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A pain free day? What the heck is that?

A Pain-Free Day? What the Heck is That?

One thing my friends and family struggle to accept is that I never experience a pain-free moment or day. Many assume that I am pain-free when my psoriatic arthritis is in remission or that my psoriasis is under control or not an issue if they don’t see a rash. I have no idea if that is even a possibility since they are not my only conditions. Within a three year period psoriasis, fibromyalgia, psoriatic arthritis, and endometriosis became a part of my everyday life. Permanent damage from surgical errors added to my pain filled existence a few years later.

Pain is constant

Every single day is filled with pain from one of or a combination of my conditions. Some days I can clearly state which disease is at its worst because of a particular symptom. For example, if I feel like my belly button is being ripped apart I know that abdominal adhesions from endometriosis are to blame and not psoriatic arthritis. Trying to differentiate the cause of some symptoms is harder because some of my conditions have overlapping symptoms. I never experience one symptom from one condition at a time.

Finding joy in a low pain day

I have lived with physical pain for so long that I truly no longer remember what it feels like to be pain-free. At first, I found this to be depressing, but over time I realized that it is actually for the best. Because I can’t remember what it is like to be without pain, I am able to find joy in a lower pain day. Prior to losing this memory, my anger and depression over a low pain day was as intense as a severe pain day. Now I cheer when fewer symptoms are presenting themselves. I don’t mind having to use my wheelchair on a day when my feet ache too much to walk if not experiencing abdominal pain will mean that I am able to sit up.

Do you remember what it was like to live without pain? If you do, how does it affect your attitude when you experience a lower than usual pain day? If you don’t, does it help or do you wish you could remember what it was like?

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

  • grandma
    5 months ago

    I soooo agree with the above author. I have lived with chronic pain daily from Fibromyalgia; low back pain; shoulder pain, etc, I do not remember when there was an hour much less a day without pain. I have come to the realization it’s the way of life for me and have accepted it. If I don’t, I would be depressed all the time.

  • Cindysue04
    7 months ago

    This article is so me. I was just diagnosed last year but it feels like it’s been years because of the constant pain
    I have a hard time remembering when I had a pain free day
    But like you, I rejoice when I have a less painful day. Accomplish ing something you just never finished helps to redirect your pain.

  • mlc470
    8 months ago

    Hi, yes I don’t have many choices where I currently get care. I’m going to ask to go outside my insurance coverage. The RA doc I saw didn’t ask me the questions on the material you had referred me. Thank you for those! When I was in a complete break down, she actually got a knock on the door and left me, that being said, when she finally came back my shoes and coat were on, I was ready to go.

  • mlc470
    8 months ago

    I haven’t been on here very long, nor have I been diagnosed officially. In the long long process. While my body keeps failing me. I haven’t had a pain free day since 2009. First diagnosed with fibromyalgia, then in 2015 chronic neck pain. Year later, torn meniscus, chronic pain in both knees. I’m heavy set now, a lot gets put on that. Year later low back, MRI done, significant trauma. Sometimes feel I’m having back labor all over again. 5 months later, partial torn Achilles, chronic tendonitis. Some skin issues, scalp scabs, rashes, severe toenail stuff, test show no fungus.

    So this past week asked again for a dose of prednisone, it had helped about 40%. Mostly with the stiffness and some swelling. My relatives noticed right away, WOW! you sound and look great. If they only knew, yes it has helped, but still have pain and fatigue that never ends. But I take this small victory for as long as it will last and hope it will last a little longer……

  • MamaPercy
    9 months ago

    This fall after being on mtx for 3 weeks I finally started to have some relief, I always hated fall because it meant more aches and pain because of the changing temps. I loved fall this year the colors, the brisk air, the sun warming me when it shined. We had a bonfire almost every weekend so I could sit out and enjoy my family and friends. Low pain days are days I look forward to!

  • constantpain
    9 months ago

    I have not been diagnosed with psoriatic arthritis, but everything I’ve read on here now has me 100000000 percent sure this is my ailment. The only thing that does not fit is that I only have one tiny spot on my scalp that is about the size of a nickel that breaks out every so often and it flakes up and I put neosporin on it and it usually goes away after a few days, but I wake up EVERYDAY WITH MY ENTIRE BODY FEELING LIKE IVE BEEN RUN OVER BY A MAC TRUCK. Is this normal?????????

