This thread bit me
 

I can say that when reading this, I can relate at this time so very much. Dahlek and I are both battling a raging immune system. Mine was under control for awhile and now seems to be on crawling out of the net we've had it confined in over the last few years. I agree with Wings, sometimes the medicines we've used to control the immune system turn around and bite us. Mine is biting me right now. We tried to back off from some of it in order to help with the breaking bone situation and it made other problems appear. More nerve pain, more joint pain, swelling, etc.

And I found out at the doctor's appointment this week that my doctor actually did not believe me when I told him I was in unbearable pain with my back and legs. When the first xrays of the sacrum did not show any thing, he thought I was exaggerating the pain caused by the Rheumatoid Arthritis. And he told me it was probably a strain and to go home and use heat and it would be better in a couple of weeks. And a week later when I called and told him that I was no better that I was actually worse, he sent me 15 pain pills. All of you here know that I do not take pain pills. I took these.

At the end of that week, I couldn't get out of the bed. Not because of the pills, but because my back was broken. I saw this same doctor on Monday. By that time I had been in the hospital since Sat. morning. He asked me what I was doing in the hospital. I told him because that is where the ambulance brought me because I couldn't get out of my bed. I then had to tell him that the emergency room doctor had diagnosed me with a stress fracture in my sacrum. He acted like it couldn't possibly be and I told him to go see the CT scan they did when the ambulance brought me in. He said that his xrays hadn't found it and I told him they were wrong. He said at that point "I'll get down to the bottom of this!". Then the next morning he came in and said, you have a major stress fracture in the sacrum. You all know the rest of the story.

When I saw him for the follow up after release from the hospital. He apologized to me and told me that he honestly didn't believe me when I told him I was in pain. He said, "You were so calm. I didn't think there could possibly be significant pain. But now I wonder how you were even walking." I told him that when I say I'm in Pain, Believe Me I'm in Pain!! I don't scream, I don't cry. But I don't lie either. Our relationship is new, I have only had him since Nov. But I think he will believe me when I say I'm in pain the next time.

But is this a sign of the time? Doctor's think we are lying or exaggerating? It shouldn't have to be like this. I had to be carried to the hospital in an ambulance, tests were done, other doctors consulted and I was suffering extreme pain. All of this before one doctor believed there was significant pain.

Billye

Billye,

But the doctor followed through, showed curiosity, a commitment to you and to personal excellence, and apologized. I think he's a keeper.

Fractures hurt incredibly. I hope you're resting comfortably now.

David

Hi jarrett622

On reading your posting above I was just on the point of agreeing with your sentiments entirely when I realised you have (to my mind) contradicted yourself with the above quoted extract.
Whilst no one should ever judge a persons pain – and boy just like you have I had to put up with a lot of that – at the same time no pain should ever be gauged by using a so called pain scale. Your idea of 1-10 is almost certainly not mine because you may faint on my 9 or I may faint on your 7. Some folk here in the past have quoted the Mankoski pain scale http://shsskip.swan.ac.uk/Informatio...in%20Scale.htm which perhaps we could all embrace but I am not too happy with that idea. Many people will still exaggerate their pain while others will try to play theirs down.

I have tried until I am blue in the face to get both my GP and current neurologist (not to mention relatives!) to accept the level of pain in my feet but none want to understand and on one recent occasion my neuro told me to remember there were others worse than me. Now that really made me feel good.

Tony[/QUOTE]

That's what I said. I didn't contradict myself at all. Everyones pain differers. And that's what I said. The scale is still a valid tool in that I may rate a pain at 6 and you may rate it at 2. What this tells the doctor is what we, as individuals, are feeling at that moment. This tells him what kind of treatment is needed and at what level.

