Medical Ptsd And Doctors - How To Disclose

[shimmerz]

I was in the hospital prior to Christmas. I disclosed to them that I had PTSD and that I did not feel pain (true story). Due to the nature of my illness this was important information as they were checking every 2 hours as to the nature of my pain and how severe it was on a scale of 1-10. I had no idea how to answer them. What I did notice was that I moaned and groaned a ton, clutched different parts of my abdomen etc. It seems I have a bit of an issue deciphering what pain is although my somatic responses do tell me I am in pain.

So I have to go back to my doctor on Friday. My anxiety has been ramping up like crazy. In the hospital I was on the receiving end of dismissal, humiliation and out and out sadistic behaviour because the staff did not believe me. It is a long story but it was horrendous. Now, back to seeing the doctor. I am still in 'pain' and I know this because whenever I bend over or move my arms to shovel or vacuum etc, I will go through these moaning and groaning episodes for hours afterwards. The doctor I am going to see does not at all believe that I do not feel pain.

My oldest son, who suggested that I was 'crazy' for not feeling pain, suggested while I was in the hospital that I just say, pain is in my pancreas and it is an 8. This sounds like a simple solution but they ask me if it is a stabbing pain, a shooting pain, if the pain radiates to the back etc etc etc. I have no idea how to answer these questions.

It is obvious I am not better, especially given today when I ramped up my physical activity from a zero to say 1 hour scattered throughout the day. I have been groaning all day and can barely move. No pain though. I obviously won't be able to talk this guy into my experience with pain as I know it is something he refuses to even consider because it isn't a 'known' thing. He did ask me in the hospital why I didn't feel pain and I did give him the reason which he poo-poo'd me with quite soundly.

Any ideas for me? I have no idea whether I still have raging pancreatitis or not and it seems dangerous to me.

 

[Sandstone]

There is a condition called Congenital Analgesia, but I don't think you are describing that. The groaning suggests that you do feel the physical pain but some process blocks it out before you register it.

You might refer your doc to the dissociative Experiences Scale, which has question precisely on this. " Some people find that they sometimes are able to ignore pain." It's clearly recognised as a diagnostic sign.

I experience this on a much lower level - until I check round my body there will almost always be some part of it that is in discomfort or actual pain when I lay in bed, but I'm simply not aware of it until I focus on describing the sensations in each part

 

[GWhizz]

Wow that's a pretty bizarre phenomenon you're going through. I would say I'm a bit desensitized to or not in tune with pain. I can imagine it's really though for you though.

I am a hepatobiliary nurse so I am sorry you're experiencing this - pancreatitis is awful! Just wondering how you got diagnosed? Obviously your blood amylase levels etc would have been elevated. But usually the 1st sign is epigastric pain, specifically when eating, then nausea/vomiting.

Hope you're okay though

 

[falling_wave]

I think you can tell them that you had a trauma which made it hard to express pain to other people. Tell them that you feel uncomfortable with moaning and groaning but that you don't know how to describe it to them. Ask them how they could help you to learn this.

I think biofeedback could be really helpful. You get hooked up to electrodes little stickers they put on your chest and head which can sense pain through heart rate, blood pressure, and brain activity. They the teach you to target that pain and to use breathing visualization to relax. You can see on the monitor when pain is up and the changes as you work through it. It sounds like somatic therapy might be helpful too. It sounds like mote than not feeling pain you need to learn about it and how go describe it.

 

[ghotiff]

I'm going to try and give input to the immediate problem of what to say to your doctor in your next appointment.

To let you know where I'm biased from...I definitely feel pain, but I'm aware I feel it differently (or less?) than others and long term doctors have independently remarked on it.

To say you "don't" feel pain is likely too much for this doctor to take in. So I would change it to something "less" but that explains your difficulties describing pain. Maybe....

"I have severe diagnosed PTSD from on-going childhood trauma and one of my symptoms is an inability to focus on and describe physical pain sensations. As a result I need my diagnosis to be based on quantitative symptoms that you can measure. I appreciate that this is not typical but I would very much appreciate your help with this. Due to my PTSD I will have difficulty explaining this further".

