I've had a pretty bad time of it in terms of fatigue today and that got me wondering... for those of you who have had ET for awhile (five years, ten, twenty ) have you found that your fatigue has stayed pretty much the same over the duration or has it gotten more severe, or maybe even easier than early on? I'm 66, was diagnosed a year ago. I've been following all the tips that I've learned here, like drinking more water, but it seems like I feel worse than I did a year ago -- although it could just be I'm paying more attention now. Anyway, I'd like to have a better idea of what to expect as I go along. I'd very much appreciate learning about your experience with this, and thanks in advance.
Kim
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I am not suffering from ET for a long time, so may be my input wud not be as good as others. I am 34 years old , had ET for 2 years. Fatigue is something which we MPNs have to fight on constant basis. Intially I used to feel myself worn out most of the time but I think I have learned to manage my fatigue now. Look for othet reasons as well. Sometimes fatigue cud be bcz of other factors like thyroid conditions, vit B 12 deficiency, vit D deficiency, iron deficiency etc. Stay active, eat lots of protien, apple cider vinger is my magic tonic, you can try also , turmeric supplements and obviously lots of water.I was not able to stand in kitchen n cook something initially but now I do weight lifting in gym 5 days a week.good luck.
That's so encouraging - thank you. Can you tell me how you use the apple cider vinegar? I haven't heard of that before. I'm drinking tons of water and do notice the difference when I forget. Really appreciate this,
I mostly take it two times a day. By dissolving one tbs in one glass of water. Although it has nothing to do with fatigue directly, but I feel myself quite energetic and cleansed out.So overall it affects me I guess.
Are you on Hydroxurea yet? Or just aspirin? What do you think had helped you get over fatigue. I am at that stage of being too tired to cook but hoping may improve after I get used to the Hydroxurea. Cheers, E
I'm not going to be much help as I was going through menopause just prior to being diagnosed as JAK2+ with only slightly raised platelets and have suffered extreme fatigue all the way through and started hydroxyurea soon after diagnosis. I became intolerant of hydroxyurea after 3 years and have been on interferon for 1 year and I am still uncertain whether fatigue is from medication, condition or probably both. I have never had a bone marrow biopsy so it's not 100% certain of being ET.
Thanks for replying. Every comment helps -- I don't know anyone personally with ET, so connecting here always helps with feeling like I'm out on my own in this.
It is great you reached out. I have found this forum invaluable particularly in recent months. I have had ET for about 18 years st least, but only diagnosed 9 years ago. I am 56. It seems if is starting to get complicated.
Thanks, Elzbietta. I'm starting to think that it gets more complicated and then, as I try things that help, it all starts to make some sense... until it doesn't and I have to re-group again The forum is a lifesaver, absolutely
I was diagnosed with ET 7 years ago and started on HU+ aspirin immediately. I tolerate the medication well but am grateful I am retired. I get very tired in the course of the day despite roughly 7-8 hours sleep over the 24 hours. I feel especially tired after eating so no longer eat large meal! I have two responses to my fatigue - I either go to bed or 'exercise' through it, meaning I walk. I don't feel that I am more tired than I used to be but I take more notice of it and try to 'manage' it in the same way as others : 'good' diet, plenty of water, sleep, reducing stress and simply announcing I'm going to bed for a while.
I have not noticed a change in the level of my fatigue but in my sleeping pattern. Currently I do not have a problem but there have been periods when I couldn't sleep, slept fitfully and so on. I could find no explanation for the change - I was not worried etc.
I really feel very little is under my control these days but feel very grateful for the quality of life I have. Sallie
Thanks, Sallie. It sounds like the level of fatigue has held fairly steady over the years, and that's encouraging. As much as I have bad days like yesterday -- when all I can do is sit and do nothing -- there are many days I can manage around it, and I'm grateful for that. When the hard days hit, I have to remember that most of my days aren't like that, to rest and wait for the next day, which is usually better (like today is.)
I was diagnosed with ET 6yrs ago, I'm 41 and work full time. Like you I get days where I feel like I can't move and have slowly learnt that pushing through the fatigue is not always the answer. I'm learning to pace myself a little bit more and am noticing the benefits. I can't say the fatigue has got any worse over the years since my diagnosis, but the way I'm managing it has had to change. I exercise regularly by walking the dog twice a day, which I truly feel does energise me.
Good luck! Don't ever feel alone, there's plenty of us ETers out here!
I recently turned 60 (yippee!), and my ET has probably been with me for well over 2 years and was officially diagnosed a year and a half ago. Fatigue is a major problem for me. It was a problem before I commenced Hydroxyurea medication in January of this year, but it is definitely worse now. I am not sure how much to attribute to the medication and how much to the ET... I am sure they are both to blame!!
I do also try to keep up with the fluid intake, and it certainly helps. There was an interesting study published last year of 699 patients that looked at quality of life for people with MPNs ncbi.nlm.nih.gov/pmc/articl...
fatigue was a very real thing for the majority of people with ET. I found the study very helpful reading as, unfortunately, some of the medical people I have encountered have not understood that fatigue is a symptom of ET and it is good for the morale (when being fobbed off by someone with a white coat and stethoscope) to know that what you are experiencing is real and is widely experienced by others too!
Very Best Wishes to you Kim. It seems that we do have to battle the fatigue with a certain about of determination and gritting of teeth in order to keep on keeping on! I have found that a walk can help, but I have also experienced going through a bad patch through overdoing the walking, so one does have to be a bit sensible about it!! Hope you are able to find something helps you.
