HELP! with fatigue, brain fog and forgetfulness

[Jjustjen]

HI there!

I am 31 years old and I was recently diagnosed with ET, negative 3 mutation and platelets were 1.8 million over the summer when I was diagnosed, now they are down due to 2500mg of Hydrea/day.

I am a very busy person with a full time job and 2 very active kids. My question for you all is how do you cope with the exhaustion and brain fog and forgetfulness of the disease ? I drink plenty of water, eat healthy and get enough sleep and I still feel like I was hit by a truck at least 3 times a week. I am forgetful, and I cant seem to get my tasks done due to my "foggy brain" it is frustrating to say the least.

Is there any medication that your doctors have put you on to help any of you with this?

[Aime]

Hi, you are doing all the right things. Every sympathy, the fatigue is horrible to cope with. The best thing to do is ask your haem or GP for help. Have you had your iron levels, etc checked recently? If not, worth getting checked. Be careful not to blame any new symptom on your ET as it is easy to do that and then not consider other possibilities.

Let your body rest extra if it needs too. I find exercise sometimes helps but other times I just have to give in. Take care, keep in touch Aime xx😺😺

[Chris_H]

Hi, I am 36 with PV. I have two jobs and am a single parent with two boys... The toughest thing for me to deal with is the fatigue. It is so random and after 2.5 years I still can't figure out if anything I do actually helps or makes it worse! I have pretty much given in to my body's cry for rest when the fatigue comes, so I sleep for one to two hours around mid day which takes the fatigue and brain fog away for the rest of the day.

[wotan10]

Good morning and welcome.

It's a bit disconcerting at times.

The brain fog gets easier to manage.

I dealt with it by giving myself short tasks to do .

Write everything down so that you can find your own rhythms.

Get your family on board, share out the every day running order, it's about time management.

Some days I bet are worse than others.

Ok, well try to factor in less issues that upset the Apple cart.

Be kind to yourself and ask for support.

Keep safe.

I wish you well, from a fellow surfer ride those waves.

[Inca]

Absolutely,all of that...push thru if you can ,give in and rest when it is too much.I sleep/ dose two hours in the afternoon,really annoys me esp when I want to get on with something ,but 9 years P V has taught me what I must do !!!

[Greta1144]

The best to luck with your ET. Try breaking task into small segments. I hope your symptoms get better. My daughter has ET (CALR ). Her platelets are at 1.6 million. I was wondering how long it took to reduce your platelets? Is 2500 mg hydrea 1 pill or more?

Thanks,

Susan

[Jjustjen in reply to Greta1144]

Hi Susan! It took 3 months with slight increases in medication each time. We have found my "sweet spot" now and my platelets are maintained. The side effects were pretty harsh at each increase but toned down after a week or so. 2500 mg is 5 pills/day 3 at night and 2 in the morning. Is your daughter taking anything?

Thank-you,

Jen

[Greta1144 in reply to Jjustjen]

Thanks so much for your quick reply. I am so happy you have found the correct amount to control you count. Yes, my daughter started on 1 pill of Hydrea. This was beginning to slowly bring her platelets down. She was feeling very fatigued but no other symptoms. She was changed to interferon and platelets are back over a million. It is strange because she feels so much better. Now on 90 mcg interferon and is to take 1 Hydrea each day. We are hoping to find the correct dosage. I can not tell you how much this helps me to hear your progress. The best to you.

Susan