Maybe if you put this (or something similar) on a card and carry it with you. You could use the principle of "authority" and state that one of your supporters wrote this out for you. That way he won't argue with you, but want to argue with me. I'm more than happy to take him on for you :)
I fight better for others than I do for myself.

Hope that idea helps somehow.

 

[shimmerz]

@GWhizz, yes, it is bizarre. Very dangerous as well I have come to learn.

Just wondering how you got diagnosed?

I think I have had this for longer than I thought. I was doubling over for a while prior to this episode but thinking it was a trauma-esq somatic response. Apparently it was not. It hit me early one morning. I had noticed I was needing to pee constantly but couldn't, and I noticed I was fidgeting the day before. The morning it hit I was consumed by a pain. I said to my SO at the time 'OMG this is so painful' and then dropped to the floor. He had to pick me up. After that I went delirious and remember absolutely nothing. It was diagnosed in the USA (California). I was taken to the hospital two days later. They diagnosed me based on my blood amylase levels and sent me home with pain pills. One and a half days later I was flying back to Canada.

The hospital in Canada could not identify raised blood amylase levels. They actually didn't believe I had a problem because I didn't seem to be in pain. They were going to send me home.

 

[Chava]

So I have to go back to my doctor on Friday. My Link Removed has been ramping up like crazy. In the hospital I was on the receiving end of dismissal, humiliation and out and out sadistic behaviour because the staff did not believe me. It is a long story but it was horrendous. Now, back to seeing the doctor. I am still in 'pain' and I know this because whenever I bend over or move my arms to shovel or vacuum etc, I will go through these moaning and groaning episodes for hours afterwards. The doctor I am going to see does not at all believe that I do not feel pain.

Pain is pretty complicated. I can't begin to explain it but I believe your experience. This situation with the hospital sounds terrible. Even with good doctors and ones who tend to listen and not treat me like a total head case, I feel very foggy and exhausted after appointments sometimes. This would probably put me over the edge.

Have you seen a neurologist? Your story makes sense, but maybe for the dumbshit doctors you need more tangible info (like a neurologist could probably affirm your lack of certain sensations pretty easily and then you'd have this info from another high-up-there type of person) ??? I feel that with my pain sometimes, that it's dismissed based on my own experience of it and I need info from other doctors. I started crying at one appointment when the doctor sort of snotty-like asked where I come up with some of my stuff and I told her it was what the physical therapist had told me. THEN all of the sudden it was credible. f*ck that, you know? Some doctors can also be very arrogant.

If you aren't feeling well or your body is giving you other signs that you are not well, go back to the hospital! It's their job to figure it out. I've gotten better at this without feeling ashamed or burdensome or whatever. I have to advocate for myself. It's been hugely stressful but it's been worth it. I hope you're okay...

 

[joeylittle]

The groaning suggests that you do feel the physical pain but some process blocks it out before you register it. You might refer your doc to the dissociative Experiences Scale, which has question precisely on this. " Some people find that they sometimes are able to ignore pain." It's clearly recognised as a diagnostic sign.

Just wanted to say I think @stenni has a good point here. And going along with what @ghotiff said about doctors and how they reject all or nothing statements - instead of getting derailed with the question of whether or not you feel pain, you could communicate that you "tune pain out" as a result of abuse in your past, so to you it is registering as "nothing much" - except you can tell there's something going on because you are having pain responses.

I think it helps that the pancreatitis was already diagnosed; even though your amylase levels had dropped when you were tested again.

Report all the other symptoms you can - really write them out - and ask for tests.

(I feel pain but I have a very high pain threshold, I have discovered. When I was recovering after surgery I "upgraded" my numbers automatically, in my best guess as to what would be more "normal".)

 

[sun seeker]

Wow that's a pretty bizarre phenomenon you're going through.

