How do you measure pain?

[johnb]

I've also described to my PM the amount of movement I can do before pain comes on and what kinds of movement. I've also described pain at rest vs. pain while doing things. The 10 pt scale doesn't really encompass our experiences. Then there are different types of pain. Stabbing, burning, throbbing, excrutiating interupting your thoughts types of pain.

I thought I knew 10 pain but I had to adjust my personal scale immediately after the dynesys was removed. That was the worst pain I'd ever felt for about 2 weeks. I went back to the emergency room 2 times as my heart rate was high and I couldn't sleep. I suppose the pain was pushing my anxiety that something wasn't right.

John

[Maria]

Thinking of offing myself...
edit to add that's not what I feel now but what I had felt when the pain was at this level all the time due to failed back surgery in '92

0 is I want to run around and do and undo until I'm ready to drop into the sack and sleep the sleep of the dead..
1 is who cares, I can still run around and do and undo..
2 is still running around but very minor annoyances
3 is starting to notice this sh*t is bugging me more than I like
4 is dang stop this nonsense
5 is wtf
6 is where are the med
7 is oh no I didn't
8 is wahhh
9 is wahhhhhhhhhhhhhhhhhhh
10 is FFFFFFFFF........K!!!!!!!!
and the rest~ (hope I've not offended anyone tho that's my truth)

[Terry Allen Blackburn]

Originally Posted by Maria

Thinking of offing myself...

I have definitely been there. Not a good place to be, as it also represents hopelessness.

Terry Newton

[Maria]

and that's exactly how I felt. Thankfully I feel far from that now and hope to stay this way

[Katie]

Ain't that the truth...maybe we should have a poll about that....how many have or have not felt that way at some point.

My last visit with a 'specialist' ended when he said that "pain is not a reason for surgery".

Reeeeeeally! What the heck are the requirements? Pain isn't glamorous enough for the hospital administration, my PM doc said one day. One poor fellow tried to kill himself with a cross bow, she said, which finally got him enough attention to get him some help.

Why does it have to go so far?

[Magrego]

Hey guys,

I too have problems with my pain scale. All my life I have injured myself. Fallen of car roofs, stairs, fighting , rugby ect. I was a small male that I must admit thought was almost invincible. Some of the thing I have done I am lucky to be alive.

Pain has never been an issue for me before sacroillititis. I think the only pain that has compared was when glass severed my main nerve and minor arteries and over 8 tendons in my arm.

The biggest pain was not when it happened but 1-3 months after the injury when the nerves were trying to grow back. I still have limited feeling.

Now I was treated with morphine ect and people showed they cared for me because they could see I was in pain. To be honest I never needed the support as much as I do now for sacroillitis.

Whole point of my story is I rate sacroillitis 9 or 10 ( I may have other disease but there still testing.) I rate my arm a 10 when the nerves were growing back.

Now even though the pain rating is Higher than sacroillitis I would prefer to have my arm sliced open and almost cut off lol. Sorry for the ugly description but yes my muscles were hanging out of my arm. I could also open and close my hand as the muscle was sucking in and out of my arm. Was ridiculously gory 2 police officers had to leave the room lmao.

Anyway I just wanted to show pain levels mean shit too most of you. It's the fact it takes away your life. I am not saying pain isn't bad and may is actually the very reason we complain. But it is not why we complain it is because I miss being able to do the things we enjoy. And people keep saying there is nothing wrong or they treat you like you are over reacting.

Not to be pessimistic but most people are not understanding. I call most of these people one eyed. There is a big difference between pain that goes away and pain that stays forever.

When I had my knee reconstruction. When my knee crunched it was a 7 . Tore acl ligaments .

I remember when I was a kid I said" I hope i don't ever kick my toe again"
if I knew about sacroillitis I would have peed my pants lol.

[Magrego]

Well I re read my message was a bit all over the place. I think what I have learnt is pain rating is very subjective. I don't think you can rate pain levels unless you study other illness and disease to give accurate readings. I gave a rating 10 out if 10 for nerve regrowth from a severed arm. This 10 out of 10 pain would only occur for 1 split second or a second. It was a pain that was shooting, electrical vault like lightening pain. It would come every hour or so. I had other pain that throbbed etc. But this particular nerve pain through my arm was bad and I am sure many others have experienced this to a degree where it would last more than a second. Also the occurrence could be every minute instead of every hour.

