Does anyone that suffers from I.T.P, ... - ITP Support Assoc...
Does anyone that suffers from I.T.P, have problems with fatigue and tiredness? If so do you take anything to combat this?
I also suffer tiredness and lethargy but I'm lucky that I am retired and don't have to get up early for work! It must be awful if you do. I don't take anything to combat tiredness as I am taking enough tablets. Have you asked your doc to recommend anything?
Thanks for your reply Mags, I have Two children under the age of five, so I do get tired, its hard to understand which is the tiredness due to children or due to the illness? I am seeing my consultant soon, so will mention it, shall I let you now the reply Mags? Thanks again for your kind reply.
Hello teddyeddy and mags4743,
Tiredness and fatigue are definitely common factors which ITP sufferers report even though many medical experts and professionals suggest that it has nothing to do with ITP. My specialist was one of those who asserts that fatigue/tiredness has no link to ITP BUT......... In 2009 the ITP Support Associaion funded research into this very subject and the report which followed the study confirms that fatigue is absolutely a common symptom of ITP. The following link will take you to the report...
onlinelibrary.wiley.com/doi...
The only suggestions that I would make are based on common sense and that is to eat a healthy well balanced diet, avoid any processed foods, drink plenty of water, take sensible, regular exercise, avoid too much coffee, tea, fizzy drinks, sugar, saturated fats etc etc... All the things doctors would generally advise. No other magic solution to the problem of fatigue/tirednes I am afraid. But at least it is now recognised as a key symptom and we can point our specialists/medical advisors in the direction of the report above .
More information on tiredness/fatigue and other research projects which have been going on into ITP is available via itpsupport.org.uk, under the heading ITP Research on the bottom right of the Homepage.
Thanks Anthony, really appreciate your reply and for your advice. I do yoga/pilates and Body Balance and I do have a sensible diet, I just get aome days in the week that I feel completely drained and just wondered if there was anything I could do to make it a little better, maybe holistic or herbal. Will follow your link and thankyou again. Hope you are well.
Be very careful with herbal. I ended up at accident and emergency 2 weeks ago. I had allergic reaction to a herbal tablet (only took 2). My face went bright red and swollen and I had to have intravenous anti histamine and steriod. I agree wholeheartedly with Anthony, please check with your G.P.
All the specialists that I have spoken to do not have anything positive to say about herbal or holistic remedies. Obviously everybody is different but what I would always emphasise is that anyone thinking about alternative remedies of any kind be they herbal or holistic MUST seek the advice of their medical specialist first.
Unfortunately in my experience the tiredness got even worse when I was on Prednisolone and also for about 2 weeks after having Rituximab (Rituxan in the USA). Having been in remission since August 2010 following Rituximab treatment I am just grateful for every day now without any medication .
Many thanks again for your advice Anthony. I wish you best wishes in the continuation of your remission. Fantastic news.
Just to respond to the general question about herbal, alternative remedies etc...the following website provides some very useful general information....
Hi teddyeddy
I run my own business and find that I have to take power naps during the day. I work from home and am lucky I can do this. But when I am out all day in meetings I do find that my eyes close and I find it hard to stay awake. It is totally unprofessional to be in a meeting and find you are going to sleep!
I put it down to ITP.
NickyD
Hi Nicky, really feel for nodding off in meetings can't be fun, you have just described totally how I feel and the exhaustion that sweeps over me. Must admit it is nice to know I'm not alone in this, would just be nice if there was something we could do about it. Take care
I have tried to eat sugary biscuits, I take sweets to suck and keep oatcakes in my brief case but all to no avail. My body is screaming to fall asleep so it is a real battle. It is worst in the afternoon especially after lunch. It is more than just feeling a little tired and it happens nearly every day. So, you are not on your own. Nicky
Thankyou Nicky, for your reply, Same really, aftenoons are worse and if I sit down it is a struggle not to fall asleep. You are right, it is more than just tiredness, more like sheer exhaustion, I explain it to people as if its lke a balloon, once someone has deflated it, that's how quick it takes hold of you. Beginning to think, when it happens to try not to fight it, not always that easy though, as I'm sure you know. Jacqueline
I love your analogy of the balloon delfating. I will not do anything that involves any strenous work that I cant stop immediately. Once the energy goes it just runs out of you and you are poleaxed. Well at least we can support each other and we know it is ITP 
Hello Nicky, I also find that my favourite time for falling asleep is also in the afternoons. I must make a note of this amongst other things to ask about when I go to the Convention on May 12th. Infact I will post out a message on all our platforms and ask folk who are not able to attend if they have any questions which they may wish me to ask at the Convention and I can then present them to the experts we have in attendance. The Convention day goes so quickly and it is such a good opportunity to get up to date information from some of the leading experts in ITP. It is however important to have questions ready so I will do a bit of work on that. Thanks for jogging my memory on that.
Hi teddyeddy
I too suffer from tiredness out of the blue usually and definitely not the normal tiredness. Luckily I work on a computer all day so it doesn't affect work too much but can spoil days out - I found that if I did any activities 2 days running then I suffer the next few days so now pace myself at weekends - kids allowing. Dont fight it but rest if you can.
When my count was low (i.e. between 2 and 4) and I was waiting for a bed in hospital to get IVIg, I was exhausted all the time, particularly early afternoon. I've never been one for sleeping during the day but I just had to sleep at those times! Fortunately I was able to work at home and log off for a couple of hours here and there as needed, otherwise I'd have been in the office with my head on the desk! It's now a month later and my count is currently 8 (or thereabouts), on no medication at the moment, and I feel fine and have lots of energy, but suspect that I'll start to flag if my count stays this low much longer. Am trying to get all meds out of my system (just finished a 7 day H pylori eradication antibiotic course) before looking at other treatment options, likely to be either dexamethasone pulses or azathioprine, but am in no rush, as I'm appreciating feeling well at the moment (bruises and petechiae aside) ...
YES, at my lowest point i had 4,000 blood platelets, i was put on Prednisone then i took 3 treatments of Rituxan. my platelets as of last count are 180k. coming off the Prednisone sucked just as much as taking it but in a different way. i was beyond tired, cats looked at me and said damn he sleeps a lot. now i have extreme fatigue, i can't work i can't have fun i sleep and rest and rest and sleep. i talk to my blood doc about it and he pushes it off......
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