I have a friend with this same problem. I think it can be a result of severe abuse - not that this is anything like a scientific study but it would make sense. She has had infections that go unnoticed until she gets a fever. At the same time, she will have somatic pain associated with body memories, so it doesn't seem consistent.

No good ideas on what to do except fire your doctor I'm afraid.

 

[Friday]

The other thing to know, for doctor bias, is that most addicts who are drug seeking in clinics and hospitals? Claim to have either "high pain tolerance" or "don't feel pain".

After even a single ER rotation (busy hospitals have dozens of frequent fliers each night, much less years practicing), docs pretty much stop listening as soon as someone goes there. Okay, yeah, sure, whatever... "You got PTSD from having to buy the store brand cereal, and were just so embarrassed you had to die" kind of FFS. If one more person tries to tell me about their high pain tolerance? Just shoot me. There are drug dealers SOCMOB everywhere you look... Stop wasting my time!

The way around this NOooooooooOOOOOoooooooooooooo! response? Just like here: pertinent piece first: (I have PTSD from criterion A event, then had a meltown in the store over not being able to buy the name brand).... Translating into something along the lines of @ghotiff & others have said. If you don't want to disclose PTSD? Sensory Processing Disorder is something most docs understand from dealing with ADHD, Autism Spectrum Disorder, Gifted, & SPD kids, (and adults). Don't even need to claim a diagnosis you don't have. Simply say "I have sensory issues." Which is 100% true. It's a very common symptom from several neurological disorders, and it's something docs and nurses are both trained to work around. Once they start probing the edges of them (to work around) you say that pain translates weird. You don't leave your hand on a hot burner, and can be posturing (curled up in pain), but are unable to describe the sensation.

 

[ghotiff]

The other thing to know, for doctor bias, is that most addicts who are drug seeking in clinics and hospitals? Claim to have either "high pain tolerance" or "don't feel pain".

Omg. Thank you so much for this information. I have only been in hospitals for my kids (and miscarriage) but I anwsered everything wrong - this might have been one of my mistakes, saying something that could have been misinterpreted as this.

 

[shimmerz]

It was in the hospital in Canada, after two days of buckling over, moaning and groaning, grasping my abdomen that I was actually able to distinguish that these were pain responses. I had been so focused on these being somatic responses to trauma that it took me a bit to reframe them. It was then that I realized that I had been in 'pain' for quite some time but most likely was suffering from pancreatitis the whole time. Scary. Didn't matter what I said, they assumed it didn't start until the day I felt the pain.

I gave birth to three children without a hint of pain. I actually had to put a face cloth over my head and really concentrate so that I could feel my contractions. I was almost put in the psyche ward because I insisted that one of my children was crowning but the nurse insisted I could not possibly be. You see, I don't even know how to fake it. I didn't clutch my abdomen during the births. This pancreatitis must have been pretty severe as I have never reacted to anything like it before. I believe it is still a problem, which is why I am not recovering, but they won't test for it because I am not responding like others would.

@FridayJones, what you say makes sense given my experience. They treated me like dirt in the hospital. One nurse even put an IV into me with a narrative of how she couldn't get to the vein so she was going to do it this way, but it was really going to hurt. Then she took it out 'slowly' she said, and it was going to hurt and then repeated the process. It took her 10 minutes to get the IV in. No exaggeration. I didn't realize until the next day that she had been messing with my head. I flipped out when I realized it. Completely melted down. That, along with the other things going on in my life was just too much for me. I was let out of the hospital before I should have been because I felt like I was in danger. I pretended to eat and be okay so they would release me.

I get the 'I don't feel any pain' problem here from the doctor's perspective, but if I felt some pain in my life I would be able to describe to them how it felt. I can't. I wouldn't be able to tell someone what a 'shooting' pain was if my life depended on it (that is clear to me now). So in the meanwhile, I have to figure out how to get this doctor to hear me because I feel like the chances are high that my pancreas is still eating itself inside of me while medical staff believes that I am some sort of drug addict. I would think that if I was there would be tests that could be run, etc. Arrrrgggghhhh!