Dealing with fatigue?

[Florence1961]

Hi there. I'm compiling the next issue of MPD Life and would love some current stories/tips from MPN patients of how you are dealing with fatigue. If you could post your comments/tips by 1st July that would be great thanks

[Aime]

Hi Florence, my tips are the tips I have learned from the great people on this forum: healthy diet, really good hydration, rest if you can't push yourself out the door, exercise as much as you can, meet a sympathetic friend for coffee and treat yourself.

I find sometimes exercise works really great but if I can't crawl out the door I rest. I find pasta, bananas, bread, fruit, nuts do give me more energy most of the time but if I'm really fatigued rest is the only solution usually followed by a venesection.

Hope this helps xx 😺😺

Kind regards Aime

[IlGod67 in reply to Aime]

Hi Aime my name is Angela and I have Myelofibrosis 4yr.s and post ET.8yr.s and I just wanted to let you know that I was put on Ritalin for the fatigue about a yr. ago .It was a very good thing for me as it helped the fatigue,the medicine is usually used for hyperactivity disorder and it works great for energy...hope this helps you...Angela

[Aime in reply to IlGod67]

Hi Angela,

Thank you very much for the tip. I will ask my haem about this. Much appreciated, kindest regards Aime xx😸😸

[mol56]

Don't have any tips but have an observation.

It seems that whatever MPN we have (ET, PV MF) and whether or not we are on medication, we all seem to suffer from extreme fatigue at some time- some of us more than others.

If only the consultants and clinical staff and G.P.s would acknowledge this, it would mean a lot to me. Not expecting a cure for the fatigue but just to be believed and not dismissed with "Oh but your blood levels are quite good". They may be but sometimes I still feel fatigued.

Sorry if this appears to be a bit of a rant.

Judith

[Rachelthepotter in reply to mol56]

I absolutely agree.

[Hidden in reply to mol56]

Yes, I agree with you. They don't really seem to have a clue as to how this disease actually affects us.

I ended up in an ambulance last Wednesday due to shortness of breath exacerbated by the intense heat and humidity. I didn't call them but people in a shop who were concerned about me did. It took 45 minutes for them to arrive. By the time they got there I was as good as back to normal. I gave them my MPN card, the response was "we've never heard of it".

It's tiring in itself having to explain things to the medics. We haven't made it up after all.

[suzanneh in reply to mol56]

I have experienced exactly this last week!! Could have cried when I came out of the haematologist's office

[Angelamay in reply to mol56]

Hi I'm glad u mentioned the fatigue because i suffer with it a lot too and get it dismissed by the drs and it makes me feel like I must be making it up

[Inca]

I agree that a good diet,keeping hydrated,outdoor exercise within personal limits help,tho the fatigue does arrive sometimes whatever. This is more of a warning...earlier this week, the heat we have had where I live in France has been what we call 'canicule' and warnings are given to stay indoors and cool as possible.Obviously as a P V person , this has affected me badly.However there are things to do,so rise with the birds and see to what we must in the few cooler hours.So Tuesday morning,weary from a sleepless so hot night,I was attempting to feed my puppy,bending down,I tumbled and broke my femur,hospitalised,operation,now two months of immobility without wheel chair or crutches .So really to warn that when we have the dreaded fatigue ,rest is the safest,,this is the second time I have broken a limb trying to fight the feeling and carrying on. I hope this time I have learned a hard lesson!!!! To try to stop working in time and learn the signs of the fatigue should be our priority,so we can avoid a fall or worse. In 7 yrs I have tried to pace myself ,but still get caught out...hope someone comes up with clever solution..Best wishes Florence for useful tips.,Best to all.

[Stevesmum42 in reply to Inca]

Hi Sally. So sorry to hear of you broken femur. Especially when you were doing something as gentle and nice as feeding your puppy....you have been in the wars as we say. I hope you can maybe do some painting or sculpture whilst you are immobile. If you feel up to it. Great occupational therapy . !!!

I broke my shoulder earlier this year , fortunately it healed very quickly even the fracture consultant was surprised at the rate of healing,needless to say so was I, I do hope you have the same result. Take care. Love Sandy x

[Inca in reply to Stevesmum42]

Thanks Sandy,we just do not expect these falls,still think we are invincible!I am lucky to have My great team of nurses who do my blood tests every month,now dressing wound for me. Worryingly,I now discover that my femur could have splintered at any time......good job was not coming down from my atelier at top of the house!!! Hydrea seems to have a lot to answer for,as I already have had carcinoma op last year.....so we must heed about its side effects,the sinister hidden ones.My Dr had prescribed vit e and others that I must take for rest of my life,as blood was showing lack of. Been fit ,healthy non smoker,or drinker,active breeding and competing with top horses all my life.......how do we manage this ghastly maladie that ends up giving us other nasty things? Sorry,ranting on a bit......be 2 months healing,I am pushing an old ladies wheels with a bag on to help hop around......I now feel my age....!!!Puppy is adorable ,house trained already,he and my other G S D are a great source of entertainment to watch playing, little and large!!!Keep well Sandy,hope I heal as quickly as you and we do not break any thing else !!Thank heavens we are a bit cooler today after a long ,long time in 30 - 40 degrees.This is a diatribe ,but we all must realise how vulnerable we are.Best to all ,Sally

