How do you measure pain?

[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.

[jsewell]

That sure was a bad luck day. I would have had to laugh as well. What else can you do in that situation. I am going to have surgery next monday and do dread the question of what level from 1-10 or 0-10 my pain level is. One time i just made up a bunch of numbers and told the nurse to use those for the next day instead of asking me. I always have to compare it to previous pain . It changes as I have a discography or last summer when my nerves were wrapping around a screw and i couldn't put my leg down for a second. so what event do i compare it to for next week!!
judy

[theBadCormorant]

Originally Posted by jsewell

That sure was a bad luck day. I would have had to laugh as well. What else can you do in that situation. I am going to have surgery next monday and do dread the question of what level from 1-10 or 0-10 my pain level is. One time i just made up a bunch of numbers and told the nurse to use those for the next day instead of asking me. I always have to compare it to previous pain . It changes as I have a discography or last summer when my nerves were wrapping around a screw and i couldn't put my leg down for a second. so what event do i compare it to for next week!!
judy

Best of luck with the operation next week, I will keep my fingers crossed for you. Can I ask why you have so many problems throughout your spine, is there one single cause or catalyst behind it all?

I nearly had surgery 5 years ago but the surgeon changed his mind at the last minute, at the time I couldn't make my mind up if I was happy or disappointed with getting sent home, but in hindsight I think he was right not to go ahead.

[jsewell]

My spine battle does not seem to have one factor in it, just a series of bad luck and maybe some weak bones thrown in there. I first had severe degeneration in my cervical spine which ended with weakness in my left arm when my surgeon said it was time for surgery after the conservative measures had been exhausted. that was fusion of C4 thru C7. Then i started having some pretty bad pain at certain times when i had run uphill for like an hour. At first rurning around stopped the pain , at the point of surgery maybe 2 years later i couldn't even make it through the flat grocery store without needing to leave in pain., I had discography to prove that some discs in thoracic area needed to be removed. It just went on from there, I have had lots of fractures, big and small, developed severe kyphosis in my spine that was effecting my lung capacity. I already had damage through the doc who did the thoracic surgery damaging the nerve that controls the diaphragm muscle so i didn't tolerate any more. Then i needed extensive surgery to repair a bad broken neck i suffered. I won't bore you with them all, i probably already did. But they are all kind of for different reasons and none were adr's as i already have osteopenia.

Anyway thank you for the thoughts for Monday, i am kind of excited and kind of scared, i have never had anterior surgery so it is all new to me!!!