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ET and Fatigue

I was diagnosed about six years ago with Essential Thrombocythaemia (ET) and was pretty much patted on the head, handed aspirin and told to come back every 6 months. In the last few months I have been referred to another specialist and hoping that with two new genetic tests and a bone marrow biopsy there will be some more information coming.

My question is how do people deal with the fatigue? It is absolutely killing me. I used to climb mountains and do long distance walking. And now I would rather go hungry than try and find the energy to make something to eat.

It has had a massive impact on my mental health, and my team and I are trying to address the fatigue from the mental aspect. I've been told there is literally nothing from an ET treatment POV for it though. So I am just looking to see what other people who might have this symptom do.

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ADHD medications like adderall and ritalin help with fatigue. The problem is finding a doctor who will actually prescribe them for you because they are controlled drugs.

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Considering the mind altering nature of those drugs and my aforementioned mental health I would be steering clear of them...!

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They're not for everybody. They work great for some people.

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Even a Harvard study crashed these drugs last summer. They cause a lot of Brain damage. I am a teacher. I know what this stuff does to most. The side effects are worse.

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Thank you for your input. I had also read the more devastating side effects but couldn't remember a paper on them. I also know that their side effects can be addictive and as such wouldn't really suit me...

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Brain damage? Come on. All I can report is my own experience with Adderall. I was on it for at least 7 years in my adult years and I can assure you I'm not brain damaged. It was extremely helpful for my fatigue. I did eventually stop because I didn't like the comedown in the afternoons. I'm a member of another messageboard for MPN's where several members have reported great success with these medications helping their fatigue. If your fatigue is so severe that it is affecting your mental health then what are you going to do...sleep your life away because you are scared of a few side effects? No thanks. Apparently the original poster suffers from being bipolar and I didn't know it until looking at their profile. I agree these types of medications wouldn't be good for them. But for other people who don't have mental health issues I think they are a good option.

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Hey, if a medical institution has peer review clinical research for bad side effects then it's something to consider.

When it comes to medication saying "it never happened to me" can't be used as a single point of reference. Because side effects, assumed or proven, rarely happen in 100% of cases.

When it comes to medication that directly impact the function (or perceived funtion) of the brain it is always better to be cautious.

And you also mentioned the come down. These drugs produce an artificial high. Someone with Chronic Fatigue can't afford a come down because of the drain it can cause for days after. And with over exhaustion comes things like a flu, stomach issues, etc.

Truly, thank you for the suggestions. It's great to get opinions and other options.

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I didn't say that side effects weren't something to consider. Every medication has side effects...even the aspirin we are told to take every day. Aspirin makes my ears ring. There is a difference between abusing adderall and taking a normal dose prescribed by a doctor. I'd be interested to see if the peer reviewed paper was reporting on normal adderall doses versus high doses being taken by someone who abuses the drug. Either way I think we have come to the conclusion that this medication isn't for you.

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The paper was on Ritalin. But all ADHD meds work in a similar way. Stattera is also very problematic.

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I agree with you. I take Dexedrine short release tabs only 5 mg. I take 2 when I wake up and if I don't I sleep 20 hours a day. I was on Adderall but found it lasted too long and I couldn't get to sleep at night. However, the Dex short acting works great. For me anyways 😊

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Hi

I hope your team, as well as patting you on the head and giving you asprin, also keep an eye your Hgb levels and all the other blood related things that can get slowly out of whack and might be contributing to fatigue.

Some people with other fatigue producing conditions find that B12 shots help - as might taking extra vitamin D, especially if you live in a Northern climate.

There’s some evidence that 20 minutes of moderate exercise (walking at a rate that you can still carry on a conversation) also helps fatigue - as it does depression - but that, of course, is just what is so hard to do.

Its a major problem for most of us. I’m sorry I can’t be more helpful, but it might be some comfort to know that its due to a physical process that’s part of the dusease, as it is with many cancers - cytokines get overproduced.

