Is It Possible To Get Used To Chronic Pain?

RA Guy Adventures of RA Guy 25 Comments

For years, I would have adamantly said ‘no’. Less than 24 hours ago, though, I caught myself saying ‘yes’.

Yesterday afternoon, right before my physical therapy session, I went to get a haircut. The lady who cut my hair yesterday was the same lady who’s been cutting my hair since 2003…longer than I’ve (officially) been living with rheumatoid arthritis. (My first symptoms started a few years earlier, although I didn’t know it at the time…I used to just chalk up the strange foot pains and knee pains to “too much walking.”)

Now this lady who cuts my hair, if you were to ask her what rheumatoid arthritis is, she’d probably shrug her shoulders, and say she doesn’t know. If you were to connect the pieces for her, though, and say that rheumatoid arthritis is the illness that I–her longtime customer–live with, then all of a sudden she’d know even more than she could have imagined. She’s tell you about the rough mornings, the never-ending pain, how it can affect people of any age, the constant cycle from unaided walking to canes to crutches and back again, the expensive medicines that can sometimes cause severe side effects, and along those same lines (she’s a hairdresser, don’t forget), the hair loss.

On more than once occasion, as much as I wanted to deny it myself, she was the one who would force me to accept that my hair was indeed thinning out, falling out, changing colors, or all of the above.

But the main point of this blog post isn’t about hair loss, something that has evoked so many different emotions when I’ve experienced it in the past. At the moment, having been off medicines for almost a year now, my hair is back to it’s normal, healthy self. What I’m leading up to was the small-chat conversation that took place yesterday, when I was getting my hair cut.

My hairdresser, as usual, asked how I was doing, and inquired into my current state of health. I told her that in general I was doing okay, but that for the past couple of weeks my mornings had been particularly rough. I mentioned that I was going to physical therapy right after she finished cutting my hair, and then I showed her my hands, and we both commented on how the knuckles were just red enough for the color to be slightly noticeable. (Just a dash of rouge, we might had said, had we been referring to the makeup catalogs that lay on the counter in front of us.)

Then, as this ‘medical’ part of our conversation came to a close, I summed it up with the following: “The pain never ends, no matter how good I might look on the outside…but at a certain point, after so many years, I just decided to get used to it all, and move on with my life.”

And there I had it. After years and years of telling myself that I would *never* get used to this pain, even once having discussed as much with my psychologist a couple of years ago, if such a thing (getting used to the pain) was even possible (psychologist: yes, me: no), here I was, for the first time that I could recall, actually saying that I had indeed gotten used to the pain.

I started to look back at some of my most recent flares, and focused on the most recent one, which took place at two o’clock in the morning this past Saturday. While I once again felt like I had been pushed up next to a bottomless abyss, and was only seconds away from falling into I don’t-know-what (I’m not even trying to be ‘dramatic’ with the words that I use to describe what it’s like to be in the midst of a major flare), I started to realize how ‘routine’ all of this actually was.

The constant pain. The flares out of seemingly nowhere. The heat pack or electrical pads that are wrapped around the worst of the worst joints (because there are never enough to go around to all of the joints.) My mind, struggling to remain balanced, and trying to figure out what is within its control, as my body goes haywire. My breathing, which becomes much more rapid, only complicating all of the issues that are at hand. The vaporizer, that has been turned on by my partner, without me even realizing as much. There are wisps of lavender oil in the air, and if I try to grab on to them and slow down my breathing, things will get better.

That’s exactly what I do…I sometimes don’t know what to hold on to, in order to try to keep some sense of ‘sanity’ (or to prevent a sense of ‘insanity’ from taking over), but grabbing on to my breath always seems to work. Then, trying to figure out how long I’ve actually been in this flare…has it been 5 minutes, or 15 minutes? In the back of my mind, I remind myself that the absolute worse usually lasts about half and hour…sometimes even three-quarters of an hour..usually never longer than an hour. Compare what I’ve gotten through with what I still need to get through, and it might seem like too much…but if I just keep repeating what I’ve done the past few minutes, over and over and over and over again, I know I’ll be okay.

