I was diagnosed with Fibromyalgia when I was 28 years old.. I’ll be 47 in October, so I’ve been living with this storm almost 20 years. Some days, just the depression alone from not feeling like a normal person, creeps in, and I feel worthless. I don’t know how to make ppl understand what I go through. I’m just supposed to suck it up and tough it out 😢 because there’s nothing visibly wrong with me. I just gave you a follow! Thank you for sharing your journey!!
Tabitha, I’m familiar with the scenario you describe—just know you are NOT alone, even in those times of depression. It’s so hard to accept this different version of ourselves. It’s been 20 years for me too, and some people will never get it because honestly, they don’t want to. Or they see it as competition for their problems.
Avoid those people like the plague.
I have to do so much self-talk when it’s bad—I’m the mother to myself I need, reassuring and nurturing.
We have to express ourselves some way in our frustration, which is what Nick does with his poetry—so I feel a kinship with Nick because he gets it.
Thank you so much for your kind words. I definitely needed to hear all of that! If you don’t mind, I’d like to give you a follow as well. Just having ppl who understand and can relate helps so much!!
I have Late Stage Neurological Lyme, severe Spjnal Stenosis and Spondylolthesis. I can relate to your incredible poem. I hope you are able to feel some reprieve soon.
Every fibro sufferer likely has one or two “tricks” for keeping some pain at bay. In case it can help anyone at all, I found that the combination of Aleve and Zyrtec D (probably bec of the cetirizine hydrochloride) could sometimes reduce my pain significantly.
After 4 decades of pain I learned I have Ehlers Danlos because my pain management Dr spotted a ganglion cyst on my ankle. I owe so much to him, for spotting it. When I started to read about it, I just cried. It explained why my whole life had been consumed by so much pain.
Do I still have fibromyalgia? I don’t even know, since there doesn’t seem to be consensus about whether it is a stand-alone condition or symptom/manifestation of other conditions. In my experience, the latter seems likely.
I am devastated to read about people unable to get relief.
I have just started taking Journavx, which is a non-narcotic pain reliever for peripheral nervous system pain (vs CNS). In my case, it is helpful.
Your poem struck a chord with me as did the comments. I’m 72 and I have fibromyalgia, arthritis and spinal stenosis. Barometric pressure drops when storms come in are brutal. Thanks Nick for your excellent poem and for making me feel less alone.
Karen, I’m saddened you are a part of this community and at the same time gladden that you are here with us. Be strong my cousin-in-pain, we are never alone (even when we feel it the most).
Hello I’m also in Pain Psoriasis Arthritis -Starting in Biologic Tremfya 2 months ago .
I have a pain Management Dr .PT Helps too .If you like Utube has a lot of PT specialists specializing in various conditions .. me multiple conditions so I use different types.
I'm still battling a slipped disk. My left buttocks from "hip to toe andbtoevto hip" and up and down my back. 13 days and 2 trips to ER. Battling Medicaid, too. Arrgghh. It's getting better and I feel for you and others with fibro with no real cure in sight 😭 what else can be said as I find myself holding my breath again and it doesn't help matters. I can almost walk upright today but it's painful.
I was rolling around in my bed last night questioning if I really took my pain medication. “Yes, I know I did; I remember doing it! Why then do I hurt so badly? Did it stop working? Has my body stopped responding? I don’t want to increase my dosage. This is the best pain medication I’ve ever been on. Nit works great! Why then isn’t it working?”. This internal dialog went on. I got up, got in a hot shower. FINALLY got to sleep and woke up in agony a few hours later. I looked at the clock, yes! It’s time to take my medication again. Maybe it will work better this dose. I reluctantly get up hoping moving around a bit will help. It wasn’t until I hit the kitchen where the blinds were open that I noticed storms had rolled in. Instant recognition of the “why” of my misery!
Have you guys tried Kratom? My son had chronic pain from a car accident and back surgery and they had him on pain meds for quite a few years but he wanted to live without them so quit and after about a year of working and hurting so severely and no relief in sight, we stumbled on a bill that Congressmen Mark Pocan of Wisconsin was fighting to keep Kratom legal. It’s about the only natural herb that does work on pain. My son has been using it for seven years now. Nothing else and he’s gotten married, works a very manually exhausting job but loves it and can live a normal life with chronic pain without (prescription) pain pills.