I cannot imagine living with that sort of pain continuously, it would be impossible for me to fully understand their pain without feeling a small amount myself. I bet half the people in the world would rate it 20/10 if it never stopped.

So I believe pain scaling Is a terrible system to assess. I am no doctor but this method seems a inaccurate and totally subjective and personal. There must be other ways to assess pain.

I thought that possibly understanding other people's pain could help you assess the level of your own pain. But again every persons particular case is very different. so I guess subjective opinions is the only way but to make these more accurate a scale from 1 to 10 is too simple for such a complex issue. Words and sounds I believe are better at rating pain than a number. But the rating should not be as simple as writing a few words. It needs to be written and documented when you are feeling the worste and when your feeling your best. Pain varies in my situation so I'm not sure about others.

Anyway just wanted to say my 2 cents after the crap I went through trying to explain my pain. I learnt not bothering to explain helps me. Not only is pain hard to rate it's hard to explain which I believed progresses illness from the inappropriate comments from doctors related to pain. Some doctors even told me to lift weights there is nothing wrong. Lol I had sacro and possible AS. Lol if I had of listened to half the docs comments about pain I am sure I would be far worse.

If you are in serious need of assistance and you are not getting the assistance why not grab a cross bow lol

[Sick & tired]

Originally Posted by Terry Allen Blackburn

I have definitely been there. Not a good place to be, as it also represents hopelessness.

Terry Newton

I couldn't agree with u more ! Just spent a week in hospital. My pain level was a 20, yes even though that isn't even on the scale, I was in that much pain! Taking pain pills I had, tylenol3's, flexeril, ultraset, and double the dose prescribed. Back history for me, I have ms dx13yrsago...weak side is on the left. back problems are on the right started 1yr 8 mos ago.and at the first of 2113went down hill....
In January of this year started having having pain and muscle spasms, the more I did the worse it got, then in April my lower back started in being an everyday occurrence ! Had to use my wheeled walker to get around in the house, when for the last 10 plus years I had used a forearm crutch to walk with and keep my balance with the weakness and drop foot my ms caused on left side. Doctor had did ex rays and said arthrtis and lumbar region getting pretty wore out, sent me to pain management clinic received 3 steroid injections about a month apart. In the mean time reg doc put me on 25 then 50 mcmg phentoynal pain patch to control pain. I could not get into any position for the pain to stop. Walking hurt, laying down hurt, tried ice and cold packs, if I could lean forward while sitting or standing and get in a certain place it would take the pressure off the nerve and laying as curled up as a big woman can get would help too. Can't live life quite like that.also have been giving 2 or 3 shots of steroids&dose packs of steroids and take 1 10 mg of it daily .
The pain started right in the middle of my lower back felt like someone was twisting with a wrench, then spread down my right butt area around my hip down the back and front of my leg right back side of calf, some days it was tight and numb the worst when the muscle spasms started. I had my extra 4 th steroid injection at the pain clinic on July 5 had some relief for about a week then all hell just broke loose, had to have help to do everything, had been using a chair to sit to prepaid dinner to put dishes away standing getting in and out of the shower ect was excruciating ! The 4 th injection was pointed more towards the nnerve bundle.. Ok end of this long story was advised by my primary physician to go to Er, the did MRI examined me gave me deluded and found my right foot had drop foot admitted me.
Then did a ct scan same day. Gave me Valium for muscle cramps, told me only get out of bed with assistance. Then was told I had something very abnormal outside of l5 which was herniated. It was either a cyst infection or calcification something but the thought the should biopsy it, then the said it was my ms flailing up, so they gave me a 3day solumedrol IV drip, 4docs in 2days said yep lets. Biopsy and the afternoon of the second day the said nope just appears to b air your ms is causing all the pain,,,! Ok at this point I am atWTF?
Then 2docs including my pain doc said well why is their air in her back, u have loaded her up on steroids her pain is still 8 or 9 lets biopsy, then yesterday the air was tuned back into a cyst and I was then told it was insignificate and wouldn't be the cause of the pain. But 2 or 3 of my lumbar discs were bone on bone and surgery would be a50-50 chance of fixing the problem, I DIDN'T WANT OR COME INTO THE HOSPITAL FOR SURGERY I wanted to be rid of the pain so I could get mor of my normal life back...what did I get? Told this pain is more of my ms showing its ugly head,note: never had pain just spacticty, and trouble walkin, urinary problems cloudy thinking ect. All on left side , to now having unbearable "they shoot horses" pain in right back, hip, leg calf pain?? Strong muscle spasms in right hip, numbness pins and needles going over the top of my thigh I can't rub out, when th docs lifted my right leg it would make me cry, when they lifted my left leg so high same
Thing same if the lifted my arms when I lift my right one so high the back starts to tighten up. No one addressed all the crackling and popping in that area I eas havin except the nurses. When it pops it goes like pop hurt pop hurt ect, like when people crack their nucles except this is pain.. So I have an appt with my pain magenta doc tomorrow, but it is so frustrating to spend 1 week in the hospital with all most as much pain as I started with no conclusion..and a question why didn't they do a biopsy on something they called a cyst then said it was an air pocket but yesterday was back to an cyst? And when or how do they help me or fix the problem? Hopeless in detroit metro area. Any suggestions before I see my pain doc tmmrw?

