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How do you put a number (1-10) on your pain?
#263139 01/07/14 04:56 PM
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Sean O Offline OP
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At my last rheumatologist visit she indicated that, notwithstanding the damage on the axial spine that showed on my MRI and my frequent thoracic back pain, it was not the time to go to a biologic yet.

My understanding is that you go to a biologic when you are non-responsive or insufficiently controlled to NSAIDS and possibly DMARDS as well. I am not sure what that really means for me and am concerned that I may be playing down the pain I have when I fill out the BASDAI index for my rheumy.

How bad does it have to get before you go to a biologic? I am concerned that there will be continuing degenration of of my axial spine especially my neck if we rely only on NSAIDS. Also, I am pretty tired of chronic thoracic pain (in precisely the spot where the MRI showed degeneration).

I really don't know how to fill out the BASDAI index when it comes to pain. I am in pain right now but I don't know whether to describe it as a 5 or 7 or 8 when I fill that form out and I think the rheumy is putty most of her emphasis on how i self report pain on the questionnaire.

I realize that she is the one to answer most of these questions, but I have a question for you: how do you put a random number on pain? Yes, it would be a 10 if I were scalded with boiling water and a 2 if it was just a little ache but what about the real daily pain that we have?


Male, mid 50s, Dx Reactive Arthritis 1981. AS+ 1991, HLA B27+, Tylenol 3 PRN for flares. Considering a biologic. SI and thoracic involvement and costochondritis. Many bouts of uveitis. Some bowel issues, anemia. Inflammation of the joints in hands and feet.
Re: How do you put a number (1-10) on your pain?
Sean O #263142 01/07/14 05:36 PM
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I have often wondered the same question regarding these pain scores - pain is a difficult thing to put a number on, it can change with time, mood, etc.

In the UK, if you pain scores are still above 4 on these questionnaires, that is usually sufficient to be put on biological drugs. I assume you are in the US so I can't comment on your system. But it doesn't sound like you think the NSAIDS are really controlling your pain sufficiently. I would definitely have these conversations with your Rheumy and say you think you are ready to try anti tnf, especially in light of the structural progression.

One final point, the evidence of anti-tnf preventing structural progression of the spine and SI joints is not particularly convincing at the moment although evidence is starting to come in showing that over the longer term (fours years plus on anti-tnf) they do have an effect at slowing progression. Given you already have some progression, starting asap sounds like a good decision smile

Re: How do you put a number (1-10) on your pain?
Sean O #263145 01/07/14 06:33 PM
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Sean, this is the Mankowski pain scale. I know it's been talked about a few times on this forum. It's what I use to describe my pain to my rheumy, it definitely works for me. Hope it helps!

0 - Pain Free

1 - Very minor annoyance - occasional minor twinges. No medication needed.

2 - Minor Annoyance - occasional strong twinges. No medication needed.

3 - Annoying enough to be distracting. Mild painkillers take care of it. (Aspirin, Ibuprofen.)

4 - Can be ignored if you are really involved in your work, but still distracting. Mild painkillers remove pain for 3-4 hours.

5 - Can't be ignored for more than 30 minutes. Mild painkillers ameliorate pain for 3-4 hours.

6 - Can't be ignored for any length of time, but you can still go to work and participate in social activities. Stronger painkillers (Codeine, narcotics) reduce pain for 3-4 hours.

7 - Makes it difficult to concentrate, interferes with sleep. You can still function with effort. Stronger painkillers are only partially effective.

8 - Physical activity severely limited. You can read and converse with effort. Nausea and dizziness set in as factors of pain.

9 - Unable to speak. Crying out or moaning uncontrollably - near delirium.

10 - Unconscious. Pain makes you pass out.



Beth
Re: How do you put a number (1-10) on your pain?
Sean O #263147 01/07/14 06:37 PM
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BTW, if you already have some damage, I would think your rheumy would want to get you on biologics sooner rather than later! But I don't know how the system works there in Canada....


