ETand JAK2 and just on asprin - new here

[Cassandra61]

I just wondered if anyone has any tips for staying well and for managing the fatigue. Most of the time I feel really well and then the fatigue can hit me like somebody has just switched off my energy like a light switch! Really grateful for any tips and to tap into the wisdom - thank.

[Mazcd Partner MPNVoice]

hello Cassandra, totally understand about the fatigue and how it can feel like someone has switched off your energy, you have my sympathy when it hits you. This information on our website might help, you will see also that you can download our helpful information sheet about fighting fatigue

mpnvoice.org.uk/living-with...

best wishes, Maz

[Cassandra61 in reply to Mazcd]

Thank you so much for finding the time to replay and for your encouring and kind words. I have just downloaded and read the information sheet and it is really helpful. Thank you so much for being there

[RobPV]

Hi Cassandra61, I know exactly what you mean about your energy being switched off. I can be having a good day and feeling completely normal and suddenly I just feel like my batteries are running low. A sugary snack will get me some energy quickly until I can get home and rest. I've been that way for several years now.

[mark382]

I know the feeling. All ok and then just zapped. I could lye on the floor and go to sleep. When I worked, if it hit me I would go and sit on the loo and try and have a nap for 10 minutes or so. Helped a bit. Only real thing for me is to sleep for a few hours. Take care.

[LottiSz]

What has helped me enormously is exercise. I try to insert some form of sport into each and every day. It took me a while to find one that I like the most (cycling), but once I got the hang of it, I was off! I haven't had a bad fatigue day for months now (I have been cycling and doing yoga frequently for a year). I think you can find your sport, too! Best of luck!

[Willaby]

Hi Cassandra, I also know exactly what you mean and it is tough to deal with - I have a full time job and it generally hits me about 3pm. Personally I find sugar makes me feel really awful. I tend to drink water or herbal tea - I read that we need to stay hydrated so I drink loads 😂I have also been doing a 30 minute online exercise class before work (thanks to lockdown) Mon-Fri for 5 months, which is a mix of Yoga and Hit and I feel a lot better for it - my husband says I seem a lot better too 👍I try to eat lots of fruit and veg through the day in the form of snacks but otherwise eat normally and think that helps me too. I have had this for 4 years and don’t want to give in to it but do sometimes have a nap in the afternoon at the weekend 😊Good luck x

[Hidden]

Please get your vitamin B12, folate, vit D levels checked too, as these can also lead to fatigue issues. Also get your thyroid levels ( TSH, Free T4 ,Free T3 and thyroid antibodies) as thyroid issues can also cause fatigue. Just because you have ET /Jak2 does not mean every symptom you have is only related to that condition. It might be, it might not! Always worth checking everything out.

Always get a print out of your blood tests ( which you are entitled to) so you can monitor what’s happening over the longer term. Healthunlocked also has a B12 and thyroid groups if you need help understanding any results.

Please don’t head for “sugar” as a pick me up. That will only lead to further health problems down the line, plus depleting your mineral stores at the same time. Go for healthy natural fats instead, nothing that’s been adulterated by people!

“Deep Nutrition “ by Catherine Shanahan is a great book on healthy eating, if you are interested in that side of things.

[IrishSarah]

Hi Cassandra,

Fatigue is such a tough one so far starters I’m sending you a big virtual hug 💚

Personally I found it the hardest symptom to deal with physically and emotionally - the way it can sap quality of life and leave you feeling helpless and a bit useless is incredibly frustrating at times.

Here’s what I’ve done (based on lots of good advice gathered from this brilliant little community).

1) Explore ALL potential causes. Anemia, vitamin/mineral deficiencies, thyroid etc.

2) Be a detective! I made myself a daily tracking chart in an attempt to crack the fatigue code 🕵🏼‍♀️ I track how much sleep I’ve had, water intake, exercise, inactivity, caffeine - then rate fatigue and brain fog severity from 0-10. I’ve used it to spot some patterns, test little lifestyle changes and gain some sense of control.

3) Stay well hydrated. Any less than 2litres of water leaves me feeling exhausted the following day.

4) Move! Counterintuitive when all I feel capable of is lying down, but getting the heart pumping helps massively. As little as 15-30 minutes will do the trick. Even better when I exercise on my good days - benefit seems to carry over into the following day and lessen fatigue.

5) Nap. When I’ve hit a wall I sleep for 1-2 hours. Feel rubbish when I wake up & then much better 30 minutes later. Gives me the boost to get through the remainder of the day, albeit at 50% capacity!

6) Communicate! I had a hard time accepting fatigue as “the new normal” and despite their best intentions my partner, family & friends had a hard time with it too. I’m young (ish 😂) and was always energetic so it was tough to tell people around me that expectations of how “on” I could be had to change. It felt impossible to explain fatigue is NOT tiredness when they have noooooooooo clue what it feels like to experience it.

I felt less frustrated when I let go of wanting them to truly understand and just started saying “My battery is at X%”. I also communicated that “wipeout” means I’m done mentally & physically and switching to rest mode (lights are on but Sarah isn’t home 😂).

7) Nutrition. I’m in early days of this experiment but feeling some benefits. By no means a purist, life is for living and for me that means not having a very strict diet and enjoying the odd gin party! I’m concentrating on eating lots of anti inflammatory foods, juicing for nutrient boost and taking some supplements that benefit inflammation & energy (omega 3, vit D, vit B12, Magnesium)

Hope there’s something in there that’s helpful!

Sarah x

[Cassandra61 in reply to IrishSarah]

Thank you so much for taking the time to do this for me and to reply at length; it is really encouraging and just good to know that other people go through this too. I will really take on the daily tracking chart as I think this will make more feel more in control of this and less a victimof it. I have come round to the hydration thing and think this is a good tip to keep going with and I have made myself do some exercise a day during Lockdown so will keep going with this. I am really interested in the nutrition aspect though so if you have any breakthroughs I would be so interested.

Thank you so much for taking the time and sharing and supporting - it really helps

Have a good weekend

Cassandra x

[IrishSarah in reply to Cassandra61]

You’re so welcome Cassandra 💚

There’s people on here who’ve posted lots of good research/insight re:nutrition if you’re interested in following that thread. If you do a couple of keyword searches on the forum some should pop up. I will of course share anything I find that works. Take care 🙂

[hunter5582]

As already mentioned, a complete nutritional analysis may be helpful in identifying whether this could be contributing to the fatigue. Definitely would want to include Iron panel and Vit B/Folate in the analysis.

Looking at the bigger scope of ET treatment, there a variety of approaches. Here is a great presentation on this topic by one of the leading MPN experts> Note: they do not all agree.

youtube.com/watch?v=hbVr9u3...(Not working as expected?)