Discussion Anyone with chronic pain / physical disability?

[Andrews]

Is anyone living with chronic pain or physical disability? How do you do it? What keeps you going?

 

[Life_and_Death]

me! not the same problem though, that sounds like it sucks

i was born without 2 bones in my lower back (sponlylolisthesis) and i also have lumbar scoliosis so my whole lower back is screwed. literally "S"ed front to back and side to side (basically, front to back is just slipped towards my back). ive been dealing with the pain since 13.

How do you do it? What keeps you going?

try to avoid pain? an example is i can sleep with a pillow under my back or between my legs to take pressure off my spine. and sit up straight is a big one. idk if any of these could help you though

 

[Dot]

Mght stll b sme actve ppl hre

Chronic Illnesses and Physical Diseases Megathread

I have encountered multiple members here who, like myself, have chronic conditions and illnesses. I have met members here with a variety of physical diseases (chronic, terminal or otherwise). I thought it would be useful to have a specific thread for that and a space where people can talk about...

sanctioned-suicide.net

 

[whywere]

YES! Back in April 2015 a person ran a stop sign and I t-boned him. The crash tore part of my spinal cord from the base of my brain and my right ear is 100% deaf permanently.

Now I have 24/7 chronic pain, and I have a wonderful pain doctor who helps me. I am on 2 types of opioids and Lyrica also.

It is daunting to every day wake up with it, but the opioids help and so does this site with all the wonderful folks here.

Walter

 

[carac]

I don't know if it will be any help but check out the video in my profile.

I had similar issues, Back pain, Knee pain and foot pain, only diagnosis I ever got from doctors was "musculoskeletal" and sent to physio which did nothing

 

[Final_Choice]

Not exactly the same but I have a benign tumor in my head which messes up my sight and blood/oxygen flow to my head. I faint constantly and lose my vision a lot as well as have constant migraines. Unfortunately doctors just said there's no cure since removing the tumor will have a high chance of failure so I just have to "deal with it."

 

[divinemistress36]

An experienced craniosacral therapist helped my pain so much

 

[CuriosityAndCat]

Currently dealing with grade 2 tears of tendons in both wrists. Makes doing stuff more difficult and gotta be careful. Driving for example exacerbates injuries.

As far as meditation, you can meditate in savasana.

Do you know what the cause is for you?

Some kindof physical stressor you can do helps with mental stress and feeling just down from being limited. You'd probably want to do arm exercises with either light dumbells or bands while lying down. There might be core exercises which are better.

Small cloth bags of deer corn have the right weight and heated in microwave helps a lot.

 

[Andrews]

Currently dealing with grade 2 tears of tendons in both wrists. Makes doing stuff more difficult and gotta be careful. Driving for example exacerbates injuries.

As far as meditation, you can meditate in savasana.

Do you know what the cause is for you?

Some kindof physical stressor you can do helps with mental stress and feeling just down from being limited. You'd probably want to do arm exercises with either light dumbells or bands while lying down. There might be core exercises which are better.

Small cloth bags of deer corn have the right weight and heated in microwave helps a lot.

I also have something similar in my wrists. Luckily I don't need to use them much, but it bothers even when brushing my teeth sometimes.

I do enough exercises, but it won't really improve. That's how joints are once injured.

It's really hard to relax for meditation. The pain usually puts me in a mental state that's not compatible with meditation. Even if I do get into a proper state, once I go on with my day I immediately get into my usual state of agitation, fatigue, etc.

Not exactly the same but I have a benign tumor in my head which messes up my sight and blood/oxygen flow to my head. I faint constantly and lose my vision a lot as well as have constant migraines. Unfortunately doctors just said there's no cure since removing the tumor will have a high chance of failure so I just have to "deal with it."

Headaches suck. I have them sometimes... for me the cause is at the base of the skull. It's easy to strain it even when lying in bed and then the headaches go on for days.

 

[xmissellax]

Me. Chronic health and pain sucks. My brain can't seem to handle living a life like this forever, it's taken everything away from me and I've been in a deep mourning over losing who I was. This is the biggest reason why I want to CTB. I don't want to get worse and have that control eventually taken away from me.

