Sorry for the long post, I have MF, diagnosed January 2018 currently taking Pegasys Interferon (45mcg per week) and aspirin, for a while before Easter I had been feeling 'odd' - getting tired quickly, light headed etc.
My hematology dept has a 24 hour helpline and they advised me to come in (on a Sunday) for some tests.
Luckily (?) all the tests were 'normal' - platelets a bit high but no sign of any infection or problem with liver or kidney function.
My Blood Pressure has been slightly high the past few times I had it measured and my GP had recommended a home tester so I could keep track of it myself away from the 'white coat syndrome'.
The GP declared me unfit for work and started medication for the high BP - Irbestan (1 per day). I have returned to work after 2 weeks and still get easily fatigued.
It feels like I have started using batteries from the pound shop - they work for a while then just give up without warning! In cycling we talk about getting 'the knock', runners talk about 'hitting the wall' - when you just run out of energy and the legs get empty - that's how I feel. My normal reaction to this is to pile food into me which helps with the energy but I'm putting on weight now!
I spoke to my hematologist who couldn't see any reason for the fatigue - in her opinion the condition won't have advanced in the past year or so to the point where it's causing this level of fatigue, I had been coping well with the change to pegasys from hydroxy. She has run some additional blood tests to check the 'other' blood levels to see if anything shows up. I'm not due back there until the end of June.
Basically - is this my new 'normal' - do I have to accept the fact that I have limited energy and can't do the things that I had been doing without any issues before I was diagnosed? Is this a side effect of stress (being diagnosed and various other life changes)? Is this just getting older? Or is it something I can manage and get 'better' from?
any input or advice from you would be great - even to hear that someone else has experienced the same thing would be a relief!
thanks for reading!
F.
Written by
Not2bad
To view profiles and participate in discussions please or .
Hi, sorry to hear of your fatigue, not easy to cope with and common symptom for everyone I think! I drink plenty of water, eat stuff like pasta, nuts, carbs but plenty fruit and veg too plus some treats!
Sometimes I can fight it and exercise through it, other times I have to give in and take extra rest because I've no choice with my leaden arms and legs. Every sympathy, kindest regards Aime xx 😺😺
thanks for the reply - I had been coping well with the fatigue especially since moving off the hydroxy. In fact I had been feeling back to 'normal' with no real fatigue just normal tiredness from having a busy life with work and kids!
That's why I'm so concerned(?) or curious as to what the reason behind this is.
I drink plenty of water, eat fairly healthy but too much and too many 'treats'.
During the winter I was cycling with my son and a group of friends a couple of times per week but now walking a couple of flights of stairs makes me want/need to sit down!
I'm hoping to talk to a personal trainer I know to get her advice about getting active again - perhaps a strength program as the aerobic side of things seems so out of whack.
Hi, I think as long as all the checks are done then you just have to rest if u need it. I think sometimes if u cant exercise through the fatigue, your body is telling u to slow down for a bit. Take care, kindest regards Aime xx😺😺
Hi finbar, do you think it could be the pegasys? I know several people complain about it giving them flu like symptoms. The weight gain would obviously be because of eating more and lack of excercise,(I'm certainly guilty of that, or was until recently!) I do hope you find an answer as my new haematologist is strongly leaning towards pegasy for my unstable platelet control instead of the hydrea i'm on. Hope you improve soon. Atb,tina🤗
Hi I don't think it's the pegasys, I've been happy with how it works. I've been taking it at night to sleep through the worst of the flu type symptoms but to be honest it's very mild and a couple of paracetamol work a treat!
Wow interested to read your reply aime. I’m exactly the same. Sometimes I can fight fatigue and exercise helps other times I must give in if I don’t it takes ages to recover and depression sets in. There is a very fine line separating the two.
Hello, reading through your post I felt I could identify with the fatigue you are having. After a recent increase in Meds due to rise in platelets, I too struggle with fatigue to the point I have adjusted the number of days I work. I mentioned the fatigue at hospital and was told they couldn't see a reason in blood results and advised I go to my GP. I am on a course of B12 and vitamin D although this has not completely alieviated the fatigue it has helped a bit. Hope you feel better and stronger.
The way you describe your experience of quite suddenly’ being unable to continue exercising - hitting the wall, or running on empty, is exactly how I feel- with me it's usually when I’m walking and I’ve started going up any kind of gradient and I have to slow down - its as if I don’t have another gear. My O2 desaturates - I did a bleep test recently with a respiratory nurse to try to get to the bottom of it and my O2 levels went down to 88 when I exercised. At that level I felt lightheaded.
I’d had that experience before I was diagnosed with MF in 2017, and the ruxolitinib and EPO haven’t really shifted it. Bit of a bummer, but there it is. Its not like the ongoing fatigue that can kick in the day following a busy day ( or for no reason at all): it just seems to act as a limit on how much energy I can output. I recently used an electric bike on a cycling holiday and its was great- I could have an assist from the bike’s motor to make up for the energy I couldn’t provide going up hills.
I have the same problem that I hit the wall and just feel weak. I try to feel better by eating but have gained weight and I hate to put on weight . I also bought an e bike . It makes cycling so much easier. I am on HU .
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.
Ability to work
new member with p-vera exon 12
High Red Blood counts neg. Jak2 and all mutation tests
Feeling Rubbish 
myelofibrosis and interferon
