I'm in bed, been crying for hours, I ate a small meal at my parents, maybe got a little to over confident & now I am paying the price. I've NEVER EVER felt anything like this it's literally THE WORST PAIN EVER! The pain come on suddenly in my stomach near my navel now it's gone around to my back, I can't press on my tummy or lie on my back the pain is radiating. Hearts pounding I'm sweating, just trying to stand up as I've been urinating loads today, and my GOSH I CANT walk properly the pain is toooo much. I'm so scared my son is asleep in his room & im on my own I've bared 5hrs of this I don't think I can take much more. I remember getting my mother an ambulance for her acute pancreatitis a few years ago & she was rolling around in agony. I hope and pray I haven't got that !! Hate this 😭the pains feel like labour!! Seriously though I'm gunna have to ring an ambulance because something is terribly wrong. 😭😭
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LauraMk30
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I went through that for weeks last yr and the pain was so bad I wanted to faint it had me down for thrree months I just think honestly its signs of the disease progressing at least my blood work shows that
Hopefully this has either settled now or you've arranged treatment but if not it does sound like you should ring somebody - try the 111 service as they will run through an assessment with you and decide what the best options are. I hope you're feeling better soon and please do update xx
I'm assuming you are in England but realised I shouldn't - if you are then if you ring 111 it puts you through to an out of hours doctors service. They will run through various questions which enables them to assess whether you can wait and see your doctor, whether they put you through to a clinical nurse for advice, whether to send a doctor out to you or whether you need to go to hospital. They will be qualified to make a much better medical assessment based on the symptoms at the time.
Thank you mifford, I'm in hospital. Yes UK based. It was that quick this morning that I didn't even run through the questions the ambulance came ASAP & I just went to hospital. I think they realised the seriousness over the phone. Thankfully my dad arrived prior & took my son to his house it was all very quick in the end x
im very glad to read that you didn't wait. Do they know what it is yet? Look after yourself and hopefully they'll, have you comfortably back at home soon
Hi there, so sorry you're having such a horrible time. Have you ever been told you may have IBS ? I have it and it sounds very much like my symptoms. Obviously you should see a Doctor asap. Try taking Peppermont Tea, this helps calm mine. I hope it is only IBS. Keep in touch and hope you are feeling much better soon !
Hey thank you all for your messages. I have been experiencing pancreatic pain so I'm going to be having investigations to see if it's acute or chronic pancreatitis.
It's the worst pain I have ever had, the pain started dull after eating & 4 hours later it became excruciating! Led on my side eased the pain a little but I couldn't lie flat on my back. To describe how truly painful it really was I placed a hot water bottle on my bare skin & i forgot it was there, the immense pain over ruled anything I've ever experienced. It helped ease the burn but it has burnt my skin a little, but we're I was in that much pain I didn't care. My mother had acute pancreatitis & nearly died, so did my father. Gallstones were the cause. But my mothers condition was much worse than my fathers as her body was filling up with poison from the pancreas, I was with her at her worst & the days leading up to me calling the ambulance
They said if I had of left it any longer my mother would of died. She had blood poisoning too.
For me the pain was intolerable, I can understand with true sympathy & empathy for what my mother went through. Barbaric agony.
Waiting on a ultrasound & CT scan. Morphine is helping.
I've been through so much the last several months & now this, & to tell you truth if I thought I had immense pain before I was wrong this is by far worse than labour! It's indescribable. Towards 7am this morning the pain started to ease, the middle of my back had a pulse which was Very strange, Even breathing made it worse, but as soon as the pulse started to show down I knew whatever was happening was gunna stop soon & it did & I fell straight to sleep.
I knew it wasn't IBS or trapped wind & indigestion.
It was unlike any burn that I've ever felt with my GERD. It was constant stabbing cramping & burning I knew in my heart it there was something seriously wrong. I ended up passing out because of the amount of pain I was in so i endured 5 in half hours of no pain relief with an unbearable agony & I have to say i don't think Any normal painkiller would of touched it. Thankfully my father picked up the📱came to my aid at 6am & I was in hospital by half past!
I appreciate your messages my lovelies and I will reply soon x thank you
Hi Laura, I've only just seen your post. So sorry to hear your in hospital. Do hope you've got a diagnosis and your pain is under control. You poor thing, it's one thing after another. X
Hey there Ludo, thanks ever so much for your message.
I'm spiralling, I knew there was something wrong. I'm still under investigations which is good. & one of the other things there doing some cancer marker blood tests too. Checking pacifically at the pancreas.
I've been in so much pain Hun, it's unlike anything I have ever felt. I've also had a chronic itch in the centre of my back Where the pain is situated. It's like a deep deep itch.
I've come up with these painful boils under my chin & neck near the glands. Plus my hair is falling out a lot more.
I'm on a liquid meal as solids are too much of a struggle. It hurts when I'm eating & hell of a lot more after.
I'm just loosing weight & feeling lifeless.
