I've not posted much before but after an appointment with my consultant today I'm feeling rather deflated and a wee bit lost.
I was diagnosed with ET (Jak 2) 3 years ago after a spell of being very unwell with what they eventually found to be Budd Chiari Syndrome (blood clots in the liver). I'm now 31 and have been on pegasys interferon and warfarin for the last few years, with things generally ticking along OK.
The last couple of months however I've been really struggling with fatigue, which has impacted work and meant I've had to take some time off and do reduced hours. I've felt on survival mode, not really keeping my head above water trying to manage life and work alongside the fatigue.
I spoke to my consultant today about how much I've been struggling and wasn't really offered many suggestions or help. Their main suggestion was to walk a bit every day and find a hobby.
My work have been flexible so far, but also want some clarity/ answers which I dont feel very able to give. I also can't financially afford to keep on reduced hours long term.
I guess I just wanted to see if anyone had any similar experience, and whether this is just a phase I'm going through where I'm struggling more with fatigue.
I realise there isn't a simple solution to managing the fatigue but any suggestions would be most welcome (other than get a hobby ... which I have many of!) I'm also wondering if anyone has advice on how to navigate the conversations with work and HR.
Ultimately I think I just wanted to connect with this lovely community as I'm feeling a bit flat after today's appointment. My friends and my partner are all supportive but don't quite understand fully.
Thanks,
Bea
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Bea_W
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I, too, suffer quite dreadfully from fatigue; if I overdo things, I then can't do anything for 48 hours or more. Fortunately, I am retired, so work isn't an issue; I was actually quite relieved to get a diagnosis as it would explain the fatigue and I wasn't just being lazy! I don't have many answers, I'm afraid, other than to listen to your body and don't overdo things. I find I can't, anyway!
Do you have blood test results for before and after the bad spell started? This might show any obvious places that changed and where to start looking and maybe fixing. You'd want to see at least the regular CBC panel and the metabolic, CMP.
My Dr says his patients get good symptom relief on Rux. We've seen some here with the same experience. I'm on Besremi now and still suffer with malaise (not fatigue) but I plan to keep at it.
I too struggle with periods of fatigue, it’s hard juggling that work and kids. Have they checked your b12 and iron levels? My fatigue is very closely linked to a drop in either for me, more so than my platelet count.
In terms of managing it, I do find that I need to push myself but also make sure I rest too. I started making sure I went to bed at the same time every day 10pm and try to get up around 6-7 I’m usually up long before them but have the mindset!
I went on a leukaemia care patient day about managing fatigue it was great, you can access the presentation and I think they’ve also since done a YouTube video too, would recommend looking at it x
Hi. I’m so sorry you’re having a hard time. It’s something we all understand for one reason or another. First, don’t assume your fatigue is just from you MPN, it could be for other reasons too so I encourage to get checked for other causes. I’ve read & been told that your level of Ferritin is a more accurate way to diagnose if you’re low on iron. Ferritin is the amount of iron you have stored & available to use. I do find gentle exercise helps me as do naps. I have to drink caffeine though each evening or I’m exhausted & feel wretched. But that means I can’t also drink it earlier or it won’t affect me as much as I need. I’m sorry if this isn’t more encouraging. Good luck & please let us know how you make out. Katie
Hi Bea, I have a lot of trouble with fatigue too. I’ve had the experience of being on hydroxy which was fatiguing as well but did give me more control over which days I took two doses and which days I took one dose, not a good option for you at your age.I’ve noticed on peg that my haemoglobin is way down, maybe yours is too, that would affect energy levels. Though I’ve yet to find out what can be done to get it back up again. Good luck with it all. Jo
Hi Bea I also suffer from chronic fatigue and understand totally how difficult it is trying to carry on as normal when you are physically and mentally exhausted. My workplace has been really good and allowed me to work from home and reduced hours. All it took was an occupational health meeting which I was very lucky the Dr knew a lot about Pv and peg interferon. Speak to your manager and hr stress to them that peg interferon is a very powerful drug and a combination of that and your condition is causing your fatigue. If you get no joy ask for them to refer you to occupational health. By law you are fully entitled to reasonable workplace adjustments because all cancers are classed as a disability. Hope you get on OK take care x
I too have budd and pv also get fatigue but not all the time just find I have to try and do tings but not always feel like it have now have retired so that helps
definitely have a conversation with Remploy about the work issues. My (then) employers gave me 2 weeks off after a stroke and Remploy came in to help discuss my phased return.wrt fatigue I recommend listening to your body.... if you need 12 hours sleep for a few weeks, do it. 7-7 was a thing for me for a while and I also had lunchtime naps.
minimise the housework and socialising.
