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

Don’t worry about saying the wrong thing that could get the doctor in trouble with the DEA. He/She chose this specialty
But the doctor who prescribed my ketamine isnt. A pain management specialist. Shes an immunologist and ID doctor treating me/cfs, mcas, and fibro. Shes just the only doctor I have that understands severity of my pain
 
What are they doing to treat your neck is my next question? Surely you should have a collar on for a start? Instability is nothing to mess around with and when talking about compression then it really can’t just be left as is.
I've had. collar for years which is pretty bad , but I've been waiting for surgery for awhile bc I was homeless for a bit. I have had trouble getting surgery scheduled quickly but am trying. In the meantime need pain relief
 
I think you need to push your dr for a diagnosis of what is going on with you.
I do have diagnoses. They are simply not always that much help bc they are diagnoses of illnesses that are fairly understudied and not well researched. I have an ME/CFS diagnosis. I have a craniocervical instability diagnosis. I have a POTS diagnosis, and an MCAS diagnosis. My doctors do think that the mcas or my infections could've caused the connective tissue problems even without a connective tissue disorder. Or some of them believe that bc they've seen it in patients whereas some of them think it's impossible to have cci without a connective tissue disorder, but I think that's bc they are biased. K know a bunch of people without global hypermobolity who have had cci after an infection or mcas or some inflammatory trigger
 
honestly is super easy to control opioid meds for patients if the dr wants to take the time to write out a plan for use and how to manage tolerance and the pharmacy have the means to dispense weekly for instance. There’s no feasible reason you’re not getting proper pain meds for a clearly painful issue.
My only concern is as sick as I am the intense monitoring may be a concern. I have nothing to hide but even with. recumbent wheelchair can be tough to get out to lots of appointments. Sometimes even cancel on my saline infusions which are helpful. So if I had to go out weekly for a pill count or urine test on top of the other appointments I have that would be such a pain
 
My only concern is as sick as I am the intense monitoring may be a concern. I have nothing to hide but even with. recumbent wheelchair can be tough to get out to lots of appointments. Sometimes even cancel on my saline infusions which are helpful. So if I had to go out weekly for a pill count or urine test on top of the other appointments I have that would be such a pain
It might be an annoyance but you could build trust with them and it would be worth it in the end.
 
I do have diagnoses. They are simply not always that much help bc they are diagnoses of illnesses that are fairly understudied and not well researched. I have an ME/CFS diagnosis. I have a craniocervical instability diagnosis. I have a POTS diagnosis, and an MCAS diagnosis. My doctors do think that the mcas or my infections could've caused the connective tissue problems even without a connective tissue disorder. Or some of them believe that bc they've seen it in patients whereas some of them think it's impossible to have cci without a connective tissue disorder, but I think that's bc they are biased. K know a bunch of people without global hypermobolity who have had cci after an infection or mcas or some inflammatory trigger
Could be rheumatoid arthritis in your neck. Have they tested you for that?
 
But the doctor who prescribed my ketamine isnt. A pain management specialist. Shes an immunologist and ID doctor treating me/cfs, mcas, and fibro. Shes just the only doctor I have that understands severity of my pain
Any U.S. physician has the ability to prescribe opiates, unless they’re under restrictions due to negligence or viewed as over-prescribers by the DEA or state agencies. You’d get further in your quest for pain control if you were to see an anesthesiologist with a sub-specialty in pain management.

Any controlled substance you are prescribed is on file with the DEA and each state has a different controlled substance database that communicates with the DEA’s nationwide database listing patients prescribed controlled substances.

You must be honest with a pain doc about all drugs that you’re taking, be honest about the dosage and frequency you’re using things, and let them know of your problems/successes with K. The doctor can and will look your info up in the DEA database to view the types, dates and dosages of opiates, benzos, etc. and who prescribed them.

I just want you to understand that this sub-specialty of anesthesiology is 100% geared to obtaining a reduction or eliminating people’s pain, and trying different drugs/therapies until you find something that works for you. They would have more knowledge of atypical drugs that might be effective for you, newer drugs, etc.

