I’m ET jak2 positive and suffer from extreme fatigue. I am currently off work and eager to return, I have been reading an article about MPN and the use of antidepressants to combat the fatigue
Some antidepressants may help combat fatigue. Additionally, several small trials have found an increase in energy with the use of stimulants such as methylphenidate (Ritalin), dexmethylphenidate (Focalin) and modafinil (Provigil).
Last year I cut out sugars and now eat, mostly, an anti inflammatory diet (I had cake yesterday!!), and I exercise regularly , all of which has made a huge difference to my fatigue. I still get some fatigue, but it’s not constant or debilitating. I also try (try being a key word) to drink plenty of water - I notice the difference if I don’t.
Hi, I was interested to read your comment regarding sugar. I cut out sugar from my diet for 12 months, I have always exercised regularly and if anything I am slightly underweight despite 'eating for England'. So after 12 months sugar free I experienced no difference at all other than weight loss, so needless to say I am back on it....small pleasures in life!
I was diagnosed with ET and eventually CALR and fatigue has always been the main issue. I found cutting out processed foods, sugar etc and following more of what they call the Mediterranean diet a great way to improve my energy and reduce fatigue. 19 years on I have more energy and less fatigue than ever and am able to do things I wasn’t when diagnosed. At least diet changes are less likely to have strange side effects and you can adapt things to suit you.
92% of MPN people are fatigued according to study done by Dr Mesa and Co. I don’t know but I doubt if that many are depressed. I suspect unless you are clinically depressed antidepressants are unlikely to help, and they have many downsides.
I can’t remember the exact recommendations he made at the end of the study but I know they recommended exercise and clean living , healthy food etc, certainly no mention of the things you mentioned, if so I would probably have tried then, Dr Mesa is worth listening to.
Hi. I’m ET JAK2 positive as well and have been suffering from fatigue for the last 2 years. This winter, it got to the point I had to take several naps just to get through my normal workday… which is no quality of life. So I decided to take matters in my own hands since no doctor was able to give me advice.
SuET2017 is right about water. I have the hardest time drinking 2 liters a day since I rarely get thirsty, but I’m working on it LOL
Exercise helps A LOT. I went back to my daily crossfit routine which I had stopped because of the fatigue. It may seem counterintuitive, but yes, exercise helps immensely. I saw the first results in a week, and it just keeps getting better.
In my case, diet is the number 2 miracle drug. I rarely eat refined sugar, so that didn’t need to be addressed and I mostly eat Indian and Asian food, so I already applied Ayurvedic principles and I had a non inflammatory diet that included foods that are good for the heart. I did some research 3 months ago and read a lot on Traditional Chinese Medicine (TCM) and came across information about the spleen. Everything matched what I was experiencing. So I switched from cow dairy to sheep or goat yogurt or cheese (I don’t drink milk), stopped eating raw vegetables (I steam everything lightly before making salads), and started practicing mindful eating. And yes, it worked! Today, I can eat a few raw vegetables again, I eat very small quantities of cow yogurt as well as the occasional red meat.
It works for me, which doesn’t mean it will work for you. As Gset and Ainslie mentioned, what’s great about food is that you can tailor your nutrition to fit your needs and adjust depending on the season, your travels, what you like… which is a lot better than any pills imo.
Yes - fatigue can be one of them most insidious of symptoms of ET..also very hard to describe, get taken seriously ("oh you are only getting older we all experience this") and to treat. Just echoing all good advice already provided
* Hydration (drink a lot more water than you are used to - think you need)
* Exercise - the days my travel schedule interrupts my exercise routine, I always feel more fatigue - exercise helps!
All of the above! I have also started taking NAC at 1 gm per day in water away from food and it has made an incredible difference to my fatigue and brain fog. The other reason you can be fatigued is your Haemoglobin may be low or iron stores. This is quite debilitating. If yours is try taking some iron plus Vit B12 for a lift. Check blood levels first. And the WATER is sooooo important I do not know why but if I don’t drink between 2-3 litres of pure water daily ( not including drinks of other stuff) I get very unwell. Hope this helps
My haematologist informs me my Iron levels and all other bloods are fine. I drink lots of water, walk regularly walks and follow a no sugar low carb diet. I take HRT and use St Johns Wort.
The fatigue is still horrendous. I have a consultation tomorrow so intending to ask to be referred to a MPN specialist. I do honestly believe the haematologist department I attend does not have the knowledge about MPN.
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2022 NCCN Guidelines for MPNs
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