nerve pain

[MyStar86]

Hi,

does anyone else suffer with chronic nerve pain? I’ve suffered with this in the past but now it’s come back out of nowhere my intestines feel like they are burning it is horrific I had surgery nearly 3 weeks ago so I don’t understand why this has come on now and pain relief doesn’t stop it. I’m in agony it hurts all the time even trying to lay down and rest all day all night. It’s horrific I feel like I’m going to lose my mind as I can’t think about anything else except the pain and it’s sent my anxiety through the roof due to the burning it wasn’t stress etc that caused it I feel like that now because of the burning I’m worrying that I’m going to be stuck like this as it’s agony I can feel everything going on inside.

Please help I don’t know what to do I’m so scared and feel very alone xx

[meadfoot]

Very sorry to hear about your nerve pain. I suffered the same pain for three and a half unbearable years. Agony doesnt cover it. I had multiple trips to a and e in excruciating pain, countless scans and medications all to no avail. No one thought of nerve pain, my lovely GP was desperate on my behalf.

In desperation I searched the internet and found an amazing highly rated Neurogastroenterologist not that I knew it was nerve related just out of desperation as no gastroenterologist had helped. I struggled in dreadful pain to see him in London at his private practice. Its the best £300 I had ever spent. He diagnosed nerve entrapment at certain points in my epigastric region and wrote to my GP to refer me for deep nerve injection by a pain specialist locally at my hospital.

I was fortunate enough to see an amazing pain specialist and she undertook the injection in theatre under deep guided xray. Bingo the pain went in under an hour never to return. That was over four years ago. I am grateful everyday to those two wonderful doctors, they gave me my life back. Best wishes to you.

[MyStar86 in reply to meadfoot]

Thank you so much I need some inspiration because I feel like I’m losing my mind and ready to give up it’s very scary I am suicidal and it’s scaring me I am watching my mum fall apart because no one knows what to do. At the moment everyone is telling me it’s just part of the surgery recovery but I know something is wrong I suffered before but nothing like this I’ve lost who I am I’m having terrors all night long burning up and crying all the time I don’t feel I have the strength to keep fighting. I do have a referral privately to a pain management specialist in London and I’m just hoping he does via the phone as that’s the only thing I can think of my gastro hasn’t been much help but I could ask him to refer me to a neurogastro as I need help but non of this is fast and I’m on the edge. Thank you for sharing your story I’m just so lost and can’t even think straight xx

[meadfoot in reply to MyStar86]

I was exactly the same, my life was torture, I assumed I was lost forever and the real me was fast disappearing. I was offered every pain med but nothing touched the sides, well they wouldnt because they were not suitable for my undiagnosed needs. My lovely GP said it was counterproductive putting me on anti depressants as I wasnt a depressive but someone desperate with uncontrolled pain and what I needed was diagnosis and a solution to the pain. She was correct. If you want the details of my neurogastro please send me a private message via chat facility above. He may or may not be right for you of course. He is world renowned.

[MyStar86 in reply to meadfoot]

I have just sent you a message thank you so much I just need help I’m past desperate now xx

[edwangy in reply to meadfoot]

Would you tell me his name please

[meadfoot in reply to edwangy]

I can send you a private message via chat if you ask the question there. I dont think the forum allows recommendations of specific medics which is understandable as it can be seen as advocating for a specific person. Cheers.

[artisticmum in reply to meadfoot]

Please could I have the name of your neurogastro doctor. I have been in constant pain with my IBS for eight years now and it wears you down. If you wouldn't mind sending me a private message please. Many thanks

[MummyLuv]

my son experiences this. He has a gene flaw that means his enteric nerves are not mediated. He was being prescribed pico sulphate for chronic constipation which stimulates these nerves and was in absolute agony. I was being told that yes he’ll have sore cramps but he won’t be in agony but he absolutely was! It was excruciating. Now we have made the link (my research I have to say) the pico sulphate has been stopped and the pain has subsided.

I hope you find the reason for your nerve pain and can get your life back.

[meadfoot in reply to MummyLuv]

Sorry to hear of your sons distress. Has he found a suitable alternative to aid his chronic constipation. My nerves and muscles have failed so only dulcolax seems to help but that is getting less effective over time I am finding. Its like taking bowel prep for a colonoscopy every few days, cant be good.

[edwangy]

I'm exactly th same, had surgery two and a half years ago and have been in agony ever since. Had CTs, colonosporys, scans etc have now been told it could be damaged nerves after sutgery. I have pain 24/7 which stops me from sleeping, no painkillers help. I have to take sleeping pills just to get a few hours sleep.I've been apssed around the NHS system all this time and am still the same.

[MyStar86 in reply to edwangy]

How do you cope day to day? I can’t do anything I take sleeping pills but that’s not enough the nights are very hard I feel constantly sick due to the pain and I am going insane I am crying all the time and unable to cope at all I can’t have any form of a life I had to move back to my parents. I have lots of health issues but this pain is destroying me and I am going to fight for help as I can’t be left like this I am suicidal with it as there is no escape and I’m desperate. I am hoping the gp can help next week in the short term and I am talking to a pain management specialist in December as I need help asap I don’t think doctors realise the danger of leaving someone to suffer.

Do you take anything that helps you?

[edwangy in reply to MyStar86]

Nothing really helps, except getting some sleep but when I wake it's still there. I've been to pain management clinic also, they teach you relaxation, distraction techniques and acceptence that the pain is there. Some days are worse than others for me, ie on sunday I was in so much pain I spent all day on the sofa with a hot water bottle on my stomach. I've also felt suicidal, but I try not to think negative and just take each day as it comes. The surgeon says surgery won't help and has referred me to a 'healthy bowel clinic' 2 years waiting list. I think each doctor fobs you off cos they don't know how to treat so they just pass you along to someone else. Can I ask what surgery you had?

[Dolly38]

Dear my star,I do think this is one for GP urgently. Many of us on this web site have chronic pain due to various medical issues. It's complex but you need to contact help urgently.

Do hope you can get help

[MyStar86 in reply to Dolly38]

Thank you 🙏🏻 I am speaking to the gp on Tuesday that’s the earliest I could get after I explained my situation as I wanted my regular gp as she understand my long journey and she is best placed to help as I’m so lost and confused I tried taking shortec and it just messed with my head and my tummy so that’s no good. I’m so lost and confused I am having the worst nights it’s destroying me I’m in agony and I just want to cry all the time I want this all to go away xx

[Dolly38]

That's brilliant and understand the need to speak to your registered GP who knows your story. Hugely important as our journey is very important for GP but many have no time to read our medical history.Warmest wishes, just take each day as it comes and everyday have a little treat warm bath shower with favourite wash TV favourite programme as distraction works wonders! Indulge in day time TV even