I haven’t posted in a while but I would really appreciate some advice/experiences please.
I was diagnosed ET JAK2 + last April....
my platelets were not extremely high but I was started on hydroxy for approximately 6 months to ease the symptoms I had including a constant headache. This did help considerably but I chose to change over to peg as I have only just turned 40!
I have good and bad days but more bad lately.... I have had a headache since 14th feb 2019 but since being on treatment including 75mg aspirin my headache has improved.
My question is concerning fatigue.... I have never really known how to describe how I felt before but now I have finally realised how to describe it! I constantly feel like you do when you wake after an hours nap or how you feel when wake up after falling back to sleep in the morning. I feel drained with a muzzy head.... I sometimes feel them feeling of aching in your face and head before your about to get a cold. Is this all normal symptoms of my diagnosis? Someone please help! I need to speak to people that feel the same as me and can understand me.
Thank you for taking the time to read. X
Written by
Dazakella2010
To view profiles and participate in discussions please or .
Have you asked your doctor to check for other things that might be contributing to your fatigue?
Low levels of B12, Vitamin D and iron can are relatively common in those with MPNs. Low levels of thyroid hormones can also creep up on you as you mature!
Making sure these other components of your "engine" are working properly might help offset the additional burden of your MPN and your meds.
The range for serum B12 is large. Even if you were just 1 pt above the lower range the Dr would still say it’s normal.
Best to make sure you always get a print out of all your blood test results. Then you can see if there is a pattern going on, if one level is rising or falling. NB:Neurological symptoms from B12 issues can occur YEARS before the haematological signs show anything.
A slightly better test is the active B12 test as this measures the percentage of b12 your cells can actually use and ignores the inactive / analogue B12.
Yes I totally relate. It’s an unfamiliar fatigue, though I tend to push through if I’m at work or busy. But also it can go and I can feel fine for weeks.
I did have it before taking pegalated interferon, and other medication (I’ve tried them all) but I certainly can be ‘man down’, and you describe it very well, the day after injecting. This is the only time I can sometimes take to the couch. I think it’s tricky to pin down to a meds vs condition! Fatigue with the meds and fatigue without!
I did try some homeopathic remedy, which seemed to help a little, but I didn’t, and don’t, keep a record. So not clear about the effectiveness of it. Water really does help. If I’m not diligent at drinking water, and I don’t love it, I do get more tired, and have more evident side effects.
I feel like this a lot. I am also ET JAK2 positive.
I feel like even sitting up is too much and I need to lie down, not necessarily sleep, but just so drained and fuzzy headed. Some day s are good, some are not. If I am not working I end up lying on my bed for a while every few hours. I think it is part of the condition, as I am just starting treatment. I have felt like this for some years, have only just been diagnosed, and the consultant thinks I've had ET since at least 2016. I've read posts from lots of people on here who experience fatigue, and it seems to be on either hydroxy or PEG.
Keep going, drink lots of water, eat healthily. Some say not too much dairy can help, haven't tried it yet...love cheese
Finally!!!! Someone who understands. I have had such fatigue it’s hard to even breathe. Doctor keeps telling me it’s due to my depression. Yes I have had depression for years but can’t seem to convince her this is soooo different. Just got results of all my blood test and have JAK2V617 F. Still in acceptance mode but much better mentally to know there really is a problem and it’s not just in my head. Thank you.
My fatigue is a lot like this. As if I have the flu and I’m wearing a lead suit. Hydroxyurea helps me a lot with this. I am on the younger side as well and wondered if I should be on interferon but I feel well on the HU so I’m sticking with it. I still have bad days but they are much less often.
I am so sorry you have had a headache for so long! I also have had very frequent headaches, but not constant. So am most sympathetic. With respect to fatigue, you hit the nail on the head with your description, including the face. I have had a difficult time describing it, because it is different than the usual fatigue I have felt in the past. I am 56 and just thought it had to do with aging and a very stressful job. Some times my face just feels so heavy and my eyes feel so very tired.
Was just diagnosed about a month ago, so this different kind of fatigue now makes sense. I have not yet found out how to address it as I am still in the learning phase of this experience. But I wanted to let you know that you have described the exact type of fatigue I get and it lasts for hours. While I do not wish this on anyone, it is comforting to know others share and understand the feeling.
I’m so glad I have deceived the same as what everyone else is feeling.... I’m feeling a little better today, still fatigued though. I get my bone marrow results on Monday as there were some blood results that suggested possible pv x
I constantly feel as if I’m going down with a bug of some sort, I’ve just had my meds tweaked as in addition I used to feel a little spaced out. Maybe your meds need adjusting.
So sorry you are suffering, this ET is a bit of a nuisance. Thought I would share with you as reading this MPN site has helped me.
After many years of not feeling quite right, I was diagnosed last year with ET JAK2 and have been on hydroxy since last year. I thought I was tired before, but this level of fatigue has been extraordinarily debilitating, so I have been experimenting.
So far I have managed to improve my fatigue levels by drinking between 6-8 pints of water a day, which is really hard work; it also helps with my headaches, a lot. Due to a series of outings, I didn't manage to drink so much the other week and had such a very bad day I contacted my friend who is a retired nurse, who told me I was probably toxic and reminded me to drink more, which really made a difference.
I have always been a busy person and hate exercise as I always feel its wasted time, but I do exercise now and it helps with the fatigue. If I can rouse myself past that inertia of the limbs, to get going, I do think it helps. But, I cant overdo it or I am on the couch for the next two days.
The dreaded words, pace yourself, have meant that I try to have rest days between outings and I do sit whenever possible now or perch while I do something. I try not to push myself to just finish whatever, but leave it and go back an hour or more later, frustrating but! Its taking care of myself and being forgiving that I have found difficult as I have always looked after the family first. So I try, and hope I am succeeding, as I am starting to manage to do what I want, mostly, with planning.
I hope this dialog helps you a bit, especially with the headaches.
I am glad I found this site as I felt the hospital really didn't have enough people with this condition to know all the implications, so I appreciate the tips and information as its all quite a new experience.
ps rereading this regarding exercise, I do walk the dogs, do all the gardening, cleaning and DIY, lift and carry for work and home! However, I have let things go a bit - things that don't matter and I ask for help now. I think the exercising helps with the joint and bone pain too.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Stop taking medication
Diagnosis confirmed this weekend
Persistent symptoms even when HCT is OK?
Feeling so tired and fed up 