I Am trying to be positive but It's like I've come off one bad path to another. I see it as I'm crossing another bridge but this one isn't stable, it's wobbly, it's fragile & every step I take could be my last. there's so many risks ahead of me, it's gunna be challenging & scary but I have to keep going if I wanna make it to the other side.
I'm so sick of my life right now, I sick & tired of being sick & tired. I don't do self pity I haven't thought about myself I've been thinking about my family my partner & my son. I don't see my old friends anymore but I miss them & think of them often.
I'm in a scary place right now because I'm in the dark, a few months ago I thought I had finally found a safe place to land, but now I feel lost.
I'm awake most nights till the early am, & I'm enduring what feels like an eternal suffering.
I know we are all suffering in our own way, but it's become apart of me, & i apart of it, it's like my shadow. This illness has gone from one spectrum to another so quickly, & I feel as if they've left me to get to this point & think actually we need to do something now.
It's a shame it taken me to this stage to be taken seriously.
My symptoms have never been a joke, & it's a shame too that I have felt like a clown behind the glass, I've put so much of my time & effort & energy trying to find the missing pieces to my puzzle, & all the while I've been fading into nothing, the warning alarms have been going off for a long time & doctors have chose to ignore & dismiss them. & I'm now paying a price for it.
There are many out there like me, neglected & rejected.
And it's really sad, & upsetting because we feel too. We're not just a tick on a clip board, we're not the labels the numbers we are people we are human beings with beating hearts & beautiful souls who want nothing more than to be healthy happy & free.
I feel shackled, & in prisoned, I do feel alone & I do feel afraid. I have spent so much time being afraid, being quite & not voicing how I really feel. Every dismissal, every rejection every tut & huff, & every discharge & every remark & comment has ripped at my being & effected me emotionally. I'm convinced now, that any living person on this earth can help another human being, it's a choice it's free will, but so many choose to not help, people choose to walk away, to leave you suffering to watch you disappear knowing all to well that they could save you if they made the choice to.
I'm 31 & I feel 81, my body is scarred from head to toe. I'm battling my own reflection & I am also battling a war inside that I have not yet won. I can't except that this is it. There has to be more to my life, I've got so much potential & I want to do so much with the gifts I have been given but I can't.
I haven't got a choice.
I was watching my brothers last week, not a worry in the world. They seem so unhappy & sad. I thought how can they have faces like a slapped kipper when they are rich in health. I can't remember the last time they were sick.
I look at them sometimes & wish I had there immunity. They have good blood.
I can't stand being around anyone who moans about pointless things. To them it's major to me it's minor. It's really nothing to worry about but they haven't anything else to fulfil there days,
One day if the wind changes & they endure a period of illness I hope they look at me and appreciate the journey I have struggled. I hope then they will have some empathy for the pain i suffered.
& I pray that they never have to go through what I had/have to go through.
As much as they've caused my life a misery, I wouldn't want them feel the way I do, they used to say I was cursed when I was born, I used to shrug it off & laugh. But thinking about it now it could've been true.
I used to think I was adopted or switched at birth as they've never had a bond with me, they've always been the golden boys, like butter wouldn't melt. I'm the first born & the only female out of all the children & grandchildren. Maybe I was born to be different & my mother when she was 10 years old was wishing on a Star for a special child, she told me she prayed for a little girl who was unique & different.
I guess her wish came true, but it's more of a curse than a blessing.
I can't remember the last time I was well. I didn't realise I would wake up one day and never get better.
This is the first time I've opened up & said exactly what I've always wanted to say. So I'm not going to delete it & I will send it to you as it's meant to be said. It's the little voice in me speaking 🦋
I thought I had spent a life unlived but as it stands I've lived a beautiful fulfilling life. I've loved & lost & I've learnt so much.
I thought I would have so many regrets but I don't. Everything that has happened past & present has shaped me into the person I am today.
I spent many years from a teenager to a young adult feeling unwanted & unloved. They say you haven't lived if you've never fallen in love, & I can proudly say the moment I knew I found pure love was when I had my son, he was my first true love & always will be, & then through a few bad violent relationships I made it to the other side & after a few years of healing & becoming whole again true love found me, my soulmate & I are 2 half's of the same soul. He's home. So I walked into love with him, it was like I was coming home. & every day I find myself falling in love with him falling in ways that only a once in a lifetime true love can make one feel.
He's my best friend & eternal flame & I'm in love, so I have lived.
I'm sat looking out the window watching the world go by, listening to precious talk amongst all the lovely people & there loved ones. Also I hear the clock ticking quietly in the background & it's quite soothing, i can hear the symphony of my heartbeat.
I won't take any more of your time, & thank you for taking time out of your life to hear a little about mine. I may sound a little detached but it's hard in here, I'm struggling, sometimes I feel as if I leave this plane of existence & speak from a place in my heart where pain does not exist, where negativity cannot enter, it's a happy place full of beautiful loving memories that keeps me strong smiling & when im there I know I'm ok. I'm free.
Dear Laura, I'm so glad you were able to your heart out. I hope it helped a little by doing so. You sound at rock bottom.
