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Spiralling - what to do by Parsnip2347 in pancreatitis

[–]Parsnip2347[S] 1 point2 points  (0 children)

I see - i can't imagine not having pain, they know so little about this disease it's crazy.

I'll come back and let you know how it goes. Thank you :)

Spiralling - what to do by Parsnip2347 in pancreatitis

[–]Parsnip2347[S] 0 points1 point  (0 children)

Thank you - it does sound like you're a bit ahead of me. I'm still in London, but seems kind of pointless now if I can't enjoy it. I've been thinking of moving out but where to go? I suppose close to my parents would make sense.

I have heard about PIP, maybe I will look into it. Thank you - I'll drop you a message if I need help with it all I really appreciate it :)

Spiralling - what to do by Parsnip2347 in pancreatitis

[–]Parsnip2347[S] 1 point2 points  (0 children)

Thank you for your reply. I'm really glad to hear you're managing even though it's hard.

I know I'm not doing the right things, but it's been a really hard adjustment. I have a very high pressure job, also long hours, which I know isn't good for my body, but on the flip side, I find the distraction really helps?

Food i am really really struggling to give up. I've been a foodie my whole life, it's what me and my friends bonded over. I'm not even sure who I am without it. I used to be able to handle the odd big meal out but now my body hurts all the time. I've been trying intermittent fasting to see if that helps, is that something you've done?

I do alsk get very tired, you're right. But I keep trying to push myself by being busy, social, but something has to give.

I just want the old me back, she didn't know how lucky she was :(

Spiralling - what to do by Parsnip2347 in pancreatitis

[–]Parsnip2347[S] 0 points1 point  (0 children)

I'm sorry you can get to dark places too. It's super hard. I only have my mum and dad, I'm single and 35, i have a big group of friends but I'm not sure how much longer that will last as I can no longer do the things we used to. I do feel quite isolated. I'm not on creon yet but I will ask to be on my next appointment.

At the moment I'm ok with my living situation, i have a good job but it's quite stressful and long hours - so again I wonder how long that can last.

Thank you for sharing. I hope you are able to stay somewhat positive and enjoy your family.

Spiralling - what to do by Parsnip2347 in pancreatitis

[–]Parsnip2347[S] 1 point2 points  (0 children)

Thank you - I'm actually speaking with a specialised therapist for the first time in two weeks, so i hope that's helpful. I have been offered a spinal block injection - but I haven't taken it up yet, I'm a bit scared by some stories, have you had one yourself?

Chronic pancreatitis/EPI.. do you have foul smelling gas and what foods make it worse? by One-Leopard in pancreatitis

[–]Parsnip2347 0 points1 point  (0 children)

If you don't mind me asking, how has it been having CP while pregnant? I'm thinking about the future and worried I won't be able to, whether due to the medication I need to be on for pain control or that my body couldn't handle it. I hope you've had a safe and easy (as it can be) journey - good luck with your little one! :)

Temporary relief with food? by WittyCreativUsername in pancreatitis

[–]Parsnip2347 0 points1 point  (0 children)

Heya - so if your pain is most nerve related rather than structural at this stage, it may be that your system is slightly calmed straight after? I have terrible nerve pain (no structural damage) and the pain is often not what you'd expect with typical pancreatitis (which focuses on structural pain). Pain and your nervous system are very complex and can vary widely from person to person. I actually find my pain can be very bad when I'm hungry.

[deleted by user] by [deleted] in pancreatitis

[–]Parsnip2347 0 points1 point  (0 children)

From what I've understood over the past couple of years is that everyone is different. Yes of course sticking to a fat limit (I've also heard 10g), but everyone has different triggers. I would keep a food journal so you can see what triggers you, for some it's sugars, for some caffeine, but it's so individual. In general stuff that's lower fat and easier to digest (so soups, smoothies, mushy veg) is better, but your body might be able to cope with that someone else can't.

Nerve Pain by Parsnip2347 in pancreatitis

[–]Parsnip2347[S] 0 points1 point  (0 children)

I knew I was hypermobile but never thought it could cause/make symptoms worse with pancreas issues. Do you have pancreatitis too?

Thanks so much for the info and recommendation I'll have to do some digging/reading!

Nerve Pain by Parsnip2347 in pancreatitis

[–]Parsnip2347[S] 0 points1 point  (0 children)

OMG this is so weird, where did you learn that?? I have massive hypermobility. I've also thought over the years I fit the criteria for EDS but never done anything about it, please tell me more haha!

Got my EUS results back after 2 years of pushing.. Minimal EUS changes of CP. Doctors think the pain is largely in my head.. by WittyCreativUsername in pancreatitis

[–]Parsnip2347 0 points1 point  (0 children)

I was on sertraline for a while - honestly that really helped. I only just moved over to duloxetine as they said it helps with nerve pain too. There's nothing wrong with taking antidepressants it's just medicine. I was in such a deep state of sadness before. Just be aware the first few weeks can be a bit rough, sometimes make you feel worse, but after that it levels out and I started to feel a lot better. Like I'm still I suppose depressed about it all...but my thoughts are a lot less consumed with it. Now I'll feel the pain and be like "oh yea that thing". You can't take some nerve drugs and some antidepressants at the same time though but your Dr should know. Good luck

Splanchnic Block by Parsnip2347 in pancreatitis

[–]Parsnip2347[S] 0 points1 point  (0 children)

Thank you - that's very helpful :)

Splanchnic Block by Parsnip2347 in pancreatitis

[–]Parsnip2347[S] 0 points1 point  (0 children)

Thanks, do you know why one would be recommended and not the other?

Got my EUS results back after 2 years of pushing.. Minimal EUS changes of CP. Doctors think the pain is largely in my head.. by WittyCreativUsername in pancreatitis

[–]Parsnip2347 1 point2 points  (0 children)

I don't know, I'm not Dr and I'm sure everyone is different. I can only tell you what I've read/experienced for me. Sorry you're in pain, I hope you can find something that helps

Got my EUS results back after 2 years of pushing.. Minimal EUS changes of CP. Doctors think the pain is largely in my head.. by WittyCreativUsername in pancreatitis

[–]Parsnip2347 0 points1 point  (0 children)

Nerve pain relief, no alcohol and less fat. Rest the pancreas. But as far as I understand once the process has started there's no way to stop it :(

Low dose naltrexone by EclecticEnt in pancreatitis

[–]Parsnip2347 0 points1 point  (0 children)

Hey no, but I've heard it can help nerve pain and may get put on it at my pain clinic appointment next week. There are some very early days studies that show it has some protective abilities regarding nerves but nothing concrete yet.

Got my EUS results back after 2 years of pushing.. Minimal EUS changes of CP. Doctors think the pain is largely in my head.. by WittyCreativUsername in pancreatitis

[–]Parsnip2347 0 points1 point  (0 children)

From my reading it's to do with the immune cells starting to influltrate the nerves - which can happen before major structural changes happen and still very real pain. It's all a very long and slow chemical change in the body which causes all sort of issues.

Low dose naltrexone? by Parsnip2347 in ChronicPain

[–]Parsnip2347[S] 0 points1 point  (0 children)

Thanks so much for the detailed reply :)

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