fatigue - rest or keep going?

Dougie had a haematologist appointment today. His count was a miraculous 34 so we are dead pleased with that - although i knew it had gone up at the end of last week when all the petechiae suddenly disappeared.

He asked the dr about the ridiculous tiredness he has been suffering for the last 5-6 weeks - the fact that he raised the subject at all makes me know it must be bad because he doesnt like grumbling to the dr about anything. The doctor said that it was a recognised symptom, but he didnt have a solution, only sympathy and advice that he thought it was probably best to battle on through it rather than giving in to it. Thats what Dougie has been doing anyway, but i am just wondering what other people who experience it think - for example, does a nap make things better or worse?

I phoned his form teacher afterwards and she is going to have a chat with his teachers to see whether they think its affecting his schoolwork, and if there is anything they can do to make things easier - not sure there is, but you never know

Thanks in advance, Ali

Ali:

I don't really know the best answer to that. My thought is that if he has commitments, then try to get through them and if not, time for a nap. If it is a real problem, try to limit commitments like sports and after school activities if need be.

Since ITP can be chronic, he may have to deal with it as an adult. The real world does not allow naps during work, so you have to be used to forging ahead. I struggled with it also with a full time job and three kids....it was hard to juggle it with that fatigue but you do what you have to do. Maybe a short nap before homework would help.

Thanks Sandi. I really hope that he doesnt have to deal with it long term - I cant imagine how you dealt with that AND the normal tiredness that goes with three kids and a job! He's complained about tiredness on and off for the last couple of years, but its only in the last month or so that its been very noticeable that he is really struggling with it. His count was obviously down, so i thought it was that, but its been up for a few days now, and he says its been worse this week - 34 is a really fantastic count for him too.

I think it's great for a doctor who doesn't have fatigue to tell someone to battle through it. I've been there and been walking to the bus station in the mornings literally in tears because I can barely walk never mind the thought of doing the job all day. Eventually it almost broke me and I left.

So I'd say it has to be up to the person themselves what they can and can't do. Having naps doesn't help me as I don't have sleepy fatigue but sitting down for half an hour does. My opinion is that if Dougie needs a nap then he needs a nap. He needs to plan his work and play around what he can do and not expect too much of himself.

Ann, that was thought exactly when he said it! Just out of interest, when are you at your most tired? Dougie says his worst times are 11 till 2 in the day and then again from about 7 in the evening.

It is a tough decision. I remember days when even laying down seemed to be an effort. Ann is right, the fatigue isn't a sleepy kind, it's an overall whole body weakness.

Since this seems to be a new thing for Doug, maybe he has something else going on such as a low Vitamin level? Might be worth checking.

My most tired depends on the structure of my day. I'm working full-time again but in a far less responsible job than before so it's easy to get through the shift but it's really when I get home I collapse and the frustration sets in that all I can do is work and sleep. At home I also get sudden fatigue when doing something physical like hoovering or cleaning when I'll suddenly feel really hot and exhausted and just have to sit down.

I also suffer bouts of fatigue.

I am a house husband looking after 6yr girl and 2yr old boy and there are days when it gets very tough.

I have talked to my Hemo about this a few times many years when I was first diagnosed and he did say that it this is a common side effect with ITP as your body is getting less serotonin.

Over years the fatigue has effected me less simply because I refuse to let it. I do believe that state of mind and diet can play an important part in this.

I massively improved my diet and and go for walks as often I can and it has helped me. I also found that talking to a therapist also help.

Hmmmm, I am working on improving his diet but its difficult with a pizza loving 15 year old boy! His approach is to keep doing everything but then to collapse in a heap! I am thinking that balance might be key here!

Sandi, I wondered about other causes - think we might have a chat with the gp

Glad to hear Doug's count is 34- great. Another reason he could be tired is that he's 15! Teenagers get tired from growing and all those changes. My son had no illnesses and slept about 11 hours if he could. Couldn't sleep enough during the school week, so caught up on the weekends. Sometimes he would get worn out and have to take a day off school just to catch up. That was okay with me because it seemed like giving him an occasional day off prevented him from getting sick.
good luck!

True - Posey is right about that! I'd forgotten. My son also slept a lot as a teen. The best story I have is the time he was scheduled to work at a retail store at 6 am on Black Friday, the busiest shopping day of the year. I woke up that morning and thought he was gone. Never thought to look in his room. He came stumbling out of his room at 1 pm asking why we never woke him up. Seven hours late for work! We tease him about that one now.

Seriously, he should be checked for other causes. People tend to assume that ITP is the reason for everything and sometimes it's something else that can be simple to fix.

For the time being, let him do what he is up to doing. Many people, like Ghost, report that staying active helps in the long run. I think you're right that balance is the key; try to shoot for that.

I have the mental fog, fatigue and muscle weakness, but not all the time. I get up fairly early, usually between 4am and 6am. I have about 6 productive hours before I get too tired. Sometimes I plod through, one foot in front of the other. I know better than to cook late in the day because I am sure to make mistakes, sometimes when I get up to cook first thing in the AM I make a lot of mistakes.

And if I am active and engaged in a project I might not notice how slowed down I have become. I also deal with back and neck pain which limits my indoor activities, but not so much the outdoor activities which I consider to be my exercize. I have a biggish vegetable garden and I burn wood for heat which involves lots of moving, splitting and stacking green wet firewood.

However, if I am exhausted then I rest. I worked 2 or 3 days a week at a residential treatment center for schizophrenics for 3 years and was pretty much unable to do anything at home except for rest. I lived on p-nut butter & cheese sandwiches. I would be in bed most of the first three days after working and finally by day 4 I was able to force myself to get up, dressed and to the grocery store, but not much more than that. None of this was "in my mind." I was lucky that one of my superiors had a brother with leukemia and the co-worker had gone through all the steps to donate bone marrow to his brother only to have the bro give up and die. At any rate, that is the closest I have come to anyone understanding what challenges ITP brings.

I often run low grade fevers and that causes me to sweat a lot and while working I would get very dehydrated. Could not drink enough water while at work to rehydrate. This probably contributed greatly to my discomfort and fatigue. I have had a difficult time getting health care providers to understand my needs which seem to be abx twice a year or I continue with the fevers until I get sick enough for them to notice.

Kris:

None of those symptoms seem to be related to ITP, especially since you've been in remission for so long. They don't seem to be related to being asplenic either. Maybe you should discuss it with your GP and look into other causes. Things like thyroid issues and vitamin deficiencies can cause those kinds of symptoms. It would be a shame to keep having symptoms like that when you might be able to treat them and feel better. There are also connective tissue disorders that cause symptoms like that. ITP does not cause fevers, sweating, etc. and most people with ITP do feel better when counts are up and do not consider ITP to be a problem any longer.

The low grade wellness may be part of having no spleen. I do not fight infections well. I am not vitamin deficient, I don't think, take a handful every day. Of course,I have had thyroid levels checked.

I have one year to go before I get Medicare. Will have things checked out to the extent that I can afford to then. Much of my problem is with my neck and spine, that is not connected with ITP, but not willing to say that other problems are not. Have many people like me been studied? I would doubt that anyone has been followed who has been in remission for 40 years because why seek medical attention when there are no problems.

But all I know is from my personal experience and the conclusions, correct or not, that I have arrived at myself.