When I went in for physical therapy the other day, my therapist asked me that ever-annoying question that us chronic pain sufferers hate to hear: “What is your pain level today on a scale of 1 – 10?” I know that it is the therapists’ and doctors’ jobs to ask us that question, but they don’t realize how difficult that can be to answer. For me, and for many of my chronic pain peers, trying to rate the level of our pain is like a ME/CFS patient trying to rate the level of their fatigue. When you are exhausted all of the time, day in and day out, it always seems like the fatigue is bad. When the pain is there all of the time, day in and day out, it’s hard to rate it and it’s hard to pinpoint exactly where it is coming from all of the time, too. All I can tell him is that it hurts and I try my best to describe it.
I did finally think of a way to describe my chronic back pain to the therapist the other day when I got the “pain level” question. I told him that the pain I experience is like an annoying person you don’t like who never goes away. When you have to deal with an irritating or annoying person for a couple of hours or a day or two once a month or a few times a year, it’s manageable – it’s easily tolerated. You know at the end of those few hours or at the end of the day that your life will return to normal and that you won’t have to deal with that person again or at least anytime soon. You may get a little upset or a little frazzled by being around this person, but it doesn’t turn your whole life upside down because you realize that it is short-lived.
But imagine if you had to live with this very annoying person that you don’t like, 24 hours a day, 7 days a week. You are with him all of the time, he is by your side constantly, and is never out of sight or mind. What may be just a minor annoyance to someone else is magnified times ten to you because you have to deal with this person you don’t like all of the time without ever getting away from him.
This is what chronic pain is like. Being in pain 24 hours a day, 7 days a week, despite the “pain level” is too much to deal with and many of us have been dealing with it for too many years.
During therapy and while I’m doing the exercises he gives me there, my pain usually doesn’t increase or decrease – it almost always stays the same and I think this confuses the therapist. But that is what chronic pain and Fibromyalgia is. It’s constant, never-ending, and there is easy way to describe how it feels, except that it hurts all of the time and I want it to stop. I’m sure if I were doing the exercises for a longer period of time I would probably feel more pain, like I do after being at work for a couple of hours, but my therapy is only 30 minutes long and at least 10 minutes of that is ultrasound.
No one should have to live their life in pain – not one day, let alone every day of the year.
My husband has osteoarthritis. The answer he finally came up with to give doctors was that on the 1-10 scale, his pain rarely goes above 3 or 4, but it is never below 2.
What a dynamic description of chronic pain. I congratulate you on being able to stop “playing” the 1 – 10 pain scale! I also dislike that question. I mean, come on! Chronic pain! Even the pain scale question can up the pain by 4 or 5! Just think you painted a perfect picture of fibro. I am 57 years old and have had fibro for about 15 years. I went back to college and took the Medical Assistant program, and the Phlebotomy program. In my medical assist class, our assignment was to choose any disease we wanted and to explain to the class the cause, treatment, cure, symptoms, etc., etc. Naturally, since I have fibro, I picked that. When it came to describing the pain, I told the class: Fibromyalgia pain is like someone stuffing you into a wooden box, making sure you are in a fetal-position, and then closing the box for two days. For two days you cannot even move a finger, much less try to stretch out your arm. After two days, they roll you out of the box. They then force you to immediately stand up. HOW WOULD anyone feel if that happened to them? Well, we fibromyalgics feel this on a daily basis. I agree, some days ARE quite (almost) pain free, but those days are RARE. Most days, the pain is constant and unbearable. That’s my description. Anyone else want to describe their personal fibro pain? Hugs to all, Barb.
Excellent metaphor! I have always said that it’s not just the pain itself that is harmful to us, but the knowledge that it will not stop. I’ve been working on and off an academic paper about the language and philosophy of pain (I’m an English professor), and what you describe here is perfect! Even though most days my pain level hovers between 3 and 5, it feels much worse than it is, since I know it will *always* be there. It changes the way I speak and think and write about pain, about movement, and therefore life itself.
Even the best professionals do not always understand our position. I, too, have had problems with physical and occupational therapists who seem disappointed in me when they don’t see “progress” or can’t easily quantify my pain and status. The model of health care (particularly for PTs) is one of amelioration: you do X, Y happens, and we all go home better. As you point out here and in another post, that’s not always true, and we, of all people, don’t need that kind of pressure. Still, I think PT is one of the best treatment options out there, and my do-it-yourself at home sessions are what keep me working full time–whether it’s a 3, 5, or 8 kind of day.
After my pain management doctor asks my pain level my first question is what part of the body are you wanting to know about? Other than Fibromyalgia I also have 3 other conditions that cause chronic pain. So asking me what my pain level is…is never a one word/number response. I’m not sure they have ever has someone ask them that before because the look I got was a “deer in the headlight” look. Most days my Fibro pain never goes below 5 and that is what I consider a good day…I usually hoover around 7 in Fibro pain. The other 3 conditions also have a separate rating. I personally think they should do away with the pain level question.
I’ve always said that I feel like a prisoner trapped in my own body. It’s like someone is pinching you really hard, but you can’t get them to let go. Maybe if doctors were to take a clothes pin and pinch it really tight on their arm and wear it for a week (although a day would probably be more than enough) than they would understand the physical, mental and emotional abuse of chronic pain. It just attaches and won’t let go.
Carrie Roberts says
Koodos to Sandy Robinson for the description of Fibro & pain she so eloquently put into understandable words. I have been trying since 1983 to describe it and its intensity and my description being “everything hurts it’s just the level of pain that varies”, but then everyone thought of me as…well you would understand their faces looking back at me.
Thanks for sharing.
todd bulkeley says
thank you sandy…….as i sit looking for answers at 5.30 am…..on this thing we call the world wide web…..i have sadly taken comfort in your struggle…..not in a sadistic manor….but for purely selfish reasons……i myself have suffered 24hrs a day with a constant 8/9/10 out of 10 body pain that has driven me nuts for the last 4 years…..i have seen over 30 doctors/specialists and had 6 M.R.I’s……….its caused my hair to fall out and my general love of life to slowly fade with every day i greet….i am now awaiting a 3 week intensive course at a chronic pain clinic….prior to this happening….they made me see a pyschologist to confirm my marbels were intact [thank god they were]……at 38yrs old im am now waiting for that day the pain is no longer there…..however,, the reading material given to me upon my last visit to my pyschologist didnt give me alot of hope….the first page stated that ”chronic pain syndrome” can last anywhere from 3 months to 30 years……who the hell works this rubbish out….heaven help us…..to all that have found this site and are struggling…i wish you all the best….im lucky to have an awesome wife and two beatiful kids……they dont know it….but there keeping me alive.
This is an awesome metaphor. Sandy, would you be OK with me quoting you and linking back to you on my blog http://www.fightinthefibro.blogspot.com?
I appreciate your insight, it’s so helpful.
Due to a fracture L4 & 5 I have lived in chronic pain for more then 20 years now. The first 4 years became an oxycodone addiction.
When I decided that the life I had on the drugs was worse then the pain I managed to quit and since then have lived with the constant pain. Strange as it might sound I learned to co-exist with the pain and where it is always there and quite sever it is just more back ground noise if you will. Like shutting your hearing aids off so you can’t hear the annoying person you are using as a metaphor.
I actually found the ultra sound made my symptoms worse. I got a lot of headache symptoms afterwards as well.