 

[GhostShell]

ME/CFS thanks to long covid. Some days I literally dont have the energy to kill myself no matter how much I want to. And that is scary. Like being paralyzed, wanting to die but being unable to. My quality of life is zero, heck I am wishing for cancer every day, that would be an upgrade for my quality of life and at least I would have some support and get taken seriously.

I honestly have no idea why I am still here. There is nothing good for me in the future. Nor for the rest of humanity. Whether it is going to be others getting permanently disabled from long covid or all of us dying due to climate change, world is slowly or rather quickly coming to an end.

I guess I just literally want to see the world burn from the "comfort" of my bed.

 

[fishlover]

i guess mine isnt as bad in comparison to others but i have chronic stomach pain after developing a chronic form of IBS 7 years ago due to my anxiety disorder. most of the time i can avoid pain by eating carefully and avoiding foods that i know will give me a stomach ache. but at this point, its gotten so bad that i'll have a week or two that i can eat barely anything at all without feeling pain, no matter if its a safe food or not. (i did some research on this, and apparently in long term cases of IBS the brain starts sending signals to the intestine that causes it to contract no matter what you eat, causing pain.) at times the pain is so bad i can only writhe on the floor for hours until it goes away. besides that, i also get horrible nausea and sometimes wake up in the middle of the night shivering and dry heaving. (sorry if its all tmi, i just want to complain)

there really isnt any cure or specific treatment for it so i just drink lots of herbal tea and lots and lots of pain killers. on average i'll have approximately 2,500 mg of acetaminophen and 900 mg of ibuprofen when im experiencing pain. (so in a time span of about 24-48 hours ill consume that much.) my liver is probably fucked idk but ive built a tolerance to OTC pain killers so i have to take more than the average dose for even a little relief.

 

[carac]

i guess mine isnt as bad in comparison to others but i have chronic stomach pain after developing a chronic form of IBS 7 years ago due to my anxiety disorder. most of the time i can avoid pain by eating carefully and avoiding foods that i know will give me a stomach ache. but at this point, its gotten so bad that i'll have a week or two that i can eat barely anything at all without feeling pain, no matter if its a safe food or not. (i did some research on this, and apparently in long term cases of IBS the brain starts sending signals to the intestine that causes it to contract no matter what you eat, causing pain.) at times the pain is so bad i can only writhe on the floor for hours until it goes away. besides that, i also get horrible nausea and sometimes wake up in the middle of the night shivering and dry heaving. (sorry if its all tmi, i just want to complain)

there really isnt any cure or specific treatment for it so i just drink lots of herbal tea and lots and lots of pain killers. on average i'll have approximately 2,500 mg of acetaminophen and 900 mg of ibuprofen when im experiencing pain. (so in a time span of about 24-48 hours ill consume that much.) my liver is probably fucked idk but ive built a tolerance to OTC pain killers so i have to take more than the average dose for even a little relief.

I think it is possible to reverse those signals that the brain is sending. If you like I can send you a video with a pain specialist and somebody who went being unable to eat hardly anything to eating whatever they want and getting rid of all their pain.

 

[fishlover]

I think it is possible to reverse those signals that the brain is sending. If you like I can send you a video with a pain specialist and somebody who went being unable to eat hardly anything to eating whatever they want and getting rid of all their pain.

yes please, ill try anything atp haha

 

[DarkThoughts]

Is anyone living with chronic pain or physical disability? How do you do it? What keeps you going?

Diagnosed with Functional Neurological Disorder (FND) recently after ~1 year of severe nerve pain and muscle weakness. I struggle to walk for more than 5 minutes because the pain flares up during exercise/stress. God I wish it was MS, at least medical professionals actually understand that condition. Every single doctor has their own opinion on it, and it makes me feel like shit. Its history, previously known as Hysteria or Conversion Disorder, are contributing factors. Despite no structural damage, some of the symptoms I may develop make me quite scared. Around a quarter of people with FND are wheelchair-bound, some suffer from seizures and temporary paralysis (hours/days at a time), inability to speak, loss of hearing or vision, myoclonus, dystonia, etc.

