Please join the discussion to shareabout Craniopharyngioma


Postby Anna » Wed Aug 24, 2011 9:01 pm

Hi everyone

I wasn't sure where the best place to post this was, so I've added it here as well as hypopituitarism! Happy to chat generally with other craniopharyngioma patients/carers.

I had my tumour removed in 1984, craniopharyngioma with cushings - very rare and yes a double whammy!

I'm interested to know if other people have found that their fatigue has got worse with age?

It seems to me that the normal decrease in energy levels associated with aging is possibly exagerated in pituitary patients. I've worked part time most of my working life because of low energy levels but I'm now finding that even doing 2 and half days a week is a struggle sometimes. I'm in my 40's and all my hormone levels are ok - take thyroxine, desmopressin, oestrogen, GH.

Be good to hear other people's experience.

I will add if you are newly diagnosed I am much better than immediatley after my operation, despite energy levels flagging. It took me 2 years to feel anywhere near normal but I improved with time, so don't despair. :)
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Re: Fatigue

Postby pituitary » Tue Aug 30, 2011 8:01 am

i keep getting checked for tumors but nothing just yet but have also noticed how worn out i am getting lately and i am ment to be starting college next week full time and already worrying about it
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Re: Fatigue

Postby Anna » Fri Sep 02, 2011 10:50 am

Hi, sounds like you haven't had a diagnosis yet, is that right?

Re the fatigue, you just have to pace yourself. A pain I know but a few months after my operation I went on to do 'A' levels, starting part time at first. Allow yourself afternoon naps if your schedule permits, I find this really helps but I don't sleep for longer than 30mins otherwise feel groggy instead of refreshed!
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Re: Fatigue

Postby jemima » Tue Oct 11, 2011 2:05 pm

I took my A levels (second time round due to missing so much - guess why!!) just after starting all my drugs - steriods, DDAVP, thyroxine and oestrogen.

You really do need to pace yourself. Have a cfhat with a tutor and see what they would expect you to do. Create a schedule and try to work to that - timing in organised breaks to watch TV, have a sleep (not too long though!! :D ) and see how you go.

If you are really struggling to keep up with the work have another chat with your tutor and see if they can help - they will help even if they don't understand.

If you are really having trouble getting help send them on here and we will give them what for!!
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Re: Fatigue

Postby member_37384 » Mon Oct 17, 2011 10:04 pm


i had my tuma dug out in 1976 when i was 5. tired! i am all ways tired!! without growth hormone i would be asleep in my office chaire most of the day!! i find that work culture doesn't permit the sort of cat naps i feel i need to maintain my effectiveness, though when i am despirate i will go and find a little side room, hope noone will disturb me and nod off for a few minutes.

when tiredness does overcome me, my experience of it is best described as fatigue, i feel that i just need to flop and moving limbs becomes an effort. thinking is like my head is stuffed with cotton wool and i find it difficult to think straight.

though my employer is aware of my condition, i am very self critical and i am never sure what my condition is responsible for and what part my character is responsible for; so i may struggle in silence more than i should.[quote][/quote]

i am not sure if my tiredness has altered with age. i can say with absolute certainty that growth hormone has increased my energy levels emmencely.

i am also very interested to hear of others peoples experience of tiredness.


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Re: Fatigue

Postby plum » Tue Oct 18, 2011 8:14 am


i've also been having a battle with fatigue and it started even before they diagnosed the tumour so some of it is probably due to the tumour iteself and some of it is probably due to the surgery / hormone therapy etc etc.

the only way that i can cope is that if i feel the brain fuzziness coming on, i switch off the telephone, stay away from eveone so that i don't have to talk or answer any questions. sometimes i do something physical such as going for a walk or housework. of course this is not possible in the work situation or if there are other family
members around.

i think that there is another post on fatigue somewhere on this forum also, so there may be some ideas there.

also, have you looked on the macmillan website? there is a section on fatigue here, which may help:

http://www.macmillan.org.uk/Cancerinfor ... tigue.aspx

the latest research seems to suggest that some gentle physical activity helps, even though it seems counter intuitive. but then our fatigue is not just due to being tired, is it?

hope this helps.
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