I hate to hear that someone is dealing with fibromyalgia. It is a long, lonely journey. Mine was diagnosed 40 years ago, when only rheumatologists believed it was real. My rheumatologist ordered me to go to support group meetings, he said he would know if I didn’t show up because his wife was the facilitator 🤭 It does help to realize you are not alone, that someone else validates you. We were taught that “I’m fine” means Frustrated. Irritated. Nothing works. Everything hurts. Mediation teaches to embrace, embrace the pain, explore it, and while I didn’t believe the message at the time, yes, you do get used to the pain. It didn’t take 40 years to learn. I accepted the message that if you just do one thing, you should be proud of your perseverance. I found that it hurts just as much to sit/lie as it does to move - moving is an accomplishment - it helps the mindset, you can tell yourself you are NOT useless. It is a distraction. You are stronger than you think you are, you are worth more than you know. You are justified to feel what you feel. Your thoughts, your poetry are strong enough to lift us up - Thank you ❣️
Robert, thank you for sharing and adding your story to mine. I’m immensely thankful that you have been freed of this pain thus far—I wouldn’t wish this on anyone—and I appreciate knowing that stories like yours do happen. It lifts a little worry from my mind and offers a little solace, maybe even a subconscious hope.
Thank you, Robert—and I’m glad today’s poem resonates with you 🫶🏼
This stupid disease, and all the associated secondary symptoms, suck don’t they? I wrote this in response to a huge storm that blew in yesterday into Arkansas…it messed my entire evening up, leaving me in a blinding pain. I hate it so much, yet I’m not going to let it win. I know you are a cousin-in-pain, I share my empathy with you through all of this.
Let’s stay strong, together and visible, Carollynn! We are not alone.
If I remember to check, inevitably the barometric pressure had just done a big swing either up or down at the moment the pain began to hit. It’s insane—especially since I can’t even make money from my talent…
I was diagnosed with Fibromyalgia when I was 28 years old.. I’ll be 47 in October, so I’ve been living with this storm almost 20 years. Some days, just the depression alone from not feeling like a normal person, creeps in, and I feel worthless. I don’t know how to make ppl understand what I go through. I’m just supposed to suck it up and tough it out 😢 because there’s nothing visibly wrong with me. I just gave you a follow! Thank you for sharing your journey!!
Tabitha, I’m familiar with the scenario you describe—just know you are NOT alone, even in those times of depression. It’s so hard to accept this different version of ourselves. It’s been 20 years for me too, and some people will never get it because honestly, they don’t want to. Or they see it as competition for their problems.
Avoid those people like the plague.
I have to do so much self-talk when it’s bad—I’m the mother to myself I need, reassuring and nurturing.
We have to express ourselves some way in our frustration, which is what Nick does with his poetry—so I feel a kinship with Nick because he gets it.
I’m sorry you’re dealing with it so young…
Thank you so much for your kind words. I definitely needed to hear all of that! If you don’t mind, I’d like to give you a follow as well. Just having ppl who understand and can relate helps so much!!
It does—chronic pain is an isolating mofo.
I have Late Stage Neurological Lyme, severe Spjnal Stenosis and Spondylolthesis. I can relate to your incredible poem. I hope you are able to feel some reprieve soon.
🥹🥹 so true. Empathetic with all the sufferers from debilitating illnesses that cause chronic pain ...
❤️🩹❤️🩹
Every fibro sufferer likely has one or two “tricks” for keeping some pain at bay. In case it can help anyone at all, I found that the combination of Aleve and Zyrtec D (probably bec of the cetirizine hydrochloride) could sometimes reduce my pain significantly.
After 4 decades of pain I learned I have Ehlers Danlos because my pain management Dr spotted a ganglion cyst on my ankle. I owe so much to him, for spotting it. When I started to read about it, I just cried. It explained why my whole life had been consumed by so much pain.
Do I still have fibromyalgia? I don’t even know, since there doesn’t seem to be consensus about whether it is a stand-alone condition or symptom/manifestation of other conditions. In my experience, the latter seems likely.
I am devastated to read about people unable to get relief.
I have just started taking Journavx, which is a non-narcotic pain reliever for peripheral nervous system pain (vs CNS). In my case, it is helpful.
