Hi, I’m either pre-fibrotic MF or level 1 MF. I’m on HU & Eliquis & my lab numbers are fine with no anemia. But my fatigue has gotten to the point I’m thinking I should try dietary changes & see if they help. Has anyone significantly reduced their level of fatigue by eating differently? And what diet changes do I need to make? Thanks very much. Katie
PS. I have a serious immune deficiency so I’m not willing to try Jakifi.
Mediterranean type food is good , anti inflammatory very little sugar or cheese .
Hi, thanks. What effect did it have on you? Katie
I have always eaten a fresh home cooked diet. what’s changed is I am more aware of having less cheese , honey etc I use ghee instead of butter.
It’s hard to say what difference it makes for me .
But I certainly am not suffering as much as so many others with same condition . Especially as I’m not young . So far resisting taking meds apart from aspirin . If /when I do I hope all things I do will help towards keeping blood tests
Good , as they are now ( apart from my to high platelets)!!
Please don’t see change of eating as ‘doing without’. So many delicious foods That nourish your body and soul . It just takes time to adjust to addictive quality of ready made stuff and sugar etc .
The occasional junk food is ok IF you don’t find it leads to craving again .
Let me know what sort of things you like and I’ll give you some ideas . Keep things simple and tasty
Hi. Thank you for this. I’m sorry but I just noticed it. I think your idea on viewing as not giving up things is really good but I’ll need to work on it. My biggest problem will be that my fatigue is so great that I can’t cook so my husband does & he likes meat and isn’t like to cook vegetables. We eat a lot of snacks so I’ll need to change that & I have to eat a lot of frozen lunches as anything more difficult is impossible. But at least I’m eating organic meals by Amy’s. And breakfast also has to be easy. Usually it’s either unsweetened cereal or cottage cheese with fresh fruit. If you could tell me where I might find really easy to make meals that would be healthy it would be great. Or even better, if there are any frozen things that are both healthy & good tasting. And is there a sweetener I can use that isn’t as unacceptable as Truvia? And is there a better milk to use other than cows milk? I realize this is a lot to ask but what ever you can tell me would be appreciated. Btw, I’m not allowed to eat nuts. Thanks very much for your kindness!! Katie
Hey Katie , , a number of folk on the Forum have tried or are trying different approaches to their eating habits so I'm hopeful you will get some good advice. Alas not from me as I'm a creature of habit, , usually bad habit.
But I recall a shining star on this Forum called Twinkly who completely changed her diet and was much the better for it. Her general health and results allmround changed for the better. Though her regime might be hard to adapt to without good willpower. She was always chiding me about going to Maccy Ds as I used to wind her up about burgers and chips.
Go to the members bit and type in Twinkly in the search and click on her pic to bring up her numerous posts and I'm sure you will find her take on the benefits of a healthy diet.
Good Luck
Chris x
Good on yer Chris!!!I have never been in a MacDonalds,maybe I should try,I live on a Med diet more or less but I still get the dreaded fatigue.Have as good a Christmas as possible you and family in this unreal time.Here in Fr we are curfew as well & need attestation to go out!!!! e hugs & Festive Wishes to you and yours ,Sally
Ah Sally, , I wasn't a big fan of McDs just an occasional, one. Interestingly when I was in hospital recovering from my GVHD I fancied a cheese burger so my wife went out and got one. However I couldn't eat it due to its high salt content. It was strange but for a time my senses were heightened and I could taste individual food elements. The salt content possibly in the cheese slice was overpowering. Yes it's been a rotten year with more to come I fear. . Up to press we are spending Christmas Day with a few family members.
All the very best for the Season to you and your family Sally
Regards - Chris
Sally, I’m so sorry you have fatigue even on a healthy diet. They’ve also suggested yoga & even possibly meditation. Do you do those? Katie
Hi Katie,sorry you have the brick wall fatigue. I know it is definitely part & parcel of our MP N. I do gentle yoga esp the breathing,I do try meditation but not au fait with that yet....my head is always full of things to do or want to do. My consultant of 11 yrs,G P the same ,both tell me I should rest more ,learn to accept the fatigue will always always be there,learn to stop before it hits.I think that I am 1/2 my age,still work professionally as sculptor,have 2 German Shepherds ,tho just one horse now that we bred in U K 35 yrs ago.I think she may outlive me as I am actually 80 yrs now. Just been horrified to learn Twinkly is no longer with us....really shocked me.
