Wiki

According to Wiki, ITP does not cause one to be tired or exhibit symptoms of chronic fatigue. That is sure an "Idiopathic" part of the definition. Being tired/fatigued most certianly one of the symptoms.

OMG too funny, I guess whoever entered that into Wiki must not have ITP... HA!

Dean, consider the source.

I don't know if chronic fatigue is a symptom of ITP or that ITPers exhibit symptoms of chronic fatigue -

[ www.mayoclinic.com/health/chronic-fatigue-syndrome/DS00395/DSECTION=symptoms - the 8 official symptoms of chronic fatigue, including fatigue:
Fatigue
Loss of memory or concentration
Sore throat
Painful and mildly enlarged lymph nodes in your neck or armpits
Unexplained muscle pain
Pain that moves from one joint to another without swelling or redness
Headache of a new type, pattern or severity
Unrefreshing sleep
Extreme exhaustion lasting more than 24 hours after physical or mental exercise
and there are additional symptoms mentioned at the Mayo Clinic site]

- fatigue is a symptom for some not all [it has never made me tired or fatigued, life does but it doesn't].

Dean,
Wiki is not really known for it's accuracy, ASH has the following

asheducationbook.hematologylibrary.org/cgi/content/full/2010/1/377

I find the meds cause more fatigue than the ITP, but we are all different.

Dean:

Wiki is wacky - I never look at it. It's the most unreliable source there is.

The thing is, not everyone feels fatigue with ITP. It has even differed with me...at times I was ready to drop over and at times I didn't even know counts were down. I know that some of the treatments had an impact on energy levels for sure, as well as my emotional ability to handle it at times. I also think that a lot of people have other reasons that they are unaware of..low B-12, potassium etc.

Ha - I remember one time my counts were down and I told my hemo how tired I felt. He suggested I take B-6 and said it should help. Well, within a few days, I was getting up before the alarm and zipping easily through my days. Was it the B-6 or was it power of suggestion? I don't know, but it worked at the time. I take it now from time to time and it doesn't do anything - lost it's fluxy.

Yeah, Wiki is a wacky unreliable source. Just thought I would see what Wiki had to say about ITP. I know we are all different with our ITP symptoms, I should have stated that for some of us tiredness/fatigue is a symptom of ITP. I have started taking B-12 for a little boost. Once I shake this Bronchitis crap I am sure energy will return.
I am sure working nights for 16yrs has something to do with lack of energy at times.
Pent up anger also wears a person out. I have gotton better at not letting things irritate me.

There. Now Wiki says that ITP may cause a person to feel fatigued. Anything else we want it to say?

en.wikipedia.org/wiki/Idiopathic_thrombocytopenic_purpura

Unfortunately the wiki police have changed it back already. That's what annoys me most about wiki. Someone takes to a page and guards it furiously and won't allow anyone else to make changes.

Fatigue in ITP slideshow of a talk
www.itpsupport.org.uk/conventionppt/showjulianewton2011.htm

Wow the wiki police are fast. So fatigue is a ligitimate symptom.

I have noticed a lot of doctors don't even seem to believe fatigue is a sympton either. I was really exhausted and sleeping all the time and still felt tired and my GP and even my Hemo said low counts wouldn't cause you to be so tired, but i do know that my being fatigued and exhausted does always seem to coincide with my low counts.

Okay, let the battle begin. I changed it back.

Pent up anger also wears a person out

hmmmm....never gave that one to much thought. Do you have a "reliable" source for that!?

Sandi wrote: Okay, let the battle begin. I changed it back.

What is interesting though is the cites for that statement are those saying it doesn't cause fatigue.

"ITP may cause one to be tired or exhibit symptoms of chronic fatigue.[13][14]"
Both 13 & 14 say: "A low number of platelets doesn't cause pain, fatigue (tiredness), problems concentrating, or any other symptoms"

Maybe the Wiki Gate Keeper in charge of guarding the ITP page wouldn't change it if it didn't remove what was cited by #13 nih.gov and #14 clevelandclinic - leave that alone but add in your own sentence stating tiredness and fatigue may be a symptom for some and your own cites.

