ITP & fatigue

[Dancingsocks99]

Hi, I was diagnosed with ITP about two years ago but usually veer between 50 and 80. I bruise easily and bleed freely but don't have too many other symptoms. However, I do get horrific fatigue ever couple of months. My haematologist strenuously denies that it has anything to do with my platelets. My doctor decided eventually it's to do with depression (I don't think it is and it happens regardless of how I'm feeling) and finally said it might be a form of chronic fatigue. However, having just found this forum after getting bored of over a week sofa bound, it seems like everyone has trouble with fatigue. If you do, is this a constant thing or does it fluctuate?

[Mumof2Plougasnou]

My 8-year-old has had ITP for 3 years now, never being over 35-more usually under 10. He is always covered in bruises but is not a "bleeder" thankfully. He definitely suffers with real fatigue and lack of concentration, which is more apparent when he is very low. His hematologist totally gets that this is linked to his ITP even though he can't explain why it occurs.

[Hidden]

Having had ITP for nearly 18 years I can swear to you fatigue is a huge factor and a lot of doctors now acknowledge it ( can you guess there arent too many docs that have ITP themselves L ) you just have to ride the fatigue wave and be kind to yourself

[SoporRose in reply to Hidden]

Mumofwill,

You raise an interesting question. I wonder how many doctors DO have ITP or have a close family member affected by it. I'd love to know if they treat the disease and the fatigue differently than other doctors.

[SoporRose]

My fatigue has become constant even though my platelets are, at the moment, holding steady just over 100k. I dread what will happen when they start to fall again. Since the weariness does not abate, I can't take it easy until I feel better. Each of my doctors is sure the fatigue needs to be treated by some other doctor. I've come to feel like an exhausted hot potato. But you're not alone, DancingSocks.

[sailor]

The ITP Support Association funded research into this question. The research results can be found on the ITP web site which is conclusive. Tell your doctors to read it.

[Dancingsocks99 in reply to sailor]

I'll have a look thanks! I might take it to my gp as she has taken on my haematologist a couple of times before when I wasn't getting straight answers or being listened to.

[Nikkinackynoo]

I could have written that myself! My doctor says my fatigue is depression rather than itp. There was a survey of sufferers done and I think pretty much everyone has fatigue. I don't know what you have tried, but I've found cutting refined sugars out of my diet has helped a little.

[ancientadolescent]

I have itp but my count can be as low as 3. So far I am keeping the count higher by ivig. I do have more fatigue than I used to have but this is not excessive if I do not overdo my physical efforts. Keep looking forward, I do. I wish you the very best of good fortune.

[lc12345]

It is proven by research now, I personally always have significant fatigue when I am relapsing and when my platelets stay low. I thinks this logically can be explained by inflammation process causing ITP - i.e. If your body is fighting your own cells it's like fighting a virus, it takes lots of energy, plus there might be other hidden inflammation going on and causing this as a side-effect.

[gtbtcrm]

I have seen my Dad having fatigue with the Platelet count as low as 3000. Couple of things the alternative therapist has suggested and these have help.

One is that we should give him rich nutritious diet and lots of water.

Second avoid every thing cosmetic plastic,petroleum products etc.

Third he has said not to take any pain killer no matter what ever is the cause.

[tennissenior]

If you only have ITP, you may fluctuate some. My readings can go from 70 down to 32. I also have SLE. Faitgue is always there - sometimes worse than others. You learn how to deal with it. No more long trips, no long walks, be active (that fights it!). I play tennis 4 days a week and exercise in a pool just about every day. Living in Florida makes it easier. Don't know if I would survive in the UK. Too cold! Yes, faitgue is normal with ITP. I also take Coumadin, which makes it impossible to stop bleeding. I can bleed from a cut for days and usually they get infected. Part of the "joys" of Lupus! Very low white count - no immunity from anything - especially germs!

[Dancingsocks99]

Thanks so much for the replies. My haematologist just dismisses everything I say but I will try again at my next appointment in a couple of weeks.

Whilst I know there's probably little that can be done about it, it would certainly be easier to explain to my boss when I take a couple of days off to sofa-sink. And I will avoid the lemsip (doesn't help with the joint pain or muscle/bone ache anyway but just makes feeling rubbish marginally bearable).