[Stevesmum42 in reply to Inca]

Hi Sally. You certainly have fabulous care in France I have a feiend

[Stevesmum42 in reply to Stevesmum42]

Whoops don't know what happened there. User error ! Should've been a friend who lives in France and she has received incredible care, So you are in great hands. You just totter along with your walker no matter what it looks like , I am about your age 74 ihave got to the age when I do not care, as long as you feel safer with it, I feel for you with temperatures like that, I just would melt into a little puddle. Keep positive, cuddle your dogs and get better soon. Sandy x

[Inca in reply to Stevesmum42]

Sandy ,thank you for your kind words ,I really appreciate them.Care here is great,staff in hospital are kind ,caring,,beds changed every day,every thing immaculate and spotless.In theatre ,before my op,a nurse each side of me held my hands,the one putting on the mask stroked my hair....they are a tactile race ,I know that,but it helps so much to be reassured with a kind touch and gentle words.....My friends and hubby are highly amused with my little trolley,pup loves it ,he tries to hang on to the wheels as I trolley on!!! The heat has been appalling and wrong for this time of the year here.We are S West,often the hottest as a couple of hours from coast.Where is your friend? Best to you Sandy,xxxSally

[tuffetgal in reply to Stevesmum42]

hi steves mum

saw that we are the same age and was curious how many people with mpn live to be in their seventies. i am vegetarian, non smoker or drinker and live in hot and humid floria. was actually diagnosed here and didnt take it too sseriously, now i do. i must stay indoors nearly all summer and have to plan any errands or dr.s appt in the early am. i can become exhausted and disoriented after only a few minutes in the sun. fatigue has now progressed from a three on a scale of one to ten to a five or six. but as an optomist i'm just grateful it isn't worse. take many supplements and drink at least eight to ten glasses of water every day. i actually get pressure headaches at night if i dont drink enough water. cant stress how important water is. any tips from other with e. t would be welcomed

take care glenda

[catwoman2015]

Hi Florence,yes i think its all been said by our friends on here, i too get the hospital say to me , when i complain of awful fatigue .... but all your bloods are fine grr, so i think it the MPD thats root cause? i even try extra vitimins etc ,but i know we have to check if we we can !can anyone put in to recieve a issue of mpd life ? please thanks Holly

[crapaud]

Hello Florence,

Another facette of fatigue is dealing with it when you're 'cured'.

I'm almost 2yrs on from my 'successful' SCT but due to long periods of corticoids my muscles and joints/tendons have suffered - you feel tired and achy but have to exercise to not 'stiffen up'. To make sure I don't skip my walks I try to plan them at a regular time in the day.

Another drawback of being 'cured' is when everyone is telling you "you look so much better...", it is difficult to explain tiredness and to be taken seriously.

Don't get me wrong, I'm better off now after my SCT and have no regrets.

Have a nice day.

Crapaud

[Stevesmum42]

Hi Florence . I agree with all other comments. It is as Judith said, very frustrating when not acknowledged by some medics than we have this 'brick wall' of fatigue that hits us. I certainly do not expect miricals or a magic wand to give me energy, I accept that fatigue is part and parcel of our condition , and of course we deal with it in our own way. i.e. Resting , walking, early nights etc. My EX haematologist said to me "well we all get tired as we get older" So as you gather I decided to find another heamo.

We don't want sympathy , we don't need that as we don't feel sorry for ourselves. Rather we just need an understanding of the symptoms, especially the absolute number one symptom. FATIGUE.... so if the heamo. Is not familiar with our condition it would be wonderful if they checked the MPN site for info....also to maybe hand out the very useful and informative booklets printed on our conditions by ,yet again, our great MPN people. As when many people are first diagnosed they haven't a clue about their conditions, as you can tell by the many first time posters on here.

I would please like to say a huge thank you to the great heamotology departments and kind caring staff, I count myself lucky to have such. It makes a huge difference to how we feel when we go to clinic.

Sorry I have not replied to the original question !!!!

We have good days and tiredy days (as I call them) so listen to your body , if you have a busy heavy day make the next day a restful day to let your body recover, avoid that intense heat we have had recently , it just completely knocked me out. Drink plenty of water to keep hydrated, Exercise if and when you can, try to keep active. Most of all KEEP POSITIVE. With the help of the medical professionals we will live good full lives ( just maybe slower than we did ) there is research going on all the time on new treatments etc. So we are the lucky ones.

Thank you MPN forum and all concerned in putting it together, it means so very much to us all.

(Sorry that last bit sounded as though I had just accepted an Oscar)!!! I have ranted on a bit....with regards Sandy x

[bobbytee]

I find if I don't eat to much before lunch my fatigue isn't to bad but than I have a nice lunch with an hour nap afterwards and I'm ready to take on the world.lol

I have post et mf.also in clinical trial on 1000mgs 1xday momolitinib. For almost 2yrs.