Me, I find that when I start to get anaemic, fatigue hits hardest, and having a unit of blood makes a major difference . But only for short time.

If any of the things people have suggested work for you, do post about it.

All the best

Rachel

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The exercise to help thing is something we are working on with my Bipolar. The issue is getting there. Literally getting up and starting the task. At this stage we do not know what percentage is mental health and what is ET.

Since moving to my specialist-specialist (haematology specialising in MPNs), they have started working with my mental health team as well.

I take vitamin D because of where I live. My B12 is fine, I'm not anaemic and all blood panels are fine except good ol' platelets. The fatigue is this black storm cloud that I can't get rid of.

Thank you for you well thought out reply, though! I really appreciate people taking the time to share their findings.

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It’s so hard and I applaud your honesty with regards to how your feeling 😘 I’m also on aspirin alone, but also have the B12 injections due to pernicious anemia and take vit D due to living in the north. I’ve been struggling this past year, but also think a lot has had to do with my mental health. What works for one person doesn’t always work for another, just last month I got so fed up with how I was feeling / living my life and sat and wrote down what I wanted to achieve in the next year and figured out he small steps I needed to do to try and get there, if it takes me 3 years I don’t care, every step is further than where I was in my stagnant position. My son asked to complete the children’s cancer run a whole 5k 😱 I’m no runner and hate the idea but thought this would be my goal. I’m using a personal trainer to ease me into excercise, he understands the difficulties both physically and mentally and has been amazing, I see him once a week for 45 mins along with my daughter and it is simple stretching, no weights or high intensity work, I can honestly say as someone who hates excercise, I feel in such a better place when I’ve finished the session and it’s improved my outlook on the week. Small steps is the way forward. Sounds like you have a great team around you, but most of all you want to change things and you will. Xx😊👊⭐️😘

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I absolutely understand what you are saying.

I’m going through much the same. Fatigue, is an issue for me. I also am so tired i can’t be bothered to cook. So I live on easy snacks throughout the day.

It also has effected my mental health. I was recently diagnosed late last year. My Consultant informed me I has essential thrombocythemia, he actually wrote it down on a price of paper and handed it to me and stuck it in front of me. He said I had a chronic blood disorder. Then he said I have to take a 75 aspirin a day. I had scans and many blood tests same day. My iron was very low so he sent me for another iron infusion a week later.

A lot for me to take in. Considering I went alone to appointment. I still now haven’t got my head or mind around this chronic illness. A shock so to speak. I then was going for blood tests every week. Then test came back that I had (et). 6 weeks later I was informed I have CALR. I was put on 1000 mg Hydrea a day.

In other words go home take your medicines for life and just get on with it.

So I did just that. No wonder I had a mental breakdown who wouldn’t. I am now invaded with chemo. I’m up some days feeling great. Then another day down fatigued. I’m happy I know what’s wrong with me. But down knowing I have this blood disease which is now classed as a cancer. I’ve had no counselling. Yes some days I’m depressed and down who would blame me.

My family are aware I’ve an illness but not one of them understand how it effects me.

I don’t even understand myself. Even the thought of how this chemo and illness can leave me overthinking. I’m just stuck in the deep end of this chronic disease.

I feel for others with this illness I know what they are going through. I will have this for the rest of my life. It will never leave me alone. So I had better grow up and get on with my life now. With et. I have no carer so I had better carry on as best I can.

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Hi Helena, you have just hit the nail on the head ! That’s exactly how I am feeling.

I also have ET CALR, I take 1000 mg 4times and 1500 mg 3 times a week, but my platelets are still rising. I am so exhausted all of the time. I feel we are left to “get on with it” which is hard when you could do with a bit of reassurance from time to time.

I also had a total hysterectomy last May, unrelated to my ET. Which has thrown me into the menopause. So I’m not sleeping due to hot flushes. Which in turn also makes me feel drained.

I try to keep positive, I’m still working, running the house, being a wife and mother, but some days I don’t even want to get off the sofa !

