I’ve had it for years. It kept me awake for three solid weeks in the beginning. Meds couldn’t put me out until I was given cyclobenzaprine which may not work for everyone. You do best if you keep your weight down. But when you eat, the endorphins relieve the pain for a little while.
Cat and dogs together if the cats allow it. Right now, my cats allow the dogs to lay their heads on the bed, but if a single paw comes up on the bed the cats go scorched earth on their muzzles. The sound is that of a cat wailing on whining congas. It’s funny, but it’s not as fun as having all my furry babies on the bed with me. I’ll have to spring for a California King sized bed so that they can use me as their DMZ.
I’m also a member of this club that no one wants to join. 30 years in September!Anything that might help my pain is not allowed.
I don’t think many doctors -maybe just a handful- understand or empathize with chronic physical pain.
I’m curious about how/why it began for other sufferers, as I’ve talked to many over the years and the answer, for what started it, can be anything from a car accident to “No idea”.
In my case, I was exposed, at work, to stachybotrys mold (black mold), which was in the walls and under the carpet of my office at work. Probably worse, the black mold filled the a/c above my head, blowing air into my face all day long. The a/c had not been cleaned in 35 years. 🤯
I’m still looking for answers, fighting, but, as you all know, it’s very, very hard.
I love your poem…fibromyalgia is so painful…I’m grateful you shared your shocks about the surges of this disease…and yes, it feels like lightening shocking your entire being and hijacking your clarity in the process…I love the verve of your verbiage. May it continue to fuel your fight! 🫶🏻💪🏻🫶🏻
That’s an interesting poem. I’m sorry for the pain you’ve been through. I have fibromyalgia too, along with some other conditions. I know it can be very tough.
Get checked for Lyme disease. It can be the underlying cause of many diseases. It is known as the great imitator. ILADS (International Lyme and Associated Diseases Society) has a lot of info. Go to https:/www.ilads.org.
15 years since diagnosis, but suffered for far more years than that. 67 years old. Probably brought on from a severe case of mono at age 7. It’s a lonely illness, it isolates you, and what works today for relief may not be true tomorrow. My heart goes out to everyone who is unwillingly on this journey. Thank you, Nick, for your beautiful words.
I’m in the club, too. This poem really spoke to me. Feeling out of control, not knowing when pain is coming or easing, feels being on a pain rollar coaster…. And then there’s the actual pain. Sick of it all. I did feel a sigh of relief from your reminder that I’m not alone. That is comforting. Take care of yourself and each other.
This!! I have fibromyalgia (nerve) pain in my knees thru my toes 24/7. I’ve been taking Gabapentin, 3600 mgs a day for years. Every Dr I’ve seen just throws more Gabapentin at me, and I’m worried about the side effects.
DAMN. I feel this one. It’s been 20 years for me, and I can never make peace with it. Thank you for the poem, and I’m sorry you’re in this club.
I’ve had it for years. It kept me awake for three solid weeks in the beginning. Meds couldn’t put me out until I was given cyclobenzaprine which may not work for everyone. You do best if you keep your weight down. But when you eat, the endorphins relieve the pain for a little while.
5% lidocaine patches
Gabapentin (changed over to Pregabalin so I can use my brain and operate heavy machinery again)
Cyclobenzaprine
Diazepam
Venlafaxine
Course of LDN - Low Dose Naltrexone
Physical Therapy exercises
Stretching (that which worked for hockey and lacrosse still works)
Moist hot packs
Balls of various sizes and toughness to use for massage and trigger release points
B12
Gatorade any time I break a sweat for fluid and electrolyte replacement
Beamer therapy (IEMP - Intermittent ElectroMagnetic Pulse Therapy)
X39 patches from LifeWave
Indomethacin (NSAID)
Tylenol (APAP)
6” Memory foam mattress topper
CBD, CBDA, CBG, CBC, CBN and a little THC because that’s how organic chemistry works
Regular sleep/wake schedule
Afternoon naps
Caffeine
Hydroxyzine
Cats
I like that last one “Cats” — I’m not a cat person, so I’ll go with “Dogs” instead — yet I love it none the less 😂
Cat and dogs together if the cats allow it. Right now, my cats allow the dogs to lay their heads on the bed, but if a single paw comes up on the bed the cats go scorched earth on their muzzles. The sound is that of a cat wailing on whining congas. It’s funny, but it’s not as fun as having all my furry babies on the bed with me. I’ll have to spring for a California King sized bed so that they can use me as their DMZ.
I’m also a member of this club that no one wants to join. 30 years in September!Anything that might help my pain is not allowed.
I don’t think many doctors -maybe just a handful- understand or empathize with chronic physical pain.
I’m curious about how/why it began for other sufferers, as I’ve talked to many over the years and the answer, for what started it, can be anything from a car accident to “No idea”.
In my case, I was exposed, at work, to stachybotrys mold (black mold), which was in the walls and under the carpet of my office at work. Probably worse, the black mold filled the a/c above my head, blowing air into my face all day long. The a/c had not been cleaned in 35 years. 🤯
I’m still looking for answers, fighting, but, as you all know, it’s very, very hard.
❤️ 🥰
I love your poem…fibromyalgia is so painful…I’m grateful you shared your shocks about the surges of this disease…and yes, it feels like lightening shocking your entire being and hijacking your clarity in the process…I love the verve of your verbiage. May it continue to fuel your fight! 🫶🏻💪🏻🫶🏻
I have fibro too. It’s truly no joke. I’m sorry you are facing it. 😔
That’s an interesting poem. I’m sorry for the pain you’ve been through. I have fibromyalgia too, along with some other conditions. I know it can be very tough.
Get checked for Lyme disease. It can be the underlying cause of many diseases. It is known as the great imitator. ILADS (International Lyme and Associated Diseases Society) has a lot of info. Go to https:/www.ilads.org.
15 years since diagnosis, but suffered for far more years than that. 67 years old. Probably brought on from a severe case of mono at age 7. It’s a lonely illness, it isolates you, and what works today for relief may not be true tomorrow. My heart goes out to everyone who is unwillingly on this journey. Thank you, Nick, for your beautiful words.
I’m in the club, too. This poem really spoke to me. Feeling out of control, not knowing when pain is coming or easing, feels being on a pain rollar coaster…. And then there’s the actual pain. Sick of it all. I did feel a sigh of relief from your reminder that I’m not alone. That is comforting. Take care of yourself and each other.
This!! I have fibromyalgia (nerve) pain in my knees thru my toes 24/7. I’ve been taking Gabapentin, 3600 mgs a day for years. Every Dr I’ve seen just throws more Gabapentin at me, and I’m worried about the side effects.
Has anyone gotten any other treatment that works?