I still need 8-10 hours sleep and limit my stressful situations if possible. Cognitive fatigue from trying to chat with a TV on or read at the same time as listening to music is also a thing. Regular outside walk and exercise also helps 😊
Plus all of the sleep hygiene things like cool, tidy bedroom, same time bed/getting up routine and no phone/tablet/laptop in the room.
I’m badly affected by fatigue and it was what led to my ET diagnosis. I’ve since attended a fatigue clinic which involved weekly appointments over many months. Although it is still my ongoing battle here is a summary of the tools that helped put me back on my feet and I still use to cope:
1. Physical fitness. I had become so weak and unfit that I had to start with a daily routine of simple exercises with a physiotherapist to build some core strength and physical resilience. New exercises were added each week. I also had to do other regular daily exercise such as walking. The physiotherapy led to an introduction course to yoga involving a discipline of breathing exercises and physical stretching.
2. Pacing. It was an effort to learn and stick with this. In the first few weeks I had to make an hour by hour plan for each day’s activities with regular rest times built in. The rest periods included doing something relaxing and enjoyable. As my physical strength built up I was able to lengthen the activity periods but well timed breaks are necessary. Previously I’d try to cram too much into a good day, not achieve what I set out to do and be floored for many days after. A depressing cycle.
3. Stress. Learning ways to deal with it and using cognitive strategies for switching off. A good sleep pattern is vital. I was introduced to mindfulness. Breathing exercises are also useful and this crossed over with the yoga. For me an outdoor activity such as gardening can encompass it all.
You could ask your HR dept for a referral to occupational therapy. An experienced therapist should be able to help you and your employer find a way through. If HR dept become less helpful and you’re in the UK then ACAS is a good source for advice on employment regulations and practices.
I hope you’ll find a routine that’ll help level out the fatigue. Feeling flattened by your consultant is the last thing you need right now.
Thanks for this - but how do you manage to do anything else if you have done some "simple physical exercises"? I know if I tried that, I'd just sleep for the rest of the day!
I was started off with exercises that were manageable for me. It was a daily routine and initially I did them in the evening, before bedtime. I was discouraged from daytime napping. It left me groggy and far from refreshed. The first few weeks of hour by hour planning ahead for each day’s activities/rest periods was important for coping. None of this was easy but it did pay off!
I feel I could have written this post myself - worsening fatigue and diagnosis of ET and with clots around the liver a few years ago.
My fatigue has got worse recently, to the extent that I sometimes can’t even stay awake while I’m at my desk working - I fell asleep in a video conference a few weeks ago (luckily off camera!) but I think unless people have experienced it, it’s incredibly difficult to understand that fatigue is not just feeling tired. It’s an all consuming blanket that can swamp you and sometimes you actually can’t fight it off.
I have also recently gone back up to full time at work after a period off sick - I had the usual things in place - reduced hours, phased return, occupational health consult, weekly meetings with manager to discuss progress and how I thought I could manage the next week. I’m incredibly lucky to currently have a manager who is very supportive. And because of that I have managed to get back to full time. Like you, the financial implications of being on reduced hours make it a no go for me in the long term.
I don’t have any useful tips on managing the fatigue, other than to say actually, if you need a nap, take a nap - sometimes even a 30 min nap can help me get through the rest of the day. I also find the comments about walking and finding a hobby very unhelpful. I try to push myself on days off eg one day of the weekend and then rest the following day. And then when I’m on annual leave. My hope is that by gradually pushing myself a bit and building up I’ll be able to sustain a bit more longer term. But I feel very deflated sometimes when I consider how much energy just getting through the day takes sometimes, and especially recently when the fatigue has hit me harder than perhaps in the last 12 months.
I have noticed that even with a very small increase in my platelet count, my fatigue increases. So am going to discuss increasing my peg dose a bit at my next consult with the Dr. My platelets have definitely gone up since my last blood test (and when the peg was decreased slightly).
In terms of handling HR/work - if you’re in the UK make sure you’re clear in your rights under the Equalities Act. MPNs are cancers and therefore covered under the EA and organisations have to try to make some sort of adjustments for you (if reasonable). And try to get an OH report done if you can through your workplace provider if you’ve got one - this can be useful in helping conversations with managers about working from home more permanently, and flexing workloads so you can work around your fatigue eg I have an arrangement when if I need to take a few hours break in the day, I can make up the hours in the Eve or the next time I can.