What can I say, stay strong, if you get chance to rest, rest, try and keep your chin up and thank goodness we are still here to tell the tale and help each other through this. Xx

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Oh nice to we both going through this journey. I’m glad you are positive. I get my fatigue days but I also have days when I don’t even think about this et. In fact let’s just be glad we are not giving up on wonderful life.

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Hello Helena,

It is hard to digest all of this especially if dealing with it alone. However know that you will be OK if you stick to monitoring your blood reports and medications properly. Also know that these conditions are also known to go into remission -( shut down mode )sometimes too. I just met a patient yesterday whose CML went into sudden remission after 5 years. Plus new research will find a cure for these conditions very soon. Besides, MPN,s are put in the basket of cancers, they are actually myoproliferative in nature which is sort of different in some ways from cancers. So why not say NO it is not a cancer - a great way to approach this monster. Monsters can be tamed and yours shall be tamed too :) It is all about a positive approach I believe :)

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Yes your right they are monsters!!! My platelets were higher this week. Last appointment January they were normal. So strange. But I’m not worried. I maybe I should rest more. Who knows!!! Ha ha

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I always wonder why so many people follow doctors blindly. I saw that my doctors were churning me through their patient mill and since they couldn’t do more than give me pills to pop and leave me hanging and hoping or crying, I took matters into my own hands, educated myself, found possibilities of helping my body in every single way: diet! Is the big one. Clean foods! All natural soaps, cleaning products, no meds. (Other than my chemo) Ok. Yes, I said that awful word, which our doctors don’t use. But That’s ok! We need it. We can do so much more to help ourselves, though. I also have an inborn anemia, which I can’t do anything about (looking into Ozon blood treatments) I have no gall bladder, I have deep vein insufficiency stage 2 in both legs, my last MRI showed a brain artery that’s growing where it’s not supposed to and most likely will lead to an aneurism and my 8 years of untreated ET caused my glaucoma, which will now not get worse. Yes. I’m a real complicated mess. But, I have fixed my body up by cleaning my system and trying to reset my immune system. Fixed all my vitamin, mineral and enzyme deficiencies. The regular doctors generally have no idea about these. Mainstream doctors edu never taught that to them! I’m on the Paleo AutoImmune diet, which worked miracles within 8 months. I am not to be recognized! I take the vitamins, minerals, Omega 3 (as oil, many capsule sold gave rancid oil in them) and really important...CoQ10 and liver support (artichoke and other herb tablets). CoQ10 fires up our mitochondria, energy batteries in every cell of our body. I have more energy now at almost 54 than I had with 42! My whole family followed suite with all these changes. I’m kind of excited right now, but step by step, we can pull ourselves out of this rut that ET puts us in. It is possible. By the way, Snacking instead of a better meal makes us more tired. Too many chemicals and additives that I crease the chemical load in our bodies, which are already being weighed down by our meds. I hope you can start healing yourself. Get into internet and search for natural help to accompany your medicinal treatment! 👍

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Am at that stage in my diagnosis for all my conditions that if one more person suggests diet and exercise I'll scream.

Unless people are lucky to have a specialist in these diseases in their area then we will all go through the patient mill. ET is chronic, and pretty stable as a disease goes. The symptoms however are the problem. And the people I have spoken too said they admit how massively they underestimated the levels of fatigue.

Unless I have medical publications, peer reviewed papers, and clinical trials I am not putting anything in my body. I'm terrified enough as it is that ET is a ticking time bomb. And considering everything that I am taking is a derivative of a "natural product" (aspirin is willow bark for example) I am happy science is doing it's thing.

You must always tell your medical team everything you are taking, mumbo-jumbo, over-the-counter, and prescription. Drug interactions are a big cause of things like accidental overdose, among horrendous and un-checked side effects.

A lot of supplements are also water soluble so will just be peed out of the system without doing anything. And if you are deficient in anything a blood panel will always show that. And unless your liver and kidneys are on the way out our bodies are also well equipped to get rid of toxins.