[Maria]

It takes way more than a week in the hospital to diagnose exactly what is causing the pain(s) and sometimes if enough tests are done and they're the right tests to rule out things and rule in others or exclude/include you may get lucky.

For your PM visit I'd have your sequence of events listed clearly and succinctly. Hopefully at least you can get some adequate pain management to hold you over until the best diagnosis and treatment plan is determined.

My spine journey has been going on since around 1981. I still have problems but not to the horrendous extent I did before or at least I am medicated and have adjusted to what I live with and without.

Then again I've not had an MRI since 2006 so maybe I have more going on than I realize but at least it feels well managed.

Talking with Mark (mmglobal) here may be very helpful to you as he's a spine patient advocate and many of us have utilized his services and been very glad we did!

Please update us with how things progress for you. I also recommend if surgery is recommended to get more than one opinion (at least 2 and maybe 3 or more). Sometimes you know you really like the one person you're seeing and you may not feel like getting other opinions however I think it's a good thing whenever surgery of any certain magnitude is recommended.

Good luck~ Maria

[jsewell]

I am so sorry you went through with all that and came out the same way you went in.
I agree with Maria, get it all written down in order of what went on in the hospital.
Explain what was tried for your pain and did not work in order as well as i am sure she said.
GEt that pain under control, hopefully this pain doc will be excellent and will be able to do this for you.
Then start on getting opinions on what would best help you if regarding surgery.
I recently was all set to have a certain type of anterior fusion on my thoracic spine as the posterior failed miserably last Aug/sept. My nerves got involved with screws which were pulling out and i was in bed or a wheelchair for 6 weeks in horrible pain near a 10 waiting for surgery to remove all the offending hardwear.
Well i went for a second opinion and a whole different type of surgery was recommended. It made much more sense to me. Back to the original doc and presented this to him,, now he is presenting my case to a group of spine surgeons that meet every 2 weeks and next week i will find out what they came up with. Kind of like getting a bunch of opinions without all the running around. So my point is really get at least a second opinion.
Good luck with this and now that we are thinking about you, please let us know the outcome.
You could also start your own thread so it could get more attention
Judy

[theBadCormorant]

I think pain is a very difficult thing to measure, and during my recent problems I tried to keep a daily note of pain levels, then the following happened and it made me think..

There was one day a month or so ago when I was in astonishing amounts of pain, buttock and calf pain due to S1 nerve being squashed by slipped disc at the Lumbosacral junction. I was putting this level of pain down as 7 or 8. Anyway it was a nice day and I hobbled out into the garden to lie in the sun (was only capable of going about 10 yards on my feet before the pain would win and compel lying down) And just typical of how my luck was going, I stood on a Bumble Bee and it stung the sole of my foot on my good leg. The wife burst out laughing and I could not help but join in, how funny, how utterly ridiculous but still very funny.

Anyway, as I lay there with a bee sting on my left foot, and nerve pain affecting my calf and buttock of my right leg, it was interesting to compare the pain levels; I would say the Bee sting was equal in magnitude to the Calf and Buttock pain. Now I wouldn't describe a Bee or Wasp sting as all that painful (may be a 5 tops ?), so was my Calf pain not really that bad ? So presumably any measurement has to be "pain X duration".

I guess a Bee sting that could arrive several times a day and persist for many hours rather that a few minutes, would get a much higher score than the actual pain merits.