tiredness

hi guys, i was diagnosed with ITP 4 years ago, with my counts ranging from 140,000 to 30,000, unfortunately for me i get symptoms while my counts are still fairly good ie around 70,000, i have the purple spots constantly, i always look like someones been beating me up lol, i suffer nosebleeds and gumbleeds but my main symptom which i am really struggling with at the moment is tiredness. i have never felt tiredness like it, i can sleep 9 to 10 hours at night, but still feel exhausted during the day, i have fallen asleep mid conversation, not good!. sometimes i can be sitting watching tv and wake up maybe an hour later with no recollection of feeling tired or falling asleep. i see my haem tomorrow, my last count was at 50,000, i had more blood taken todayand get my results tomorrow, it frustrates me that the fatigue does not seem to be recognised as a symptom of ITP but i know for me it is a major symptom, i just wanted to know if anyone else suffered the same.

thanks for listening

elaine x

I have at times felt exactly the same, I have slept really well throughout the night and then felt like I hadn't gotten a wink of sleep at all. A lot of us in here have felt extreme fatigue at times and your right many doctors don't believe that fatigue is a symptom of Thrombocytopenia. If your falling asleep mid sentence like that, your probally having a microsleep.


A microsleep is an episode of sleep which may last for a fraction of a second or up to thirty seconds.[1] Often, it is the result of sleep deprivation, mental fatigue, depression, sleep apnea, hypoxia, narcolepsy, or hypersomnia. Microsleeping can occur at any time, typically without significant warning.

Microsleeps (or microsleep episodes) become extremely dangerous when occurring during situations which demand constant alertness, such as driving a motor vehicle or working with heavy machinery. People who experience microsleeps usually remain unaware of them, instead believing themselves to have been awake the whole time or to have temporarily lost focus.

So if your feeling like your not actually having trouble falling asleep or staying asleep, you might want to get it checked out further because as mentioned it can have dire consequences particually if your behind the wheel of a motor vehicle.

I also have trouble with fatigue. But, for me, it seemed to get worse after have 4 treatments with Decadron (spread out over 8 weeks). Since then, my fatigue is a lot worse; though, before I had a relapse in July, I was having trouble with being tired all the time. I also feel, if you push yourself too much (which I did), you seem to go into a relapse sooner--at least I feel this is what happened to me. Additionally, I seem to get colds a lot more or fever and flu systoms. I think this is all tied in to the ITP and it being an immune disorder.

These are just my thoughts.

Dee Dee

Elaine:

You could also ask your doctor to look into other possible causes. Many of us have low Vitamin levels or other levels such as B-12, iron (ferritin), Vitamin D, potassium, magnesium, etc that can cause fatigue. I've found, after pushing for tests, that I have many things that are low and it's a struggle to keep them up. Also, a lot of us also have secondary medical issues such as thyroid problems, Lupus, etc that can cause fatigue. Don't always just assume it's ITP that is the cause.

Hi Elaine,

When it comes to tiredness, I'm sure you're not alone.
My counts are also fairly good but I also feel sleepy during the day.
I'm one person who doesn't take naps at all but find myself taking short naps this year
(I was dx Oct 09). I also get unexplained & easy bruising which usually happen for ITP sufferers with much lower counts.

But Sandi is right the tiredness could be due to some other issues not necessary ITP.
I'm still not sure for mine.

All the best for your latest blood test results. Keep us posted.

I am new to ITP (August 2010), but I absolutely know when my platelets are below +/-45K because of fatigue and brain fog, and both increase exponentially with a drop in platelets.

Neither hemo I have visited have reconciled this with ITP, saying more or less that it's not a recognized symptom, but I suspect if they had ITP themselves they would start recognizing it.

It seems pretty common on the forums, albeit to varying degrees. I am new enough to this that I am not about to give anyone else advice, but I will tell you that personally I am pursuing my ITP aggressively and refuse to live with a low platelet count because of these effects.

I've always viewed the fatigue as like having a cold that just never goes away. Weary from the constant battle going on inside with platelet production/destruction, and systems working overtime. Not to mention the effects of medication/treatment as well.
Makes me tired just thinking about it all !!

