Chronic pain daily thread

[Kyrok]

I thought I'd give this a shot, as there are various other CP sufferers here.

Use this thread to vent, to recount your challenges, if you had a good or especially bad pain day, bullshit with pain docs, etc..

You might want to also introduce yourself by way of your medical issues.

In my case, scoliosis and thoracic outlet syndrome. I suffered through the day with a migraine because I took a bit too much pain meds yesterday (for some reason, after 15yrs, never built up any tolerance). That, however, kept me in bed all day, so pain never got above a 4/10.

Let's see how it goes.

 

[Darkhaven]

I assume we are talking about physical pain like joint or muscular pain.
I don't exactly have chronic pain, but i have a chronic and progressive disease that causes me to shake when i put muscular effort or movement in my limbs. It doesn't hurt but it's annoying, possibly debilitating and it greatly affects my sense of self worth, because it makes me feel like some weak ass loser who was diagnosed with a neurological disease in his early 20's.
The only thing that soothes my anxiety and depression is knowing that i have the power to destroy this stupid and miserable disease along with myself. It wont subsist if my body dies! Good!

 

[inconsequential]

It's a long list... yikes.

Degenerative disc disease in my thoracic and lumbar spine.
5 spinal cord impingements.
Inflamed granulation tissue.
Chronically inflamed rotator cuffs.
A connective tissue disorder exasperated by a medication I took once.
A bowel issue that causes pain.
Lung issues which also cause pain.

Everything hurts.

 

[Kyrok]

[

I assume we are talking about physical pain like joint or muscular pain.
I don't exactly have chronic pain, but i have a chronic and progressive disease that causes me to shake when i put muscular effort or movement in my limbs. It doesn't hurt but it's annoying, possibly debilitating and it greatly affects my sense of self worth, because it makes me feel like some weak ass loser who was diagnosed with a neurological disease in his early 20's.
The only thing that soothes my anxiety and depression is knowing that i have the power to destroy this stupid and miserable disease along with myself. It wont subsist if my body dies! Good!

Same boat as CP. I suppose a thread for all of us with major medical issues makes sense too.

 

[Pilum Muralis]

Ugh...
-Severed neuropathy in my feet
-Lymphedema in my left leg (thanks mom)
-3 herniated discs, that I've been told cannot be repaired due to previous surgeries
-Fractured T9, T10 and T12 that didn't heal completely, and actually T12 grew a spur somehow.
-L4 and L5 are fusing since I have no disc, and the L4 was broken and crushed my sciatic nerve. This was repaired first, since it left me unable to sit or stand, and I basically layer on my right side for 3 months before a doctor would see me.
-Permanent nerve damage in said sciatic nerve, that makes sleeping and walking difficult.
- Don't know if this really counts, but my depression manifests body aches. Not always, luckily.
- I also suffer from Dermatophagia, and will chew my fingers until they bleed. My therapist told me it was a way for me to cope due to my alcoholic father. Since stopping my meds, because they made me feel even crappier, and I'm just sick of therapy, my poor fingers look like they went through a meat grinder, and at times feel like it.
-And last but not least....ulcerative colitis. Yay!

Right now I'm taking Percocet 10mg, which I basically had to grovel and plead to get. The strongest the pain management people wanted to go was Vicodin, which is like chewing pez to me. A couple of years ago, I had a BurstDR installed, and it doesn't really help. It feels good, like a internal TENS unit rattling my spine, but as far as pain relief..phht. I'm going to ask them to remove it when they need to replace the battery. What most disappointed me was that spinal stimulator was also suppose to enhance your mood. They attach one of the leads to a pain receptor, that stimulates a part of your brain that makes you happy. I think mine is broken. Then I just take Gabapenten and meloxican, and a bunch of other things. I'm a walking CVS pharmacy.

 

[Kyrok]

@Pilum Muralis , given your spinal issues, it is infuriating that you had to fight to get oxycodone. Any doctor looking at your MRI should be willing to prescribe what you need to function.

Of course, it was very much that way until roughly 5 years ago when the "opioid crisis" was declared.

Hope you're getting more than one Perc per day.

 

[Jumper]

I have a permanent foot injury that causes pain with every step and extreme discomfort when standing. My job involves a lot of standing/walking, and my level of distraction is high. The injury transpired 15 months ago — meds, custom orthotics, PT and surgery did not work. It's leading to exacerbation of my psychiatric illness and has ruined my life.

Today, I couldn't get out of bed on time because I couldn't tolerate the thought of putting shoes on and standing on my foot.