And can ITP cause symptoms of chronic fatigue? - fatigue and chronic fatigue are different in my book, chronic fatigue symptoms [from the Mayo Clinic] being:
Fatigue
Loss of memory or concentration
Sore throat
Painful and mildly enlarged lymph nodes in your neck or armpits
Unexplained muscle pain
Pain that moves from one joint to another without swelling or redness
Headache of a new type, pattern or severity
Unrefreshing sleep
Extreme exhaustion lasting more than 24 hours after physical or mental exercise
and there are additional symptoms mentioned at the site]

Gretchen - I don't have a reliable source for that either, but it is true. Any emotional toll can add to fatigue and stress.

Melinda - I might give that a shot. It was tough with all of the codes in there....I'm just not that good with things like that.

I really love our hematologists and all the doctors who've helped my family so much over the years. That said, the vast majority of docs who treat ITP have never had it. They can say all they want, on wiki or wherever, that fatigue is not a symptom of ITP, but it obviously goes hand-in-hand with ITP for some, including my daughter. If everything about ITP was known, there'd be a cure by now. Obviously, the scientists don't yet know it all.
Norma

Doctors tend to keep away from Wiki. The guy who has decided that he knows best about the ITP page is a guy who has chronic fatigue syndrome. He obviously thinks that he has a monopoly on fatigue.

This is interesting..

"Among 107 patients with bleeding symptoms, fatigue was independently associated with a platelet count <100 000/μL and female gender. Among 491 patients without bleeding symptoms, fatigue was independently associated with a platelet count <30 000/μL, presence of other medical conditions, daytime sleepiness, and orthostatic symptoms."

onlinelibrary.wiley.com/doi/10.1111/j.1600-0609.2011.01587.x/abstract

Anger and hostility activate stress hormones and can cause harm if activated repeatedly. High levels of cortisol and adrenaline creates a cardiotoxic effect. This causes wear and tear on the heart/cardiovascular system. Frequent anger may also speed up the process of artheosclerosis in which fatty plaque builds up in the arteries. People who are angry alot tend to have other chronic negative emotions. Heart pumps faster, blood pressure rises, blood vessels constrict and higher levels of glucose. So basically frequent "ANGER" is not good for one over all health.

server wrote:

Pent up anger also wears a person out

hmmmm....never gave that one to much thought. Do you have a "reliable" source for that!?

Last time I looked Wiki had been changed for the better. But reading the discussion page we see some guy called Bigdumbdinosaur with whom I've had some message exchange, who seems to think that the study mentioned won't be any good because it was run by a woman! And also that most of the respondents in the study were women and women always say they're tired so the study is not valid. In the UK we would call him an arse!

The word 'tired' is overused. Every single person I know complains of being tired, men included. I've stopped saying it, because it means nothing to anyone. What's the point? You can't measure it unless you get very descriptive with words and who wants to hear that? Anytime I've said I was tired to anyone, they say "me too". Okay.

"Bigdumbdinosaur" was once an active poster here. I think it was on the old forum. Sandi, do you remember? I do think he's an ITPer.
Norma

Sandi.. I think there's a world of difference between tiredenss and fatigue and of course I should have been talking about the latter. I've confused myself because the dinosaur guy thinks there's no difference but I do.

Norma.. you are right. I went to the old forum and looked him up. A 62 year old who has had ITP since 2007 and ran out of money so no longer getting treated.. at that time.

I should have said that the dinosaur guy wasn't the one originally who was removing stuff on wiki.. that was a guy called RobinHood. The dinosaur guy has minded that page for years. I had a run in with him some years ago. He told me I was wrong but after I went away he changed the page to what I'd said.. LOL.

You seem to have formed your opinions from unscientifically supported information gleaned from, among other places, the Platelet Disorder Support Association (PDSA) website. I do not consider PDSA to be a neutral source on ITP. While much of what they publish has previously been documented by the medical community in many other places, some of what they present as "fact" is not, or is distortion of fact. This is an organization with a slanted point of view whose membership seems to largely be women with some degree of hypochondria.

Quoted from Wiki, why would you even bother to go there. I am a women but I don't think I am a hypochondiac.

Whoa!

Yes, Norma, I do remember him.

Ann - I agree 100%. What I was saying is that I can't ever say I'm tired, because everyone I know says "me too". Never mind the fact that I take about 5 strong meds that cause drowsiness and fatigue. Never mind the Lupus, which causes brain fog and fatigue. Never mind that I struggle with low Vitamin levels that contribute to fatigue. Never mind that I don't sleep half the time and have a stressful job. I know other people have fatigue factors, but I sure have a stack that doesn't seem to matter. Everyone has the same expectations of me. I know the difference between tired and fatigued. I'm exhausted just getting my morning shower. I'm just saying that most people don't realize how lucky they really are. If you can manage a social life, or exercise, or dinners out, you're not that tired. I'm just tired of hearing it. Rant!

