Et and tiredness

[Irishgal12]

recently I have been feeling so tired after work more than usual 😴 really interfering with home life exercise etc not sure if its et related but any management tips

[Mwalimu]

You might try changing the time at which you take your medication - I'm assuming you're taking HU. Sallie

[Irishgal12 in reply to Mwalimu]

No just aspirin

[wendycu]

I have suffered for years with tiredness,

I was given B12 injections every 8weeks, but never seemed to last 8 weeks.

I the fist lock down I was given B12 tablets. It was the best thing ever, it was as if they gave me a new life, I had energy. I want falling asleep 4 time before bedtime, (after work)

The doctor said I had to go back on to the injections, I did (when lock down finished) It all started again, falling asleep after work, couldn’t do anything.

I have a phone call appointment with my consultant at the hospital. He agreed to put me back in the B12 Tablets. He said my body must not be absorbing and keeping the B12.

Have a chat with your consultant, as it is part of ET.

[Ovingite]

Hi. Are you taking vitamin D3 supplements? I had a similar problem 3 years ago. Turned out my vit D levels were very low. GP put me on high dose D3 for 6 weeks and it was like someone had flicked a switch - amazing change. Nowadays I just take over the counter D3 tablets. I've seen it reported that many people are suffering D3 deficiency this year as we are spending more time indoors (sunlight being the natural source of D3). Worth looking into

John

[Trueblue8]

I get very tired but find that for me, regular exercise is the key. However, I have had a couple of occasions where, like you, I've felt more tired than usual and subsequently my bloods have shown my haemoglobin levels had dropped. I hope this helps. Best wishes Ian

[gset]

On top of the other suggestions I just wanted to add I also find this time of year makes my fatigue worse and find exercise and fresh air helps. I do however have to resort to a cup of tea or coffee in the afternoon to help me along and if I keep busy it takes my mind off how tired I feel. Distraction in whatever form works for you is worth trying too.

[Irishgal12 in reply to gset]

thanks i tend to just lie down which I think makes me worse

[Scrollernut]

Have et jak positive and on hydra 500 mg. I am exhausted. Sleep doesn’t help. I just monitor my day and because I’m retired I’m lucky enough to be able to not do much when it hits. Hang in there gal. It isn’t quite as bad over the past 9 months.

[hunter5582]

Fatigue is one of the most common constitutional symptoms that accompanies MPNs. MPNVoice has some great tips on this topic. mpnvoice.org.uk/living-with... .

A few things I would focus on are: getting good sleep, go outside and get exposed to daylight, exercise/activity, and eat well/nutrition. Regarding nutrition, suggest doing a nutritional analysis. When my Integrative Med doc checked, I was significantly vitamin B/Folate, Vitamin D, and Magnesium deficient (despite a very healthy diet). Now take supplements for all those and have brought levels to normal. It does make a difference.

hope that helps.

[Irishgal12 in reply to hunter5582]

Thank u

[lewislammy]

Please get yourself checked for leukemia

[Irishgal12 in reply to lewislammy]

Why would u say something like this