In short even diet and exercise needs to be run past a doctor treating you.

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I have So many health problems caused by western meds and the science that backs it up. I have been in the doctor scene for 27 years. Mainstream doctors are great for emergencies. For autoimmune and chronic illnesses they can’t heal anyone. It is known that they only treat symptoms. There was a Uni prof that almost hit me because I wouldn’t agree to give my 3 year old methotrexate for her rheumatism in her ankles that was also attacking her eyes. I met a mother who healed her daughter with diet. Within 2 months it was goodbye rheumatism in the ankles and no more rheumatism in the eyes after a year. Hipokrates said, let food be thy medicine. I have reduced my anagelid from 6 to 4 pills a day! I believe we can slow ET down. Regarding fatigue, CoQ10 resurrected me.

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I doing something similar to you. There is not much point discussing diet and supplements with doctors because they no very little about them. I do find younger ones are more receptive to new ideas.

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Thanks Pepper. It’s really sad isn’t it. When I was a kid, food still played a big roll in healing. My parents we greek farmers and immigrants to Canada and then the States. They used to cure us with onions, garlic, vinegar, special soups, teas, amateur manipulation of sprained ankles, etc. Within 10 years of immigration they were on the med train, also. They figured the new world was smarter. Hardly anyone of my grandparents and their siblings died before 90. some made it over 100. their children (almost all immigrated to the west and Australia, lived to an average of 80. my generation is quite ill and will not make it to 80. Our kids are full of autoimmune problems. The reason: modern lifestyle, food, chemicals, stress. Fixing these is where well-being starts. I’m trying to salvage whatever part of my health that I can. : ) Under the circumstances, things are working, except that my heart does like Anagrelid. It’s my only pet pieve. Cheers

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I used to feel that I was a ticking time bomb especially since I had 5 TIAs. Since fixing up most loose ends with my health, I know my body much better and feel empowered. You are 100% right about water and fat soluble! And many other points you make. Also vitamins, etc taken in high dosages or liver support may also interfere with our treatments should be taken at the right time. Some foods increase and also decrease platelets. I have a detox problem called KPU. Kryptopyrrolurie. Apparently 1/10 women have it. Not one single doctor of the 5 hematologists I have had, private or from the government hospital had anything to say about that or diet or cross effects between anything and my meds or detox or supplements. Today medicine is completely specialized and patients need a team of doctors to get treated properly, but they don’t work with each other. Politics. I have a 15 yr old and a husband who need me. I am doing everything possible to be healthier, but step at a time, or I may fail. I’ve studied endlessly, because it’s all fascinating to me. There is much information out there, some good, some worthless. I just know that I’m on the right track. we are all different. I hope everyone of us finds a way to enjoy their lives and feel more stabil, despite ET.

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It took a long time to trust that the people around me knew what I was going through. When I got the ET diagnosis it was all calm, here's aspirin, see you soon. I had no idea how serious it could be, knew nothing about it, had no idea why aspirin was used.

I have chronic gut issues that after two colonoscopies concluded as stress related. I have bipolar and they reckon my trigger for that getting worse was the ET. Last year I overdosed on codeine and paracetamol because I couldn't handle the pain in my legs any more. Again related to ET.

Every time it's "Well you have a chronic blood disease". I just don't understand why we can't have treatment for these symptoms? That's where my frustration comes from.

I'm glad I finally signed up here. I am not alone. There are people that understand. I think there's private messaging here so if you want you can get in touch and we can rant at each other.

