I was diagnosed with ET and then PV. Lately i have been very short of breath and the fatigue is so great i have to constantly fight to get anything done when all i feel like doing is going to bed or lying down. I don't sleep well and never feel really rested.
Does anyone else feel thid debiliitating fatigue? Thank you.
yep, 'fraid so. what meds are u on and do u have venesections? what r yr counts like?
I've been on hydrox for years now. Last blood count was around 850,000. Hemo is within range. I've had two heart attacks and am on heart meds. What is
venesections?
Hi. Do you see an MPN specialist (as opposed to a general haematologist / oncologist)? Your platelet count seems very high given that you have been on medication for years. Perhaps this needs reviewing? A high platelet count particularly for anyone with a previous history of heart attacks would be very concerning. Venesection - removing a pint or so blood - is generally the first line response for anyone with PV. It helps to lower your haematocrit.
I don't see a specialist. I go to the cancer center nearby and see an oncologist. Thank you for the good advice. I appreciate it.
Yes, i have ET & can't understand why i feel so weak & sore 24 hours a day even though my blood counts are within normal range. I was on hydroxy for 3 years but needed to change to interferon.
Do you find interfon works better?
Definitely! It brought my bloods into normal range within a few weeks. Over here in New Zealand we are only offered roferon A interferon alpha 2a which is injected 3 x per week so my body is in constant fatigue and ache mode but it is still better than the effects of hydroxy. I still have never been able to determine if the fatigue is from ET or medication.
I have PV with elevated platelets and my blood levels are currently under control with interferon. When I last saw my doctor I told him I still had days when I felt really knocked out. He checked my vitamin B12 levels and found they were quite low. He prescribed injections of Vitamin B2 and I do find they have made quite a difference. It should be a relatively easy check to do.
Hi Fran57paul,
I have PV and sometimes feel so fatigued but find 20 mins or more of exercise helps. Even a brisk walk, although I run as well.
I don't know if that helps.
Lizl
It does help. Thank you.
No I’m on Pegasys. Not quite sure why my B12 levels were depleted or even why my doctor thought of checking them. But they were on the low side, though whether due to the disease or the treatment I really have no idea, and the injections have definitely helped with the fatigue. Thanks for getting in touch - will check your post.
Thank you. I have an apppt tomorrow and will ask about it.
Hi Fran57Paul,
I have ET JAK2+ and am on hydroxide 5000mg per week. Like you I was suffering increasing levels of debilitating fatigue until my GP discovered that I had a significant shortfall of vitamin D. He put me on a very high dose of vitamin D3 supplement for 7 weeks (currently in week 4) and the transformation has been amazing. I still get some tiredness but much much less than before, and life is so much more enjoyable.
We are all different in the way MPNs affect us, but I would recommend getting tested for vitamin deficiencies.
Good luck, and I hope it works as well for you as it has for me.
John
I just picked up some vitamin D and am going to try it. Thank you for sharing that. I'm planning on asking my dr. about it. I'm glad it has helped you and you're doing well with it.
Hi, welcome to fatigue club. I feel exactly the same as you (et CALR )
For me little sleep at night results in feeling dozy all day. A catch 22 situation. I don’t know how old you are I’m a 63 female but what I have found is mind over matter. I DRAG my self to the gym and push myself into a yoga class or the swimming pool. ( I love swimming ) once I start, I wake up and feel vitalised. My nights sleep becomes better.
At the moment I’m getting over a knee operation and soon I will be starting the up hill struggle all over again. Good luck
Thank you! Praying for your complete recovery from surgery.
I agree with you that when you push through and do something, you feel better.
I'm also female, and I'm 82 (it's hard to believe).
Thank you for answering me - I love this group.
I fully understand as you might have read in my post about learning a lesson. We sometimes expect too much of ourselves I think and the acceptance of our limitations is a complicated and emotive issue. Be kind and rest when you need too. I’m going to try to do that too. Xx
Thank you so much for the reminder. I've always been busy and it's hard to vet used to my "new norm" when you look fine and I know it's hard for people to try to understand. I love this chance to talk with others who understand. 
I know exactly what you're talking about. I go through periods when the fatigue isn't too bad, and then hit a spot like the one I'm in now, where it is completely debilitating and all I can do is wait it out. So, lots and lots of sympathy for your situation. Take good care and know you are not alone.
Kim
Thank you! It's so comforting to know you're not alone and others understand. Best to you.
Hi. I find using moringa a great way to get energy when I’m exhausted I use it everyday
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