 

[Jolene40]

CP and relentless physical suffering brings me here:
- connective tissue disease that has degenerated my entire body. Can't support weight of spine or head and spend 95% slumped in a chair or laid down
- Orthoststic issues, severe low b.p, racing heart, tachycardia
- sjogrens - causing horrific full body neuropathy which is now eating through cranial nerves, sinuses and affecting my brain
- ulcerative colitis - colon removed and now just eating inside my bottom causing never ending bleeding torn tissue, infections and never ending agonising feeling of pooing and pissing yourself
- suspected Crohns now can't eat solid food. Just had perforated bowels and sepsis and months in hospital
- Ankylosing Spondylitis- an agonising bone condition
- Repeated blood clots in lungs / pleural effusion
- Pericardial effusion
- Agonising burning crushing lung pain
- vertigo, dizziness, spaced out, sedated, head like a bowling ball on a stick.

The main concern of any med professional is whether I'm depressed and need meds. Despite all the above, numerous attempts to assign problems to depression have been made. I cannot support weight of my body despite looking anorexic so walking is not easy. Suggested by a neurologist that I had body dysmorphia. Unbelievable. I look like a skeleton and that's the latest font of wisdom.

 

[Pilum Muralis]

@Pilum Muralis , given your spinal issues, it is infuriating that you had to fight to get oxycodone. Any doctor looking at your MRI should be willing to prescribe what you need to function.

Of course, it was very much that way until roughly 5 years ago when the "opioid crisis" was declared.

Hope you're getting more than one Perc per day.

I'm prescribed 4-6 a day, depending on my pain levels. Some days I'll take 3, and some days I'll take 8. Unfortunately the bulk of my pain really started to ramp up while living in the heart of the "opioid crisis", West Virginia. The strongest any doctor would prescribe was Tylenol #3, which was laughable. I ended up seeing a nurse practitioner who was sympathetic, and prescribed Vicodin until I was ok'd my pain management referral. Then the state prohibited anyone, other than an MD from writing scripts for pain meds. My mother, who had her own pain issues would stash one of hers daily for me, so I could get some sleep. And even after I started pain management, the first thing he told me was he doesn't prescribe pain meds. But after he saw my MRI, I was prescribed Percocet, and fast tracked for a spinal stimulator, which I still had to wait months to get. After moving out of state a couple years ago, we ended up in yet ANOTHER state that is being hit hard by opioids, but luckily my PM doctor is sympathetic, and hasn't tried to wean me off. He does want to eventual, and I would love to be because i hate how it messes with my head. They're tweeking my stimulator in hopes to find its sweet spot, but I've just about given up on that stupid thing ever working right.

 

[Kyrok]

I ended up spending another day mostly in bed. After a brief trek out with the wife for lunch, I had to lay down. Been in bed since. Constant problem with pain meds is that when I need more than the minimum, they make me too lethargic to do anything. Damned either way.

 

[Darkhaven]

I ended up spending another day mostly in bed. After a brief trek out with the wife for lunch, I had to lay down. Been in bed since. Constant problem with pain meds is that when I need more than the minimum, they make me too lethargic to do anything. Damned either way.

As long as you can afford to stay in bed it's always a great course of action!

 

[Kyrok]

As long as you can afford to stay in bed it's always a great course of action!

Ha! I was just thinking something like that... an inexpensive lifestyle for my retirement plans.

 

[enigmática saudade]

Cervical spondylosis for over ten years
Since I was 8 years old
Now I'm cracking my neck in pain and my arms and my back hurt so much as well

 

[Kyrok]

Cervical spondylosis for over ten years
Since I was 8 years old
Now I'm cracking my neck in pain and my arms and my back hurt so much as well

Spondylosis since you were 8? Do you have an underlying metabolic disorder?

 

[enigmática saudade]

Spondylosis since you were 8? Do you have an underlying metabolic disorder?

Not metabolic
I was born with cerebral palsy

 

[Pilum Muralis]

I actually had a decent pain day. I was able to do the dishes that had been in the sink for 4 days, and did our laundry. I'll probbaly pay for it tomorrow, but at least today, I felt accomplished.
Also, I was shocked with how well that NyQuil Zzzzz sleep aid works! Usually I only get 4-5 hours sleep, but I got 10 hours. Husband actually woke me up concerned. Probably worked so well due to mixing with my pain meds and muscle relaxer.

 

[wiIIow]

really sick of every part of my life being tainted by this shit, and mourning the life before. I really took for granted being able to do simple things without constantly fixating on the pain; walking, wearing clothing, sitting, lying down... I miss being just mentally ill. At least I could do something like enjoyingg a damn sunset without the pain screaming at me the whole time. I still think about fucking beating the shit out of the surgeon that helped to ruin my life further and then wrote me off as crazy and irrational.