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Hi fuil, reading your reply to Helena as hit the nail on the head from start to finish, you are right about the frustration about the symptoms and nothing being done. Some haemo's do not even acknowledge them saying 'well you don't get that with et' and that is were our frustration grows even deeper. Is it just coincidence that we all report the same symptoms? I don't think so! Your also right about people constantly going on about we must eat clean food all the time,when we are so exhausted all we have the energy for is to throw in a microwave meal. Their are some day's even attempting to think about cooking a meal from stratch overwhelms you when your exhausted. I am trying to put enough iron rich food inside me because my rbc's are low as is my hgb and i have trouble taking iron tablets. Just trying to do that tires you! Anything and everything in moderation i say and each and everyone to their own and i would certainly never preach to anyone and tell them what they should or shouldn't do. Yes doctor's get it wrong and if people with serious and chronic illnesses believe they can do it by diet alone,go ahead if you believe that,i'm with you fuil i could scream constantly hearing it because at the end of the day it will be will science and medicine that makes the breakthrough in mpn's and hopefully sooner rather than later! I wish you all the best fuil and you rant away as much as you want!... Best wishes.tina.x🤗

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Hi there where do you live? I dont want to talk diet and exercise .Maggies centres are available in the UK and would help you.If it's America there must also be support out there, everything you are experiencing is unique to you so dont be palmed off.I have found very helpful research on any problem especially fatigue.Recent research says the patient experience does not yet match the doctors perception.Do some looking be it this site or you tube many helpful seminars who totally acknowledge the depth of peoples experience of fatigue is widespread.Do some homework.I have to go out or would help if I could.Try Maz who is the manager of the site.Good luck

Lavender 007

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Thank you for taking the time to post your response. I too am Calr et. Your experience mirrors mine completely but I would never have been able to write my feelings and experience so eloquently. Unlike you I had a chance to changed haemoa. The support I get is amazing. It makes a huge difference especially when, here I am 3 and 1/2 years on medication continues to be increased because my platelets are also.

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Hi, Helena.

I can definitely relate to what you are saying. The fatigue is overwhelming. I’ve had ET for 11 years but when my doctor told me I also had PV, I slipped into a depression. I started seeing a therapist a few months ago and I’m feeling a little better now mentally. But the medications I’m taking, hydroxy and jakafi, don’t seem to be working. My platelets keep rising. My doctor just increased my jakafi yesterday so I’ll see what happens. I also pushed myself to try yoga for the first time last month. That seems to help my mood, as well. I hope things get better for you soon.

Cindy

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Oh Yoga sound good to me. I will also try this as I have bought a mat. My platelets went up 150 on my latest appointment I feel it was stress. So before next one I’m calming down, doing some yoga and eating healthy. Drinking more water.

My annemia which I had 4 years is suddenly gone. Maybe the Hydrea treatment who knows. Let me know if the yoga goes well.

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Hi, I know how you feel. I felt exhausted in the afternoons to the point I stayed in bed with my whole body aching and sometimes took pain killers that took the fatigue away. These days I have stopped Hydroxyurea as it worked only for my platelets and not for the red blood cells or haematocrit and had a blood draw. I am feeling so much better no fatigue at all! I am expecting with terror the doctor's new orders!

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I am not giving an answer but I have been investigating Neurofeedback therapy. It has been used in ADHD where thos drugs have also been used. It might be possible that this non invasive approach could reduce the fatigue. Someone experiencing this type of fatigue maybe should have brain mapping and a feedback session to see if there is an in balance in the eeg readouts.

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I have had a full EEG. All good under the hood. *knocks on head*

Thank you for your ideas though. I might ask about attention deficit disorders when I'm back at clinic next week!

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That's really interesting, Sandy. We used biofeedback for my daughter's ADHD and anxiety, and it worked well. I hadn't thought of a similar application here. Have you tried it yet? And if so, where are you going to get it?

Thanks,

Kim

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Hi Fuil

I have MF and was suffering fatigue. I was working 7 days and 78hrs a week. I went onto a Keto diet and have benefited greatly from this. Been on it for about 18 months with a break over Xmas as I was away from home. I have been a lot better health wise since going Keto. I have since retired and my health has been good and bloods stabilised.

Worth considering.