It must be very frightening for you. I too believed I had cancer. No amount of antibiotics and pain killers could rid me of the pain I was suffering so I came to that conclusion. You know yourself that something seriously is wrong. It's frustrating And scary and you do revalue your life.
People find it hard understand suffering unless they have experienced it, and sometimes find it hard to deal with especially if it's a loved one, so pretend it's not happening,
I hope and pray that you get an answer very soon. Hold onto the good things in your life, it will help you through.
Thank you, It was really lovely of you. I did help opening up, once I start writing I loose myself. I've always expressed myself through words & it's normally in my journal but this forum is like a virtual Journal that speaks back & where I've spent so much time within silence to hear a voice & to read replies are like a dream come true.
It's horrible when we think it may be cancer, & as you said yourself you felt that too. My dad said I was speaking silly & shouldn't think like that. But it's impossible for him to understand because he isn't me. He's never experienced it. But I know he's got my best interests at heart, & wants me to stay positive & doesn't want me to worry & make myself more unwell. I get it.
Im not in denial & my dad likes to pretend that there's a simple solution out there I guess it helps him cope. I'm facing things head on so it is very scary but I do value my life. & wake up everyday with a grateful heart. I just wish a little harder sometimes that I'll get a break from all this & a nice doctor will come along & take me under his wings.
Thank you so much Ludo, I don't feel so alone now I have you messaging & others. It's always nice to receive virtual comfort even though we're all in different places we're all in the same pod. It's a reassuring feeling when I know I'm not alone & we're all in this together.
🙏🏼feel blessed to have made some true friends it's rare to connect on the same level nowadays, but when it happens it's a blessing x
Hello. I'm feeling terrible that I've only just read this and you've been in a terrible amount of pain and been hospitalised. I'm so glad you called an ambulance. How are you? Any tests results? Is the pain under control with the morphine? I hope they are looking after you. Sending you my best wishes. Wendy x
Aww hey Wendy Hun, don't worry your going through your own hell too but thank you for stopping by. I'm okish at this second, touch wood. Think the morphine is keeping the pain at 3 as it was at 10.
I have acute pancreatitis. Waiting on more tests. Thanks Wendy. did you receive your x ray results ?? Been thinking of you. Hope your cough & chest is not as bad as it was. Dry coughs are the worst !! X
Afternoon Ludo, I didn't sleep to good, my left leg has some fluid/ swelling & veins have turned blue & distended. Very visible I've had previous blood clots so I'm waiting for a D Dimer blood test. Not sure if it's because I've been led in bed for days on end or it's something else...
I have my trusty hot water bottle & that kept the burn at bay last night. Been feeling quite sick with the pain & in general.
To me it seems that my pain & and symptoms are happening all on my left side. Is that possible? Everything is left sided. I might be talking crazy but it seems that way.
I can't seem to get this metallic taste to go it's worse now, I've had it since the beginning & they asked me what it tastes like & I said death! Not literally.. it's just the worst. I was itching before I got here so it's not the morphine. It's a deep itch like I said before, feels like I need to get deep inside to reach it! It's mostly in the centre of my back. But I can be scratching all over at times.
I had spoke to them about my urine. It's been a dark coffee colour for a few weeks, & they asked if I had spoke to my GP I said I have contacted my doctor about it, I have left samples. I have explained how bad things have been but she says there's no infection so she isn't sure of what to do.?!
My stool are oily and have been for a month or 2, at one point I couldn't leave the house. I said I'm under a private Gastroenterologist at the winfield hospital in Gloucester. & i have a follow up with him on the 28th, as I've had a scope, & awaiting Biopsy results.
They went on to say I've been suffering greatly for a long time & nothing seems to of been done apart from b'ham. But still I should of be referred somewhere else.
It's good that I've had a ODG scope & I don't need another thank god ! So it's good I'm already under a Gastroenterologist. It a step in the right direction.
I'll keep you posted through out Ludo. I hope your ok? X
Hi Laura, hope today has been a better one for you and you had your D Dimer test done. Hopefully you've had other results too. I guess the docs at Gloucester have contacted your private gastroenterologist for the results too.
Pancreatitis is bad enough without all the other complications.
I'm ok thanks. the head MRI scan came back ok so the headaches don't appear to be vasculitis related which is good. That's the trouble you never know what is or isn't. Medication I've been put on has helped so I'm hoping that continues.
Hey Ludo, sorry I haven't messaged. Been quite poorly. My D-Dimer levels are extremely high @ 900 I've had a repeat one which came in @ 890 so I'm awaiting a Doppler scan.
I'm also shedding an excessive amount of hair, with the white bulb follicle attached. It's Due to severe illness & crash diet as I'm not eating.
It's called Telogen Effluvium, I've been quite upset about it. I noticed a substantial amount of hair on the neck of my dressing gown, & it's falling out in clumps now
I've kept a small bag of it.
I'll keep you posted as I'm having more tests today. Hope your ok & not in any pain x Hugs 🤗
Sending hugs to you to Laura. Your certainly having a rough time. I am sorry. Thanks for keeping me posted. Don't worry about replying, Just wanted to make sure your ok xxx
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