Red

Red

Wizard
Apr 10, 2019
672
Yes. Pretty much undiagnosed after several years, even after being bounced between various specialists and as assorted docs best guesses turned out to be wrong, despite several surgeries assuming that they were right, cutting bits out n removing organs, prescribing pills etc.

Somehow not having a name for it and not being believed, by people in personal life as well as in the medical world, is almost as bad as the actual pain. It compounds it, makes it so much worse and makes you feel completely alone in your suffering.

All the well wishers who insist that “you just need to drink more water” or “take more vitamins or x supplement” or that “you’d feel much better if you got up early in the morning” - yes love, I probably would feel better if I could actually sleep well at night…

Feeling weak, tired and painful is exactly why you can’t really fight that hard for a proper answer. It’s just too exhausting. Yet you’re made to feel like a prick for wanting an end to a the pain and gaslighting and your burden upon others - selfish, not wanting to drag people down any longer. How dare we.
 
sohosquare

sohosquare

Member
Feb 21, 2022
11
Me. Diagnosed with my chronic condition twenty years ago. The physical side of it is definitely a contributing factor, but I think the psychological impact of my illness is what has ultimately led me here. A lot of my childhood trauma took place in hospital settings and that I'm sure is a huge part of the root of my BPD. The combination of the physical pain I'm in and the intricacies of my mental illness are the reason I'm here. It seems the longer I live, the less bearable life becomes.
Yes. Pretty much undiagnosed after several years, even after being bounced between various specialists and as assorted docs best guesses turned out to be wrong, despite several surgeries assuming that they were right, cutting bits out n removing organs, prescribing pills etc.

Somehow not having a name for it and not being believed, by people in personal life as well as in the medical world, is almost as bad as the actual pain. It compounds it, makes it so much worse and makes you feel completely alone in your suffering.
I suppose that it one thing I am grateful for, that my pain has a name. I cannot imagine having the pain and symptoms I do, on top of that endless fight to get the medical world to believe me, and without a tag for the rest of the world to read up on so they can understand. I'm sorry friend, and anyone else who has fought to have their pain recognised and understood. That must be hellish.
 
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notaboutangels

notaboutangels

Member
Feb 26, 2022
55
Not the pain itself anymore but I was having migraine attacks in the past that led to a relapse of suicidal thoughts and loss of all pleasure that worsened my disordered eating into a full blown disorder which is one of the reasons why I want to CTB. At the time it felt like no one understood and acted judgemental because I couldn’t do any homework. I was struggling in school because of it and then things just snowballed.
 
LostAllHope88

LostAllHope88

Member
Dec 21, 2021
63
Yes, definitely one of the many reasons. I was in a major car accident in 2011 (rolled my car on the expressway a few times) and my arm went halfway out the driver’s side window in the process. The car ultimately landed upside down and was pinned on top of my arm until help arrived to cut me out with the jaws of life.

I didn’t lose my arm thankfully, but I did lose about a third of the muscle tissue and sustained a lot of nerve damage. The nerves weren’t severed so they mostly healed over time (some parts remain flat pancaked) but my arm is now so full of scar tissue that keeps growing and it continually puts pressure on the nerves. It’s truly painful and exhausting.

I also have long COVID now and have severe vertigo that I never had in my life previously. It feels like I’m constantly rocking on a boat downriver, and between the pain and disorientation it’s so hard to function.

I just don’t have the energy to keep going like this anymore, not the way your average person without chronic pain/disease/other bodily ailments does.
 
K

KimKevorkian

Experienced
Feb 23, 2022
214
Yes, definitely one of the many reasons. I was in a major car accident in 2011 (rolled my car on the expressway a few times) and my arm went halfway out the driver’s side window in the process. The car ultimately landed upside down and was pinned on top of my arm until help arrived to cut me out with the jaws of life.

I didn’t lose my arm thankfully, but I did lose about a third of the muscle tissue and sustained a lot of nerve damage. The nerves weren’t severed so they mostly healed over time (some parts remain flat pancaked) but my arm is now so full of scar tissue that keeps growing and it continually puts pressure on the nerves. It’s truly painful and exhausting.

I also have long COVID now and have severe vertigo that I never had in my life previously. It feels like I’m constantly rocking on a boat downriver, and between the pain and disorientation it’s so hard to function.