I also know that stress for me causes fatigue,this Covid on top of other things,not being able to see our daughter in U K.....saw my G P this morning re fatigue,there are many people feeling the same at this awful time.....& for me the usual ...try to rest more!!
Sorry for the long diatribe,you keep well as poss,I am PV bordering
MF now on Ruxolitnib as Hydrea stopped working.....Best to you Sally
Thanks, I recall that about wonderful Twinkly. At the time I couldn’t imagine it. Now I’m desperate so I’ll find it, thanks. Happy Christmas to you & your family. Please be careful; I’ve read there’s a new more virulent strain of Covid in the UK. Big hugs to you. Katie
Yes there is a more virulent strain , apparently a few of its original number markers have changed making it easier to spread , , dunno how it makes it easier coz I think it's bad enough as it was. Hopefully these tighter measures will help stem the tide as some of the images of packed shopping centres make grim viewing in a way.
I put in how to find Twinklys posts in case any others wanted to take a look at her words of wisdom. (As you might know she is a very talented dog breeder and has a site @potterspride)
I also wish you and your nearest and dearest all the best for the Festive Season.
Chris !
Hi Katie,Please see my post below regarding Twinkly.
Judy
For some reason your posting came up by itself and I replied. Then when I checked replies to my post I saw yours about Twinkly. Now I’m just feeling a bit foolish!! Thanks.
Hi Chris,
I had a feeling that Twinkly had passed away. I found this as part of her obituary online.
Every three months or so Violet would fly out there at her own expense with the collected funds in order to help improvements to be made to the children’s clinic. During one of her visits she encountered a radiation storm, which later on doctors at Addenbrookes Hospital said led to the MPN blood disorder she developed, which was later to become Myleofibrosis and then eventually became untreatable. Violet lost her 12 year battle against this condition peacefully at home with her dogs and husband on 12th May 2020.
Colourful and sometimes outspoken,Violet’s absence from the dogs shows will surely be noticed by all.
She was indeed an inspiration to many of us.
Judy xx
Aww, , that's a real shame as Violet ka Twinkly lived life to the full in spite of everything. Thanks for letting me know but as I've not heard from her in a while via email I did wonder if she was ok though no mention of her passing on her site as far as I know.
Thanks for letting me / us know Judy , it's not nice having to impart sad news. I'm sure she will leave a large void in many lives and in the doggy breeding and show community.
Chris xx
Yes Chris, she certainly was a character. I met her and her husband Bob at one of the London days about 7 years ago when she first joined the site. Tattoos and beautiful painted nails I remember 😆. She definitely lived life to the full.
Hope you all have a good Xmas Chris. Much love to you and yours. Xx
Was so shocked Judy to read your post.I knew she had not posted in a long while but people often don't,we all seem to have been on the site for ages sometimes I don't look for while as life takes over.I knew of Lesley as I knew her from forums & we P M ed each other,both being Northeners & having similar care for P V ,she in U K me in France.Losing her affected me for a long time. Twinkly was a star ,loved her pics of beautiful dogs.Dare I wish you 'Joyeuse Noel',don't feel like it here.
Best to you !Sally
Yes Sally, I wasn’t sure until I checked, I had e mailed her with no reply, and like you say some of us have been on the site for ages and don’t always post, I know I don’t. I too was so shocked about Lesley, I had spent the day with her at the London day in November and she was so lovely. We do seem to be losing more members now which is only to be expected I suppose. There were only about 400 members when I joined 8ish years ago.
Christmas is certainly going to be different this year. Stay safe Sally.
Judy xx
So true Judy,it's 11 yrs since my daughter found this site for me.Now I don't recognise the names that come up!Different Nationalities too.I hope it means our 'unknown'disease is now recognised by GPs & people are seen by experts. Also the new drugs ...two years ago I was very poorly,thank goodness my consultant here put me onto Jakafi or I would have shrugged my mortal coil.Lesley kept my spirits up thru that time as we both seemed to be progressing with our P V to MF.....Rux /Jakafi has given me some time again.We have very strict 'confinement' here,lucky to live in quiet countryside & have our own land to be in good fresh air. Only time we go out is hospital or Drs.Need attestation papers & curfew after 8pm until 6am!!!So a very strange Xmas. Have as Merry a Xmas as you can ! Sally xx
Hi judy, i've just come across this now, always sad to hear of a fellow Mpn'er passing. Last time I heard anything I think it was around that time Maz mentioned that Twinkly had had a stroke and was unable to post. Sad. I hope you had a nice christmas and maybe hopefully got to spend the day in a 'social bubble' with at least some of your family,especially with those dear Grandchildren this dreadful virus is limiting our access too. Enjoy the rest of Christmas and lets all hope for a Covid free Christmas 2021.