My symptoms are currently limited to chronic pain (burning sensation in extremities), muscle weakness, some balance/coordination problems and migraines. I've been referred to a physiotherapist which supposedly helps a bit with the pain. The stigma around FND is overwhelming, and studies have so many different outlooks. Some say that most recover, but others say that less than half of people who engage with therapies notice any improvement after one year. My case is mild, but alongside my mental health issues, it's debilitating. I don't have high hopes, but I know a few people here want to overcome the detriment their conditions cause. I wish them all the best in their endeavours.

 

[Andrews]

i guess mine isnt as bad in comparison to others but i have chronic stomach pain after developing a chronic form of IBS 7 years ago due to my anxiety disorder. most of the time i can avoid pain by eating carefully and avoiding foods that i know will give me a stomach ache. but at this point, its gotten so bad that i'll have a week or two that i can eat barely anything at all without feeling pain, no matter if its a safe food or not. (i did some research on this, and apparently in long term cases of IBS the brain starts sending signals to the intestine that causes it to contract no matter what you eat, causing pain.) at times the pain is so bad i can only writhe on the floor for hours until it goes away. besides that, i also get horrible nausea and sometimes wake up in the middle of the night shivering and dry heaving. (sorry if its all tmi, i just want to complain)

there really isnt any cure or specific treatment for it so i just drink lots of herbal tea and lots and lots of pain killers. on average i'll have approximately 2,500 mg of acetaminophen and 900 mg of ibuprofen when im experiencing pain. (so in a time span of about 24-48 hours ill consume that much.) my liver is probably fucked idk but ive built a tolerance to OTC pain killers so i have to take more than the average dose for even a little relief.

I know, digestion issues are so hard to treat. The psyche plays a big part in those. I my case it was mostly due to stress, it didn't improve no matter what I did. Only after the stress reduced, it slowly improved over the course of months.

 

[GhostShell]

i guess mine isnt as bad in comparison to others but i have chronic stomach pain after developing a chronic form of IBS 7 years ago due to my anxiety disorder. most of the time i can avoid pain by eating carefully and avoiding foods that i know will give me a stomach ache. but at this point, its gotten so bad that i'll have a week or two that i can eat barely anything at all without feeling pain, no matter if its a safe food or not. (i did some research on this, and apparently in long term cases of IBS the brain starts sending signals to the intestine that causes it to contract no matter what you eat, causing pain.) at times the pain is so bad i can only writhe on the floor for hours until it goes away. besides that, i also get horrible nausea and sometimes wake up in the middle of the night shivering and dry heaving. (sorry if its all tmi, i just want to complain)

there really isnt any cure or specific treatment for it so i just drink lots of herbal tea and lots and lots of pain killers. on average i'll have approximately 2,500 mg of acetaminophen and 900 mg of ibuprofen when im experiencing pain. (so in a time span of about 24-48 hours ill consume that much.) my liver is probably fucked idk but ive built a tolerance to OTC pain killers so i have to take more than the average dose for even a little relief.

For the love of all that is holy, do NOT take NSAIDs. What you are describing is gastritis. Bland diet (literally rice and similar) for 3-6 months, zero caffeine, zero alcohol, zero spicy/greasy/fatty food and you will be much better. I went through this myself and wish someone told me earlier.

And remember: IBS is a lazy doctor diagnosis. Most people dont have IBS but something actually wrong with them, quite often just missing the right diagnostic. If your problem is constipation you need motility testing, if diarrhoea it may be SIBO. Dont settle for a shitty (pun intended) quality of life while there is still a chance.

