What sort of pain etc?

[Guest guest]

Hello everyone,

, I think you can take it from all of us that you get a variety

of unpleasant sensations, pains, nausea, dizziness, light-

headedness, extreme tiredness, weakness, fogetfulness etc. etc. but

sometimes feel well! I really do think that the combination of pain,

worry, medications etc. can have its effect on you from time to

time....is bound to really.

I would be interested in comparing pains! I know this sounds like a

bizarre topic for discussion (especially on Valentine's day...so

romantic!!) but I honestly would like to try and understand more

about our pain.

For me there are two big subsets of pain (and each of them has its

own subsets!).

First there is the horrible upper-abdominal pain which can also be

felt in the back. This pain is like a girdle of pain radiating from

the pancreas all over the middle. For me personally it is the most

unbearable symptom of all, although not the most embarrassing

because it isn't obvious to anyone else except in the greyness of my

face when I have it. For me, this pain goes back to childhood when

it was even worse (though much less frequent...just once or twice a

year for 6/7 days at a time)and I have had it at every stage. Up to

the age of about 38 it was my only symptom but it was BAD when it

was there and totally forgettable when it wasn't.

Then there is the whole range of symptoms of mainly lower abdominal

pain/gas/bloatedness/diarrhoea/steatorrhoea which are connected with

malabsorption. They began for me around the age of 38 and by the

time I was 42 in 1988 they were all horrendous. I had both types of

pain pretty well all the time.

Various dietary changes helped and I seemed to move into a better

period of my life again though never completely symptom-free.

2000-2003 (I'll be 58 on Tuesday BTW) saw the upper pains returning

with increased frequency and severity (but not as severe as in

childhood and youth) and malabsorption symptoms too though not as

bad as when life was one long flare-up in the late 80's. I have to

say that the Creon (high doses prescribed last July)is just magic

with the malabsorption symptoms. After years and years of toilet

probs I am almost free of them....almost like a normal human being!!

Well, as normal as I'll ever be!

But the upper-abdominal pain is another matter. I have been lucky in

having had three relatively easy months from that point of view but

I am having a bad time with it just now. Sadly, I can find no

trigger although I have not been sensible enough to follow Heidi's

advice on keeping a proper food/activity journal. I've started to-

day!! Dear diary......!

Would anyone else like to comment? When you take pain-killers is it

mainly for the pancreatic pain itself (upper-abdominal) like me, or

don't others experience these " different " pains? If you do have

different pains, which is the worst sort?

BTW, when I had only upper pain I was told it was gastritis, ulcer

etc. etc. When I began to have lower pains I was told it was IBS!!

That's quite apart from the mistaken (probably) diagnosis of coeliac

disease in 1988! Mind you, the gluten-free coeliac diet did help so

I shouldn't complain! In fact, I haven't dared abandon it yet.

Sorry about the long post but I'd really like to sort out this pain

matter. Please comment!

With good wishes,

Fliss

[Guest guest]

Fliss, I think this a good idea especially for the newbies among us.

Everything you've mentioned below is/has been my experience so far

with the exception of the pain radiating around like a girdle to the

back. Mine doesn't do that......mine is more of a digging/burning

sensation. In fact, as I probably have already said (!!), the way I

first described it to my doctor was that it felt like " my stomach was

EATING itself. " And, in fact, that is more true than I could have

imagined. I'm going to start a journal as Heidi suggested, but I'm

noting my symptoms carefully already, i.e., it seems to be a one bad

day/one good day thing.......consistently every other day. AND, the

thing that occurred to me tonight is that the bad days come after the

good ones WHEN I've been able to eat a dinner the night before (low

fat....say a boneless chicken breast and a salad...actually though I

love salads they are starting to cause me much gastric distress).

Then, the dinner sort of just " sits there " with no movement as it

were (!!), then it goes into the digging/burning, lightheadedness,

nausea, weakness, fatigue/exhaustion......and so far, on and on it

goes. I usually end up by going to bed early with the heating pad on

but like others, I'm experiencing insomnia and I usually just read

until midnight (with alternate sessions in the bed of sitting up and

holding my abdomen with the burning/feeling like I'm going to have to

throw up). I (like you) also seem to be having lower bowel

distress..intestines feel like they are being twisted up sometimes.

The biggest symptom there though is after eating, I'm hearing

tremendous sounds of " liquid secretions " I guess. Anyway, that's all

for now......

> Hello everyone,

> , I think you can take it from all of us that you get a

variety

> of unpleasant sensations, pains, nausea, dizziness, light-

> headedness, extreme tiredness, weakness, fogetfulness etc. etc. but

> sometimes feel well! I really do think that the combination of

pain,

> worry, medications etc. can have its effect on you from time to

> time....is bound to really.

> I would be interested in comparing pains! I know this sounds like

a

> bizarre topic for discussion (especially on Valentine's day...so

> romantic!!) but I honestly would like to try and understand more

> about our pain.

> For me there are two big subsets of pain (and each of them has its

> own subsets!).

> First there is the horrible upper-abdominal pain which can also be

> felt in the back. This pain is like a girdle of pain radiating from

> the pancreas all over the middle. For me personally it is the most

> unbearable symptom of all, although not the most embarrassing

> because it isn't obvious to anyone else except in the greyness of

my

> face when I have it. For me, this pain goes back to childhood when

> it was even worse (though much less frequent...just once or twice a

> year for 6/7 days at a time)and I have had it at every stage. Up to

> the age of about 38 it was my only symptom but it was BAD when it

> was there and totally forgettable when it wasn't.

> Then there is the whole range of symptoms of mainly lower abdominal

> pain/gas/bloatedness/diarrhoea/steatorrhoea which are connected

with

> malabsorption. They began for me around the age of 38 and by the

> time I was 42 in 1988 they were all horrendous. I had both types of

> pain pretty well all the time.

> Various dietary changes helped and I seemed to move into a better

> period of my life again though never completely symptom-free.

> 2000-2003 (I'll be 58 on Tuesday BTW) saw the upper pains returning

> with increased frequency and severity (but not as severe as in

> childhood and youth) and malabsorption symptoms too though not as

> bad as when life was one long flare-up in the late 80's. I have to

> say that the Creon (high doses prescribed last July)is just magic

> with the malabsorption symptoms. After years and years of toilet

> probs I am almost free of them....almost like a normal human

being!!

> Well, as normal as I'll ever be!

> But the upper-abdominal pain is another matter. I have been lucky

in

> having had three relatively easy months from that point of view but

> I am having a bad time with it just now. Sadly, I can find no

> trigger although I have not been sensible enough to follow Heidi's

> advice on keeping a proper food/activity journal. I've started to-

> day!! Dear diary......!

> Would anyone else like to comment? When you take pain-killers is

it

> mainly for the pancreatic pain itself (upper-abdominal) like me, or

> don't others experience these " different " pains? If you do have

> different pains, which is the worst sort?

> BTW, when I had only upper pain I was told it was gastritis, ulcer

> etc. etc. When I began to have lower pains I was told it was IBS!!

> That's quite apart from the mistaken (probably) diagnosis of

coeliac

> disease in 1988! Mind you, the gluten-free coeliac diet did help so

> I shouldn't complain! In fact, I haven't dared abandon it yet.

> Sorry about the long post but I'd really like to sort out this pain

> matter. Please comment!

> With good wishes,

> Fliss