Very sad to hear that Judy. I remember Twinkly as a very upbeat person, her posts were positive and uplifting.
You can’t help but wonder when certain people stop posting.
I know Mary, I don’t post as much as I used to and some people seem to disappear for a while and then come back. I do wonder sometimes and it’s not that I’m being nosy but I think of lots of people on this forum as friends, albeit virtually, and am concerned if they are ok.
Very best wishes to you for Christmas. xx
Hi Judy.
I echo exactly your words. Good to see your post. When things get a little stressful and worrisome I do my snail impersonation and curl up in my shell.
Like yourself,having been on the forum for several years, I too, think of you all as friends, sharing the highs and lows .
As good friends are,someone is always there to talk to.
So to all of you. Thank you so much for being there.
Wishing you all a peaceful, safe Christmas time and of course a New Year full of hope for everyone.
Much love Sandy🌈xx
That’s lovely Sandy. Have a lovely Christmas time. Hopefully next year we will get to meet up! Fingers crossed. xx
Hi Judy . I will indeed keep my fingers crossed... I hope you can manage to spend Christmas with your family. Whatever you are doing have a happy time. Sandy x
My energy level and stamina has improved dramatically in the last 4 months by following the Mediterranean diet which was broadly along the lines of a nutrition expert on one of the MPN sites in the USA. I eat more vegetables than fruit as I find the sugar in fruit puts weight on, so in an average day I have 5-8 portions of vegetables. I now walk 8km or more daily without having to sleep afterwards as previously was the case.
Wow, that’s amazing & great. Can you tell me what variations you made to the Mediterranean diet you made, other than more veggies & less fruit? Is there a cookbook you used? I’d appreciate as much info as you can take the time to give me so I do it right-if I’m going to deprive myself I want it to work!! Thanks so much for whatever you can share. Katie PS, if it’s not a convenient time with Christmas coming soon I could contact you afterwards.
I really reduced carbs, I no longer eat bread and I focus on lean meat, fish with tonnes of veg, salads, organic if I can and a wide variety. I do have no sugar muesli in the am, in winter veg soup instead of salad for lunch. I continue to have wine only at weekends and only with meals, I drink tea and a small amount of coffee once a day if I feel sluggish. That’s broadly it. I take multivitamins, vitamin D in winter and am trying a little ginger and curcumin powder in a drink for anti inflammatory benefits as I have a hip inflammation. I cannot find the MPN presentation link by the nutritionist but here is a similar one. pvreporter.com/nutrition-di... hope this helps, it takes a few months, I started in our March lockdown gradually especially as socialising became unlikely, and then went wholeheartedly into it from August and now the results have really paid off in stamina and energy. It’s not a miracle but combined with 8 hours sleep a night it really helps. At this time of year I am allowing things outside that but as I don’t eat them normally I don’t feel I need much so probably that helps me eating too many of the less good things, without feeling deprived. So maybe don’t start over Christmas, work up to it gradually in the new year. It’s been the main good thing about the year as not socialising meant I could stick to the new regime and get used to it well in advance of Christmas. Hope you have a happy healthy new year
Thank you so much for taking the time to write all of this. I think many on this site will appreciate it. I drink a lot of tea & decaf coffee with cow’s milk. Is that milk allowed or should I substitute something? Is there a kind of sweetener allowed. I’ve been using sugar & suspect that’s not ok. Also is diet caffeine free soda allowed? Thanks also for recommending that it be a slow change. You really have accomplished so much & turned this horrid isolation into something very positive for yourself. And it probably wasn’t easy. So congratulations! Take care & be careful. Happy Holidays. Katie
Hi Katie, I drink a lot of tea too with skimmed cow’s milk, and it is one of my few joys. I haven’t given it up, but due to advice on its ability to prevent absorption of nutrients and iron etc. I avoid drinking it an hour before and an hour after eating. This was advice from a nutritionist on a leukaemia care talk as I was concerned about my Haemoglobin levels which had started falling. It appears to work, so I haven’t given up tea. I also have one cup of normal coffee a day when I feel I am flagging but not around my meds as it doesn’t go well with anagrelide which I am on. I don’t know about the diet soda, I think it’s a personal choice, and in any case best to phase changes in so you can keep to them. I drink sparkling water and find that helps hydrate me and also satisfies me if I feel hungry between meals. I now almost never snack as a a result. Some people say it’s not great for you but at the end of the day we all make trade- offs. I have lost weight too without noticing the effort and feel much better. Best of luck and take care.