Regards

Guy

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Thank you for the suggestion! With fatigue however it's not as simple as changing the diet. First of all I need energy to go out to get the food. Then if it isn't already prepared I have to find the energy to cook it.

I have tried Keto but as soon as I was hit with Keto-flu my energy got worse.

With chronic fatigue there is almost certainly a mental health component. For me diet and exercise sound like great solutions! But I'm always still exhausted when exercising and when I am eating healthily. I then think what's the point and go back to drinking beef OXO, and eating chocolate fingers. Why waste energy on something that doesn't make me feel better when I need it for important things like getting out of bed and brushing my teeth?

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I too have extreme fatigue. It's like I'm walking with cement shoes some days. That is my worst symptom. Just part of the disease my doc tells me. My bone marrow showed no iron so when I questioned that, I was told to take iron supplement. That does nothing. On days I do feel energized and over do it, I pay for it the next few days. I feel your pain. One day at a time! God Bless!

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Exactly the same here!! When I feel good I try and get everything done, and then I can be out of action for a few days.

A lot of my work can be done from home but we have no internet infrastructure here. Meaning when my fatigue hits badly I can be out of work for weeks because even the drive to work is tiring.

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Hi

A lot of good information about CFS on this site.

drmyhill.co.uk/wiki/CFS_-_T...

Peter

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Oh my Gosh! A link to a scientific paper! I am going to read this today! Thank you!

Edit: on reading that I'm seeing some red flags (namely the "buy my stuff" links). Also CFS has no known single cause or single test so I'll be interested to read the papers linked to validate the claims.

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I've sent this to my friend who has suffered from ME for over 20 years. She is housebound and in constant pain. Some days she can't get out of bed.

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This is a fabulous paper!! Thank you! Now the info comes not only from alternative Docs but from an Oxford source. I’ve been doing most of these things and am feeling great, as I’ve mentioned above. Better now at 54 than at 42. At my diagnosis 1.5 years ago, I was a physical mess. Not anymore. I’m still having some trouble with the detox. It seems my body washes out important vitamins and minerals B6, Zink, and Mangan that are necessary for normal everyday detox, which our body does on its own. I’ve a constant deficit in those. Finally found a dr.to test this next week. My mitochondria testing I will do in Switzerland. Haven’t found anyone to test this in Austria. Until then, I will continue to support my mitochondria with 60mg of CoQ10 daily. If I don’t take that, my days are heavy. I’m also sending this off to other friends, who are suffering from chronic fatigue and burnouts.

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oh dear - very very sad to see so many replies here that indicate the amount of issues some people experience withET BUT and yes this is a great big BUT ....... there are so many many people who have no symptoms whatsoever - my husband is one of them. Any issues he has are with the drugs - not the disease itself. The non-presentation of symptoms is one of the reasons this disease lay undiagnosed without a name-tag for so many years.

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Hi. I’m sorry you’re having such a rough time. Perhaps being bipolar plays a role but it may not be at all part of your problem. Just as we frequently blame our MPN for many other physical problems, it’s easy for others to incorrectly blame your mental health problems. I’m not bipolar yet am experiencing the same degree of fatigue you’ve described. There’s no way I can shop & cook. I’m retired, no strenuous demands like work, kids, etc. yet I can do very little anymore. I even had to get a cane chair to use as standing is extremely exhausting. I’ve tried exercise and it hasn’t helped. And I’ve had all possible checkups my doctors can think of. I’m ET jak 2+. I’m sorry I don’t have a solution or answer; wish I did. But please realize you’re not alone. Katie

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Hey Katie. Thank you for sharing. I'm very lucky I have a husband who really does understand. Have you someone to help?

I'm JAK2 Negative so I have a lot more investigation to go. I've had two more genetic tests, and a bone marrow biopsy. But won't find out until April on either.

