Talking Bluntly about Night Time Chronic Pain

September is National Pain Awareness Month.

I have a chronic pain disease called Fibromyalgia Syndrome.

You can read what fibro is: here.

(This is a typical night for me. I describe it as follows.)

I think the hardest thing for a person with chronic pain is to tell you how they are doing. (Seriously.) You ask me how I’m doing… really? Let me start by asking you, “do you really want to know?” (Probably not, sometimes maybe?)

When you ask me how I am? “I’m fine.” (That’s a flat out lie!)

I’ve read a few posts where bloggers are addressing pain, chronic pain. They are describing what pain we face and what that looks like because September is Pain Awareness Month. My friend, Terri at Reclaiming Hope describes a typical morning for a person with chronic pain. Terri could have been describing my mornings. You can read her story: here.

I will tell you what a typical night feels like for me.

It begins at about 5PM. I get very tired and extremely agitated. My evening will be filled with aches, pains, and irrational episodic thoughts… I will question my worth in this world.

I try to stay out of sight as the early evening turns into the late evening. I know bedtime is coming and without something to keep my mind occupied, it’s going to be a very long and painful night. The clock says it’s bedtime, as I crawl in, it begins. Pain. Unrelenting body pain!

I may be successful in falling asleep on my own, typically not, then I rely on a medication for sleep. My ears feel full of pounding blood. My legs feel so heavy I want to get a knife and stab them until I feel relief! My hip feels like my leg has fallen out of the socket, and my lower back starts to spasm. But these pains are the easier ones to deal with… it gets much worse.

Are you still with me? Have I shared too much? It’s very possible you are bored or feeling somewhat miffed! After All, you are an intelligent person. You certainly can tell if another person is in pain. Well, I don’t look sick! I might look tired, but not sick. I am in real pain every single day.

The night continues, and by this time I have been up at least three times. So here we go again as the next symptoms have their turn with me…

My arms will start jamming up, causing shooting pain throughout my elbows, upper arms, neck, head, and shoulders. As I try to relax, I’m often jolted back into my harsh reality by shooting pain. I try to hold myself tightly as it feels like my body is being pulled apart by some malevolent being. This is very unsettling not to mention extremely (yes) painful!

After diagnosis, a few years into my illness, I became basically bedridden. At the beginning of my relationship with my future hubby, I would be awake about four hours a day. That was it. My normal. I could push through a day once in awhile. I made sure to spend that precious ‘awake time’ with Jeff. Then this disease turned upside down on me. I now get maybe a total of four hours of sleep at night. This lack of sleep causes me to lose days! I am mentally a train wreck and physically spent and in pain.

But. You ask how I’m doing?

“I’m fine.”

September is Pain Awareness Month!

51 thoughts on “Talking Bluntly about Night Time Chronic Pain

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    1. I don’t really think to the magnitude that one is affected daily. I think you can empathize. I believe you have tried to imagine it, and your very truthful about that. I’m grateful for it. But even reading my piece again, I can’t hardly imagine it because I’m so used to it… yes, you get used to being in pain. Constant, chronic pain.

      Liked by 2 people

        1. THat is a definite fear for more than you’d ever guess. Been sick so long, they think, what do I do now? Seems like that happened to you to. It must be like taking away a nagging two year old that you HAVE to attend to, then, the tantruming child is just gone. ???

          Liked by 1 person

  1. Like you, I’ve gone through varying periods of pain and symptoms. For now, I’m sleeping at night (though not sure why) and loving it. But there have certainly been months where I cried through the night and over a year where, like you, I was never awake. My worst pain periods come after lunch, for now. I think you did a great job explaining your pain, dread and restlessness, while also explaining that no matter how things vary, you’re pretty much always suffering. Great post, Kim! Hope you’re lovin’ life as a “hobo” 😉 and hope you find some relief soon!! ❤️

    Liked by 2 people

    1. Hello Stace! Yes, the symptoms from person to person are so different and vary incredibly through the years of this disease. But. We each know we have to handle whatever stage we go through and we keep fighting. I am exhausted! HA! No! Seriously. I really am tired of this disease. Take good care Stace!

      Liked by 1 person

  2. Thanks for sharing your pain story for Pain Awareness Month Kim. Did you leave your link on my post or would you like for me to? You’ve done a spectacular job of explaining how the pain really hits once you lie down. It’s such a contradiction because you’d think taking the pressure off your body would help, but it actually has the opposite effect. I’m so sorry you’re having such extreme pain right now – I hope it will at least subside to somewhat manageable levels soon for you. Blessings to you sweet friend!

    Liked by 2 people

    1. Hello Terri! I will leave it to you to link me up, wherever you feel it would best fit! I don’t want to over step with ‘my links’. (That’s about my only rule! HAHAHA). Yep, a lil’ relief would be most welcome but I am on my third month of this, looks like I’m in for the long haul for a bit. I’m figuring out when to medicate and when to just fight like hell to get where I’m going. It’s all good. Stupid Fibro. x

      Liked by 1 person

  3. I admire your constant positivity and regular enjoyable company in the face of such a painfilled challenge Kim! I can empathise with restless, painfull legs that feel like bursting and broken sleep that then necessitates almost daily naps in order to continue functioning but you have a whole lot to contend with!

