress of work. When I’m having a bad day, I just do what I can and try to accept. Exercise definitely helps as does keeping hydrated. Keep moving even if only around the house at first and short walks will definitely lift your mood. I really feel for you as it is debilitating but the bouts of fatigue can be managed and will not always have the same ‘strength.’
I also recently have had a prolonged bout with muscle weakness and had my vitamin B12 level checked. I now take supplements and am slowly getting back to normal activity.
Thank you for your message. It's quite nice to know I'm not alone 😊
Yes, high intensity exercise really really helps. I swim a really fast 50 lenghts 3 times a week. It's so hard to get out of bed to do it but the alternative is worse. You have no real life if you let fatigue takeover. It's really horrid. Stress/emotion can be a factor in fatigue too. If I get annoyed with anybody or anything I'm wiped out for a few days!
Thank you! I enjoy swimming. Maybe I'll try and go a bit faster! 😊
my husband gets the same response from his oncologist regarding fatigue. 🥲.
Hi!
Fatigue is definitely a symptom of ET. My hematologist is also dismissive about fatigue, despite existing studies on fatigue as symptom of ET, so plenty of work to do there to inform them.
I also have MPL mutation, in my case a non-canonical MPL mutation, and what I could notice is that people who have MPL mutation generally seem to experience more fatigue. As we are so few with this mutation, I could not find any reliable study on this.
"Prominent symptoms include fatigue (92.7%), early satiety (61.9%), abdominal pain (45.9%), abdominal discomfort (53.2%), inactivity (60.5%), headache (48.3%), concentration problems (61.7%), dizziness (55.2%), numbness (61.3%), insomnia (65.4%), sad mood (62.7%), sexuality problems (57.9%), cough (46.4%), night sweats (56.4%), itching (52.6%), bone pain (48.5%), fever (20.2%), weight loss (34.2%), and impaired quality of life (84.2%) [3]. The MPN symptom burden has been closely examined for its impact on patient daily living through the MPN LANDMARK survey. This study systematically surveyed 813 MPN patients and discovered that MPN symptoms negatively impacted work hours, number of sick days taken, the need for medical disability and/or early retirement, and overall activities of daily living."
ncbi.nlm.nih.gov/pmc/articl...
onlinelibrary.wiley.com/doi...
I found this advice below quite adequate and helpful:
"Conserve energy: Try to be realistic about how much energy you have and what you can and can’t do. Only do the things that are most important and ask friends or family for help. It is important to recognize which activities create the most fatigue and also note the frequency, degree, and duration of fatigue so that you can report these to your doctor. If you’re having difficulty managing fatigue, you may wish to ask your nurse or doctor to help family members understand how they can help.
Maintaining normal rest and sleep patterns is important for ensuring quality rest. Plan your daily activities carefully, and schedule rest times between activities throughout your day. Try to rest when you feel the worst and do your activities when you feel better."
Regarding catching infections often, MPN patients are more likely to get infected as compared to healthy controls: "These novel findings of an overall increased risk of infections in MPN patients, irrespective of common cytoreductive treatments, suggest the increased risk of infection is inherent to the MPN."
ncbi.nlm.nih.gov/pmc/articl...
We might have too many platelets, but they are often either hyperactive or dysfunctional. This means they might not do their job well. One of the jobs of platelets is involvement in immune responses. This is one potential explanation for higher propensity for infection in ET:
"Not only are platelets the cellular mediator of thrombosis, but platelets are also immune cells that initiate and accelerate many vascular inflammatory conditions. Platelets are linked to the pathogenesis of inflammatory diseases such as atherosclerosis, malaria infection, transplant rejection, and rheumatoid arthritis. In some contexts, platelet immune functions are protective, whereas in others platelets contribute to adverse inflammatory outcomes."
Hi!
I know it is a bit later than your post, but there are some studies on MPN symptoms and potential management.
I also have ET with MPL mutation, exhaustion and cognitive dysfunction (brain fog) wipe me out daily, so I commiserate with you. Same for infections, I used to have up to 6 colds per year, one would end up in pneumonia.
These are the studies on MPN symptoms and potential management:
ncbi.nlm.nih.gov/pmc/articl...
ncbi.nlm.nih.gov/pmc/articl...
ncbi.nlm.nih.gov/pmc/articl...
Regarding infections, it seems like MPN patients are more susceptible to infections, irrespective of treatment, so there one can just try to be a bit more careful:
ncbi.nlm.nih.gov/pmc/articl...
Take care!
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