What's Your Pain Number?

By Vickie Wilkerson

3 min read

One of the things when dealing with psoriatic arthritis is pain. Whether it is short-term pain while trying to do chores or long-term pain that debilitates you, it is all pain-related. When it comes to being seen by a doctor for your psoriatic arthritis, do you find it difficult to describe your level of pain? Does your doctor look at you like you are there for pain pills only? At some time or another, I am sure we have all gotten that look.

Do you hate those charts that show pain one through ten? I know I do. The closer your pain level is to ten, the more we are looked at like we cannot possibly experience that level of pain. Unless they live with the same disease we do, then there is no way they can experience what we go through in a day.

My story with psoriatic arthritis pain levels

I had to go see a new primary care doctor about a year ago. His nurse came in and ran through all the standard questions they ask when you're new. I stated to her that I have psoriatic arthritis with the majority of my pain being in my back.

She asked what my pain level was that day with my psoriatic arthritis. I told her an eight. She stops writing to hand me the scale of pain paper. She asks again what my pain level was. Again, I replied an eight.

She goes out and the doctor comes in. He starts going through my chart questioning things he wanted me to explain more. He says that it states I have psoriatic arthritis. I told him, "Yes, for the past five years." He turns to me stating that he knows nothing about psoriatic arthritis, but lost weight he could guarantee I wouldn't hurt so much.

I was insulted

Not only was that an insult to me, but he quickly dismissed my pain level as well. I never went back to see him again.

How many can say they have had a bad experience like that? The number of people who have been dismissed because of their pain level is staggering. I am a member of a social media group where this subject was brought up. The responses floored me. I can tell you that in that thread I was not the only one to never see a particular doctor again. So again, how do you rate your pain level with psoriatic arthritis?

Surprising responses to the pain scale level question

It made me feel better to know I am not the only one experiencing this. One lady replied that a doctor told her there was no way she could be at an eight in pain. His reasoning behind it? He said most people have to go to an emergency room when it's that high.

Another lady was told her pain couldn't be that high. Two thumb joints and eight spinal nerve ablations later, she begged to differ with that doctor's opinion. Another lady responded that she had laughed so the doctor didn't believe her either.

An eight you say?

Could you imagine being treated like your pain level cannot be that high? Oh wait, I'm sure you can. Living with psoriatic arthritis, we learned to deal with the pain. Some of us have gotten really good at saying nothing because we won't be believed anyway. Others of us have gotten really good at smiling through the pain.

I am in both those categories. I respond however I feel fits the situation at the time. Most of the time it is saying nothing because I know the doctor will not believe me. I have a high tolerance for pain. When the pain gets to the point I state that it's an eight then that is what I feel. I do not need to be dismissed like I'm a drug addict. I hate taking all the pills I have to take every day just to manage my conditions.

Who's with me? Are you tired of being dismissed as well? What is your pain level with psoriatic arthritis? Maybe if each doctor had to live just one day in our shoes they would change their opinion. Hey doc, what is your pain number today?

Community Poll

Do you find pain scales to be helpful or hurtful?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Psoriatic-Arthritis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

forpaws Member
How do we make this kind knowledge universal in the medical field? I have had 3 MIs, the second one was indescribably, literally (9 years later and I still can't adequately describe it) painful. I've lived with PsA since the mid 90s in addition to several other conditions that cause chronic pain. The "pain scale" rates from " 😀 to the worse pain you've ever had." Fortunately my existing conditions don't cause me as much pain as that MI, even the 3rd one wasn't as bad, but based on this "stupid" scale I will never be able to tell anyone what my pain is on it-I'd be close to, if not, dead if I could ever state a 10. The point is, yes, you hit the nail on the head-we learn to live with it, smile, say "we're fine (when we're not), hide the persistent and pervasive depression that comes with ALWAYS feeling crappy, rarely seek medical attention and NEVER discuss pain levels/tolerance/management so we don't have to argue the fact that we're not dr. hopping/drug seeking. I'm just done with it (the medical profession). Besides, without health insurance I can't afford to join the dance and play the games they do...
kellis Member
It was a relief to read this story. I thought there was something wrong with me. How could be hurting this bad? Was I being a baby? I think the Fibromyalgia amplifies it? IDK? There are days when I cannot function except on opioids. Degenerative disc disease to boot... I want a vacation from my body.
cazmac Member
Thank you for your article. I was starting to think I must be a big sook with my pain levels! My PSA came on suddenly & quite severe (well, I guess I had put up with pain for quite a while) & by the time it was Diagnosed- after 2 hospital trips & an urgent MRI - all within one week!- my hips were “bone on bone” - one worse than the other & told it was very severe arthritis!! A big shock! A trip to rheumatologist & quick diagnosis of PsA & he said “yep! Hips are stuffed - no arthritis medications will help that - need a surgeon ASAP!” He put me on opioids, methotrexate, Celebrex & prednisone. I went through a tough time coping with a full on disability, pain, depression - having to cease work as a nurse & using a walking frame & crutches to walk! 2 years on & both hips have been replaced with prosthesis- I am mobile again! Able to walk & live a fairly normal life & yes! Much Less pain than before. We moved house 6 months ago to a new state (right at time of 2nd hip surgery). So! Yes!! New GP, new rheumatologist & trying to not cry when new GP announced - Hips are replaced now, So, shouldn’t need tramadol any more. Panadol or Ibuprofen should do it. But they didn’t help! Anxiety started .. But.... what about my excruciating back pain, lesser pain of shoulders, hands, wrists, knees & a lot of ligament aches & pains? Plus - facing a cold winter!! I had reduced Tramadol to 1 tablet per day & only took it when I felt I couldn’t handle anymore pain. I’m on paleo diet, exercise programs, walking etc to keep mobile. I have been fortunate- the new GP listened to me (don’t think he believed my pain levels but admitted he didn’t know me & how I coped with pain) - but.. let me keep on tramadol “for now”! I saw new rheumatologist last week - Very happy with him - he listened! he believed my pain & agreed I need pain relief - stay on tramadol, started Arava tablets in conjunction with methotrexate (I’m off prednisone 18 months ago) plus having an mri on my lower back to see what’s happening. Trial new meds for one month - otherwise - then to biologics. I read about pain relief of panadol, ibuprofen, heat packs etc - but they don’t touch my pain at times. I honestly wondered how others cope! What a journey & certainly not how I envisaged my retirement! Thankful I am retired & can rest when I need to!
shadowmoon Member
Has anyone heard this one from their GP? "How is you sleep?" I replied, "not that good as the pain in my back and knees wakes me up". The doc replies, "well if you got a better sleep you wouldn't be in as much pain!" Are you kidding me!! As if my night pain was a option I could turn off. Totally disconnected from me as a patient. And yes it's hard for them to understand pain of 8 as any GPs at that level are like those of us who spend hours on the lounge or in bed trying not to move and totally unable to work
1. Jill.Brodie Community Admin
 That is so frustrating @shadowmoon!! It is so hard when others, especially doctors, do not understand. Jill, Team Member
CommunityMember232 Member
I fired a pain mgmt Dr once for not taking my pain seriously. I have fibromyalgia along with inflammatory arthritis of the rheumatoid variety. Doc speak for we aren't sure yet. I had been diagnosed with it about 6 months prior. In addition, I had a re-ruptured disc- the 1st was because of a work accident and resulted a part of the disc breaking off and floating around in my spinal column. I was on the Butrans patch, but 9 months in while it worked like nothing had in years, I developed an allergy to the adhesive. In the mean time I had transferred to a Dr much closer to me, but in the same system so he had access to all my records. So, I called his nurse and explained what happened, and that I needed something else for pain. She got back to me saying they don't give opioids for fibro. I said what about the disc rupture and the RA pain. She came back with an offer of 25mg fentanyl. I had been on 50mg prior to Butrans, but whatever, it would have to do until my appt. At that appt, when I told the Dr it wasn't helping he sat, staring at his computer screen, and said he didn't know what to do. I said I did, and I got up and left. I waited 2-3 hours with this appt. He got ticked when I wasn't in the exam room when he was finally going to see me, bitched to the nurse right in front of me. I told him I was sorry, abut after a 3 hour wait I had to use the restroom. This didn't help the attitudes for either of us fr the appt. Benefit now though, I have a great pain mgmt Dr is is very capable and works with me to get to the root of the problem instead of just throwing pills at it. And he really understands how pain works. 