Kat

[scaryteacher in reply to Dancingsocks99]

One of the Journals of Haematology had a study on ITP and fatigue. It was in May 2012 I think. I took great pleasure in producing it in front of a snooty spotty med student who was telling me there was no correlation. Off she scuttled to her Prof, and then returned with the lake excuse of not everybody gets tired with it. I pointed I did, and she needed to read around more.

[rjsmyth]

Fatigue in adult patients with primary immune thrombocytopenia.

Newton JL1, Reese JA, Watson SI, Vesely SK, Bolton-Maggs PH, George JN, Terrell DR.

Author information

Abstract

BACKGROUND:

 Patients with primary immune thrombocytopenia (ITP) commonly describe symptoms of fatigue. However, hematologists rarely consider fatigue a manifestation of ITP.

OBJECTIVES:

  To document the prevalence of fatigue among patients with ITP and to determine the patient characteristics that are associated with fatigue.   Using a cross-sectional design, we surveyed 1871 members of the UK ITP Support Association [585 (31%) responded], and 93 patients enrolled in the Oklahoma (US) ITP Registry [68 (73%) responded] with questions about their ITP and with validated symptom assessment scales for fatigue, daytime sleepiness, and orthostatic symptoms.

RESULTS:

  The prevalence of fatigue among both UK (39%) and US (22%) patients was significantly greater than expected compared with normal subjects (P<0.0001 and P<0.0001 respectively). In univariate analysis of the combined cohorts, fatigue was associated with a platelet count <100000/μL, treatment with steroids, bleeding symptoms, presence of other medical conditions, daytime sleepiness, and orthostatic symptoms. Fatigue was not associated with age, gender, duration of ITP, or splenectomy status. Multivariate analysis of the combined cohorts was stratified for the presence or absence of bleeding symptoms. Among 107 patients with bleeding symptoms, fatigue was independently associated with a platelet count <100000/μL and female gender. Among 491 patients without bleeding symptoms, fatigue was independently associated with a platelet count <30000/μL, presence of other medical conditions, daytime sleepiness, and orthostatic symptoms.

CONCLUSIONS:

  Fatigue is a common symptom among patients with ITP. These data provide the basis for future studies to define the clinical importance of fatigue in ITP.

[Sram]

I have been diagnosed with ITP for the last 1 year or so and I also have the same symptoms of fatigue on and off. My platelet count is similar to yours. But the fatigue is not constant and varies from month to month. I have been taking papaya leaf juice and it has stabilized my platelets and has reduced fatigue.

[Dancingsocks99 in reply to Sram]

Interesting. I get bouts of fatigue which feels like flu but only happens every couple of months. Was thinking of starting on the aloe Vera and will look into papaya leaf thanks!

[tip-3 in reply to Sram]

HI Sram: can you tell me where to get the papaya leaf juice to lessen the fatigue? please respond thank you ....

[sam_b]

wow, just came across this and can't believe there are others out like me.

I've been suffering from ITP for 25+ years and definitely feel that there is a correlation between my low platelet count and feeling very tired and fatigued. However all the consultants I have seen insist that ITP does not cause tiredness.

My platelet count has fluctuated between 35 and 80 over the past six years and between 20-30 in past year. Managed to work through it for many years but now Im struggling.

I have now moved to a new town and a new consultant from a different NHS trust is also trying to tell me the same. He has agreed to give me Rituximab only if my platelet count falls below 20. I've never taken Prednisolone due to side effects.

[Danison1337]

low platelet counts do cause tiredness there is absolutly no doubt about it. its one of the major side effects of it. please guys remove all artificial sweeteners from your diet, they rly lower the platelets count to a big degree

[22-patience]

I, too, experience fatigue and I've heard a lot of itp'ers say the same thing! Tell your doctor to read a little more about ITP and fatigue. I will be involved with something I love doing and get hit with a wave of fatigue and I just have to go lie down. That's the reality of it! It has nothing to do with depression unless you have been diagnosed (and I am not nor ever have been a depressed personality) with depression. It is just a cop out for doctors to throw it back as depression. Don't believe it! It's true fatigue that comes and goes (mostly at inopportune times) and not depression. Lord know, however, we would have a lot of reasons to be depressed if we allowed ourselves to feel sorry for ourselves. Just keep your chin up and looking for solutions to this lousy curse we have been given. I believe someone will come up with the answer to this dilemma soon! Go take a nap! Ha!