I just don’t have the energy to keep going like this anymore, not the way your average person without chronic pain/disease/other bodily ailments does.
And may I interject here..GodDAMN the NY Times and fixthe26 for ignoring such overwhelming evidence of "legitimate" wishing to have a peaceful means of ending the suffering. I think they're acting as evangelists essentially. Man, I feel so bad for all of your suffering, every one of you. It's worse than mine. And mine still screws with me plenty. Can only imagine the torture you all go through. Well, at least WE get it and support one another.
Not the pain itself anymore but I was having migraine attacks in the past that led to a relapse of suicidal thoughts and loss of all pleasure that worsened my disordered eating into a full blown disorder which is one of the reasons why I want to CTB. At the time it felt like no one understood and acted judgemental because I couldn’t do any homework. I was struggling in school because of it and then things just snowballed.
Did the migraines lessen at some point? How are things now overall? Have your symptoms morphed? Damn I wish I cd grasp Bitcoin and the DarkNet--wherever that is. I'd love to see if there are any forms or extracts of peyote or ayahuasca that wouldn't totally flip one out. That wd NOT be good. Just curious if the constituents wd help one psychically and physically deal with pain and dark nights--and days--of the so called soul. Like a peyote nasal spray.
 
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GentleJerk

GentleJerk

Carrot juice aficionado.
Dec 14, 2021
1,235
@Red Sounds a lot like my situation, I can definitely relate to the psychological issues of having no understanding or recognition being equally as difficult as the physical issues. It must be extremely difficult, you have all my support.

I have very little faith in doctors and hospitals after being repeatedly dismissed and ignored, or having my symptoms labeled as made-up or psychosomatic simply because they are either covering up for being entirely clueless, or deliberately trying to withhold medical treatment.

I imagine that I will end up in a situation much like yours due to their refusal to diagnose and treat the underlying cause of my deteriorating health, eventually requiring serious medical and surgical intervention. For now, I treat myself as the pain grows worse each day. I have had multiple successes doing this, more than any doctor so far has provided. For example, after spending hundreds of dollars to see a dermatologist and using different steroids and ointments with no success, I was able to completely cure a skin condition using nothing but virgin coconut oil.

When pain and symptoms become more unbearable and I try to push for them to further investigate, I get treated very poorly and sometimes accused of being a malingerer. Of course the outcome of this, which is likely the desired one, is that I abstain from seeking treatments and allow my condition to further deteriorate. After spending quite a sum of money and being referred to multiple 'specialists' who charge through the roof, yet are all completely incompetent at best, and negligent at worst- I've decided that I would rather peacefully end my own life if things become too much to cope with, than place my faith and trust in them and continue to subject myself to their malpractice.

I won't give them the satisfaction of abusing me, taking all my money and offering me nothing but lies and failure in return.
 
Mariam21

Mariam21

Trapped in life
Mar 18, 2022
85
If I didn't catch COVID last June I would have never known how hard long COVID is. This damn virus is th reason I'm here. It changed my life to hell. Chronic pain is a beast. It's also left me with many autoimmune diseases and an uncurable progressive illness.
 
headwood

headwood

Member
Feb 9, 2022
37
I also have long COVID now and have severe vertigo that I never had in my life previously. It feels like I’m constantly rocking on a boat downriver, and between the pain and disorientation it’s so hard to function.
I'm so sorry, I know what this is like. I have neuroinflammation from Lyme disease that gives me episodes of this kind of vertigo. It's absolutely excruciating and frightening.
 
BrokenBliss

BrokenBliss

Invisible. Apparently.
Jan 11, 2022
527
We have a megathread, too.

 
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Siegfrida

Member
Nov 21, 2021
22
Yeah, chronic pain for the last 6 years or so, and chronic insomnia for the last 16 years or so. These two of course make each other worse, so it's a vicious circle and it makes me more depressed than I would probably be otherwise (I probably still would, but not like this).
 
Still Flutter Girl

Still Flutter Girl

An alphabet soup of pain, pain, and more pain
Jun 13, 2022
13
Yup…I’ve now been bedbound for half a decade, with the second half of that being 10x worse because Long COVID gave my conditions superpowers🙄

This isn’t a life, and hasn’t been for a long time. I can’t even drink or get any kind of buzz to have a break, bc my brain just doesn’t work that way anymore, and I’m allergic to liquor (and the reaction always includes more pain, after MAYBE 15-20min of slightly decreased anxiety). MJ hasn’t worked for me in AGES.

I really need to get past the SI, set up a plan for my dog, and get this over with. The world is going to hell anyway, and I’m not about to wait to end up on the street, or to have the fucked up powers that be drop the other shoe and take the little pain relief that I DO get.

I feel like I might’ve said this before under my old account, but I really wish I just had access to MAiD. SN is just “my only affordable option atm.”

The only positive here is the levels of pain I’m used to. Even if SN *does* cause discomfort or pain, NOTHING could compare to a life of this and worse (with age, and increasingly restrictive pain med laws). Even during acute attacks, I’ll wish I had an empty stomach, to just get it over with.
 
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