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Chronically ill loser feeling ready to give up after series of blows

C

copium7777

Bluelighter
Joined
Apr 26, 2020
Messages
411
I was already almost ready to totally give up. In the last year I became bedridden, then I got sort of turned down for a surgery I really need for cci, my pain has gotten worse than ever, with almost zero treatment., neck and all symptoms have deteriorated so much since having covid.
But I was still trying to a considerable extent, I still had hope of getting better. However in the past few weeks there are some things that have suddenly pushed me to the point of snapping.

One of the medications I rely on the most, ketamine , has started to cause side effects that may mean I need to totally discontinue it. Its started t cause bladder pain and other bladder problems. Ketamine is the single thing that gives me an improvement in, quality of life via helping my sound sensitivity, mood , sleep and pain. And I'm on a relatively tiny dose compared to people abusing it at doses that would usually cause issues. It just seems like. I have really really terrible luck. Like its unlikely the average person would get bladd3rprobelms from ketamine at this small of a dose but I get this kind of luck. It's like my body is too frail to tolerate medications that are supposed to help. Likd maybe bc I have mcas or tethered cord or weak pelvic floor muscles , I cant tolerate something that wouldn't irritate most people's bladder.

This seems like a tiny thing but if I lose this med theres probably nothing to replace it. No more sessions listening to music, just going back to crushing despair and the regular severe ME bedridden life where the brain fog air hunger and pain are so bad u cant even read or listen or watch much stuff bc to distract you.

Idk if this is the right place to post but I need help so bad
 
Everything in my life sucked before this problem but losing ability to tolerate ketamine feels like a last straw. Theres nothing that could make this better I think
 
I am working on finishing ng getting my passport which would mean I can go to euthanasia in Switzerland. But I am also scared of what's on the other side
 
Maybe you can give yourself a break from the ketamine. Give your body a chance to recover and find something else in the meantime.

Cannabis or kratom don't give you any relief?
 
deficiT said:
Cannabis or kratom don't give you any
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Cannabis makes me feel awful, and makes my POTS and PEM way way worse , not just a mental nightmare, bad physical effects.

Kratom helps some but is not something I can rely on

I could take a break I guess I'm just on one of the worst pain flares while waiting for a possible surgery and I want something to replace this with ...
 
I understand that. The ketamine bladder thing is not something you wanna tempt though so just be careful, it can put you in a world of hurt. I understand you're already in a world of hurt so I wish you the best.

Have you tried potentiating the kratom with turmeric or black pepper? And have you used legit sources for your kratom? It really does make a difference.

I know that's cold comfort when you have something stronger like ketamine to rely on. Believe me I've struggled with dissociative use, and it really can be difficult to stay away from them.
 
deficiT said:
I understand that. The ketamine bladder thing is not something you wanna tempt though so just be careful, it can put you in a world of hurt. I understand you're already in a world of hurt so I wish you the best.
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I get so many mixed messages bc like every resource online says bladder damage mostly related to people who abuse it at high doses meanwhile I'm prescribed 60 mg a day. And my doctor says it's possible it causes irritation but said to keep trying it and stop and start to test if it is correlated and that he doesnt think it's even possible to cause damage at this dose. But then I've found anecdotes saying it is possible to at least cause irritation at this dose and it's not studied. Idk whether to listen to my doctors reassurances which I want to believe or my body lol.

It's also ttrue I most likely have tethered cord and have had other bladder symptoms even without the ketamine but the pain and irritation seem very correlated to ketamine doses.
 
deficiT said:
And have you used legit sources for your kratom?
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Yeah , I know about the best kratom sources , and which strains work best it's just a matter of it having a ceiling effect for pain, good kratom even seems like it cant get much higher than the equivalent of about 10 mg oxycodone for pain.

I actually took kratom for mood and stuff before I ever had chronic pain and I loved it recreationally but for this pain , especially since I sometimes take suboxone or oxycodone for it , it doesnt get to the level I need. Plus it sometimes exacerbates my pots. Not as bad as cannabis but still a bit
 
deficiT said:
know that's cold comfort when you have something stronger like ketamine to rely on. Believe me I've struggled with dissociative use, and it really can be difficult to stay away from them.
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I mean its not really about struggling with the use , or addiction. Honestly if I wasn't in this state of illness I would be not that enticed by ketamine as a drug. But it is one of the only pain options I have available plus it helps with sound sensitivity and some other symptoms, so i don't know what I would replace it with palliative care wise.

I remember taking ketamine some for fun when I was healthy and it was never like a drug I could see myself being that into, it was nice and introspective but not like the most amazing euphoria or something I'd want to feel like all the time. Its sorta pathetic how much worse my world is now that I'm sick so that being on ketamine is one of the highlights , I mean in general it's an alright drug but I'd prefer to not have the pain and sound sensitivity in first place and not need it.

I would kill to just be healthy, health is like worth more to be than any high but since I cant have that I would like good palliative care I guess
 
Yeah I’m really sorry you’re going through a really challenging time.