Your poem struck a chord with me as did the comments. I’m 72 and I have fibromyalgia, arthritis and spinal stenosis. Barometric pressure drops when storms come in are brutal. Thanks Nick for your excellent poem and for making me feel less alone.
Karen, I’m saddened you are a part of this community and at the same time gladden that you are here with us. Be strong my cousin-in-pain, we are never alone (even when we feel it the most).
Hello I’m also in Pain Psoriasis Arthritis -Starting in Biologic Tremfya 2 months ago .
I have a pain Management Dr .PT Helps too .If you like Utube has a lot of PT specialists specializing in various conditions .. me multiple conditions so I use different types.
I'm still battling a slipped disk. My left buttocks from "hip to toe andbtoevto hip" and up and down my back. 13 days and 2 trips to ER. Battling Medicaid, too. Arrgghh. It's getting better and I feel for you and others with fibro with no real cure in sight 😭 what else can be said as I find myself holding my breath again and it doesn't help matters. I can almost walk upright today but it's painful.
I’m right there with you about the pain that never ends
but when it does and we breathe a sigh of relief
Only to have it start again. 💕
Thanks for sharing your poem,Nick.
I was rolling around in my bed last night questioning if I really took my pain medication. “Yes, I know I did; I remember doing it! Why then do I hurt so badly? Did it stop working? Has my body stopped responding? I don’t want to increase my dosage. This is the best pain medication I’ve ever been on. Nit works great! Why then isn’t it working?”. This internal dialog went on. I got up, got in a hot shower. FINALLY got to sleep and woke up in agony a few hours later. I looked at the clock, yes! It’s time to take my medication again. Maybe it will work better this dose. I reluctantly get up hoping moving around a bit will help. It wasn’t until I hit the kitchen where the blinds were open that I noticed storms had rolled in. Instant recognition of the “why” of my misery!
Have you guys tried Kratom? My son had chronic pain from a car accident and back surgery and they had him on pain meds for quite a few years but he wanted to live without them so quit and after about a year of working and hurting so severely and no relief in sight, we stumbled on a bill that Congressmen Mark Pocan of Wisconsin was fighting to keep Kratom legal. It’s about the only natural herb that does work on pain. My son has been using it for seven years now. Nothing else and he’s gotten married, works a very manually exhausting job but loves it and can live a normal life with chronic pain without (prescription) pain pills.
I love your poems and thank you so much for sharing. I also have chronic pain.
I hate to hear that someone is dealing with fibromyalgia. It is a long, lonely journey. Mine was diagnosed 40 years ago, when only rheumatologists believed it was real. My rheumatologist ordered me to go to support group meetings, he said he would know if I didn’t show up because his wife was the facilitator 🤭 It does help to realize you are not alone, that someone else validates you. We were taught that “I’m fine” means Frustrated. Irritated. Nothing works. Everything hurts. Mediation teaches to embrace, embrace the pain, explore it, and while I didn’t believe the message at the time, yes, you do get used to the pain. It didn’t take 40 years to learn. I accepted the message that if you just do one thing, you should be proud of your perseverance. I found that it hurts just as much to sit/lie as it does to move - moving is an accomplishment - it helps the mindset, you can tell yourself you are NOT useless. It is a distraction. You are stronger than you think you are, you are worth more than you know. You are justified to feel what you feel. Your thoughts, your poetry are strong enough to lift us up - Thank you ❣️
Robert, thank you for sharing and adding your story to mine. I’m immensely thankful that you have been freed of this pain thus far—I wouldn’t wish this on anyone—and I appreciate knowing that stories like yours do happen. It lifts a little worry from my mind and offers a little solace, maybe even a subconscious hope.
Thank you, Robert—and I’m glad today’s poem resonates with you 🫶🏼
This stupid disease, and all the associated secondary symptoms, suck don’t they? I wrote this in response to a huge storm that blew in yesterday into Arkansas…it messed my entire evening up, leaving me in a blinding pain. I hate it so much, yet I’m not going to let it win. I know you are a cousin-in-pain, I share my empathy with you through all of this.
Let’s stay strong, together and visible, Carollynn! We are not alone.
If I remember to check, inevitably the barometric pressure had just done a big swing either up or down at the moment the pain began to hit. It’s insane—especially since I can’t even make money from my talent…
So sad! The first of this kind of terror😞