Thanks, Peter. I'm working on seeing a specialist in ET since my regular doc, who has been wonderful with other situations over the years, knows very little about this disease and so dismisses my concern over fatigue. I'm glad I've found this forum; if I were on my own I don't know what I'd do. From all the responses, I'm getting a better idea of how to manage around the fatigue, and that's great.
I cannot give you a long term response, but I'm in the same boat as you (68 and diagnosed ET JAK2+ a year ago). I have certainly noticed a very significant increase in fatigue / decrease in ability to do things that I previously took for granted. I had a TIA in early summer and that seems to have exacerbated the fatigue issue. Drinking lots of water and a good diet certainly helps, and I can certainly empathize with Sallie re feeling washed out after a big meal - so lighter meals are now on the menu for me. I also find that I cannot tolerate wine too well, so i now have a glass of chilled water with my meal, which if nothing else is a lot cheaper
I should also say that, for me, this has not been a steady progression and I have had periods where I felt more energised, did too much and got wiped out! I know better now so I am much more cautious about ramping up the effort too much on good days.
I guess this is something that we just have to accept and adjust to, although each of us responds in a different way. Good luck and I hope we both get more good days than bad - and its great to have this forum to fall back on when you need a lift
You're so right about relying on the forum, John -- and thanks for your reply. It's helpful to hear from enough people to get a sense of what is common and what is more individual. I've been focusing primarily on water intake and a little on exercise; now I'm going to work on making exercise more consistent and scheduling activities with more recovery time following. Even if the responses are small, anything that gives me a little more sense of control is so welcome.
Hi, I take sublingual B Complex and since I started, the difference in my fatigue has been amazing. I also take a sublingual D3 supplement beside others but those have a noticeable positive effect. Yes, I still AM very fatigued and suffer plenty of bone and muscle pain but manage it far better. Hope these may help you also. ATB, Penelope
Penelope -- I wanted to let you know that I started taking B-12 and it's made a big difference. Less fatigue, and when it does hit, it doesn't last as long. I really appreciate you mentioning this -- it's helped a lot.
Hi Penelope, I am going to start on the B and D complex too. So tired of late following TIA 6 weeks ago and started taking Hydrea just last month too. I will let you know if it helps. I am confident it will. Thanks, E
You may as well give it a try as it isn't going to do any harm. B complex is right but you only need D3 rather than a D complex. the D3 is the sunshine drug. I take this after being advised by by the nurses at the Pain Management clinic, who all take it in the winter. They tell me they can always tell the difference when they take it. Makes them brighter and more able to get through the days. I hope all goes well for you with these. ATB. Penelope
Hello, Hope you're feeling better. This is a great site, and I was looking to chat with someone in my area (Oakland-East Bay, California, US). I'm a Medicare-age female, diagnosed by routine blood test (platelets 1.6 million!). Am on Hydrea now, which causes extreme anemia and low WBC as well. People say to eat more protein, but it has not helped the blood counts. Would love to find someone local to share ideas on how to deal with this condition. Thank you and take care, jen
I meant to reply to you, Jen, but I think I messed up the various forms. Anyway, I'm in Alameda, same age, similar issues. We should definitely connect. My email is ksoskin@gmail.com. I was just thinking that it would be great to have someone nearby to talk with, so I'm glad you reached out.
Hi Kim! Would love to discuss our mutual "situation." I'm in Alameda, also, on Bay Farm. Please let me know whether you'd like to connect by phone. Now I don't feel so "alone," but I'm sorry you have to go through this stuff too.
Jen: You're in Alameda! Wow! What are the chances of that? I'm on the main island, by Lincoln Park. If you email me, I'll send you back my phone number and we can connect. ksoskin@gmail. Looking forward to it!
I'm in Alameda, same age, similar issues. We should definitely connect. My email is ksoskin@gmail.com. I was just thinking that it would be great to have someone nearby to talk with, so I'm glad you reached out.
Again I’m not a long timer yet, 39 yo and diagnosed almost 2 years ago (although an unrecognised blood test showed elevated platelets 4 years ago) but I suffered badly with the fatigue at the start, was convinced that it was caused by the large number of platelets 1083! My reasoning was thicker blood moves more slowly therefore oxygen moves more slowly around the body. I’m no doctor so that was just my interpretation of it. I was convinced that if I could lower my platelets I would get my energy back. I spoke with my consultant who then referred me to the MPN specialist in haematology and I stated on Pegasys. I can honestly say that the fatigue has improved dramatically. I still get it, don’t get me wrong but before it was a whole body ache and tears in the morning at the thought of going to work (I love my job!) but now I get a ‘head’ fatigue ie I get grumpy that I don’t want to get up or get in the shower but a few minutes of having a word with myself and I can power through. I take high doses Vit B12 each morning and that helps once it kicks in.
I think it is related to both the mechanism of the disease and in some cases worsened by the drug. Pegasys is actually making it better for me but ET still holds me back some days.
If I can maintain this level of energy that I’m on now with mild fatigue, then I can’t complain too badly about it.
Thanks so much, Kerry. Your explanation of what's going on makes sense to me, and no doctor I've talked to has said anything that gives me a different picture. Since starting to take B12 and some changes to my diet, I'm starting to feel better -- both suggestions I got here. And I feel the same way; if I can maintain what I've started to feel this last month, it's certainly manageable. We'll see!
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The forum is a lifesaver, absolutely
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