I never knew that about its affect on absorbing nutrients and I usually have decaf with milk along with my breakfast. Do you recall if it’s the tea or milk which interferes? I drink some types of tea without milk. You know a lot & I really appreciate your sharing, thank you. Be well. Katie.
I was told it’s the tea that does this, my haemoglobin has stabilised since not drinking tea an hour before and after meals. I still drink lots of tea as it is good in other ways.
Across all diets the things to eliminate are the same - gluten, dairy, sugar, soy. Do that 6 weeks. Then it’s seeing if your body does better on paleo-like (you can read up online - grass fed meat based) or vegan. It gets easy, it’s just the first part while removing foods in favor of others that feels hard. It’s well worth it - I don’t know anyone who did this fully and didn’t see benefit. It’s just most remove a food or two or do it a few weeks, then “cheat.” Generally your body needs to heal, specifically your leaky gut (again loads of info online.) That takes time. I’m in full remission with meds - but by my age my aunt had passed and my more was in pain all the time. Diet is key and good luck! No one size fits all no matter what anyone says. But you can figure it out. If you need a strong guide, the Whole 30 has a great website, books, etc. Now I can eat across all food groups and be ok. But I remain 75% salad, heavy veggies, lean proteins and Mediterranean-like. I just had to heal my gut. Ps. In a flare or when I feel increased inflammation I learned that a green juice diet for 1-3 days would knock it all back.
Hi HanaleiBa,I see on your bio that you have RA. I also have RA and PV, do you have an MPN? I haven’t come across anyone on the forum with both. You say you are in full remission with meds, do you still take MTX for RA and are you on any meds for MPN?
Best wishes
Judy
Thank you very much for all of this info; a great endorsement. I appreciate knowing the words to look for. I will look up these things. Happy it’s eased your pain and you’re living a better quality life! Happy Holidays. Katie
It’s so difficult for you if you can’t cook .
Lots of organic chicken . ( simple fried in lots of coconut oil is good)
Tinned sardines .
If you can get bean sprouts . Have you a whole food shop locally?
Supermarkets sell tofu frankfurters Taifun brand . Wrap in nori seaweed . Put mustard on .
Choc coated rice cakes are nice
Tahini and miso good made into sauce
Over brown rice
Mix tahini and small amount of miso with water . Maybe lemon added . Garlic ?
Bought organic hummus
DONT SNACK . You need time to digest food .
Do I like porridge ? U can add tahini , miso bean sprouts . I love it .
Or for a change tahini and honey or maple syrup . Or just without tahini.
Sweet potatoes are satisfying mashed or baked. .
Just a few inspirations ( I hope ) !!
Hi, Katie, I can really relate to you. I have post Et MF intermediate one,. My doctor says my numbers are stable but yet my fatigue seems to be getting worse. My hematologist is blaming it on my fibromyalgia, but I’m not so sure. I hope you find an answer soon.
Yes my numbers also are stable. But I’m fortunate I don’t have the horrid leg pains or itching. Very sorry you have fibromyalgia. That must be awful. There’s a possibility that I’ve developed a mild version of chronic fatigue syndrome but I’m hoping not. I’m getting my increased shortness of breath checked out by another cardiologist at a teaching center (as my local cardiologist suggested) & if there’s no answer there then I’ll see a neurologist. Hope your holidays have some special warmth. Katie
Hi Katie, me again. Here’s something else that might help.patientpower.info/living-we...
This is a great article! Thank you. And I love her style. You’re great to send me these. I think others will also find it helpful!
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