Doctors of other specialties are not trained enough in this area to provide you with your best shot at managing the kind of pain you’re experiencing. Other types of physicians, while permitted to prescribe pain meds, do not have the understanding and specialization that a pain management doctor has to offer you.

Good Luck!
 
Could be rheumatoid arthritis in your neck. Have they tested you for that?
They've done an array of tests, I assume they would've tested for that I think they did crp and rheumatoid factor but nothing besides mcas related inflammation stands out so far in blood works , and some high viral tigers and low igg
 
You should stay away from suboxone and buprenorphine in general. If a doctor knows that you are taking that drug, than they are likely to label you as an addict (because that is what addicts take for opioid addiction). Another reason for someone like you that is in pain to not take buprenorphine, is that it is an awful pain killer.
I mean I'm in agony and cant get a dr to prescribe normal opioids for pain and if I walked into a suboxone clinic and just said was an addict I'd literally get relief today--yes I'd be treated like an addict in the future by many docs but it's a sure thing I could get quick relief. Buprenorphine is not necessarily a bad pain killer , I dont know why so many have that opinion, it may not be as effective as full agonists but it can be fairly effective even at low or moderate doses, and it certainly is more effective than aspirin, no? I've seen promising studies on it for cancer pain, I've also taken it and its helped my pain, albeit not as much as full agonists.

It may be overhyped by addiction doctors and have stigma but I dont understand this idea that it cant work for pain, that doesn't seem to fit with the pharmacology. Partial agonists can still be rpetty strong
 
You must be honest with a pain doc about all drugs that you’re taking, be honest about the dosage and frequency you’re using things, and let them know of your problems/successes with K. The doctor can and will look your info up in the DEA database to view the types, dates and dosages of opiates, benzos, etc. and who prescribed them.
Yeah one thing that concerns me is that I'm on benzos for years but my doc said she can't prescribe both pain meds and benzos
 
Yeah one thing that concerns me is that I'm on benzos for years but my doc said she can't prescribe both pain meds and benzos
My doctor doesn’t want patients on benzos either due to the obvious increased risk for respiratory failure.

It may come down to you choosing between one drug or the other. Personally, if my pain is off the scale, I don’t care about benzos. The same thing is true for my anxiety. I’m really stressed and I’m back on benzos as of 13 days ago. My pain is a secondary issue. My main thing is anxiety at this point. I haven’t had any Oxys for weeks, and I am not missing it.
 
My doctor doesn’t want patients on benzos either due to the obvious increased risk for respiratory failure.

It may come down to you choosing between one drug or the other. Personally, if my pain is off the scale, I don’t care about benzos. The same thing is true for my anxiety. I’m really stressed and I’m back on benzos as of 13 days ago. My pain is a secondary issue. My main thing is anxiety at this point. I haven’t had any Oxys for weeks, and I am not missing it.
If it was. a matter of choosing I would choose opioids. But I'm physically dependent in benzos for years already and the withdrawal is way more dangerous than opioids, I cant simply stop. Given my tolerance I simply dont think it's dangerous to be on both meds at once with some monitoring and reasonable doses. I understand the reason for concern and state laws on this combination but I think its counterproductive and should be up to the doctors judgment. I really dont think my doctor thinks I'm going to get hypoxic from the small dose of klonopin and smallest dose of percocet, its more of a legal thing.
 
Suboxone is not used for pain management. It is used as opioid replacement treatment. It is made to completely overtake your opioid receptors, where nothing will work on them (including suboxone) once you get into the maintenance period. Suboxone is prescribed in 4 and 8 mg buprenorphine opioid receptor annihilation doses. This is the reason it is useful for opioid abuse disorder.
I grant that suboxone (not other forms of bupe) is used mainly for opioid use disorder and not pain management. But it can be used off label for pain.

The idea that partial agonists are not good analgesics just doesnt make sense. It depends on binding affinity and potency too. I mean, LSD is a partial agonist of the various subtypes of serotonin receptors its active at rather than being a full agonist but it's certainly not a weak psychedelic.

