The challenge of pain perception

[nogutsnoglory]

I have had episodes of excruciating pain where I have thought for sure im in trouble and it turned out to be nothing and have gone for routine procedures thinking they'll find nothing yet I was rushed to surgery.

I guess what I'm trying to say is can anyone relate to this? How do we know what to take seriously when our bodies pain perception is off and we have a really high or low threshold for pain?

 

[syzygy]

I can relate. My GI recent told me her theory that I have a really high pain threshold to explain why I don't notice symptoms between SBOs. I actually had a basically symptom-free summer but an MRI in early September showed moderate to severe inflammation and the possible beginnings of a fistula. I had no idea that anything was cooking and she chalks it up to pain tolerance. While I'm happy passing on all the day-to-day symptoms, it's worrisome to not have the feedback to know how things are going or whether treatments, diet, etc. are working.

 

[Lisa]

I have pretty high pain threshold, for example years ago I got kicked in the knee while out horseback riding with a friend, hit multiple times....after determining my leg wasn't broken, ride the twenty minutes or so back to the barn, put my horse away and drove myself to the ER.....I still have a scar from the tissue damage, and sported a hoof shape bruise for a couple weeks!

On the crohns side- my doctor used to tell me I never looked as sick as I really was.....by the time I would finally see him it would be a direct admit from his office to the hospital for a week or so to get things calmed back down....and I worked pretty much full time back then to.....

 

[valleysangel92]

I can definitely relate to this, especially with the combination of Crohn's and fibromyalgia, I constantly question whether what I'm feeling is truly that severe, or if the fibro is making things feel worse than they would be if I only had the Crohn's. I find it really hard to know what I should wait out at home and what should send me off to A&E. I usually end up waiting a few days thinking its just the fibro, then go to my GP and get a huge telling off for waiting, get sent to the hospital where I get an even bigger telling off for waiting, and have to stay there a week to convince them I'm not about to burst.

 

[UnXmas]

I think I'm the opposite. I know when something is very wrong. Except it's not just due to the severity of pain.

When I had a blockage and then perforation, there was a lot of pain but not totally unbearable, yet I knew I needed to get to hospital right now .

When I had ileus, that was the most painful, and I knew from the level of pain something was wrong, even as some of the doctors were telling me there wasn't. (I was in hospital recovering from surgery, but the doctors did not suspect ileus at first because I wasn't vomiting.)

When I had an infection following another surgery, I'd been to see a GP to tell her something was wrong, that I was getting worse, not better. She said nothing was wrong, it was just that I'd had a major operation and pain was to be expected - a couple of days later, she was trying to admit me into hospital, because I had an internal infection.

The weirdest one was recently when I had an air embolism. I was calling out to the nurses on the ward that something was wrong, I was literally saying "something is wrong," but there was no pain and I couldn't think of any less vague way of getting across to them that I knew something terrible was happening.

Most of the time, I'm pretty much pain-free, or at least free of anything more than a lot of minor, nagging pains. Perhaps that's why it's easier for me to know when something is really wrong.

 

[Asher]

I can relate. Right now I'm feeling pretty good and the doctor wants me to start Remicade very soon. I've decided to start it, but I'm a little reluctant because I've never felt any pain (at all....seriously) from my crohns. But my doctor said to me that he's surprised that I feel as good as I feel when my insides look as bad as they do. Evidently my symptoms don't match the severity of my disease. Hearing that kind of made me decide to get stronger meds.

 

[nogutsnoglory]

I'm glad I'm not the only one although this is a good/bad problem to have in many ways. Valley I am also so confused by what's a fibro pain vs something else.

 

[lizbeth]

Hi everyone.

I'm a bit of a conundrum to the drs, I experience very high levels of pain in my abdomen and joints, I have many toilet trips a day though this has been reduced greatly by meds, I've been admitted twice for 2 weeks each time and had loads of trips to casualty due to uncontrollable pain yet my biopsies are non specific and my scopes show only mild inflammation. My Dr said that unfortunately my high level of pain doesn't correlate to the level of my disease. I don't yet have a diagnosis.

 

[Asher]

Lizbeth, that sounds awful. I'm so sorry

 

[lizbeth]

Discovered this week why I have so much pain, turns out I have fibromyalgia. I think it's really difficult for people in our situation,, especially when dealing with multiple conditions, deciding when to act on pain. I've had to go to casualty many times only to have the pain pass and nothing be found, it's so frustrating and confusing, I don't want to become someone who's seen as wasting hospital time but I also need to know I can go in too. Ahh! I feel like I'm banging my head on a brick wall at times.