I'm confused. I think you have lumped my post in with the person that responded to me. I don't see a contradiction in my post. Here's my post in it's entirety:

Part of the problem in defining pain is that we all feel pain differently. A type or level of pain that might drive me crazy may be barely felt by you. In nursing school they couldn't pound it in hard enough: Never ever judge a person's pain. If they say they're in pain, they are. As to how bad that pain is, falls under what I stated above; we all feel pain differently. The rating scale still in use, 1-10 usually, is actually very effective for rating pain. Chronic pain, too, can range from 1-10, varying on different days. What seems to befuddle doctors is when we have a pain that they can't point to a specific injury as a cause. For someone like me where they haven't found an underlying illness I'm sure they wonder how much of it is just in my head. I'd like to, for just one of my worse nights, let them experience the pain and discomfort I deal with. *Then* they would 'get' it. I hate it when the doctor acts like I'm simply imagining the pain. "Oh, you can't be feeling that. There's no physical reason for you to be feeling pain." Yeah, right. Tell it to my feet.

Sorry! - I still think “pain scales” are utterly useless. I have had PN for 15 years now and about ten years ago I reckoned my pain level at about 8 or 9. Were that to have been true I cannot imagine where I would be now – 120?

I really am supportive of your position and agree with all you say with this one exception. If I want my doctor or neuro or wife or neighbour to know how much pain I am in (especially when I look ok in every other way) I just tell them it is excruciating but life has to go on for as long as I can stand it. To tell them I gauge my pain as 9 ½ out of 10 means nothing to them or anyone else because if it gets worse next week and again the week after what rating do I tell them it is then?. This is how I see it but please accept that I respect your view whilst disagreeing with it.

David – thank you for your good wishes but I fear I am doing far from well. I must add that if I showed any relevant papers extracted from the internet to either my neuro or my GP they would quickly laugh and show me the door. They think I spend my life researching the net for a cure. I can’t change them (or their opinions) any more because the notes are handed from one to the other and I will find myself in the same situation with a new doc. I am indeed resigned to this disease now and rely on sleep, reading, my computer and TV to help me through the day. My wife believes she is the sickest of the two of us and after 44 years who am I to disagree – I only live with her?!!! That is however another problem altogether.

Leaving my troubles to one side David, I am happy to see that your pain still allows you your daily walks. Long may it be so.

I would just like to add that I feel humbled by Billye and others who are suffering multiple health problems. They are a wonderful example to us more fortunate ones especially when one considers that most of them also have very little family back up or domestic help. They are permanently in my thoughts and I read their postings with the constant hope of an improvement in their various troubles.

Tony

doctor a keeper
 

Yes David, I think he is a keeper. But I'm very afraid he will burn himself out. He is Russian trained and struggles to understand things in English. He goes everywhere he goes at high speed. You should see him when he's in the office and hospital. He is one I will keep, but he has to learn to trust me. I think he will now.

Tony, I thank you for your comments. :hug:

Billye

I read some studies when I was practicing that showed that the 1-10 pain scales were actually fairly good indicators. Obviously, no one can feel what another feels, but when patients rate their pain on a 1-10 scale, it correlates fairly well with functional levels, and it seems to be fairly consistant from day to day within one patient's reporting. I used to tell my patients to consider that 10 was pain so bad they would have to go to the emergency room. Now that I am a pain "victim", I feel like I can rate my pain 1-10 extremely consistantly -- for me-- of course, I have no idea how it compares to someone else. I guess that doesn't really matter -- what matters is that when it is bad enough -- for me --, I need pain meds! And when my pain is a 7, I quit wanting to talk to people, and when it is 8, I just want to lie still and think about breathing, and when it is 9, I start wishing I could go to heaven. When it is 3, I feel like I can take on the world! And if it stays at 7 or above very long, I want better pain meds!!!! I know exactly what each level feels like for me!

Honestly, I can't imagine what the doctors are thinking. Do they really think that someone wakes up in the morning and says to themselves, "Gee, I think I'll go to the doctor today and tell him that I am having a lot of pain even when I am not. After all, I'd just love to get some more of those drugs that make me constipated, nauseous, and dull-minded, give me a dry mouth and ruin my short term memory. And I'm just crazy about the way I get patronized and treated like I am some whining child. Yesiree, I think that's what I'll do today for fun!"