Milly, where did that come from?

Yeah I agree Sandy, most everyday people have no idea what it is like to have both the illness and the added factor of meds that cause fatigue, I dont even bother to try to explain anymore, just keep going and then collapse when I can.

The quote is from Wiki under ITP discussion, I had to read it twice I thought I read it wrong the first time. I did copy and paste so this straight from the discussion page.

I haven't seen that. I don't have the energy to fight it this week, but may have to take that on soon.

Fatigued is due to physical and/or mental exhaustion. Fatigue can also be triggered by stress , medcation, overwork or mental and physical illness or disease. Everyone experiences fatigue occasionally. It is the bodys way of saying, hey, I need some rest/sleep. When fatigue becomes persistant feeling of tiredness or exhaustion that goes beyond sleepiness, it is a sign that something more serious is going on. Causes and symptoms of fatigue are quite numerous. The main definition of tired/tiredness refered to Fatigue. Tired; exhausted of strength or energy; Fatigued. Also means; bored, impatient, lost interest in, lost patience with, overused.
Tiredness; temporary loss of strength and energy resulting from hard physical or mental work, Fatigue.
So basically tired/tiredness is a form of Fatigue.
Sandi, you definatly have the deck against you. Some people just do not understand what those of us with health issues along with medications go through on a daily basis.

milly wrote: You seem to have formed your opinions from unscientifically supported information gleaned from, among other places, the Platelet Disorder Support Association (PDSA) website. I do not consider PDSA to be a neutral source on ITP. While much of what they publish has previously been documented by the medical community in many other places, some of what they present as "fact" is not, or is distortion of fact. This is an organization with a slanted point of view whose membership seems to largely be women with some degree of hypochondria.

Quoted from Wiki, why would you even bother to go there. I am a women but I don't think I am a hypochondiac.

He's talking to me with that quote and I have never seen that leaflet so he's wrong. Yo have to hit the "discussion" tab at the top of the page to see it all. I haven't looked to see if there's anything new there because I don't want to see it.

The study on fatigue is actually quite interesting because one of the measures says that the people with ITP actually underplay their symptoms compared with the controls. So we actually tend to think that our fatigue symptoms are more normal than they are, or we get so used to them that we under report it.

Fatigue and sleepiness are different measures. Some have one, some have both and some have neither. Fatigue to me means my legs feeling so heavy that I can't climb the stairs without hanging on to the banister. Or feeling that I don't have the energy to get out of the chair to go and get something to eat. Or starting to vacuum clean the carpet and having to sit down after the first two minutes because I just can't do it. That's not normal but it's only now after speaking to the author of that report that I accept it. Acknowledging I have fatigue doesn't make me a hypochondriac though, it's actually been quite helpful in a psychological kind of way.

Sandi it wasn't my intention to give you another battle to fight ( I think you have enough on your hands without worrying about Wiki) it was just to show how Wiki can pretty much state anything when it is just someone opinion not fact.

Ann, I also think that fatigue is just what you described, that feeling that your legs would not carry you another step. Wiki to me is no more than entertainment, I very rarely go there I prefer to look at more credible articles if I am researching anything.

As far as the PDSA I will forever be grateful for all the support that I have received here, I live in a smallish country town and I think maybe I am the only ITPer here so I have no one really to discuss anything with. I looked on these boards for months before I posted anything mainly because I was afraid that I would ask a stupid question or maybe it was because I was in a bit of denial and probably still am a bit (this is not something that happens to me, this happens to other people). I have gained a lot of knowledge here and am now more confident when speaking to anybody in the medical profession. One day I will post my story as I would value opinions on it, as to if this is going to be a long term thing or a once only.

I cannot contribute as much as others regarding treatment options as I only have experience with IVIG and the dreaded pred but I can offer my support to anyone and help when I can.

Anyway that was my very long winded way of saying Wiki is a load of rubbish and thankyou to the PDSA and everyone that has helped me on these boards over the last 18 months.

Milly - you didn't do it. Some things just fire me up and that was one of them. No problem!

Ann - you got that right. Fatigue is one reason I can't fight the Wiki thing this week. Just typing is an extreme effort. TGIF!

Ann, really now, give the guy some credit... he's a pompous arse! :lol: