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Explaining My Pain Level

Explaining My Pain Level

Prior to being diagnosed with psoriatic arthritis, expressing my pain level to nurses and doctors was easy. The chart that rates pain on a scale from one to ten, with ten being the worst, was in line with whatever injury I was being seen for. That changed once I began experiencing physical pain on a daily basis.

Sliding scale

Before becoming chronically ill, a good day didn’t include physical pain. Afterward, a good day meant experiencing a level three on the pain chart. As my condition progressed and being diagnosed with a few other chronic diseases, five became my new normal. Now the pain level that I consider normal is what I used to label as an eight. Over time I have learned to function with pain levels that used to bring me to tears.

A new scale?

The problem with learning to adapt to living with higher pain levels is that doctors and nurses have doubted or dismissed my pain because I don’t look like I am in as much pain as I claimed. I no longer cry when experiencing pain levels that used to turn me into a sobbing mess. This makes expressing my pain level difficult. There was a time when I felt that hospitals and doctor offices should have a separate pain chart for those who live with chronic pain. But later I realized that because our pain and symptoms often differ a separate chart would be of no use.

What would be helpful for patients like us is for more doctors and nurses to realize that many of us will react to pain differently than those who don’t live with daily pain. Someone who doesn’t live in pain would most likely cry if they broke their toe or tailbone. Not me, I have broken and dislocated bones and was able to remain calm. It wasn’t that I was used to that pain level or that it didn’t hurt; instead, it’s because I have learned to protect myself emotionally. Crying and getting upset or angry increases my stress level which causes other symptoms to flare. When experiencing reactionary pain, I am less able to share with medical professionals which area is really the source of my pain. Is your average pain level what you used to consider as severe? How do you express your pain level to medical professionals? Have you ever had your pain dismissed or belittled because you weren’t screaming in agony?

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.

Comments

  • DianaN
    5 months ago

    After being on most of the medicines used I am now on stelara injections every 12 weeks and at first I thought maybe this and the methotrexate I take would work. Well here I sit with so much pain and there are so many parts of my body. Feet, Hands,shoulders,Knees and spine. I really need a walk in tub. I am a caregiver for my husband. I really feel I have let every one down.

  • CathyD moderator
    5 months ago

    @dianan, I am so sorry to hear that Stelara is also not working for you 🙁 Are you due to check back in with your doctor anytime soon? I promise you that you have not let anyone down – I know it can feel that way sometimes (I am a caregiver for a family member too) but doing our best is all we can do, and all that anyone can ask. How are you feeling today? Sending lots of love to you. -Catherine, Community Moderator

  • rjnavarre
    7 months ago

    I’m always in pain. They get confused when I put down 6-8 for pain. I tell them I’m always a 6 for pain and since my pain fluctuates I say at my worst is an 8 and they don’t get it. They are like so your a 6?

  • tridmo
    1 year ago

    I too have difficulty with the 1-10 pain scale sometimes. Since living with chronic pain my scale has definitely shifted, what used to be a 7 is now a 4. My last visit with my rheumatologist was an example of this. The prior visit I had been on the edge of tears from the pain. This time my pain was not as visible. She asked me, “what’s the deal, last time you were miserable, today you look fine.” How do explain to someone with no frame of reference that when the miserable persists long enough to become the mundane that self preservation requires you to adapt. It doesn’t diminish the pain.

  • Rojo
    6 months ago

    Ten years ago I was working in a hospital. At that time it was incomprehensible to me how people could possibly live with chronic pain. I would occasionally ask someone how they dealt with it. 99% would just shrug like they weren’t sure themselves.

    Now I know. I’ve become a shrugger. I used to have a very clear idea of the thresholds from 1-10. Today someone asks me what my pain level is and I have NO idea what to say; the one exception is my rheumatologist. She has a humorous pain poster with not 10 faces but maybe fourty. It explains how you can add points for stressful life situations and frustration related to friends, family, and professionals who don’t understand. The highest level is the “Ludicrous Zone”. That helps me cope with chronic pain.

  • mich54
    8 months ago

    And it also makes me think of how my rheumy told me last time I was there……. “I thought you were going to look a lot worse because of how you tell me you feel in all your emails.” REALLY?? You don’t know what invisible disease means?? You don’t know what stoic means?? I was really irritated by him saying that to me.

  • ptm215
    1 year ago

    Thank you. It’s so nice to hear from people who understand.

  • VickiN moderator
    1 year ago

    @tridmo, you put this very well. What we are forced to endure becomes the new normal, but normal certainly doesn’t mean easy, or better. Were you able to explain this a bit to your Rheumy? I hope you are coping okay today.
    -Victoria, Community Moderator

  • mich54
    8 months ago

    **She asked me, “what’s the deal, last time you were miserable, today you look fine.” How do explain to someone with no frame of reference that when the miserable persists long enough to become the mundane that self preservation requires you to adapt. It doesn’t diminish the pain.**
    I LOVE this….. that is it exactly. ‘When the miserable persists long enough to become he mundane that self preservation requires you adapt. I doesn’t diminish the pain.’ PERFECTLY put.
    My sister asked me….. you mean that every day, you are never without pain/discomfort?? I said no, never. I have it 24/7. I said if I were to complain, I would have to complain 24/7, therefore I never really complain. What’s the point? And who wants to hear it?

  • lynnda
    1 year ago

    I completely understand and relate to all you have shared. I live with people that have yet to understand that I have a disease that is chronic. I was recently told not to scream when I was hurt because I was making their nerves bad. Find some other way to express it or deal with it. You would think I am supposed to know the dog was going to jump on my foot. Sorry for venting.. Just a few days ago I literally took a step and pain shot through my entire body at least at 15. I could not take another step, bad thing was I was in the middle of crossing the street. My knee has not been the same since. I was told get a knee brace and some linament. Really? Great advice from those who one would expect to care. I am hopeful that one day they will understand.

  • VickiN moderator
    1 year ago

    @lynnda, I’m very sorry to hear that your family is not being as supportive as they could be. I’ve heard many here say they wish they could “loan” out their pain, just for a day, and just so their loved ones could really understand how hard it all is. I hope you are managing okay today.
    -Victoria, Community Moderator

  • ptm215
    2 years ago

    When you are always in pain, yet you don’t look it, I feel like our struggles are forgotten by even my family members and sometimes my doctor. It is incredibly frustrating and then all of a sudden I will reach the “last straw”. Example: I spent a half a day preping food to make soup, cutting meat, cutting veggies, opening cans (who would have thought opening cans would be so painful!). I made the soup and went to ladel it into bowls. I o ly have one strong hand so I was balancing the bowl on the pot. I accidentally poured hot soup on my bad hand (psoriatic arthritis us worse in this hand, I have a broken wrist that won’t heal and I just had a rotator cuff repair of four tendons and split bicep). That was my breaking point. I cried and kept my hand in aloe/benzocaine mix for the next eight hours. The burning wouldn’t go away. It wasn’t the burning that caused me to cry, it was the complete frustration. I think my husband thought I was never going to stop. I only cried for 15 minutes. It was actually kind of cathartic. If the burn wasn’t so bad, I might actually have felt better after letting go. I just don’t do that. I keep it all inside. I don’t want people to know that I am always in pain. They must see the splints, the sling, the compression gloves, the tendon stretcher. They are on all the time. I guess I feel like people are completely unaware of what this is like. Absolutely no compassion or understanding from my husband. I have IBS and hypothyroidism, too. A perfect trifecta says my doctor. All are hard to treat and in concert with each other, it’s a disaster. I’ve become so introverted. My home us my refuge. Stepping out is difficult. I feel safe at home with my puppy by my side.

  • ptm215
    1 year ago

    I just noticed your answer. Thank you so much for your kind words and prayers. I’m glad you have your sister for support. I’m so tired I find it hard to explain it all anymore. So sad. Depression seem to be increasing because I have no one to listen and no affection. Feeling very lonely.

  • imschmarte
    1 year ago

    I am so very sorry for you! I too have PSA, psoriasis, Sjogrens, fibromyalgia, IBS, and AS. I too hate to go out, just going grocery shopping is exhausting, and raises pain levels to a point where all you want is to sit down and cry! I am fortunate in 2 things, my husband is a gem, understands, and does a lot for me. And my sister, who has all the same things as I do, and more, lives next door. We are our own ‘group therapy’. I remember taking my sister to the ER once time, and when she said her pain level was 10, the nurse looked at her like she had 2 heads. She wasn’t screaming, crying, or emotional at all. I tried explaining, when you live with a high level of pain every day, yes, it still hurts, but you DO become somewhat emotionally detached from it. You HAVE to, or you would go insane! NO one can understand unless they go through it. I pray you get some release from your pain. God bless!

  • mich54
    8 months ago

    ptm215 and imschmarte…… I can relate !! I live with, and have lived with this, so many years, untreated, that I have learned to just grin and bear it. What else can you do?? No one knows how sh*tty I real feel. My family doesn’t know or GET it. My doctors have been pretty much useless and have somewhat been negligent in believing me. I am pretty stoic, I guess. My mother was too, so that doesn’t help either. I am not a crybaby. But even when I do try to explain it, everyone just looks at you blankly, and doesn’t really say much. Which, to me, infers…..they don’t really believe you. And also, with that kind of response, you just feel more like you don’t have the right to voice yourself. You just walk around (I mean…drag yourself around) all the time, because you have no other choice. I started feeling stiff in my early thirties, I am now 64. So….it has been many, many years of feeling progressively bad, with no real help or caring from others. So how do you describe your “pain level” to people who know nothing about what it is like to walk around like this for 30 years?? It has become my normal.

  • Beth V
    2 years ago

    VickiN, the local Y doesn’t list any special rate, but I have sent them a question about it. The posted single adult rate is $478 a year and couple with no children rate is $638. I was going to a pain management clinic, but the patients had to stand in line to check in and out, I complained about how standing in line increased my pain significantly for several years, but nothing changed, and sometimes it took 15 minutes to get through the line to the desk, so I have stopped going there. I really wish my insurance would cover acupuncture, I would love to try that. I’ve looked into it, the going rate per session is $70 to $80, with 6 sessions minimum recommended. I’m just frustrated with the cost of everything being so out of reach for most people.

  • ptm215
    1 year ago

    I tried Accupuncture. $100 per treatment and they suggested 10 sessions and then a break and do some more. It definitely helped, but also not covered by insurance so I paid $1,000. I decided not to do more because of the cost.

  • CathyD moderator
    2 years ago

    Hi Beth V,

    Gosh, you would think a pain management clinic would understand that standing in a queue for a long time could be an issue for some people ! I’m sorry to read about this experience. When you complained did you try writing to them? For some reason written complaints seem to be taken more seriously than verbal ones.

    I totally hear you on the cost issue – the expense of everything is such a huge obstacle for so many people. Please keep us updated on what the YMCA say regarding the reduced rate – hoping for good news from them for you.

    Warm wishes,
    – Catherine, Community Moderator

  • Beth V
    2 years ago

    I’ve been in chronic pain for more than 30 years. I’ve thought about exactly what you are talking about many times. I know that pain that now feels like 5 would have had me writhing in agony 30 years ago. Another problem I have is that I have several different diagnosis, and it’s hard to separate my spondylosis pain from my spinal stenosis or my herniated discs. I am tired of hearing that if I would only excersize more, or do water aerobics. The YMCA in my town costs hundreds of dollars a year, not exactly accessible on a disability income. I’ve had nurses accuse me of drug seeking when I’m asked my pain level and I calmly tell them 8. I have a prescription for oxycodone, but I haven’t taken any since shortly after my knee replacement a year ago, it just doesn’t work well enough to make it worth the side effects. I’m just as frustrated as everyone else, there must be some way to help with chronic pain.

  • VickiN moderator
    2 years ago

    Beth V, it really is so frustrating when people just tell you to exercise! (as if we wouldn’t have just done that if it could cure everything, ugh). Does the YMCA in your city not have reduced rates for those on disability? I’m only curious because by Father in-law goes to the YMCA and he pays very little because he’s on disability. You have to submit forms and the like, but I was under the impression that all YMCA’s offered these reduced rates.

    As for the pain, we really have such a long way to come. Because Doctors are so afraid to prescribe various narcotics, everyone with pain gets lumped into the same category of “danger, danger!” It can make it difficult to get the pain relief you need. I’m wondering if you have a pain management clinic in your area that you could go to? I know some community members also use at home devices like the TENS or Oska Pulse, and that they are sometimes partially covered by insurance.

    We hear you and you are not alone in this community. Take good care and come by anytime,
    -Victoria, Community Moderator

  • Eurotrekker
    2 years ago

    Ever since I was a kid, I’ve been in pain, but I thought everyone feel pain. It wasn’t until I was an adult and was given Valium before a surgery that I didn’t hurt. I couldn’t believe it. I kept telling my parents I didn’t hurt anywhere and I began singing in the elevator. After my surgery, my pain came back. At that time, my mother asked if I have always hurt and I told her I thought that was the norm. I didn’t know people could actually be pain free. Fast forward many years. I started having excruciating pain and could not get out of bed or chairs and was at tears. I had a high tolerance for pain (broke my nose and didn’t flinch, fell on a 3″ nail with a board attached which punctured my calf and didn’t cry, took martial arts with all men and received many strikes, but shook it off). However, this pain was intense. It took 8 years for me to be diagnosed with PsA. By time of diagnosis, I had already suffered broken vertebrae without knowing it and joint damage had occurred. This was after the above events. Since then, if my pain level is at a five, I consider it a good day and push myself to ‘act’ normal. Most of the time I underrate my pain, because I know Ifeel I could always feel worse, and don’t want to use up that number.
    I try to be understanding of those who do not comprehend my pain level. Unless you have experienced severe, continuous pain, you can’t really great it. Just like I can’t understand not being in pain and then suddenly experiencing it. It must be tough on them. One of my Dad’s response to anything that caused us pain as kids was, “I’ve had worse than that in my eye.”. The fact is, he probably had, because he had had a birth defect that left him in pain everyday of his life. However, it irritated me, because I thought he was dismissing my injury. I feel the doctors sometimes do the same thing, not because they experience the pain, but because I’m not sure they can truly comprehend it.