What you described sounds like what I'm always going through! It's a combination of both the ITP and the effects of medication. Plus now that I've had all these steriods (Decadron), I end up with a cold once a month. I never use to be this sick before I came down with ITP--and being tired.

hey guys,

thank you for all your replies, visited my haem on tuesday and my counts are good at 79, however she has taken more blood to test for lupus, some auto immune thyroid thing and she also mentioned the vitamin deficiency so hopefully i will have more answers soon. after i got my blood taken and left the hosp i had to go back, my arm felt funny and when i looked at it i had blood running down my arm (lots of it) saturating my top, i went back in and they got me sorted, just another part of living with ITP i suppose lol xx

Our three year old has had ITP for nearly 8 months now. One thing we've found is when his platlettes are quite low he barely moves all day. It wasn't when speaking about it with our haemo that she said the teenagers on the ward ask for a count because they get tired enough to suspect it's low. She said there's no scientific evidence or research to prove it's linked with low counts but it's been proven time after time in the ward. Interesting...

Been there...and am there.....when I was first diagnosed...or well when ITP came back a year ago...I was at 70 thousand....and my doc told me to pace myself....and to take breaks..now I'm down in the 60's thousands..and I could lay in bed all day long..but I am a stay at home mom with two active little girls....I've learned to say no and don't volunteer for everything like I used to.....cleaning house is hard..I can go about 15 minutes to about 30 mintues and then I need to rest....it's frustrating for my husband and really wish he would understand...I also have problems with achyness and achy joints...and that probably is just arthritis....the lack of energy and focus I think is definitely caused by the low plateletts..I know that when I went up to 80 thousand...I was feeling so much better and getting things done....I have little bruising and little bleeding...so it's hard for those when they can't see anything physical that says I've got a problem...I think I am just seen as lazy.

Are your platelets very low right now? I feel the same way and my platelets have gone back up. I was in remission for 4 years and relapsed this last July. I could almost predict that something was going on (platelets were from 260,000 to 300,000). I even told my doctor last April that I felt my platelets were going to drop. But I continued to work really hard without resting. Also did a lot of volunteer work for our clubs. I continued like this and then one day my platelets just crashed all the way to 1000. This time around I am going to try and take better care of myself. Get more rest and not much volunteer work.

But, I agree with you. Because we look okay, people cannot understand our illness. I even try to explain it to them, and they still don't get it. So try and take care of yourself eventhough you have a full plate with the kids and taking care of the house. Just pace yourself.

I was check about a month and a half ago..and was at 64,000...but...I feel a cold coming on and am tired, of course..and have appt. with hemo in a week....so am going into lab this Monday...so we'll see...

My counts are in the 300k range and I'm still tired all the time. Like dolphin, I can only do so much house work before needing to sit down and rest. I thought that now that I am finally off the pred, I would get some energy back. It hasn't been a week yet since I've stopped them, so maybe it will just take some time.

BTW,DeeDee, I love your paint!

I've only taken a few courses of pred and decadron over the years. (I'm an ITP mom, not the ITP patient. I've had them for hives, joint problems, poison ivy, etc.) Every time I stopped the course, even on a taper, I felt zapped for a month afterward. Just absolutely drained. On the other hand, even without steroids, ITP definitely seems to have a connection to fatigue. With my ITP teen, lowered counts, sleep problems, fatigue, moodiness, and pallor go together. I'm also always curious about the serotonin connection. I wonder if low platelets cause these other things, or do they all simply have the same cause. Nonetheless, there's link that shows up in the members of this forum, and doctors who say it's unrelated probably say that because, like us, they have no scientific proof of the precise relationship, and don't know the exact link.
Norma

Thank you, Cindy, for the compliment about my paint. She is beautiful--but I had to sell her this last August. My husband and I knew we had to sell one horse (especially since I had relapsed), and she required the most attention; and, was the hardest to handle out of the three.

As far as being tired, I, too, think it goes with the ITP. During the 4 years I was in remission--I was still tired even then. I don't quite understand it, but I don't feel the same as before I was sick with ITP. Then, I had so, so much energy. Could just go and go. But, I do think if you are feeling tired, it means you should rest--don't push yourself. I emailed Bill (Wam) on this site; he explained a lot to me during our correspondence. He has stayed well for a long time--but he takes very good care of himself. Lots of rest, drinks a lot of water, and watches himself very closely. He even charts his platelets so that he can pin-point a drop. I think he's been well almost 30 years--and he was really sick while in the Marines (or Army?). He goes by TIC-TAC-TOE. His story was published on this site.
Dee Dee

so was at my gen pract. yesterday and he asked how my itp was going....and told him slight bruising and my levels of energy going up and down..and he proceeded to tell me well the itp has nothing to do with your energy level...I was tired and didn't feel like discussing it..but next time...I'm going to say....you might want to take a look at PDSA boards and see that those who have ITP's energy levels go up and down.....he may have a point that it is not the ITP...but it has to be some indirect result of it...how can hundreds of us talk about this of all ages.....I wonder...are there docs that read these boards to see what is going on with us?????

