I'm new here

[fran57paul]

Hello! This is my first time signing in. I was diagnosed with Essential Thrombocythemia several years ago and since then have been diagnosed with Polycythemia vera. I am okay in the morning, but as the day goes on I find I am extremely fatigued and can barely function. I push through most times but since I don't sleep well (4 hours if lucky) it is very hard. Does anyone else have trouble sleeping and the fatigue? Thank you. Fran

[MarybellM]

Hi Fran

This is a great place to get support! When I posted a similar message to your own I received about 9 replies in a few hours, all fantastic, lovely, practical. My husband has PV and also has trouble sleeping plus 'brick wall' fatigue which hits him most days. It's one of the most debilitating aspects of the illness. So, how to cope? Firstly, knowing it's part of the condition and that lots of other people experience it too, is reassuring. Secondly, try keeping a daily chart for a few weeks to try to find a pattern. That will help you get a kind of 'control' of it and help preempt the bouts of fatigue. Finally, if possible, have a short rest or nap during the day. (Early afternoon works for my husband) finds that 15-20 minutes can revive him while not affecting the night's sleep too much. It's finding the balance. It is really important NOT TO FEEL GUILTY (!!!) about having a rest. My husband took ages to accept that resting is part of the treatment of his illness and not idle time-wasting!

I wish you all the best and I'm sure that you'll get replies from people with more experience too. I think the main aim of all of us is to live as normal a life as possible and minimise the impact of the illness. Best of luck to you. Marybell.

[fran57paul in reply to MarybellM]

Thank you so much. That is a great encouragement.

[Inca]

Hello Fran,yes we all hit the brick wall,difficulty sleeping even tho fatigued....I am 7yrsP V now,I do rest in the afternoons,taken ages to do that,as I have always been active,horses,dogs ,my work( sculptor) the frustration of not being able to do what we have always done is difficult to manage....I have made mistakes ,to my cost ,of trying to push thru the fatigue...it does not work so don't try. Exercise ,yes,walking is good for me,I use hiking sticks,so arms and body get a work out as well.My excellent French Dr.tells me I must do the things I enjoy to help the mind accept the illness,lift the spirits ,it does work.You will get loads of help here,it's a life saver to 'talk ' to people coping with similar problems.Very Best to you ,keep positive and strong.

[fran57paul in reply to Inca]

The support is a great help. It's so hard when people tell you look great and yet you feel like a zombie. Thank you!

[katiewalsh]

Hi Fran, welcome to our group. Fatigue is a huge problem with MPN's. One constant recommendation from experts is to try and get some form of gentle (walking) exercise every day. But not at a pace that will wear you out. Also, many in the forum find that eating better improves their energy. Of course drink lots of fluids, try and pace yourself and if there is something physically difficult, try and do it at the time of day you're least tired. If you look under the topics you'll find lots of ideas. And discuss with your doc these problems. Good Luck and welcome to our group. Katie

[fran57paul in reply to katiewalsh]

Thank you for the nice welcome. It is good to relate to people who understand what is unexplainable to others who don't have it

[tuffetgal in reply to katiewalsh]

hi katie, i also have e.t and am interested in going to the mpn digital support forum in ft. meyers on sept 23. i dont know where you live, although your info says you are only forty two miles from me. i live in st. petersburg, have a nice reliable car and would like to have someone ride along with me. i am single and dont have children in florida, thus my options are limited. any ideas you have would be welcomed. glad to have a fellow mpn er close to me. ny name is glenda .

[katiewalsh in reply to tuffetgal]

Hi Glenda. I'm sorry I can't join you but I'm in Wisconsin until November. I know a really great MPN expert in Tampa if you'd like his name. Enjoy the program.

[cwayman11]

Hi Fran..as the others said you have come to the right place. Fatigue is a big factor and it is about finding your limits/boundaries best way to manage. Hydration and gentle walking already mentioned below are often suggested. Hang in there and use this forum to get as much support as you need. X

[fran57paul in reply to cwayman11]

I will use it and am grateful for it. I think one of my problems may be dehydration.

Thanks!

[Susana7]

Hi Fran, I also have PV and also experience fatigue. But I have found that over time, as my blood counts have normalised, the fatigue has decreased. I am being treated with Pegasys interferon and after 20 months on it, all counts are now in normal range. I am not back to normal in terms of energy levels, still get very tired in the evenings and fall asleep while trying to catch up on TV most nights! But now I am ok during the day, manage to work full time on a demanding job, have teenage kids, etc. I sleep about 5 hours a night which i am sure contributes to the fatigue, But I find it hard to sleep more during the week: I do try to catch up on sleep at the weekends. As others have said, exercise and hydration also help, although I do find it hard to fit in exercise in the daily rush. All the best to you, Susana.