I think all I can really say is, I totally get it - I find the same issues trying the work and manage the ET and fatigue. I sometimes feel like I’m just about clinging on, but then there’ll be a good day in the midst of that which reminds me that I probably will be able to get back to balancing full time work and the fatigue, and it’ll just take time and patience.
Hi. Yes I also suffer with fatigue, somedays much worse than others. Someone here mentioned ferritin and I would agree. My ferritin dips really low sometimes and Haematology don't check for it unless I ask. I gradually feel myself getting weaker and weaker over a period of months and eventually get to the point where I find myself putting off going upstairs because my legs are so heavy and my heart races. It normally results in being put on iron tablets for a couple of weeks (closely monitored with extra blood tests), and then I feel a bit better for a while.
I know work is difficult, I am lucky and work part time and since the pandemic started I work from home. That's obviously not possible in all jobs and I do wonder if I could manage going back to the office again now. However, MPNs are considered a disability so employers should make adequate provisions for you.
The only other thing I would add is that burn-out is very common. You feel good, so you try and do everything whilst you feel you have the energy. This then sets you back for a couple of days where you feel awful and can't do anything. It is better to make a list of things that need to be done and spread them out and be strict with yourself - don't tackle tomorrows list today because you think you feel ok.
Hi Bea. I totally understand. My work was very physically and mentally demanding with long hours. Occupational health assessment will help as they will set out guidelines as to what adjustments can be made to help you. You are protected in the UK by employment laws around cancers. I also spoke to Macmillan as they are brilliant at talking you through your rights as well as lots of other issues you might come across. For me it was impossible for the 'reasonable adjustments'that I needed to be made so I left my job through mutual agreement but that is by no means the usual outcome. Good luck
Hi, fatigue has been major in my life with ET.You are young, it’s so very hard for you to cope.
I’ve read a few replies. We are all so very different.
I suggest you ask for a vit d and b12 blood test.
I was so fatigued only to find I was very low on vit d.
Are your platelets higher than norm?
I believe there is a scheme where assistance at work is available. Maybe macmillian can help you. I do know it was available for someone I worked with who had MS.
The best piece of advice I had was get a cleaner so that you can enjoy life. Could it be if you maintained your hour, could do something like that?
Are you in the uk? If so is it worth you trying for PIPS I know it’s hard to get but worth a try.
I have come to realise that being by myself totally , helps me. I go to my room so that I can’t see housework. Very difficult for you especially if you have a family.
Are you aware that some places offer fatigue clinics. Well worth a shot.
As we all know the main symptom reported for MPN is fatigue and it may be just that but as others have said it’s maybe worth checking other causes. Peg can for some lower thyroid so maybe worth checking thyroid levels. If you are in the UK the NHS mainly go by TSH for thyroid, this only a very rough guide and fairly useless for optimising your thyroid, Free T3 is the main one to follow and should be in top quartile. There are several websites/forums that explain how to test and treat thyroid properly such as Thyroid UK And Stop The Thyroid Madness for example. Pegasys itself can cause fatigue for some.It is also well known moderate exercise helps fatigue for MPN such as brisk walk or jog or cycle for approx 20-30 mins a day. Maybe also worth checking B vitamin levels etc.
Your very young and should have relatively good energy so probably worth keep looking to find the actual cause of your fatigue.
So sorry to hear of your struggles. As you can see, fatigue is a a common denominator among people with MpNs. You’ve gotten some great advice from others on this thread. I’m post Et MF and when I suspected I had progressed, it was because my fatigue had become overwhelming and I noticed that my hemoglobin started dropping. My hematologist at the time didn’t take it seriously so I found an mpn specialist who did a BMB and confirmed my suspicions. My iron levels were fine so make sure you consult with your doctor before taking iron. I’m not implying at all that you have MF but I got diagnosed with ET in 2008 and I’ve had a lot of experience with it.
Also, as others have mentioned, physical therapy is very helpful. I did 2 months last year to build up my strength in my legs and my balance. I was also walking for exercise on a regular basis. I got diagnosed with pneumonia 6 weeks ago and got very weak again so I’m starting PT again as soon as as my cough goes away.
By the way, I take1000 mg hu now but over the years, my doctors have tried other medications to see if my fatigue improved. My doctors have been hesitant to put me on peg interferon because of the side effects. You might ask your doctor about other options.
Hi Bea, I would be concerned that the fatigue is a relatively knew thing, which also makes me agree with others that it may not be related to the MPN and that needs to be explored.