If you’ve bladder issues then ketamine is not a good idea, I’m not surprised it’s having the effect you describe. Just because some who post about ketamine on here seem to tolerate it does not mean that’s a common thing amongst users. Even at low doses ketamine can for sure be damaging to the kidneys and bladder. I would cease using it immediately.

As for your issues and pain, honestly, your dr is the best person to refer to. Tell them about what the ketamine helped with and see if he/she has a suggestion. Hopefully you will get something close.

I know ketamine can be a blessing in some cases but once you’re having bladder issues then seriously, it’s not worth it. You’ll be adding being catheterised to the list of issues for one.
 
MsDiz said:
You’ll be adding being catheterised to the list of issues for one.
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Ph my god I didn't realize it was that severe. Doc today said to stay on it until I see a urologist bc shd thought it won't cause permanent damage
 
copium7777 said:
Ph my god I didn't realize it was that severe. Doc today said to stay on it until I see a urologist bc shd thought it won't cause permanent damage
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Your dr is an idiot. Any issues with your bladder then ketamine use should be ceased. To continue using it whilst not knowing if it’s that or your other issues causing the problems is playing with fire. See the urologist, find out what’s wrong, if it’s not the ketamine then be pleased and resume but it does sound like it’s to blame.
 
MsDiz said:
Your dr is an idiot. Any issues with your bladder then ketamine use should be ceased. To continue using it whilst not knowing if it’s that or your other issues causing the problems is playing with fire. See the urologist, find out what’s wrong, if it’s not the ketamine then be pleased and resume but it does sound like it’s to blame.
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Wow she did seem pretty smart on other issues like surprisingly hEDS nad POTS aware , prescribed me meds for those and was understanding about it. Actually it was two doctors , nei thg er of them denied that ketamine could cause bladder issues or exacerbate them and one was very eds aware but he thought pelvic floor muscle dysfunction or prostate issues more common in connective tissue disorder person... also I think that while he doesnt seem like an idiot to me part of the reason that he may be overly Blase about ketamine side effects is that he is very anti opioid. I'm like maxed out on tylenol and aspirin or NSAIDs so if I'm going to not take ketamine pretty sure I need some opioids of some kind even if it's like suboxone.

Anyway I'm going to a urologist soon but I dont know what I can do for pain in meantime like , I was only ever prescribed opioids once , I think even suboxone would be a better option than ketamine. Well ketamine has lots of benefits but it also comes with these rare but occasionally awful side effects.
 
copium7777 said:
Wow she did seem pretty smart on other issues like surprisingly hEDS nad POTS aware , prescribed me meds for those and was understanding about it. Actually it was two doctors , nei thg er of them denied that ketamine could cause bladder issues or exacerbate them and one was very eds aware but he thought pelvic floor muscle dysfunction or prostate issues more common in connective tissue disorder person... also I think that while he doesnt seem like an idiot to me part of the reason that he may be overly Blase about ketamine side effects is that he is very anti opioid. I'm like maxed out on tylenol and aspirin or NSAIDs so if I'm going to not take ketamine pretty sure I need some opioids of some kind even if it's like suboxone.

Anyway I'm going to a urologist soon but I dont know what I can do for pain in meantime like , I was only ever prescribed opioids once , I think even suboxone would be a better option than ketamine. Well ketamine has lots of benefits but it also comes with these rare but occasionally awful side effects.
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How funny, when you mentioned earlier about your bladder issues and the MCAS thing I immediately thought EDS because I have EDS but then I thought what’s the chances.

Look, like you say, your dr is favouring ketamine because he’s anti opioid. In a way he’s correct, is it likely to cause long term damage in a normal person? Probably not, but would I take that chance? No way and nor should he. With our condition especially, ketamine is just not a good choice. The irritation to the bladder and the fact we are poor healers would automatically make me dismiss it as an option for treatment anyway.

Have you joint issues? Subluxions/dislocations? I fail to see why you aren’t being treated with opioids for a condition that needs them. Absolutely ridiculous, if he was EDS aware he would know that there are some conditions you need opioids. Like there could easily be a plan in place to ensure you’re not gaining tolerance too quickly.

I am on a schedule 2 one with fent lollies for severe dislocations and I don’t know how I would actually live without that. I work and have a son. I literally couldn’t manage to get out of bed without my medication.
 
I guess its hard to know what doctors to trust and stuff these are definitely better doctors than most but
 
MsDiz said:
Have you joint issues? Subluxions/dislocations? I fail to see why you aren’t being treated with opioids for a condition that needs them. Absolutely ridiculous, if he was EDS aware he would know that there are some conditions you need opioids. Like there could easily be a plan in place to ensure you’re not gaining tolerance too quickly.
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I actually am not sure I technically have hEDS have never had. a genetic workup but since i have severe cci and no head trauma a lot of doctors have said I probably have it. that said I dont have sublyxations or joint issues besides my neck but that is quite severe
 
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