ITP chronic fatigue syndrome - ITP Support Assoc...

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ITP chronic fatigue syndrome

Topography52_- profile image
5 Replies

Just been diagnosed with chronic fatigue syndrome do the two go hand in hand also have ITP or is this another invisible illness explains why I am feeling so wiped out drained and my body aches maybe not itp it is chronic fatigue syndrome awaiting replies working full time is really taking its toll :(

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Topography52_-
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5 Replies
Ab36 profile image
Ab36

Sorry to hear this. My son has itp and often complains of aching limbs and gets exhausted, it just seems to wash over him all of a sudden. The last consultant we saw seemed more willing to acknowledge this as itp side effects than the original one we saw who said there was no connection. Who knows what goes on with this strange confusing disorder. Hope you get some positive answers soon.:-)

Topography52_- profile image
Topography52_- in reply toAb36

Thank you for your reply : ) I know my consultant diagnosed this but then the symptoms could be something different again : ) we live learn with itp ..

Hope your son feels well soon XxX

SoporRose profile image
SoporRose

Topography,

I also have ME/CFS. I've been struggling with it for almost five years now. It started after I did a course of Rituxan and never went away, though I must admit my platelets have stayed over 100K. But it's messed up my life miserably and I am still seeking relief. There are no doctors in my area who specialize in the disorder and take my insurance (I'm in the U.S.). It's hard to tease out the strands and to figure out whether the ITP is causing the fatigue.

My primary care doctor recently suggested I try taking melatonin in the evening to see if that would help me get more restful sleep and try methylphenidate (Ritalin) during the day to see if that would increase my alertness. Both just made me ill — the Ritalin made me very jittery too — in did nothing to make it easier to sleep or to focus. But apparently other people find these medications useful. I'm going to send my doctor a report tomorrow and see what she suggests as a next step.

What have you tried? What suggestions have you received?

Ruth

Topography52_- profile image
Topography52_-

Hello SoporRose ,

As of yet no treatment only got my diagnosis a day ago just waiting for a hospital appointment my consultant said I only get 1 so I have no idea what to expect my appointment is 4th April not too bothered struggled last 14 months : ( keep your spirits up and you have a wide circle of friends with advice to offer take care XxX .... Will keep you updated : )

rjsmyth profile image
rjsmyth

I think all of us who have ITP get extremely tired. Trouble is on the outside we look healthy so it is hard for others to understand what it is we are suffering. Pretty much all of the treatments also have unpleasant side effects - many causing tiredness.

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