  • mlc470
    8 months ago

    I’m in the same predicament, was told since I don’t have psoriasis on my body, I can’t have psoriatic arthritis. Sometimes my skin issues are not there, sometimes they are. I always have nail issues, yet all the doctors, RA, provider and dermatologists have said they are fungal. Though 2 tests so far, have come back non fungal. I just don’t understand it. So next we are repeating test plus 2 more. If I survive that long! Lol.

  • Eileen B moderator
    8 months ago

    Sorry to hear you’re struggling so much and living without an “official” diagnosis, @mlc470. I thought you might like to read this article on a path to the right diagnosis, https://psoriatic-arthritis.com/living/path-to-right-diagnosis/ and Leanne’s tips on getting the correct diagnosis at https://psoriatic-arthritis.com/living/psa-and-finding-the-right-diagnosis/.

    One of our contributors was diagnosed with PsA as a child without having psoriasis. And she’s an adult now and still hasn’t had any skin issues! She wrote the article, ‘Psoriatic Arthritis Without Psoriasis’ at https://psoriatic-arthritis.com/living/psoriatic-arthritis-without-psoriasis/. Also, many are surprised to learn PsA develops before psoriasis in 10 to 15% of cases.

    Have you ever considered getting more medical opinions? If so, the National Psoriasis Foundation might be able to help you find top providers in your area, more info at https://psoriatic-arthritis.com/living/even-experts-need-help-sometimes/.

    We can never can have too much help, right? -Eileen, Psoriatic-Arthritis.com Team

  • CathyD moderator
    9 months ago

    That’s not good, @constantpain 🙁 I am sure many here can relate to your description of how you feel when you wake up. Have you been able to see a doctor about your symptoms? If not, it may be worth asking for a referral to a rheumatologist. Here’s some information on the diagnostic process: https://psoriatic-arthritis.com/how-doctor-diagnose/

    With regards to psoriasis, the severity of psoriasis does not necessarily always match the severity of the psoriatic arthritis. In fact, it is possible to have PsA without any psoriasis at all! I know that we have a number of people in our community who have minimal psoriasis but rather severe PsA symptoms.

    I hope you’re able to get some answers and relief very soon. Do keep us updated and stop by anytime you need support!

    -Catherine, Community Moderator

  • nojohn
    9 months ago

    Pains and aches. Rashes and bleeding. Itching and depression is a dayly reminder that even tho it sucks. I am alive.

  • judith
    10 months ago

    Thanks for sharing. I also know what living in pain everyday is like. I have PSA and have just started Taltz. Hopefully my pain will ease as it’s certainly not fun to be in pain every minute of the day.

  • John4ns
    10 months ago

    I can’t remember a completely pain free day, but I am very thankful that most days are rated as being uncomfortable. Most of my flares happen in the evening or during the night where I can quickly get to the prednisone and get it calmed down. 2.5mg taken early in the flare works wonders.

  • Rackmani
    12 months ago

    Great article. You can sense how much it has resonated with psoriatic arthritis sufferers as so many replies.
    I love the comments re how much one begins to take joy in the simple things like relatively pain free moments and nature.
    You have to kind of let the pain be part of you and have as many self management strategies as you can; but all that can go out the window during a flare.
    Then just before you think you’re going to give up you get a remission like; the disease is playing tricks on you. I now try to enjoy those periods as best I can and keep active as I can, try to eat well, avoid alcohol and get enough sleep.
    I’m going to try out Tumerix next. I’ve started taking vit D too as heard that might help from the recent Webinar……

  • WoodchuckR
    12 months ago

    THANK YOU. The title and illustration immediately hooked me in. I’ve been earning less than a passing grade trying to communicate this. Even my favorite doctors tilt their head…when I say, “Pain. Does. Not. Stop”. I get that head tilt… like my dog when she doesn’t seem to get it. It seems more believable for my family and friends to hear truths like this from a source other than me. So, thank you!