And then that split second finally arrives, when I can feel my flare breaking. The pain is still quite intense, the only difference being that it’s not getting worse by the second…and while it will hover here for another minute or two, I know that I’ve once again gotten through the worst, that the pain will soon let up. (This is indeed what happens, only a few seconds later.) And then the ‘residual’ pain, from joints which have just taken one of the worst thrashings in their life. (And no matter how many times this happens, it still qualifies as “one of the worst.”)

All of this that I describe above, and much more: I’m used to this.

I don’t write these words out of sadness, or self-pity. I write them from a new-found awareness that I am indeed used to the chronic pain that flares at regular intervals…and that by admitting as much, the prospect of getting through another flare just seems a little more easy, a little more possible. I may not be able to remember these thoughts, these declarations of self-strength, next time I’m in the midst of a flare…but I’m certainly going to make it my goal to try to do so.

No matter how bad it might get at times, the truth of the matter is, I am used to this.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Comments 25

  1. Bel

    I have to admit i have got use to and can cope with a constant level of pain but, when pain levels rise… Bam! I get short tempered and am hell to live with x

  2. Vicki Dar

    I thoroughly enjoy your articles! My daughter, Carly Reeser, is 25 and has dealt with challenges of RA for a few years. I know, you’ve been an inspiration many times. Keep up the excellent work and thank you for all you do!

  3. Kim

    I’ve been diagnosed for 26 years. I could have won an academy award for the first 20years, cuz if you didn’t know me, I looked and acted great! The last 6 yrs or so, my “acting” career has fizzled out! I can’t pretend anymore, I’m exhausted!
    But I do believe you do get used to chronic pain on some level.

  4. Lisa

    Definitely used to the low grade constant pain that is always present. Flares and super infections still totally take the wind out of my sails!

  5. Lori

    At first any time I had a painful day was a “bad day”. Then every day was a “bad day”. Pain became the new “normal”. Then, A “bad day” is when the pain is more extreme than usual. As time goes on, the “new normal” becomes even more extreme pain. I can’t remember when I haven’t been in pain.

  6. Julie

    Yep- I have always had both a high pain tolerance and a stubborn streak. I never thought about it until someone said to me ( on a bad day) I couldn’t deal with your normal pain- this would probably land me in the psych ward!

  7. Erika

    I think it is a possibility to get used to chronic pain, I know I sure did. I have been roughly a year without chronic pain now, because the medications I was put on to treat my RA all work and my flares aren’t so debilitating anymore – however – I still wake up every day and have to remind myself that Im not living in chronic pain anymore – the forces of habits I developed while in pain still linger to this day!

  8. Paula

    I also have always had a high tolerance for pain. I have not had a moment without pain for 2 years. I am getting used to it but I still hate it.

  9. Andrea

    You always seem to post just when I need it. Have had pain in my feet and ankles since August. The pain is often truly unbearable… what I’ve gotten used to is limping along the edge of the bed, holding onto solid object to get to the bathroom. Slinking along the wall on the one good foot, to get into the kitchen. Today I was extremely grateful that I have varying mg of Prednisone. I was grateful that I have a husband who will get up in the middle of the night to get me a banana so I can take it. I am aware of the pain, it is a daily frenemy. I am used to it and when I get the rare pain-free day… well, I’m grateful for that, too.

  10. Donna

    While living with chronic low back and tailbone pain for 15 years now, I have never gotten “used” to having pain. Nor will I. I have learned to “manage” the pain with medication so I can function daily with low pain levels. When my back is causing excruciating high pain levels, I am miserable, short tempered and can not function until the medication starts to bring the pain level down.

  11. Becky

    I completely agree with getting used to it. I had my arch fused a couple years ago and didn’t really think about the pain before. After the surgery, I was shocked at how it didn’t hurt any more. I didn’t even have to take pain meds for it.

  12. Dee

    The daily 3-4/10 pain I have gotten used to. It is the flares (mine last several days; or at least the ones with the flu-like symptoms do) that kick me.

