I would like to show you a survey I did using this Mankoski Pain Scale to show the average patients daily pain with Ankylosing Spondylitis.
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.
“Andrea Mankoski devised this pain scale to help describe the subjective experience of pain in more concrete terms to her doctors and family.”
Out of the one hundred people I asked to share their daily levels majority rule was #7 with #6 being second place and #8 in third. I was at a seven when I did this survey. I have been told many times I cry in my sleep. Thank goodness I am a heavy sleeper!
When I posted this survey and listened to everyone rate their pain and share the frustrations they are dealt…it was humbling. It made me stop and really question my place on this scale. I know what my pain feels like and I know it’s real but comparing it to others just seems impossible. So I’m not sure how any pain scale can be truly effective. If you haven’t felt what I feel you will never be able to understand my pain. So how do we relate our feelings to others that can not understand at no felt of their own? I just don’t know if we can.
I suppose all we really can do is focus on taking care of ourselves even if no one else understands. If the doctor tells me my pain should be better with this treatment and it’s worse then he may just have to accept the fact that he’s wrong because I know I’m NOT. I know that pain is still there. We all are effected differently by A.S. and no one pain scale at any doctor’s office can encompass all we feel. No one description of this disease can tell everyone’s story.
I’m not going to put myself in this bubble pain chart anymore. When my doc asks how I’m doing I tell them my elbows are great. Seriously that is the only part of me not affected by A.S. that doesn’t hurt everyday (knocking on wood and throwing salt everywhere). I could go through the list of pains I deal with and tell her my back is an 8 my neck is a 10 my hands are a 6…really she doesn’t care. Honestly she wants to know if I’ve improved or dramatically worsened. So I keep it light when I can.
I no longer try to explain my pain to others. I ask for understanding even though they can’t feel my pain that they respect that I can feel it and I may need a little extra sometimes. I just appreciate the benefit of the doubt that even though they can’t see or feel my pain they respect me enough to believe me.
I focus on the positive even if it is just elbows!