[RobinBrum]

I was recently diagnosed with MF after four years or so on being diagnosed as PV. Sortly after the diagnosis, I hit a 'fatigue wall' late last summer - waves of dizziness, having to lie down several times a day, impossible to do all my projects. This coincided with my hg levels dropping from 15.1 to 10.9 in three months. They have since recovered - a bit - to 11.3, but after repeated promptings from Professor Claire Harrison, my local Haematology people have now accepted that the levels are unusual, and have agreed to an endoscopy and colonoscopy (o joy) to see if there is a bleed somewhere that could be fixed. I understand that this situation is not unprecedented.

However, in the meantime and without any great enthusiasm from my doctors, I started supplementing with iron, vitamin D3 and C last thing at night, in an attempt to get more iron into my system. I think it has helped. This may be what pushed up my hg levels from the all-time low, or at worst, stopped them dropping any further. If nothing else, the dizzy spells have gone, and I have less fatigue. So I see this as a bonus.

Maybe worth discussing with your doctors? Good luck!

[skipperL in reply to RobinBrum]

My haemotologist organised a transfusion for me when my hg hit 8 - it made a great difference, but only lasted six weeks when my hg started to drop again, so I was given another transfusion (two bags of red cells) - I don.t know how many times this can be done, but for a short time I feel less fatigued. I treat this as a bonus - it has enabled me to have a short break in France, as before I was too exhausted to cope with airports etc. Skipper L

[James1731]

Hey everyone,

I've started to look at the way that fatigue is treated with other medical issues.

I was diagnosed with PV last year but since Christmas have been struggling with severve fatigue and tend to not have any good days anymore even following Venusections.

I have been referred as my hamo said my blood levels are good now and he believes something else could also be going on.

I've looked at how Chronic fatigue is treated in M E and it's very interesting.

They explain how the body can adapt to a condition but it needs to be retrained as such.

They mention how you should grade daily tasks in difficulty for example walking the dog is 3,making lunch 2 etc.

During the day you should aim to not go over 10 in total and that over a course of 8 weeks,muscle memory starts to work and these tasks become easier and you will find you can do more.

I have started to try this due to the fact that I don't tend to get any days now when I jump out of bed and even a basic task like popping to the local shop is causing a major problem.

[Janll in reply to James1731]

This sounds like a very positive and possible solution to fatigue. I am only 5 days into firn diagnosis of MF, but I've had the fatigue for a couple of years, gradually getting worse. I don't want to ' just accept' . Thank you for this idea. I must look up ME and the details of task grading.

Jan

[Coco1965]

I was recently diagnosed with PV. I am also struggling with fatigue. I work full time and it takes the energy I have to work. As others have stated, my levels are "normal" right now but the fatigue can't be explained. I have good days and not so good days. I wish I had an answer for everyone that's experiencing the same issue but I don't. Please know that you are being heard and you aren't alone. I'm only 51 years young and can't imagine feeling like this for the rest of my life. The only I can say is I have two choices, either wallow in it or live life. I choose to live life as much as I can. One foot in front of the other, head held high and keep a smile on my face!

[crapaud]

The majority of posts have considered physical fatigue.

Mental/moral fatigue is also important.

Although my personal 'skirmishes' with MPN have only lasted under 4yrs (diagnosed MF+MDS-u beginning 2014, SCT 2015, GvHD 2016/2017) there are moments when these life changing events can be mentally tiring (even now 'cured' I must re-construct a life and a non-programmed professional 'existance'). For me what is important is to have the force of character and internal willingness to get up and 'fight'.

To do this the help and support of loved ones and those around you are very important. Having confidence in the health professionals and understanding the 'pathway ahead' is also extremely important.

Best wishes.

Crapaud

[Hidden]

I personally adjusted my life to ensure I don't sit at a desk all day that makes me more fatigued when I do sit at my home desk to do work online, my massage work actually although physical often wakes me up and relieves my fatigue. Although doing exercise helps even though sometimes it's catch 22 you need energy to start, but finding balance. I still run but not too much, I love yoga (just getting back into a routine after an op) and meditation which I need to do more of. I make sure I get as much sleep as possible, I am not a good napper but I wish I was as I know this can help. Diet is another huge factor for me and personally following a plant based diet since Oct 2015 has helped with my energy levels, I eat a lot of fruit and limit processed foods and of course no animal products especially dairy, dairy is linked to so many issues - I could write a whole page on that alone. I also drink plenty of distilled water about 2 litres a day depending on exercise or heat. I was told about cordyceps to help with fatigue although I took for a while I wasn't seeing a huge difference so stopped but I always give things a go if someone recommends. Self talk too, rather than keep telling myself I am tired or anyone else I am getting into the habit of changing my mindset to focus my thoughts in a more positive way, the mind is a very powerful tool and should never be taken for granted.

[David2hats]

Hi Florance .

I agree with all other comments.

I like to take a flask of hot water to bed to sip through the night and soon as I wake up.

Takes the edge of the head aches or it could be foggy head or silent head ache.

I try not to drink or eat after 9pm, thats more to do with stopping the toilet trips,and helps with a good nights sleep.

regards David