The thing is, there isn't any consistency. Some people don't feel fatigue when counts are down. Also, some people still feel it when their counts are up. Many people feel it when they are on treatments and it's hard to know if it's a result of the platelets or the treatments.

I also believe that many people have low levels of Vitamin D, potassium, or B-12, etc that can cause fatigue and they don't know about it. It took me a very long time to find out that I had low levels of many things. A lot of doctors don't think to test for those things.

Everyone is different which is why it's hard to pin it down. I did feel weak and fatigued when my counts got really low, but in the 30's I didn't even know they were down (I skipped CBC's for a long time).

Thank you Sandie for the input and I personally don't know what to believe with the fatigue/tiredness in relation to ITP. Though I guess if someone is saying they are tired ALL the time regardless of their platelet level then there is something in what they are saying, in that they are tired but it could be more to do with how we look after ourselves, as you suggest Vitamin D etc.

To get a healthy night sleep people have to get up and have breakfast. I myself opt for porridge equivalent (hot oats) or sometimes have baked sweet potato with baked beans. One needs to try and be outside for a percentage of the day whether that be elsewhere indoors or in the garden or walking etc, to be out of ones home for a time each day helps the mental health. Where possible physical exercise tailored to own situation each day... whether it be wiggling your fingers, hands and arms whilst sat down, a gentle stroll to the bus stop or a walk into town, it all helps get a health sleep at night.

I know you will all yell at me saying you all do all of those things where possible.... But truelly, I think these days we forget the basic rules of obtaining a healthy night sleep and it is harder when we don't feel upto it.

Fatigue is another level of tiredness which does have a different feel and if anyone cares to check out information I think the medics refer to it more as Malais. It is very important to work with Malais or it will always be with us and linger on. It may do anyway and it is worth seeking medical help though I do know that is different in the US to UK. Pace oneself. eat something healthy every three hours/balanced diet are the two pieces of advice I have read about concerning Malais. Plenty of water too.

I too at the moment am finding it harder tapering off the steroids and notice a different level of tiredness in the evenings to usual. That is how things are at this moment in my life. It wont last long but it would do if totally ignored it. I am lucky in that it is only sunday mornings I need the alarm on though been getting up 7 am in the week 8 today.
Here for a good night sleep everyone:-}

I agree with Sandy on what she is saying; but, for some of us who can look back not more than five years to when we first came down with ITP (before any treatment began), this might tell us how we were feeling. For me, I was a little tired before I was treated for my first episode of ITP (but, at the time, I was running 3 miles every day six days a week). Today, I look back and think this was a little bit too much for my body. I was also horseback riding at least three days a week. So, I was tired--but nothing like I felt after my treatments began. Since that time I have never felt the same energy level as I had before. There is no way I could run six days a week (though I still run three days a week--or add swiming on one of those days). When the tiredness comes over me, I really need to lay down and take a nap or go to bed early. I eat fairly good--not too much junk food in my diet. It just might be that the treatments have changed our body for good--or something like this.
DeeDee

Hi
Sorry DeeDee, I wasn't disagreeing with Sandi though I realise it could look like that.

In relation to my experience which is all I can go on personally, I was first diagnosed with idiopathic version when I was 25 back in 1994. I was too young to be that much aware of all the different tired levels etc. Especially bearing in mind as a child I had a hole-in-heart and they did the surgery because I had stopped growing when I was 8 so I really wasn't very much aware of myself as a whole as I am nowadays so couldn't compare really

May be there are some differences between Idiopathic and Immune. I undestand the Immune varity is caused by infections. And may be the body is more tired because is has also been fighting infection ontop of the signals the antibodies react to ontop of generally dealing with prednisolone. or what treatment one is on

I have the idiopathic version. My previous consultant tried hard to name it immune but none of the times I had any infection (etc). So he diagnosed it as Idiopathic. This time is they only time I have felt my body tiredness when tapering from prednisolone. Whether that is because I am a bit older, whether it because I was only given prednisolone for in the past I had IVIG too. Or whether this time is the first time having had meningitis and septic shock numerous years ago and it hence the body is weaker I do not know. What I do know is it the first time I have experienced anything once out of hospital. For me usually having a cold is 100 times worse than ITP for how the body feels.... I have gone out leafleting for the local lib dem party in that past and not been any extra tired.