I hate my fucking body. it's been years and I still cant accept that this is really the rest of my life, that I'm stuck like this. I'll never be able to eat without being in pain, I'll never not feel like I'm needing a piss, and I'll never be able to just fucking live without feeling like theres an open festering wound between my goddamn legs.

although i read some posts on here and feel I should be grateful and shut the fuck up, because holy fucking shit. I am so sorry you guys. Jesus christ no person should have to be in that amount of pain every day

 

[Letmego. Please]

Ok so, i crushed 4/5 vertebra & both my feet & ankles 26yrs ago, both the spinal fractures & the ankle/foot damage cause both nuro & bone on bone pain, i spent the first 10yrs being able to drag my arse about on crutches for a few meters & a wheelchair for the rest, now just the chair, also have rotator cuff problems due to the above modes of transport.

Today i am slightly happy with myself for doing a load of washing, i mean how sad is that, impressed cause i got my backside off one chair & into another...
Maybe tomorrow i will achieve something worthwhile.

 

[Angst Filled Fuck Up]

Lots of stomach pain today. I don't get it looked at because all they do is press on your belly and guess, or else try to schedule you for something up the butt which I think I'd rather just die of cancer than endure. Hey ho, a pretty normal Monday all in all really.

 

[Punished]

I had a spinal fusion with rods many years ago, and now have degenerative disc in my lowest 3 vertebrae, with sciatica, and nerve compression in my neck.
Just started a round of steroids today.
My pain isn't always debilitating, but the flare ups come at the weirdest times and leave me in tears. Can't walk up a flight of stairs. Can't get in or out of a car unassisted. Can't bend over to pick up something I dropped. It's beyond frustrating, and knowing it's progressive has me so scared.

 

[Kyrok]

I'm pretty much stuck in a work-avoidance routine now. I have various large tasks on my plate, but getting into them means horrendous pain. Soon I'm going to have to fess up and withdraw from two important projects.

 

[Jumper]

I've been neglecting tasks due to the psychiatric reaction to my illness/pain. I just can't go on, and spend a lot of time in bed obsessing. It's hard to imagine living decades longer with this.

 

[lululoo]

I've been neglecting tasks due to the psychiatric reaction to my illness/pain. I just can't go on, and spend a lot of time in bed obsessing. It's hard to imagine living decades longer with this.

Thank you for sharing that, made me feel less alone. My physical symptoms are bad, but I am also screwed over by the fact that I have no mental resilience anymore against them. I just can't deal with the fact that I always feel like this, and always will. My reaction is to feel like I shouldn't have to do things. But you have to do things to live life. So I guess I just can't live it much longer.

 

[Kyrok]

I've been neglecting tasks due to the psychiatric reaction to my illness/pain. I just can't go on, and spend a lot of time in bed obsessing. It's hard to imagine living decades longer with this.

Very much the same. I wish I were physically able to get the work done I used to. But pain gets too severe within an hr or so of typing.

 

[Letmego. Please]

Today i will be trying to leave the house, dam depression making motivation to do something i should enjoy despite knowing it will pay me back tenfold later.

Anyways a while ago i brought this really cool attachment for my chair that will allow me to get out & about in the countryside, simple little thing, you just clip this wheel onto the footplate of the chair & it raises the casters off the ground & off you go on a 3 wheeler. It has been sat unused in the back of car for nearly 6wks now & its a battle between finding the motivation while trying to avoid beating myself up over not using it yet.

 

[Kyrok]

I juggled a dozen different things today and feel totally unsettled.
I made it through my work without the pain overwhelming me, but since dinner, it has been bad enough all I could do was lie in bed. 6hrs of that and I'm still waiting for pain level to drop.

 

[Letmego. Please]

I am pleased to say i did make it out on Tuesday to try my off roading, went wheeling around a lovely bit of woodland, i enjoyed it but it didn't seem to help the depression, bloody intrusive thoughts every time i saw a tree are tricky when you've gone off for a walk in the woods Do'h.

But at least i did it & today is what counts as work in my sad world, 4hrs out the house to run an art group for my fellow nutty peeps.

 

[Camille Lejeune]

Small fiber neuropathy
chronic intestinal pseudo obstruction
Advanced glaucoma
autonomic failure
Severe anxiety/depression
Yeah, life is hell

 

[Snowx88]

Small fiber neuropathy
chronic intestinal pseudo obstruction
Advanced glaucoma
autonomic failure
Severe anxiety/depression
Yeah, life is hell

Yeah I have a lot of horrible shit too and am only 24 , how old are you ?

 

[Camille Lejeune]

I'm 28 (feel like I'm 80 !)