Take care and reach out if you just want a chat :)

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Thanks. I’m also fortunate to have a great, supportive husband. Bone marrow should provide helpful information. Hang in there. Thanks for offer to chat but I’m good for now! Katie

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I have struggled with fatigue too and pretty much given the same dismissive response when diagnosed last year. However, I also have pain on my legs and some tingling in my hands at times - though my symptoms seem to be between ET, PV and MF .. but I have ET, JAK2 positive.. was 48 when first diagnosed and I was told by my first oncologist- people don’t have symptoms when their numbers are under a million - mine were mid 500’s to mid 600’s. I had significant symptoms But was dismissed.

I was a runner, 30-40 miles a week. The extreme fatigue is what drove me to the Dr for 5 years as I struggled to battle it. Once diagnosed I was told it was really nothing, not cancer, not anything that baby aspirin wouldn’t help - I even had someone in my peer circle tell me - I should be thankful I didn’t have a malignant cancer that matasisize - that would be awful they said.

Well - I have since gained nearly 55 lbs. I try to walk and eat keto... but it’s horrific and I am so uncomfortable to run into people who are shocked by how different I look - though they try to be nice.

The tough parts about having this malignant blood cancer - definition on the MPN site - is the dismissal we get from the medical community bc our Cancer can be slow moving. We can look fine to everyone- but feel horrible- ever day - changing so much for us.

I pressed hard last year bc I couldn’t handle the fatigue- and by attending an LLS EVENT.. found a patient with a better Dr. and I went to see him. He prescribed Hydroxyurea and 6 months later... I have significant change in my energy.

I still compensate with lots of caffeine.. but the difference by being on this medicine is significant!!

My prayers to you and much encouragement to find a dr. That will treat your symptoms!!

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Really glad to hear that hydrea has made a positive impact on your symptom burden.

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Hello Fuil,

One haematology consultant (not an MPN specialist) told me that diet has very little impact on platelet proliferation, because so little energy is needed to produce platelets that it’s not possible to control them with it. That might be why doctors generally aren’t interested in any dietary manipulation.

There was a link to an MPN anti-inflammatory diet online, which was developed as part of the NUTRIENT trial, looking specifically at the impact of diet on MPN. It’s since been taken down while the trial results are being analysed, but if you’re interested in a copy I can email it to you as I saved a copy. I’m following it purely to see if it helps the fatigue, and it does alleviate it about 25%. It means I don’t need a nap every day in addition to the 9-10 hours sleep a night... I stick to it about 80-90% of the time, because life without the occasional off-diet food treat would be extra punishing and we don’t need that.

As you say, food prep goes out the window when the fatigue is on board. I get a veg box delivered bc I live in a rural area with no shop, and when I’m feeling well enough I spend some time prepping the veg, or making it into good meals, and then freezing it all. Then even my non-cooking husband is able to fix some vegetables when I’m coshed on the sofa / in bed. The freezer is definitely my friend in times of food fatigue.

Recently I started having counselling sessions via a local cancer charity, and they are proving so helpful. I think speaking with a counsellor who’s specifically experienced in helping people with serious illnesses really makes a difference. She’s given me lots of advice and strategies to help manage it mentally, and understands a lot of the issues surrounding having a chronic illness. It’s helping me accept it all, including the fatigue.

I don’t know if any of this is of any help, but please keep us posted on any strategies you find helpful.

All best,

Lucy (39yo, ET JAK2+, in the U.K.)

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Me too. Had awful side effects from Hydroxy. Told "either take it or don't

But you may have a stroke. All they seem interested in is platelet counts.Am so exhausted partly because of ET but also ongoing UTIs for the past 4 years. Am going to the CFS Clinic on Friday - why I don't know because there is nothing to be done about that. Also was referred to the Adult 'entail Health team because of my "low mood" which I pointed out was because of my infections plus ET. Referred to a psychiatrist. TOld him how I felt and he said "you are exhausted" Quelle surprise. So I have now been referred to the frailty people, e Roy clinic and social services!!!!

HAve. Had recurring UTIs for al last 4 years but nothing clears it up. I give up.MAry

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