 

[bakkikak]

I'm struggling with scoliosis, I can't run for too long, stand for too long, jump too far or too high because then my back just hurts so much it's unbearable. Sometimes it takes only one wrong move and suddenly I'm at the floor and I can't move a single bit because of the back pain, it feels like somebody was cutting me from the inside. I got diagnosed as a kid when I was 10, tried rehabilitation, and was using a scoliosis brace (corset) until I turned 18 hoping it would help, but it didn't really change much. Sure, I could go on an operation and get it fixed, but I don't think I want to live with screws inside my back haha. Hopefully the pain will ease one day :) We're in this together! Sending you love and strenght so you can get over this as quickly as you can

 

[Andrews]

I'm struggling with scoliosis, I can't run for too long, stand for too long, jump too far or too high because then my back just hurts so much it's unbearable. Sometimes it takes only one wrong move and suddenly I'm at the floor and I can't move a single bit because of the back pain, it feels like somebody was cutting me from the inside. I got diagnosed as a kid when I was 10, tried rehabilitation, and was using a scoliosis brace (corset) until I turned 18 hoping it would help, but it didn't really change much. Sure, I could go on an operation and get it fixed, but I don't think I want to live with screws inside my back haha. Hopefully the pain will ease one day :) We're in this together! Sending you love and strenght so you can get over this as quickly as you can

Sorry about your back. I hope you'll find something that will improve the curve (did you try Schroth?)

 

[fishlover]

For the love of all that is holy, do NOT take NSAIDs. What you are describing is gastritis. Bland diet (literally rice and similar) for 3-6 months, zero caffeine, zero alcohol, zero spicy/greasy/fatty food and you will be much better. I went through this myself and wish someone told me earlier.

And remember: IBS is a lazy doctor diagnosis. Most people dont have IBS but something actually wrong with them, quite often just missing the right diagnostic. If your problem is constipation you need motility testing, if diarrhoea it may be SIBO. Dont settle for a shitty (pun intended) quality of life while there is still a chance.

i know you mean well, and i agree that IBS is usually thrown around as a lazy diagnosis- but in my case, before actually being diagnosed with IBS, i was tested extensively. endoscopy/colonoscopy, lactose intolerance test, ultrasound, bloodwork, and several other tests. i had a biopsy taken during the endoscopy/colonoscopy and it came back clean as well. believe me, i wouldve been diagnosed with gastritis if i had it.

also, the very first thing the doctor prescribed me was a diet. a low-FODMAP diet. i had an extremely limited and plain diet for 2 months. however it was stopped, because guess what? it didnt work. in the end IBS is almost entirely a mental thing so like i said before, even if i eat plain i will still be in pain. and im sure my diet really isnt an issue, because i eat quite healthy on a daily basis. no soda or juice, lots of fruit, etc.

unfortunately there really isnt any hope for me, i can only manage the pain. the doctor did mention though that if my anxiety disorder were treated that the IBS would likely go away, but the first medication i tried didnt work, and long story short ive been without a psychiatrist for awhile due to issues with health insurance. hopefully in the near future though i can go back to a psychiatrist and get my problem fixed with the right meds :)

 

[sleep4eternity]

I'm struggling with scoliosis, I can't run for too long, stand for too long, jump too far or too high because then my back just hurts so much it's unbearable. Sometimes it takes only one wrong move and suddenly I'm at the floor and I can't move a single bit because of the back pain, it feels like somebody was cutting me from the inside. I got diagnosed as a kid when I was 10, tried rehabilitation, and was using a scoliosis brace (corset) until I turned 18 hoping it would help, but it didn't really change much. Sure, I could go on an operation and get it fixed, but I don't think I want to live with screws inside my back haha. Hopefully the pain will ease one day :) We're in this together! Sending you love and strenght so you can get over this as quickly as you can

I got scoliosis too. It was close to 90 degrees. Got the surgery at 16. Two years after the surgery, I started experiencing constant back pain. Attempted to get it diagnosed to figure out why or where the pain is coming from. Fast forward, sounds a doctor that doesn't brushed me off to finally diagnosed me at the age of 25. I got sciatica and it's because the surgeon who did the surgery fucked up. The doctor pretty much told me that I'll have to be on a pain medication for the rest of my life. The only time surgery will be required is if the pain becomes unbearable and it's affecting my daily life. The surgery will be a 50/50 as well. It's either going to make the pain way worse or the pain being slightly better. But then again, going through the surgery for a slightly better pain doesn't seem to be worth it because of the recovery period. I am fucked pretty much.