 

[nogutsnoglory]

Liz I'm in the same boat, I never know what's an emergency or just my body doing weird fibro things.

 

[LodgeLady]

I have episodes wear I am totally pain free then all of a sudden I get excruciating pain with nausea. Lower abdominal. I can't sleep. Have to go on a soft/liquid diet and take Zofran and Tylenol with codiene. I can usually get by with 2 days of pain med and Zofran, then just stay with the diet. This all takes place over 5 day period. Then I can gradually get back to a normal diet. Dont know why this happens. My GI thinks it's spasms

 

[Daisy123]

I suffer from dreadful pain at the moment and the pain meds help some but not all the time. I don't want to take stronger pain meds because I am working and struggling as it is. I am hoping that after my SBFT, something can be done and I can stop the pain meds. The thing that frightens me the most is having to live with chronic pain.

 

[UnXmas]

Those of you who have difficulty recognising whether pain is serious or not: do you ever go by other symptoms that often come along with pain? E.g. pain with a fever as well is more likely to be serious than pain without a fever.

 

[Daisy123]

If the pain is functional then there doesn't need to be a fever for it to be serious. At the moment I get hot spells and chills, so god only knows. When it is functional, it becomes more difficult in terms of pain meds because anything decent can make it worse. I know through pain that there is something wrong more than usual.

 

[lizbeth]

As I've only just been told I have fibro I haven't yet been able to establish what is generating my pain, as there is a crossover of symptoms personally I find it impossible to know is it fibro, is it crohns or is it completely unrelated? What scares me is now that I have a fibro diagnosis on my chart and I'm worried that any future crisis will be blamed on that and either not be taken seriously or not looked into. I'm also scared of what the future holds for me living with fibro and the constant, debilitating pain, I'm only 45 but I feel twice that and I can no longer function like the person I once was not that very long ago. I'm sorry for the pity party, I just haven't adjusted yet to having fibro, but I will get there.

 

[lizbeth]

Right now I'm thinking that I need to pay attention to how I'm feeling, maybe keep a diary of symptoms in the hope that I can begin to recognise what needs attention or what is just transient pain, think I've got a lot of learning to do.

 

[UnXmas]

If the pain is functional then there doesn't need to be a fever for it to be serious. At the moment I get hot spells and chills, so god only knows. When it is functional, it becomes more difficult in terms of pain meds because anything decent can make it worse. I know through pain that there is something wrong more than usual.

I didn't mean to imply that pain without a fever isn't ever serious - I was just using it as one example where other symptoms may suggest the severity of the problem. Just as in LodgeLady's post above that vomiting can for some people be a clue to differentiating pain from an emergency situation from pain from a more stable problem.

I know doctors tend to assess the seriousness of a situation by factors such as temperature, blood pressure, etc., and it has seemed to me that they often go by these more than by the severity of pain. They do make some assessments by the type of pain too - a constant pain is more likely to be from something serious than a crampy pain; a pain that makes the patient involuntarily "guard" their stomach when it is pressed is more likely to be serious than when there is no guarding.

Perhaps people who find it hard to assess whether pain is indicating something serious or not may find it helps to learn these signs - the sort of signs they look for at A&E?

 

[lizbeth]

I didn't mean to imply that pain without a fever isn't ever serious - I was just using it as one example where other symptoms may suggest the severity of the problem. Just as in LodgeLady's post above that vomiting can for some people be a clue to differentiating pain from an emergency situation from pain from a more stable problem.

I know doctors tend to assess the seriousness of a situation by factors such as temperature, blood pressure, etc., and it has seemed to me that they often go by these more than by the severity of pain. They do make some assessments by the type of pain too - a constant pain is more likely to be from something serious than a crampy pain; a pain that makes the patient involuntarily "guard" their stomach when it is pressed is more likely to be serious than when there is no guarding.

Perhaps people who find it hard to assess whether pain is indicating something serious or not may find it helps to learn these signs - the sort of signs they look for at A&E?

Thank you for this post and previous info, these have really helped me in looking for the signs that might indicate something that needs action.

 

[UnXmas]

Check out these web pages:

http://www.patient.co.uk/doctor/acute-abdomen


http://www.patient.co.uk/doctor/abdominal-pain