    I have not gotten to the point that I can talk myself through them. I keep popping those medrol tabs like they will save my life. When all I am really waiting for is that moment that things seem to be easing. Each time the foil behind one pops, I wince as it almost causes my middle and ring fingers to cross from synovitis and trigger finger.

    I still have not found the right rheumy to get me on a better path!

    Thank you for sharing this!

  13. SKRDad

    Early on in my learning to live with RA, my Rheumy and I had a long conversation about how “Pain-free” was no longer realistic. So from almost day one, I have known that getting used to is the only option. I do not allow myself to miss anything because of my RA. I have a full time job, three amazing kids and a wonderful wife… All count on me. So I keep putting one foot in front of the other and moving on. I absolutely believe that you can and to a certain degree must get used to it… A few months back, I coached my son’s soccer team in the middle of a full-on flare. I couldn’t really put my arms all the way down by my body and I couldn’t close my hands but somehow I got through with most people none the wiser… There are a few of my friends who I cannot fool but they do me the courtesy of not mentioning unless it’s just them and I. I don’t mind talking about it but I don’t want my team’s attention elsewhere other then where it should be…

    Be well, everyone…

  14. ac42

    I was very used to it…until the Enbrel worked and took almost all of it away for quite a while. I was ALWAYS in pain somewhere, mostly wrists, shoulders, knees, hands. Then, when I was pretty much pain-free for awhile, I started getting flares again, and it feels SO MUCH WORSE now that I have gotten used to NOT being in pain. Mind you, I’m fine with that because I’d rather not have the constant pain. The flares are pretty regular, and I can predict them based on my hormonal cycle at this point, but in between them I am mostly good, so I’m happy. It doesn’t take away the malaise or fatigue that still comes, but it’s not as bad. I can be thankful for the reprieves I get. I am so much better off than I was 5 years ago, even if I am 100 pounds heavier due to steroid use!

  15. Naomi Creek

    Good read:) I might not know your whole story RA Guy but wondering why you are not on medications?

  16. Mombeenthere

    I too played the super parent syndrome for many years then realized I am only human and need my kids and spouse to respect my pain and what I have to do to cope. Right now the pain is so constant and bad that I had to retire from a job I loved and start taking pain meds chronically. This allows me to rest and then I can focus better on the real needs of my family while simutaneously being good to myself. My flares are still there in varying degrees just not has high up on the “pain scale”.

  17. Coopy

    I believe we MUST grow tolerant to a degree. The pressure put on our bodies would be overwhelming if we did not. I am considered at present to be in a severe inflammatory process which for 6 months now has shown unreal resistence to meds. I’m about to try a double cocktail to see if it will work. This post is absolutely worth sharing everywhere. It speaks volumes to not only your mindset, which I admire, but also the hard cold facts of all that is RA! Well done. Coopy

  18. Lene

    Terrific description of what it’s like to live inside a flare. Brought back some memories I don’t want to revisit.

    And oh, yeah. At a certain point, it just gets boring and you decide to move on. Of course, that’s only truly possible in moderate to semi-severe pain. When it really trots out the full orchestra, there is not much you can do except breathe through it.

  19. Wayney

    After being dx’d at 7, for the last 27 years not a day has gone by that I’ve not had some level of pain. The most pain free day I’ve had in that time was the day I had my son! Not many would think labor and delivery would lead to the day I had the least pain in as long as I can remember. But, my rheumy took me off of ALL meds cold turkey when we found out I was pregnant at 7 months. The next two months were horrible from a pain stand-point. It’s no wonder my BP skyrocketed and they dx’d me as pre-eclamptic and decided to induce my labor. 3 hrs after they began the induction, my OB decided to break my water. 45 min or so later, she didn’t even give me a choice but said “I am giving you the pain meds now. You need them.” I didn’t tell her this, but those were some of the happiest words she’d said to me. Within 15-20 min of them pushing the Stadol through my IV, I felt more focused on the birth process and not so clouded by all the other pain that had stayed at a level of 7-8 for the months I had no meds. Why the rheumy did that I do not know, after 7 months of being on meds while pregnant, it was harder on both me and the baby for me to be off of the meds. Labor and delivery was nothing compared to some of the day in day out pain I have had. The day after I gave birth, my dr entered the room on rounds and looked at me, looked at the chart in her hands and looked confused. She commented that I looked so different from the day she met me that it was as if I was another person. I told her part of it was that in giving me pain meds, she reduced the awful pain I’d been in for those months without meds by so much that I was my normal self. Thankfully, my son was deemed to be one of the healthiest children his pediatrician had seen in a long time, especially given my med use and lack of prenatal care.