Personally I find diet and exercise affects my fatigue levels. Snacking on fruit, veggies and nuts rather than my preferred chips and candy really makes a difference, and exercising as much as I can made a huge difference.
Also if you decide to take iron supplements, my dr. recommended taking the pill with orange juice an hour to1/2 hour before eating. Doing that instead of what the bottle recommended (take with food or milk) really improved the absorbancy and lessened the constipation associated with taking iron. I suspect anything mildly acidic would do, I had a couple of slices of orange instead of orange juice.
Hi, I am 72 with PV. Did not have much fatigue until the last year. I have not had any extensive work up to look for other causes. My labs are currently WNL. The only thing that seems to help me is exercise. I bike ride, use a treadmill in the winter and walk whenever possible. I try to get at least 45 minutes of continuous exercise, boosts energy but only for about a day. Getting started each day can be a challenge. Best to you.
Bea_W. sublingual B12 in the form of methylcobalamin preferably in a fast melt formula offers a good way to supply the needed vitamin to make red blood cells. Magnesium is required to active thiamine which in turn activates vitamin B6. Magnesium is also needed to activate vitamin D, a deficiency which can contribute to fatigue. Magnesium and thiamine are needed to create ATP the energy currency of the cell. Anti thiamine factors can diminish or destroy thiamine. Magnesium loss can be caused by stress, loud noises, sweating and medications to name a few. Bea, this represents a possible area to investigate further.
Fatigue is my main symptom with PV. I find it can be extremely hard to get started in the morning. It always feels to me like climbing up out of a well.
At some point, I just push myself to start and usually I start to feel better, though it will come back later.
My hematologist told me, "The more you do, the better you'll feel." In general, I have found that to be true. I'm still working. I push myself to walk or bike every day.
But, I will admit... sometimes it can be tough. I'm not who I used to be in terms of energy. But I'm also not ready to give in to it.
Hi Bea, totally agree with what everybody is saying I have ET Jak2+ & PV and the fatigue was horrendous, I run my own business so you can imagine the stress & fatigue I saw occupational therapist and they suggested magnesium which has helped a lot along side a healthier diet & exercise good luck hope you find a way for it to improve!
Sorry they didn’t say I just bought a value pack from my local chemist seems to be doing the trick, I tried to upload a pic but it wasn’t having any of it lol, best wishes!
I'm 41, with pre-fibrotic MF (post-ET), taking 50mcg Besremi. Fatigue is the hardest symptom for me.
Besremi knocks me out for the first 48 hours and then I'm in what I call "recovery" for a few days. During this time, like Hidden described, if I "overdo" things, then I pay the piper and have to totally reduce activity for 24-48 hours.
So, I've been looking at is as having a "budget" for stress and physical activity. Like MWxxxx describes, staying within that "budget" rather than pushing when I feel good is key.
And like Rem31 describes, I've been learning how to take breaks more often, ideally preemptively. I haven't explicitly thought about it as "pacing", I have been describing it as "being slow". I like the idea of pacing, though, as my tendency is to sprint as fast as I can, always — but now I have to have the whole day in mind, and watch my "budget", etc.
I've definitely been struggling with how to best adjust.... I keep setting the bar a bit lower and then feel like I'm doing well, but then something will happen like the last week, where I was very fatigued after my Besremi shot for a whole week. I'm still learning to accept that I'm not fully in control, it's important to be kind to myself and not take it personally when I'm having an off week, etc.
I exercise regularly (elliptical and swim). I can't do as much or "push" like I used to. But I definitely find the exercise helps immensely, is great for circulation, etc.
I relate to the lack of care around your symptoms. My doctor doesn't really address my symptoms — as long as my blood values are good and I'm not depressed, she's happy. (I became depressed on pegasys, which I tolerated much more poorly, barely recovering from one dose in time for the next.)
I have extreme fatigue, though I'm not sure which of my several health conditions it's related to. The best thing I've done to help it is to make sure I'm practicing good sleep hygiene. No TV, no screens in the bedroom. Bedroom is for sleeping etc. If I'm able to get a decent night's rest, I'm a little bit more functional the next day. If you're having sleep issues, addressing that can really help. Furthermore, proper nutrition and making sure you're getting Vitamin D is really important. Have you had a vitamin level checked? Mine is abysmal no matter that we try, so that's something to look into as well. Consult with your doc as well about trying some B vitamins, they can help with energy levels too.
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Fatigue
An explanation for why I am fatigued.
Fatigue