But I wonder if there are more subtle differences between the two versions than we are aware of. I have been diagnosed with ITP for 16 years now and have had about 8 blips. I would rather ITP than a cold and severe illnesses any day the level I experience it at. Am I just lucky?

For me it is a simple dissorder on the whole which timings of it could be better sometimes but that is life. This time is the only time for whatever reason I have felt more... :-}
The spleen being removed (1994) has given me more problems than the platelets.... Though this last year had a minor scare when vision went blurred and A&E found platelets to be 37 and was put on watch for brain bleed with the strict intruction to get to hospital next time it happened. Luckily that has resolved itself to migranes.... though dont get the headaches thankfully.
Sorry if you thought I was disagreeing with Sandi. I was supporting the tiredness thing and we do have to work with it.

You are allowed to disagree with me - it's okay. I only post my own experience and what I have observed over the years. That doesn't make it fact.

As for immune vs idiopathic - they are one and the same. ITP used to be considered "idiopathic" but the term "immune" came to light and those two words were used interchangeably. Recently, the word "immune" has replaced "idiopathic" as the official term.

It doesn't matter if there are anti-platelet antibodies found; the terminology is the same.

Hi Sandi
I just wondered because my overall experiences seem to be so different to how it is written up on here and the UK site, and wondered whether there was more to it than in the name so to speak

In that mine happens 'whenever'in the past approx every other year though had a 5 year break somehow so don't know now? ... they are only down for no more than a week because treatement has worked and certainly in the past the only side effect from prednisolone was hunger.

I didn't get any of the tiredness that people talk about on here.... I got body aches mainly as they were dropping (no doubt) And I will only know when my platelets are below 10 ie mild rash and brusing. I don't know when they are possibly in there 30's judging by last summer. Though usually whenever tested they are high and crash so to speak.

on here people seem be very poorly etc and just wondered if there was more of a difference between the two than medics think?

I was going to ask at my last visit whether I had Idiopathic or is it now called Immune:-) but genuinely forgot. One registra on the ward very nearly told me off for not knowing what I had.... I was originally diagnosed Idiopathic and in the past made a mistake and called it Immune to my concerned dentist:-) who did a quick call and came back telling me I had Idiopathic. The registra on the ward this time as I say almost told me off for the other way round and no one has ever suggested a name change and we know what doctors can be like when we say we been reading. I must try and be more thingy at the next appointment because yes I want to get it right for people.

So yes I am confused about what I should be calling it and confused that how come for me having a cold is more miserable that ITP....?

Rhiannon:

Everyone is affected differently. Some people do not feel fatigue with low counts, but some do. Some people have remissions like you have and some do not. For some (me included), a cold would be more miserable than ITP. If I had counts of 20, the cold would definitely make me feel worse than the ITP would.

It's odd that any of your doctors would make a fuss over which type of ITP you had - no one has ever been diagnosed as one or the other as far as I've ever seen. They have been considered as the same, just depended on which term the doctor preferred. Some people have the antibodies and some do not. Others were never tested because it really doesn't matter.

Rhiannon,
I didn't think you were disagreeing with Sandy; it's just like Sandy said, we are all different in how we feel. My platelets have been in the 300,000 lately and I still get very tired. I'm not sure just why--but like I mentioned, it could be partly from all the treatments I've had (Decadron 4-5 treatments; and IVIG 5 times). I think my harmones have changed along with maybe something else. But, last year before my platelets crashed to 1000 I was getting colds all the time and getting more tired. It's just now that I've had all these treatments again, I do get really fatigued. I do worry if I don't rest when I feel this extreme fatigue, my platelets just might crash again. Dr. Liebman said I need to make it at least one year from my last treatment; then, I have a good chance of having a five-year remission. So, I've got a ways to go. But, at least I understand what my chances are.

I found that I started to feel fatigue when I started tapering off of pred. At 80mg of pred. I had really good energy levels even though I was not sleeping all that well. I am currently at 20 mg of pred. and feel more fatigued even though I am sleeping more..... Who knows? Thats just my two cents.

The taper can cause fatigue. Your adrenal glands are not functioning properly yet.

I'm tapering off prednisone and I feel fatigue sometimes but the worst is almost everyday I got headache especially in the morning,I feel that my vein in my head and nape are gonna explode anytime,is this part of the tapering?

Maybe that's my problem. My adrenal glands still are not completely functional. After taking the large doses of Decadron four days in a row, and then completely stopping it; this must do something to the adrenal glands. It probably takes a long time before you feel completely normal.

It sure can, DeeDee. Steroids are hard on the body.