  • Cynthia Covert author
    2 years ago

    It is definitely hard for people to understand the pain we learn to live with when they haven’t experienced it themselves. Hugs!!!

  • Casey moderator
    2 years ago

    Wow, Eurotrekker. What a story. Your posts are always riveting. Hearing about everything you’ve endured (hello….falling on the nail and board?!?! AND a broken vertebrae?! OMG!) makes me even more amazed. Your insights on not knowing how others deal with and feel pain are so spot on. Although we all have different experiences, I wanted to let you know that the whole community is behind you, and we’re here for you. Even when you just need a friend to chat with. Please know I’m thinking of you, and sending positive thoughts and very gentle hugs your way. Warmly, Casey (Psoriatic-Arthritis.com Team)

  • Mormor
    2 years ago

    My norm has definitely gone up, 6/7 is now normal. I remember thinking about that about a year after PsA put it’s death grip on me, I longed to feel pain free again. The 1st Rheumy I went to I made the mistake of telling himI’m fairly certain it is PsA. He walked in, looked at my chart, looked at me, said “No,it’s osteoarthritis. Come back in a coupleof months if it’s not better and we’ll do a hip replacement.” Rheumy #2 said he felt it may be PsA but more likely a lot of it was fybromyalgia. He admitted he didn’t believe my pain was that severe due to my lack of crying, until he gave me 2 cortizone shots and I didn’t flinch. He did keeptrying to help, but the hospital he worked in refused to treat with any narcotics. Rheumy #3 and a keeper, looked at my chart, then me, and asked if I had had a back xray done, nope. Did a couple and confirmed the scoleosis which also twisted, spinal stenosis, spondylolisi, with a side of PsA. He started me on the pain meds, found the right oneand the right dose, so now I can walk without whincing. I’m so glad I kept trying new MDs and doing my research. Current MD is rated as #1 in the state. 🙂

  • Cynthia Covert author
    2 years ago

    Kudos for not giving up!!! Hugs!!!

  • Casey moderator
    2 years ago

    Hi Mormor! What a great story! I’m so sorry to hear that you had to fight through so much to make it to this point. However, I’m so inspired reading about how you were a strong, resilient advocate for yourself and your health. I’m so happy that you’ve found a great doctor, and also, that he’s ranked so highly in your area! Amazing! Thanks for sharing! -Casey, Psoriatic-Arthritis.com Team

  • trueblue
    2 years ago

    I agree..if I personally sat down..everyday because of pain..i would never get up…and they (the medical staff) always look at you crazy when you say a five or 6..for me..a 7 or 8 on a regular person..
    But we adjust..we compensate..if im at the doctors..im in trouble..

  • Cynthia Covert author
    2 years ago

    Totally understand, we just keep redefining what normal is. Hugs!

  • Casey moderator
    2 years ago

    We hear you, trueblue. I’m so sorry you’re struggling daily. Please know we’re here for you, and so admire your spirit and attitude to keep moving forward. Thank you for sharing. Sending gentle hugs your way. -Casey, Psoriatic-Arthritis.com Team

  • Bobbie
    2 years ago

    I definitely have been under treated in regard to acute injury pain within my chronic pain scale. I’ve had the looks from doctors & nurses who don’t seem to think I’m really in “that much pain” all the time or, and this is my favorite: we don’t provide narcotic pain relief for patients who have been to E.R. many times. I have been a PA patient for 17 years now. It took nearly half that time to find a doctor who believed I was in actual pain & thus provided me with long term pain meds. Most of the doctors who mistreated me didn’t want to consider any treatment other than Humira, Enbrel or the other biologics. I was on Humira & felt even worse so that is not an option I am willing to consider now.

  • Cynthia Covert author
    2 years ago

    I hope you find something that helps you! Hugs!

  • Margot T moderator
    2 years ago

    Hi Bobbie,

    Thank you so much for sharing your experience with us here. I’m so sorry to hear about your difficulty in getting treatment that helps you feel better. Thinking of you.

    Best,
    Margot, Psoriatic-Arthritis.com Team

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