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What do you do when you chronic pain flares- up and overwhelms you?
What do you do when you chronic pain flares- up and overwhelms you?
Do you just rely on pain medication or do you use gentle movement or exercise, mindfulness, talk with friends, TENS machine, massage, acupuncture, cupping, or soemthing else?
How do you keep your muscles strong and joints flexible, when your body is screaming in so much pain? Do you work through it, or does your body shut down to protect you because it's too much?
I have lumbar sacral spondylosis wiht radiaculopathy, cervical radiaculopathy, fibromyalgia and hyper mobility. So it's a combination of very painful neurophatic and neuroplastic pain, with muscle spasms, brain fog, IBS, and a range of other symptoms.
Iast night my coccyx -( tailbone) buttocks, hips and pelvis experienced so much deep burning and numbing pain, wiht pins and needles which radiated down my legs I passed out my body couldn't process that amount of pain. Also I was getting the same symptoms in my neck so that caused my shoulder, neck and head to wipe me out to.
When I woke up at 3.50am this morning I did very gentle stretches. Even now my muscles feel like they are bleeding, they feel cold, and the pins and needles aren't as intense as last night because I couldn't move to get my pregablin and I live alone. And I've tried training my cat, and she just tries to open my, meds and take them herself (joke) .. meow..ha ha....
It's a battle, but I don't let it beat me, I'm doing everything I can to stay mobile via gentle exercsie and currently having hyrdo therapy with a physio. I've had acupunture on the NHS, I do Yin yoga and Qigong to keep my body healthy- yes it hurts but I'd rather have a fit body with strong muscles to help support my skeletal frame and keep trim so they can't balme it on me being over weight as I weigh nine stone and I'm 5,6.
I'm curious to know what other people's coping stratergies are because I read so many people's stories on here who just want to give up and die. And I get it, I had those moments in the early stages of my diagnosis, when I didn't understand what was happening to my body. I read up on my condition to undertsand it and support myself. But with the support of two brilliant woman psychologists, who supported me and helped me get my mindset to a healthy and balanced place, and still check in with her once a month when I need that support and want to cry or scream.
Big love to eveyone on here living through such horrible pain! XX
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@insanepain I hear your frustration and your pain so deeply. The truth is, most doctors just don’t get it, mainly because medical training focuses heavily on clinical diagnostics rather than how chronic pain dismantles daily life and shifts your whole future.
Sometimes, many practitioners simply lack an understanding of complex, debilitating conditions. They rely on rigid 1–10 pain scales and clinical protocols because that’s what they were taught, completely overlooking the biopsychosocial model. They miss how heavily external, environmental, and social factors influence physical symptoms alongside physiology.
Your experience is truly real, and it's exhausting having to navigate a system that only looks at half the picture.
You know your pain is real!
You are not faking it!
I hope you have a good network of family and friends because you can't go through this on your own
Wishing you comfort, peace and calmer symptoms. 🙂
@mrmacabre I'm sorry to hear of your experience.
Did you get a sceond opinion in regards to getting some kind of treatment just to help manage the symptoms?
You might have checked these out already but incase you haven't, I've put some links here for you to check out about the condition and possible treatments:
https://www.foundationforpn.org/causes/idiopathic-neuropathy/
https://www.hopkinsmedicine.org/neurology-neurosurgery/specialty-areas/peripheral-nerve/idiopathic-polyneuropathy
Wishing you comfort and peace. :))
@mrmacabre 'And I've tried training my cat, and she just tries to open my, meds and take them herself (joke) .. meow..ha ha....'
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1 Reaction@calmmylife57 lol, thanks. Even though I am in constant pain 24/7 with highs and lows (like we all have), I try to always stay calm, have a straight face even with a pain at level 10+, and still joke around. I never lash out at anyone and try to have a good day every day. Wishing everyone peace and hopefully a cure someday for all of us.
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1 Reaction@insanepain Sometimes it's easier said than done.
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1 Reaction@calmmylife57 Between the 4 neurologists that I ended up seeing, along with my GP of almost 30 years, I've had every test out there, some of them multiple times. Everything just comes back "normal", whatever that means. The only thing that helps dull the pain, not relieve it, has been massive doses of Gabapentin, along with ALA.
I haven't had a pain free day in the last 15 years.
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2 Reactions@mrmacabre. Someone said their cat try to take pills when they had the cat bring pills.
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1 Reaction@debelli it's a joke..ha ha .....(do you seriously think my cat can carry pills? ha ha )
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1 Reaction@mrmacabre I hear you, I feel you, I pray for you!
I also have been living in pain 24.7 for 13 years and it's getting worse, but like you I joke around.
I was dancing to some RnB in my living room the other day with the tears streaming down my face, it's better than sitting or laying there feeling sorry for myself. Music releases those happy endorphines! So I dance, even when the pain is killing, I could be in my bed, laying on my back and dancing in my bed!
Life is for living, even with this unforgiving PAIN........
Peace! :))
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5 Reactions@mrmacabre I find just having support, someone to talk to, or to engage in activities with other people helps, so maybe use the links for support purposes.
Anything that helps us manage on good days and bad days is a bonus.
But if you like that time to yourself, that's ok. But please don't isolate yourself.
As the saying goes 'it tales a village to raise a child' , whole navigating chronic pain and illness we need the support from the village too!
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