1. Jill.Brodie Community Admin
 Hi @CommunityMember232, I am glad to hear you fired that doctor. What an awful experience to have to go through. Thank you for sharing your story with us. I am so glad to hear you have a great pain management doctor now who is helping you!! Jill, Team Member
Mary Lynn Member
 I would like to shred that pain number scale. I am not a number person. Math is not my deal. I like words. Rating my pain by number is like asking me to speak Latin. Many of us have lived years, even decades, with chronic pain. Do you ever wonder if it has a cumulative effect? Do some of these doctors consider what chronic pain does to our spirit? We wake up every day knowing that we will be in some degree of pain. Yet we put on a smile and get on with it. Vickie, you make a great point when you say that there is no way an outsider can know or JUDGE what its like to live in our bodies. And to have it come from the medical community, which should be a place of compassion, cuts deeply. I am sending a hug to everyone out there who has had their pain dismissed and minimized! 
1. Vickie Wilkerson Moderator & Contributor
 Hi @Mary Lynn I so agree that the medical community should be a place of more compassion. Unfortunately the majority of the doctors think we are just making it up. It is truly sad and makes us not want to trust doctors. Sending gentle hugs. Vickie W., Team Member
Grace70 Member
I absolutely hate the pain scale and why is it necessary for a disease that has no cure just bandaids… it infuriates me but the pain scale isn’t just PSA thing its for every appointment you have with a doctor no matter what your issue is. 
1. Lori.Foster Community Admin
 I couldn't agree with you more, <inline-mention username="Grace70" user-id="4128604"/>. Wishing you the best. - Lori (Team Member)
Grace70 Member
I posted my opinion and Im not sure where it went …. Anyway I despise the pain scale if somehow putting a number on my pain makes it better. Its a very common practice for every doctor visit regardless of the reason for the appointment.. “ Your head fell off, Whats the pain on a scale of 1-10” actually its comical … I always say 10 my doctor will say your pains that bad “yeah” its a 10 “ “rolling my eyes”
Northernredrose Member
Wouldn’t it be better to ditch to 1-10 pain scale in favor for the medical terminology that the pain scale is usually translated into? Meaning terms like: mild, mild to moderate, moderate, moderate to severe, severe, severe to intolerable? Or terms such as these? Just an idea, I HATE the 1-10 pain scale too!!!
1. Lori.Foster Community Admin
 That would make so much more sense, <inline-mention username="Northernredrose" user-id="4717066"/>. The numerical scale really is not very helping. Sending the best of all wishes your way. - Lori (Team Member)
karenc Member
The only pain scale that makes any sense to me is the one that defines what a number means. "I'm in pain, but I can distract myself with work." "I can work, but I'm constantly aware of it in the background." "I'm too distracted by the pain to be able to function." Even with that though, the chronic nature of the pain and what it's like to live like that every day, I wonder if most people can wrap their heads around it. I remember getting my first steroid injection in my elbow. The lidocaine also numbed my forearm. I sat in my car and marveled at the lack of pain in my <a href='http://forearm.My' target='_blank' rel='noopener noreferrer ugc'>forearm.My</a> forearm, not the elbow, the actual reason I was there! I had grown so accustomed to aching all day, every day, that pain was normal and the lack of pain was shocking.
Eric_the_Eric Member
Yeah, this is one thing that really pisses me off; the stubborn insistence on the medical community to stick with this completely useless pain scale. If 10 is the worst pain I've ever experienced in my life, and then my pain gets worse, is that now a twelve? Additionally, many providers don't actually understand what the numbers mean themselves, and they then fail to explain to the patient. The numbers are supposed to apply to the degree to which the pain affects the patient's day to day activity, and whether or not the pain can be ignored or coped with to whatever degree. I flat out refuse to give a number. I simply explain "my pain is at a level at which I cannot accomplish X; or my pain is at a level at which I cannot concentrate on X task; or my pain is at such a level that I want to amputate the offending appendage." But, as <inline-mention username="karenc" user-id="3292722"/> pointed out, it's the chronic nature of the pain that makes it so hard to put a number on and define. And not for nothing, I had a complete non displaced fracture of my sacrum last spring, and I was walking around assuming my pain was just another bad flare, until I had an MRI. So, most people's 10 is something like a 3-5 for me.
Tiffany81 Member
I despise that chart. Living with chronic pain for decades gives most of us the ability to withstand what would put most people in the ER. We HAVE to manage or we would have no lives whatsoever. We don't get to just lie in bed all day when there is a household to run, kids to take care of, animals to feed, bills to pay. We have to do what needs to be done. Most of the time we have to do that with debilitating pain. It's been studied and proven that trauma changes your brain. Pain is trauma, dealing with pain 24/7 is incredibly traumatic. I think this trauma may give a lot of us the ability to push through pain and do whatever needs to be done. Maybe we build up a tolerance to it in some way. Some days the same level of pain will floor me and other days I can manage better. It's a rollercoaster. What is clear is that there needs to be massive amounts of money put into more research regarding chronic pain and the affect it has on our ability to function. There needs to be more research specifically in regards to AFAB chronic pain sufferers since statistics show we are not taken seriously more often. No one should have to go through these hoops to be taken seriously. The rates of unaliving are high among us with chronic pain, more research, more training, knowledge and empathy from medical professionals could literally save lives. We deserve at least that. Psoriasis since I was 17 and diagnosed with Psoriatic Arthritis a year and a half ago. I'm 41. Stay strong and ALWAYS advocate for yourself and report any doctors who are lacking. Also post Google reviews, Yelp them, post on any and all platforms to hold them accountable and hopefully save others from having to go through the same experience. Perhaps if we make it known they will be forced to make more of an effort. 