    I now have my pain decently controlled but know I’ll not be pain free. Even if they were to cure RA in the near future, I’ve had enough damage that the pain would still be there. I said it somewhere else today, but one of the best things a doc has EVER told me was that he couldn’t take my pain away 100% but he could reduce it enough that I could deal with it. I am glad he was so honest with me. In so many ways, I am thankful for the pain since it has taught me quite a bit.

  20. Lyn Burnstine

    As a young wife and mother dealing with the pain of RA 55 years ago when there was little available to help, I decided I would learn to live with some pain rather than be a zombie. My philosophy was to take just enough pain meds to make it bearable, but not enough to change who I was as a person. I still live that way, although, thank God, my pain levels are so much lower with a cocktail of all the great new meds now available–DMARDS, NSAIDS, and biologics–none of which were around 55 years ago.

    Even so, there is always a low level, and despite many surgeries, my hands and back are destroyed by the disease process and will always hurt.

  21. Carolun 'Lyn' Smith

    Have to say as someone who has lived her entire life w/some level of pain,of course you can! It’s the one & *only* advantage I can think of to having never been what most others would consider ‘normal’ mostly medically,pain levels speaking. Really though, I don’t have anything to use as a frame of reference, living with pain not *in* pain just *is*. Also remember, a flare is NOT *chronic* pain,it is *acute* pain actually “an acute (new/sudden/sudden onset) exascerbation of a chronic condition(pain) ” by medical/nursing definition. Glad to read you’ve come to a place of peace& acceptance of your new ‘normal’. Keep flying high RA Guy,your words help & inspire more than you know! Wishing you a less-pain day ;~D

  22. Elaine Tompkins

    I too live in pain every day, although I have not been diagnosed as of yet. Living in Florida is a challenge! This time of year, the weather is constantly changing. One day it’s cold and the next is in the 70’s. When the “snowbirds” are here (which is about 6 months), they fill the doctors offices and then you have a 3-4 month waiting period to see a doctor or some kind of specialist.

    The one who started this site is my best and closest friend, who I consider my “sister”. Even though we live miles apart now we still know what each other is going through. I never realized how many people live with RA! After seeing 4 neurosurgeons for all the problems with my spine, 3 pain management doctors for my spine and my joint pain, a physiatrist(who knows what they do, but he didn’t do much for me), and my friend hounding me to go to a rheumatologist, I finally have an appointment for the end of February to see a rheumatologist! I must say that, after all the doctors I have exhausted, and there are more than I mentioned, I don’t have much faith in the doctors in this state. These doctors are so busy with all the retired people that move here or come for the winter months, that the quality of your medical care leaves so much to be desired! I keep pushing through every day, doing my job, trying to advocate for myself by finding a doctor that will be proactive with my medical needs, and listen to what I’m telling them about how my body feels and what I’m going through. I can’t even tell you how many primary care doctors I have seen because no one wants to listen! A person knows their own body and what they’re going through. I’ve yet to find a doctor here that practices the art of “listening” and then being proactive! I know what it’s like to live in pain every day, to have your whole body hurt, and have to keep plugging away like nothing is wrong. People at work tell me I look good, but little do they know what I go through on a daily basis on the inside. In some ways I’m anxious to find out what is going on with me and in other ways, I’m a little apprehensive about finding out, especially reading what all of you go through, and hearing my “sister” talk about everything she is going through; but I can’t keep living like this. Whatever this is, it feels like I’m getting worse by the moment. I know I must find out what is wrong so I can finally have proper medical treatment (if that’s even possible here in this state). God Bless you all!

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