Mitragynine is an effective analgesic in people who are opioid naive. Buprenorphine has studies for pain in which itis effective but it's not rocket science, it's an opioid agonist that had strong binding affinity for mu opioid receptors, you really dont need science to know that it is effective for pain. I'm not saying it's good enough for everyone's pain , just that it can be a painkiller.

Heres a good study on buprenorphine use for pain https://insights.ovid.com/crossref?an=00000539-201808000-00036

Also the idea that buprenorphine is used for maintenance therapy for addiction solely bc it blocks other opioid agonists from working is totally wrong. Why would they also use methadone , which doesnt do that, if that was the case ? Furthermore why wouldn't they do monotherapy solely with naltrexone ? It's clearly bc it relieves withdrawal symptoms and cravings to some extent bc it is an opioid agonist , just with less euphoria and abuse potential than full agonists.
 
My doctor doesn’t want patients on benzos either due to the obvious increased risk for respiratory failure.
Also the physical dependancy is hell. A late friend of mine had a lot of seizures from benzo withdrawal trying to quit it. The only thing they should, in my opinion, be prescribed as is as an anticonvulsant, if you're already suffering from seizures. Although even then there are safer routes I'd try first.
 
The ketamine shouldn’t be used. It honestly is super easy to control opioid meds for patients if the dr wants to take the time to write out a plan for use and how to manage tolerance and the pharmacy have the means to dispense weekly for instance. There’s no feasible reason you’re not getting proper pain meds for a clearly painful issue.
100%

People like to focus so much on the people that develop addiction, that they forget that in most cases opioids are used without any issues whatsoever. How often do ppl get a Valium prescription after a surgery? Even strong opioids like Fentanyl are used effectively for chronic pain.

Yes, if you have an addictive personality in general and like to take various substances to "party hardy", you should stay the fuck away from opioids. Taking opioids effectively and successfully, without losing control over your life, is about administering self-control and sticking strictly to the script from the start - that's why there's a script.
 
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

What is the dose of ketamine and at what frequency?

Ketamine (aside from bizarre circumstances) should almost never be taken daily.
 
Ketamine (aside from bizarre circumstances) should almost never be taken daily
Huh, why so so many doctors prescribe it daily then? It is often used daily for pain management. Seems very common.

Anyway the dose was (bc I'm stopping) 60 mg /day
 
Yes, if you have an addictive personality in general and like to take various substances to "party hardy", you should stay the fuck away from opioids. Taking opioids effectively and successfully, without losing control over your life, is about administering self-control and sticking strictly to the script from the start - that's why there's a script.
I mean I dont even think opioids need to be totally avoided even in people with an "addictive personality " necessarily, often there simply aren't other options. Like you cant necessarily have someone have a major surgery and not have anything except tylenol , whether or not they may like the meds too much. Remember there's not always a solid , hard line between recreational use/abuse and medical use. Many people turn to street drugs for chronic pain when they cant get properly medicated , and many people get positive effects on mood from pain meds even though the predominant effects are on pain. In fact buprenorphine has been shown in some case reports to cure treatment resistant depression!! Rpobably better than ssris. And people used to use opium casually to self medicate everything from flus to injuries to insomnia or depression.

I think if stuff like MAT/suboxone was used both in pain management and opioid addiction more readily, without stigma , there would be way less concern or problems about the relatively rare scenarios where someone starts an addiction bc of pain pills.
 
So I saw a urologist. He said I could have interstitial cystitis and the ketamine could be irritating me but refused to say definitively I should stop it , be said it depends on what you have as an alternative. Which, besides self medicating x basically nothing lol. They checked mynurine for blood and did ultrasound to make sure it was emptied fully , and checked my prostate. He mentioned that there is a connection btwn mcas and interstitial cystitis x and he mentioned a drug that can treat IC but also causes temporary hair loss, and he said there are very few treatments in general and u mostly just have to avoid triggers. He also said to do a voiding diary.

So now that yet another doctor had okayed me taking ketamine and not detected damage and none have given me anything else , what do I do?
 
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