[fran57paul in reply to Susana7]

Thank you Susanna. I too am working, but as a sub in the lunch program. I'm a "lunch lady" and tho the job is pretty demanding I love being around the kids.

[Mazcd Partner MPNVoice]

Hello Fran and welcome to our forum. As you can see from the replies you have had already, fatigue is one of the symptoms of MPNs that we all have in varying degrees, it can hit us at any time and can last for a few hours or a few days. The advice given is great, try and exercise if you can, a gentle walk does make all the difference, or just dance around your sitting room, and rest if you need to, don't feel guilty, you are not being lazy, you are being fatigued. Best wishes, Maz

[fran57paul in reply to Mazcd]

Thank you Maz.

[Connie46]

Hi Fran,

This is my first time signing in too. Like you I was diagnosed several years ago with ET and have always suffered extreme fatigue to the point where I feel I could collapse. I get very little sleep and am very fortunate to get 4 hours. For seven years I have only been taking aspirin but late last year after my usual consultant left I had a very distressing appointment with a new doctor. After being told all those years that my platelet count was nothing to worry about (it has never been above 600 and occasionally falls into the normal range) he started yelling at me and saying that if I didn't go onto cytoreductive treatment I would very probably drop down dead in the near future. Once I had returned home and calmed down I decided that it would be best not to make any quick decisions so with much thought I decided to ask my GP to request a second opinion. To cut a long story short, after a recent bone marrow biopsy my diagnosis is that my condition lies between ET and PV. The second opinion doctor is also recommending cytoreductive treatment on the basis that I have passed the all important age of 60. It has taken me several months to come to the decision to actually have the treatment, mostly because I am extremely intolerant of many medications, antibiotics and strong painkillers etc. It seems that many of us are in this position of just not knowing which way to turn but in the end to move forward some decision has to be made. All I can say is that I will go ahead and see how things go. None of us know how we will respond to this treatment and I truly understand everyone who finds themselves in this position.

Good luck Fran,

Connie x

[fran57paul in reply to Connie46]

I wish you all the best with your treatment.

[Connie46 in reply to fran57paul]

Thank you Fran, I am sorry that you find yourself under so much stress. I wish you the very best for the future.

Regards,

Connie

[fran57paul in reply to Connie46]

Connie,

I wish you all the best as well. Many thanks for your reply. Fran

[katiewalsh in reply to Connie46]

I think you should either report the doctor who yelled at you to his or her supervisor or discuss with the doctor in person or in a letter how completely inappropriate that was. I hope you never have to see that doctor ever again. Good luck with everything. Katie

[tuffetgal in reply to Connie46]

hi connie, i am also intolerant to most drugs, pain killers etc. my platelet count has been over 850 for several years and i am a healthy seventy five year old grandma. i have also been a vegetarian for over thirty years, which keeps my cholesterol count down. i also take many supplements and drink at least eight to ten glasses of water every day. water is very important because it thins your blood. i also take a natural blood vessel dilator called l-arginine. i also take one 81 mlg. aspirin every nite before bed. yes, i do have fatigue but my red blood count is normal so i take plant based iron supplements which gives me more energy during the day. i am retired so, fatigue doesnt bother me as much as someone with a family or a job. i want to share what works for me and would love any feedback to compare notes with others. good luck to you.

[heathermc]

I often take a nap in the afternoon 60 mins can help. Have ET and take aspirin only at present. Working full time is tiring but I try to keep busy.

Exercise and diet are important but time for you is also a must. I swear by yoga .. found it very helpful.

[fran57paul in reply to heathermc]

Thank you Heather. Good advice.

[catwoman2015]

Hi Fran, welcome to the forum, yes i too get more fatigued as the day wears on , it seems to be very common with MPNs even when all blood counts come back good . i was told also last Friday at hospital , to try to keep stress free and enjoy each day one day at a time and dont worry about future .. im a natualy anxious person any way so ... I find i feel bit better when i manage to get good nights sleep im not good at sleeping during the day .. so all the best and keep well Holly

[fran57paul in reply to catwoman2015]

I have been under a lot of stress lately and I guess that doesn't help, does it. We are in the process of selling our house have just moved and then I had an accident and have a separated shoulder and a torn ligament. We have a son with schizophrenia and he has just had an episode that lasted 2-3 weeks.

[katiewalsh]

Boy, talk about stress. Stress reduction techniques are really important. I take medication and I meditate. Dr Reuben Mesa did a study on the benefits of regular yoga. Also, you mention FRAN that you don't drink enough---people here recommend we drink 2-3 liters of fluid daily. It should mostly be caffeine free because caffeinated beverages dehydrate you. Good Luck. Katie