    Liked by 2 people

    1. Thanks, Marie. I know it could be worse, could be better, BUT always could be worse. I am safe, cared for, loved, and content. I think that’s more than I ever could have wished for! Your exhaustion and restless, painful legs effect you as completely as all my symptoms effect me. There is just no winner in a pain game. This is pain awareness month. Those who want to speak out, need to. Soon our voices will be silenced if we do not. Pain Awareness!!! xk

      Liked by 1 person

  4. YUP–I hate being asked how I am doing. If I am too honest, it scares people off and I just sound whiny. Sigh. And can relate to so much of this too — nighttime is the worst time for pain. When pain flares in the evenings it is soo hard to truly get rest and nearly impossible to be ‘social’. And the less social and well rested I am the more I flare; and the more I notice a flare too. It’s an awful cycle!! Hugs to you ❤️❤️ and hoping for smoother nights ahead

    Liked by 2 people

    1. It is a toss up as to how to respond when asked! Don’t you hate it when you start telling someone and their eyes glaze over? Or worse, I had a viral infection and I couldn’t eat for three days! Wow. OK and what should I say now? But. I guess people try to connect and that really is OK. (This just happened to me in real life and I’m a bit stumped!😆) yep, I retreat and the flare begins to intensify. I have started to find hobbies I can do to keep my mind busy, that has really put a thorn in fibro’s side. In the evenings, IT cant have me either! At least mentally. Thanks so much! xk💜

      Liked by 1 person

  5. I can’t even begin to imagine the torment you go through every day. What kind of pain meds do you have to take? have you every tried medical MJ? I hear it is wonderful for pain, but your’s might be in a different category. Sorry you have to endure this

    Liked by 2 people

    1. Hello my friend. Funny, I was thinking your struggle was one I could not endure! Kind of turned the tables on me. 😊 I do take pain medication on an as needed basis, which realistically is all the time but with the opioid crisis, (STUPIDITY- its an addiction crisis not a pill crisis!) anyway, I can only take a pain med for 7 days, then off for 7 and etc. Thats what my pain contract says and I signed that stupid thing. And one doctor And one pharmacist And random UA’s… there’s more but isn’t all that enough? I was on MMJ for about a month. Got the card, paid the fee, went to the dispensary. Tried three kinds, horrible results. Damn it! My doc has told me not to give up, she believes there will be a day they cut off chronic pain patients from pain meds. My doc believes in Colorado! Like their options and has encouraged me to go… maybe when we RV? Don’t know. Minnesota’s program was not cool! It was a circus!😝k

      Liked by 1 person

      1. I forgot you are or will soon be living a nomadic life on the road. Colorado would be an interesting place to hang for a while,

        As for me? I have a lot of inconveniences to deal with and the symptoms do slowly get worse, but isn’t one of them. I am sure I’d be singing a different tune if it was. Either that or I’d be stoned all the time 🤪😜

        Liked by 2 people

  6. I had a hard time “liking” this. So extremely sorry you go through this; I can’t even imagine. I had a hard time sleeping the other night and I was SO mad about it. It was nothing. It cannot begin to compare. My heart goes out to you, sister!

    Liked by 2 people

    1. Thanks brother Tom! Although this situation SUCKS I don’t have to get up and go to work! You do!!! It’s ok to be pissed. Sleep is important! Bet it affected your whole day. This is why I believe there is a market for IV bags full of caffeine! 😂🤣😂 wouldn’t that be awesome?!?!

      Liked by 1 person

  7. I say, “I’m hanging in there.”
    I dont add, barely, by the edges of my fingernails as I hold tight to this “life”.
    I don’t lie. I’m hanging in there.
    I’m just not sure for how long.

    Your pain sounds horrific. I’m so sorry my friend. May your pain lessen and your sleep become more plentiful. Thank you for sharing you pain with us. Much love

    Liked by 2 people

    1. Hi Brigid! Awe. Thanks so much for your kind words. I’ve been fighting this for three months. I believe I am probably going to have to contend with this ‘new phase’ for awhile. My pain meds have been drastically cut. So… shoot Brigid, I hope my pain levels decrease soon. 😊💜

      Liked by 2 people

  8. Pain is an awful thing that too many of us deal with every single day of our lives. It doesn’t matter what you are going through in life, you are still stronger than you think. Kim, you are an inspiration to so many people and that includes me. I admire you!

    Liked by 2 people

  9. I hear you! I see you! I kept a really good pain diary to take to a rheumatologist appointment (UK so long waiting lists) and got initially confused as to why the doctor wasn’t especially interested. Well, she wouldn’t have been as I was actually attending a dermatologist appointment 🤦‍♀️🤦‍♀️😂 #brainfog 🤦‍♀️😂❤️.

    Great article btw ❤️

    Liked by 2 people

  10. I am so sorry that you have to live with chronic pain. Thank you for sharing. I’d like to share this article with you that actually gives bible principals we can use to help a d gives you a hope for the future. Hope this gives you some encouragement.

    Liked by 2 people

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