Beth
Re: How do you put a number (1-10) on your pain?
Sean O #263148 01/07/14 06:53 PM
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Sean O Offline OP
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Thanks Will and Beth. You have both been really helpful. I think, according to the Mankowski scale, what I have been calling a 4 is really a 6 or a 7.

In terms of prescribing an anti-TNF, the guidelines in Canada are that they are to be used when you are not being controlled properly by NSAIDS and perhaps a DMARD. There are more hurdles if you want the provincial health care plan to pay for the medication, but I have private supplemental drug coverage and they are willing to cover any amount (past a deductible of $3000). The deductible also includes any amount paid for any drug so my celebrex count towards it.

I am looking forward to my next rheumy appointment.


Male, mid 50s, Dx Reactive Arthritis 1981. AS+ 1991, HLA B27+, Tylenol 3 PRN for flares. Considering a biologic. SI and thoracic involvement and costochondritis. Many bouts of uveitis. Some bowel issues, anemia. Inflammation of the joints in hands and feet.
Re: How do you put a number (1-10) on your pain?
Sean O #263149 01/07/14 07:01 PM
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You're welcome Sean! And yes, I was doing the same, I think a lot of us who have chronic pain call out a lower number....until you read this scale.

Good luck on your next appointment!


Beth
Re: How do you put a number (1-10) on your pain?
Sean O #263157 01/07/14 10:52 PM
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I especially hate those unhelpful pain charts with smiley faces. One person's four can easily be another person's eight. I'm a solid seven, occasionally an eight, unmedicated. If someone's never experienced real, unyielding pain, that probably doesn't sound as horrible as it is. Thankfully, my current rheumy doesn't ask me to rate mine by numbers. I hope you can get on a biologic soon!


Amy

27 years old
AS diagnosis 2013; neck pain for seven or eight years, and spreading multiple-joint pain for about two years
Also: Fibromyalgia, Hashimoto's, hypoglycemia, Raynaud's phenomenon
Meds: Remicade, Norco (10-325 mg), Gabapentin, allergy shots, Prozac, Synthroid (25-50 mcg)
Re: How do you put a number (1-10) on your pain?
Sean O #263160 01/07/14 11:41 PM
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I'm another one who used to totally underreport pain. I do find the Mankowski scale is the one that makes most sense to me. on that, I am seldom below a 6 (unless I am on steroids) with frequent peaks at 7 and occasionally bordering on 8.


Cauda equina type neurogenic bladder problems. Coeliac disease. Sicca syndrome. Ataxic gait and use crutches. Non-specific gut problems. Current treatment: Low dose naltrexone, low starch diet (Guts shredded by NSAIDs. Previously diclofenac worked well, not eligible for anti-tnfs, hypersensitivity to SSZ). Also short bursts of pred for bad flares
Re: How do you put a number (1-10) on your pain?
Sean O #263162 01/08/14 12:16 AM
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Beth, thank you for posting the Mankowski pain scale- I'm going to print it out and take it with me whenever I go to the doctor now! It sure seems more objective than that stupid 'smiley face' one that's posted on the wall in most dr's offices (in the US, at least.....).

I think some DRs forget that those of us with chronic, near-constant pain have a higher 'baseline' than average- but having specific descriptions to accompany the numeric scale make this a much more meaningful measure.

Re: How do you put a number (1-10) on your pain?
Sean O #263166 01/08/14 01:55 AM
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For years I always gave the number of a 1 or 2. While I always am in pain I didn't want to sound like a wuss. About a year ago my rheumy asked more direct questions about my pain. He asked if it ever woke me up and I told him about every other night. That is when I learned more about the pain scale shown above. Come to find out I have been between a 7 and 8 for the last 10 years. I am 52 now, been in some kind of pain for almost 30 years, never complained to any doctors but finally my sisters (who are doctors) told me to go to a rheumy and I was diagnosed with advanced AS and put on weekly Humira shots. Those shots sure helped with my fatigue. Both of my sisters and I all have been diagnosed with AS. Our Rheumy is fascinated when we go see him.

Here I thought it was just part of getting old.

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