  • Rojo
    10 months ago

    Thank you for the “head tilt”. I love it! Twenty years before my formal diagnosis I would get that all the time when trying to explain the crippling pain that vanishes the next day. Or the alternative Dr Evil analysis (little finger to the lips), “Riiight”.

    These days that happens less with doctors but more with family and friends. f+f’s seem to be more comfortable accepting the idea of a lingering pain in the same general area. Not so much with this pain that moves around like a sightseeing bus.

  • Rebecca moderator
    12 months ago

    Awww, you just made my day 🙂 Hope today is a less-painful day for you, WoodchuckR!

  • pbarry23
    1 year ago

    I too don’t know what pain free living is like. I have PsA, fibromyalgia and some PsO.
    I still feel sorry for myself some days. I understand what you’re saying about not being able to differentiate between which disease is which pain.
    The middle of the afternoon it is about my lowest pain point of the day usually. So I’m pretty good at planning around that now. But it’s hard for people to understand that just going out to lunch takes every bit of energy and requires a nap or at least rest.
    This may not be the forum, but I will say that the best treatment I have found for pain so far is medical marijuana. On those days when I can’t control my pain I know I have an out with the medical marijuana.
    I wish everybody a great pain-free day.
    Pattie

  • CathyD moderator
    1 year ago

    Thank you for taking the time to share, @pbarry23. I can relate to a lot of your thoughts. I think it is natural to feel sorry for ourselves sometimes, especially when you consider everything that a person with PsA has to cope with.

    We’re so glad to hear that you have found some relief with medical marijuana. How long have you been using it for? Our lovely Cynthia has written quite a few articles about how she uses MMJ to manage her symptoms; here is a great one: https://psoriatic-arthritis.com/living/medicate-medical-marijuana/ Let us know what you think! 🙂 -Catherine, Community Moderator

  • Beth V
    1 year ago

    I’ve been in constant, chronic pain for about 30 years, my PsA was diagnosed about 11 years ago. The only time I remember being close pain free was once when I had a Remicade infusion, then 2 weeks later had spinal injections. I had a couple days when I was at a 1 or 2. I almost think it made it worse when the pain returned.

  • Boedica
    1 year ago

    I do remember the pain free days but it’s18 years ago since this started. So it feels to me like it was another lifetime, that it’s a different me then and I’m now this me. People and family I now know didn’t know the old me, I sometimes forget and they look puzzled when I talk about my Irish dancing and hill walking I did and the running etc etc. I feel a lots all of a sudden from putting that on here. I miss the old me, the one that could do an extra shift if I needed stuff for the kids. Or go for a run of I felt down.
    But then I’m so much more chilled now, I’ve learned life is what it is. That life is special and enjoying the moment is so important. I’ve learned to do craftwork which brings pleasure to myself and family and others.
    My spiritual beliefs have changed, I’ve been able to appreciate the beauty of trees by taking time to sit and look at them, to really see them. Whereas before this I simply walked past thinking that one day I’ll do a painting of that! I’ve learned that the Earth is very precious and we are part of that. When I meditate on trees, flowers and water etc I’m not in my pain, I’m in the moment. When I see my grandchildren I see their special ways and the miracle of human life.
    I could go on, but this will do for now. Don’t want you to think I’m a wonderful person that has it all worked out cos I don’t. I also have times when I feel I just want to chop my legs off and the thought of just sitting in a wheelchair instead of fighting this appeals greatly. I know that day will come, but for now I can walk a little.
    Anyway, my low pain days are great, I can smile for real and even forget that I have pain, until I stand up , then I remember! But it’s nice for a short while. Tramadol is my friend, I’m not able to take steroids as I get neutropenia from them, allergic to nsaids, oh what fun! So this is it! Cannabis helped but is illegal and I don’t want the high.
    So now at just gone 2am I’m going to try and get some sleep. I know I’ll be awake at four thirty to change position as I can only lay on my back or suffer badly for weeks with hip pain. But sometimes I get a four hour sleep, yay! Then I feel so good for the day and the pain is more bearable.
    How I haven’t done too much of a self pity party, not my intention. Just writing as I see it and feel it. I’m ok mentally about it now, this is what it is and I’m happy enough with my life.

  • CathyD moderator
    1 year ago

    Hi @boedica, we SO appreciate you sharing your thoughts and experiences with us.

    I can relate to people not knowing the old you, and missing what you used to be able to do. People I have met since becoming chronically ill are shocked to hear that I used to walk for two hours every day, and go swimming, play football, badminton, dance all night. The list goes on. It’s definitely an adjustment and these interactions with “new” people do bring up some mixed emotions.

    I really enjoyed reading about your appreciation of nature, and how it and your grandchildren bring you some peace. Similarly, I like to go and sit by the sea, look out, and listen to the waves coming and going. It’s so therapeutic.

    I do hope you managed to get some sleep that night – PsA is exhausting enough without the added sleep troubles!!
    – Catherine, Community Moderator

  • Eurotrekker
    2 years ago

    I truly can’t remember a pain free existence. Even as a kid, I hurt all of the time. I thought everyone did. . It wasn’t until I was in my late teens that I asked my mom whether or not there were people who didn’t have constant pain. She teared up because she was, for most of her life, without pain and didn’t realize I didn’t even know that was a possibility. Of course things got worse as I got older and new illnesses seemed to be diagnosed everytime I went to the doctor. I do remember once when they have me Valium and other pain blocking drugs just prior to having one of my surgeries. It was the first time that I experienced a pain free moment. My parents and other relatives said I was singing in the elevator going down for the procedure. I was so happy. That one glimpse of a painless existence made me think that that is what heaven must be like. Like you, I treasure those less painful days. I also try to cram as much life into those moments as possible, but usually pay dearly for it the next day (or 5). I find that it I can try to do something to help someone, even if it is only sending a card of encouragement, I feel better, because I’m not focused on my pain or limitations. I think what bothers me the most, is that I used to be very independent. Unfortunately, at times I have to be dependent on someone. Also, I feel kind of cheated out of my future. I had plans for my mid and senior life and it didn’t include spending much of my time at doctors’ offices.

  • psa-lms
    1 year ago

    So much of what you expressed rang true for me. I do know that heaven will be pain-free and I look forward to running and jumping again! With the mourning the future, I went through the mourning period when I was really discovering what life was going to be like, but I hit another one lately. This one was mourning the “new normal” sense of purpose I had found. The decrease in function took even that away. I wasn’t aware I could go through that sense of loss twice. It’s just another reminder of how fleeting this life is. Thank you for sharing!

  • VickiN moderator
    2 years ago

    Thanks for sharing this with us, @Eurotrekker. I know these words resonate with so many here. I hope you are managing okay today.
    -Victoria, Community Moderator

  • trixiepop
    2 years ago

    About a year ago when I tried amitriptyline, 2 hours of wonderful and then I slept. I would like to take this everyday if I didn’t feel so groggy on it.

  • jennyb
    2 years ago

    I have psoriatic arthritis and MS……I always have one pain or another and I don’t always know which is what. Pain free? hahaha

  • Boedica
    1 year ago

    Sounds pretty tough, I understand that PsA mosly goes in hand with other conditions and that’s a problem with the diagnosis. I don’t suppose most people know MS is painful, so must be hard for you.
    Laughing is all we can do to deal with it on a good day.

  • Koffegurl
    2 years ago

    I’m glad I don’t remember what pain free feels like, because I believe I’d be really angry and depressed. I do, however, remember WHEN I was last pain free. I had to start pain medication because we were out of procedures that worked. So…I started pain medications. I was 100% pain free for 5-1/2 months. I was doing a very physical job, and then came breakthrough pain. It’s been rough and tough ever since.

  • VickiN moderator
    2 years ago

    Koffegurl, just wanted to thank you for sharing. How are you coping these days?
    -Victoria, Community Moderator

  • Koffegurl
    2 years ago

    Thanks Victoria. Nice to see you again. Not well recently, but I’ve had worse. I’ve started volunteering with the American Red Cross which helps take my mind off of myself. I start Otezla soon and am very hopeful.

  • VickiN moderator
    2 years ago

    My fingers are crossed that the Otezla works well for you. What will you be doing at the American Red Cross? I agree that occupying our bodies/minds with tasks helps me cope as well.
    -Victoria, Community Moderator

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