1. Lori.Foster Community Admin
 <inline-mention username="Tiffany81" user-id="4828622"/> So well-said. Thanks for chiming in. - Lori (Team Member)
Eric_the_Eric Member
jems.com/patient-care/a-new-approach-to-the-1-to-10-pain-scale/ 
1. Lori.Foster Community Admin
 Great article, <inline-mention username="Eric_the_Eric" user-id="6704533"/>! Thanks for sharing. Best wishes. - Lori (Team Member)
nbelinda Member
I find it hard to give a number to my pain. My feet are 8, my wrists are 6, each toe feels a different level of pain at any given time. Each day is different...
Catherinee1 Member
I started to bring my own chronic pain scale. I explained to a doctor, I am more afraid of them taking the pain away. Because my body is used to functioning in pain levels that yes used to put me in the Er. When the pain is completely removed temporarily. ( By enormous amounts of dangerous pain killers).When it returns I feel it more and have to regain the tolerance for it. Which in my opinion is worse then living with it.
Colin R. Member
I agree that so many of my body parts each have their own separate pain level. But when a doctor then specifies, "Well rate the one that hurts most," I've rated myself higher and higher on the scale over years. I've NEVER rated my pain a 10. I'm saving that for the day it hits a level that I can't fathom. (It'll probably be what my late husband felt the day he was sitting up in a hospital bed in SHEER AGONY and begged "DO IT!" And was then injected with 21 mgs of morphine and took his last breath.) But I reached 9 years ago, and it's gotten worse since then. So now I'm in the ratings of 9.25, and 9.5, and 9.75, and 9.833.
1. Colin R. Member
 <inline-mention username="Lori.Foster" user-id="3297576"/> Thank you so much, Lori. Even just the simple act of "venting" to you and a group of folks who (unfortunately) understand it so well, is therapeutic. Ya know, it's weird. I wasn't frightened during those days in the hospital. I WAS frightened when I didn't know what was happening to me! And I WAS frightened when every source of COVID testing I searched for that day, all said, "Ohh, we're sorry. Yes, we advertised that we do walk up testing, but we don't." But then again, that's how I ended up at Patient First Urgent Care. Had I found walk-up COVID testing, I'd have gotten swabbed, then gone home to await the results... and VERY possibly died either from sepsis, bleeding to death, or one of the other or all infections! Then, I also couldn't begin to worry about myself once admitted, because I didn't plan on a hospital admission when I left the house that morning. My two dogs were home alone!! THEY were my concern... not ME!! But friends got to them in 3 days. When I got the call that one of the friends got into my house, I heard Opie and Dalton barking in the background. I cried. It is possible that I may be able to play my instruments again. But I also realize that after 8 years of not playing, I have NO dexterity. I have all the knowledge I've ever had. But my fingers will be back at square zero if I ever sit at a piano or organ again. To even accomplish sitting and using my fingers will require both my spinal stenosis be improved, AND my fingers. Right now, not only fingers stop my playing, but I can't sit in that position for more than 5 minutes, due to my spine. The outside world can't begin to fathom all we deal with. But I'm preaching to the choir. That's part of why this group exists!! And also, Psoriatic Arthritis is EXPENSIVE!! I had to stop Physical Therapy for my shoulder replacement AND for a torn meniscus in my knee. PT sessions are $35 copay a piece! Those two issues came to $140 a week!! I have a few scans to get. But I'm waiting until I can afford the $250 for each CT scan or MRI! About 3 former scans are being paid for over time. I have two more payments to finish for those! As I type this, I'm waiting to hear any moment that I can go and close on refinancing my home in order to pay my medical bills. 
2. Lori.Foster Community Admin
 <inline-mention username="Colin R." user-id="6725233"/> Thank goodness you landed in the hospital rather than going back home that day. Wow. That is scary. It's a shame that anyone in this county should have to forego treatments because they can't afford them. I wish you could continue therapy and that you didn't have to refinance your house to cover your medical bills. I hope the stars align so that you can play the piano again, but I am sure you will be happy with any improvements in your quality of life. Let us know when you undergo the surgery, if you don't mind. I'll be thinking of you and I would like to know how you are doing. Do you have support at home for the recovery period and someone to care for your pups? We are dog people too (two rescues). I would have been so worried if they were stuck at home with no one to let them out. I am glad your friend was able to get in and help while you were hospitalized. This really is a good group of people here. I am glad you found us and that venting helps. Too many people think PsA is like osteoarthritis. Here, you have a huge community of people who get it. - Lori (Team Member)

Community Poll

When it comes to living with multiple health conditions, I've found my: