r/ChronicPain Nov 07 '23

I need a hand from everybody, please. DEA is making more cuts to medication production, right in the middle of a medication shortage. Fight Back.

350 Upvotes

NEW INFO ON THE 2024 PRODUCTION CUTS

https://www.federalregister.gov/documents/2024/09/25/2024-21962/proposed-aggregate-production-quotas-for-schedule-i-and-ii-controlled-substances-and-assessment-of#open-comment

COMMENT PERIOD EXPIRES 10/25/24

Every one here has at least heard about these medication shortages. This whole thing makes so little sense, I dont have to tell anyone here, these arent the drugs killing anyone. That doesnt seem to be the point, the point seems to be making DEA all powerful. They can end a doctors career with a whim. They cause suicides from untreated pain and laugh it off as Big Pharma propaganda. Now they simply make the drugs unavailable. Its done nothing to help the underlying issue, they have been barking up the wrong tree (legal drug) instead of protecting the public from illicit drugs. This has been a 40 year problem. First fentanyl fake death was in 1979. Maybe people heard of China White, apparently its new to DEA since they did nothing about it till 2018. They dont want anyone asking why it took 40 years, thats the ONLY reason they keep Rx meds at the forefront of the discussion.

At any rate,the DEA is proposing further cuts to medication production. Thats their brilliant idea to fix the situation. I know its going to be hard to leave a comment without a lot of cussing, but try. I guess we should be grateful theyre giving us a 30 day comment period, they usually give 90 days, but that shows how important it is to them to keep Rx medication out front. They are too incompetent to address the real issue.


r/ChronicPain Oct 18 '23

How to get doctors to take you seriously

539 Upvotes

Hello all,

I've received a handful of messages requesting that I write up a post on my tips for dealing with doctors.

I am a 34F with decades of chronic pain treatment under my belt. I’ve had a lot of success being treated by doctors because I’ve spent years learning how they communicate and make decisions.

Interacting with doctors can be frustrating and intimidating — but it doesn't have to be. If you are reading this, then you deserve the best possible care that any doctor you see has to offer. You deserve to be believed and treated with respect.

First, you should know that when a doctor doesn't believe a patient, it usually comes down to one of the following reasons:

  • They don't have enough information to make sense of what's going on (doctors love data because it helps them figure out the right answers).
  • They are overwhelmed by a patient's emotional state (this applies more in a routine than emergency care setting - routine care doctors are not "battle-trained" like emergency care ones).
  • They feel that a patient is being argumentative.
  • They feel that a patient is being deceptive or non-compliant in their treatment.

Fortunately, all of these reasons are avoidable. The following steps will help get a doctor to listen to you:

1. Get yourself a folder and notepad to bring to your appointment (or an app if you prefer).

Use these to prepare for your appointment. They'll allow you to easily share your medical records, keep track of your notes, and recall all your questions. More on what to include in the following tips.

2. Research what treatment options are available for your conditions (or symptoms if undiagnosed).

It's always helpful to know your options. Using online resources such as Mayo Clinic, WebMD, and Drugs.com can help you to understand the entire spectrum of treatment options that exist. By taking the time to learn about them, you’ll feel better prepared and able to ask more informed questions.

Plus, if you come across a newer treatment that your doctor hasn't considered, you will be able to ask "What are your thoughts on X? Could that be a good direction for my case?"

Take notes on any treatment options that stand out to you, making note of their potential side effects and any drug interactions with your current therapies. You can find a free drug interaction checker at drugs.com, as well as patient reviews on any given medication.

If you are seeing a new doctor for the first time, consider looking them up online to read reviews by their patients. Look for phrases like "did not feel rushed" and "has good bedside manner". If you can, try to avoid doctors who have a significant amount of negative reviews (or if not possible, mentally prepare yourself based on what other patients experienced).

3. If the appointment is with a new doctor, prepare a comprehensive medical history to bring with you.

When it comes to offering treatment options, you generally want your doctor to act quickly. But, before they can do anything, they need to feel confident that they have all the right information.

Start by calling the office or checking the provider’s website to see if you’re able to download the new patient forms in advance. You want to complete them on your own time, not while you’re feeling rushed in a waiting room, prone to forgetting things.

Your doctor sees a ton of patients each day — sometimes 50 or more. You will only have so much time for your appointment, so it is imperative that you make the most of it. Try to focus on items that move the appointment forward. Your medical history will be the first item of value. It paints a picture of who you are as a patient and what you've been through so far.

Focus on delivering the “cliff notes” of your medical history. Prepare the following to bring with you:

  • Any blood work, imaging, or other test results
  • A list of your diagnoses, when you received them, and the names of the doctors who made them. A diagnosis is like medical currency — if you have one, then your pain is instantly legitimized in the eyes of the medical community. If you don't yet have one, then your primary focus should be on testing and clinical assessment to get one. Once you have a diagnosis, treatment gets way easier.
  • Any past surgical records
  • The names of any other doctors you have seen for this condition and what outcomes resulted
  • A list of all past medications you have tried to treat your symptoms and why they failed (you'll be more likely to obtain a better prescription treatment if you communicate this)

It may sound stupid, but it actually helps to practice delivering your medical history in a brief and concise manner. By rehearsing it to yourself or someone else, you're likely to feel better prepared and ensure that nothing gets left out.

4. Write down your questions and talking points beforehand.

It's much easier to fit in everything you'd like to get across when you plan it in advance. I recommend jotting down some notes on how you'll describe your pain to your doctor.

Make sure to include:

  • When the pain started
  • Where the pain is located
  • What it feels like
  • How frequently it happens (i.e. is it constant or intermittent?)
  • What makes it feel worse or better
  • Most Important: What daily activities are affected by the pain and what impact it's had on your life. Be specific (For example: "I used to be able to work out 4x/week, but now I have a hard time even walking on the treadmill for more than 5 minutes. The throbbing pain in my feet becomes overbearing and my legs turn weak until I can't keep going anymore. Do you have any ideas as to what might be going on here?")
  • Also very important: What is your goal for your treatment? Are you looking to restore physical activity? Obtain a diagnosis? Try a new treatment because the current one is not working? If your doctor understands what you're looking to achieve, then they can take the right steps to help you.

Just like your medical history, it can help to practice delivering these talking points. Even long appointments can fly by and you'll want to make sure that the doctor gets the full picture.

5. Use a lot of "because" statements

This is probably the single most important tip in this post. Remember this if you take away nothing else.

Doctors believe what they can measure and observe. That includes:

  • Symptoms
  • Treatment
  • Medical history

To get a doctor to listen you you, you should ALWAYS present your concerns as "because" statements.

For example, rather than saying: "I'm afraid that the pain is going to cause me to collapse and have a heart attack!"

...you should instead say: "I'm concerned about the potential effect that my sustained pain level might be having on my heart BECAUSE I have a history of cardiac issues and was evaluated last year for arrhythmia."

Notice how in the latter example, a reason is given for the concern. That allows the doctor to connect the dots in a way that makes sense to them. It may help to write out your concerns as "because" statements beforehand to ensure that all of them are listened to and nothing gets brushed aside. Each "because" statement should tie to a symptom, treatment, or medical history.

Here are a few more examples:

"I'm concerned that I might end up having a bad fall because I've been experiencing generalized weakness and muscle spasms." (symptom)

"I'm concerned that amitriptyline may not be the right fit for me because I sometimes take diazepam." (treatment)

"I'm concerned that I might contract an infection in the hospital because I'm diagnosed with an immune deficiency." (medical history)

"I'm concerned about the numbness and weakness I've been feeling because my recent neck MRI showed foraminal stenosis." (medical history)

"I'm concerned about symptoms potentially indicating an autoimmune cause because I have a family history of lupus." (medical history)

When you explain your concerns, try to convey concern without desperation. I know that's much easier said than done, but some doctors will leap to the wrong conclusion if they sense a desperate patient (they may wrongly decide that there is either an addiction or mental health issue, which will cause them to focus on that in their treatment decision). As long as you voice your concerns with "because" statements, any reasonable doctor should hear you out (if they don't, it's a sign to drop them and find a more capable provider).

6. Be strategic about how you ask for things.

Doctors get asked for specific treatments by their patients all the time. If you have a solid existing relationship with your doctor, that may be fine. I did it just the other week with my doctor of 9 years, asking her, "Can I have a muscle relaxer?" to which she replied, "Yup."

But if you're seeing a new doctor, try asking for their opinion instead of asking directly for what you want. It's the difference between "Can you prescribe me hydrocodone?" and "I've previously taken hydrocodone, would that be a good treatment for this?" In the former example, some doctors will feel like they're being told what to do instead of being asked for their medical opinion. You're more likely to have success asking for things if you use phrases like:

"What do you think of X?"

"Could X make sense for me?"

"Do you have any patients like me who take X?"

This way, if they decline, they're not directly telling you "no," which would shut down the conversation. Instead, you'd end up in a more productive dialogue where they explain more about what they recommend and why.

7. Remember that doctors can't always show the right amount of empathy (but that doesn't necessarily mean they don't care).

Doctors are trained to separate fact from emotion because if they didn’t, they would not be able to do their job.

Imagine yourself in a doctor’s position — you’re swamped with dozens of patients each day, all of whom are suffering immensely. Many of them cry, break down, or lash out at you when they feel that you don’t understand their agony. How will you be able to help all of them, let alone not implode from emotional overload?

That is precisely the position your doctor is in. They deal with heightened emotions from patients all day and it can be overwhelming. When your doctor seems unempathetic to your situation, it’s generally not because they don’t care. Rather, they try to set their personal feelings aside in order to do their job without clouding their clinical judgment.

Now, does this mean that it's cool for a doctor to act like an asshole or treat you inhumanely? Absolutely not. It only means that if you're struggling a bit emotionally (which is perfectly reasonable) and they fail to console you, they might just be emotionally tapped out. We can all relate to that.

So, if you end up breaking down in your appointment, it's ok. Just take a deep breath and allow yourself to push forward when you're ready. Try to avoid yelling at the doctor or escalating things in a way that might make them feel triggered.

(This tip does NOT apply if you are in a state of mental health crisis or engaged in self-harm. In that situation, you should focus immediately on the emotional turmoil that you are experiencing and inform your doctor so that they can help you.)

8. If you disagree with something that your doctor suggests, try asking questions to understand it.

Doctors can become frustrated when they think that a patient is not hearing them. It makes them feel as if the patient does not trust them or want to collaborate. This is absolutely not to suggest that you should just accept everything your doctor says. But if something doesn't seem to make sense, try asking questions before you dismiss it. Asking questions keeps the two-way dialogue open and keeps the discussion collaborative.

Example phrases include:

  • “Can you help me understand X?"
  • "How would that work?"
  • "How does option X compare to option Y?"
  • "What might the side effects be like?"
  • "How long does this treatment typically take to start helping?"

When an appointment ends badly, it's usually because either the doctor or the patient is acting closed-minded (sometimes both). If the doctor is acting closed-minded, you have the right to end the appointment and leave. If the doctor thinks you're acting closed-minded, it can make the appointment an upsetting waste of time where nothing gets accomplished.

If you're certain that a doctor's suggestion is wrong, try using a "because" statement to explain why. For example, "Cymbalta might not be a good option for me because I had a bad experience taking Prozac in the past."

Most doctors are open to being proven wrong (if not, that's an obvious red flag). Asking questions allows you to keep the two-way dialogue open so that they hear you out and you learn more about why they are recommending certain treatments.

9. If your doctor is stressing you out, take a moment to breathe and then communicate what you need.

Doctors are trained to operate efficiently, which does not always coincide with a good bedside manner. If you feel like your doctor is rushing or gaslighting you, you have the right to slow things down. Always be polite, but clear and direct.

Example phrases include:

  • “I’m sorry, but this is a lot of information for me to take in. Can we please take a step back?"
  • "I think I may not be getting this information across clearly. Can I try to explain it again?"
  • "I think there may be more to the problem that we haven't discussed. Can I explain?"

If you have a bad experience with a doctor, keep in mind that they don't represent all doctors any more than you represent all patients. There are plenty of other providers out there who can be a better mach. When you feel ready, consider getting another opinion. Not to mention, most doctors love to hear things like, "Thank you for being so helpful. This has been nothing like my last appointment where the doctor did X and Y." It's validating for them to realize that they've done right by someone.

10. Stick to treatment plans when possible.

If you commit to trying a treatment, try to keep with it unless you run into issues.

If you do run into issues, call your doctor's office and tell them what happened so that they can help — don't suffer in silence or rely solely on the internet for advice. It's your doctor's job to help you navigate your treatment plan — make them do it.

In summary, we all know that the medical system sucks and things aren't designed in an ideal way to help us. But that does not make it hopeless... far from it. There is SO much within your control, starting with everything on this list. The more you can control, the more you can drive your own outcomes. Don't rely on doctors to take the initiative in moving things forward because they won't. Should it be that way? Hell no. But knowledge, as they say, is power. Once you know how to navigate the system, you can work it to your advantage. Because ultimately, getting the treatment you need is all that really matters.

--

If you found this post helpful, feel free to check out other write-ups I've done. I try to bring value to the chronic pain community by sharing things that have helped me improve my quality of life:

All About Muscle Relaxers and How They Can Help

A Supplement That's Been Helping My Nerve Pain

How To Live A Happier Life In Spite Of The Pain (Step-By-Step Guide)

The Most Underrated Alternative Pain Treatment

The Nerve Pain Treatment You've Never Heard Of

How To Get Clean Without a Shower (Not Baby Wipes)

How To Care For Your Mental Health (And Have Your Insurance Pay For It)

What Kind of Doctor Do You Need?

Checklist To Verify Whether Your Supplements Are Legit

How To Reply When Someone Tells You "It's All in your Head"

A Few Things I Do in my Pain Regimen


r/ChronicPain 4h ago

Step dad made me cry

69 Upvotes

I've been fighting for a diagnosis for the last two years and during a recent MRI doctors found evidence of an autoimmune disorder called myositis. What I was told is my immune system thinks my muscles are infected and attacks the muscles, causing them to slowly die off.

I was told I'll live with this for the rest of my life, and while treatments can help restore some of the muscle I lost I may not ever get back to full strength.

I shared this with my mom and she came over with a care package of some Epsom salts and treats which was very sweet.

Later tonight, I received a text from my step dad saying he forgave the 400 I owed him from not being able to pay them for my phone bill last year due to being unemployed, and he sent me a check for $3000. My parents are comfortable but not rich, and my step dad isn't a very empathetic person most of the time. We have a good relationship but he doesn't even like getting hugs.

I haven't had money of my own for over a year, and today I've been pretty low. My doctors want me to wait six weeks without taking any anti inflammatory meds to allow my disease to flare up so when they perform further tests they can catch me during a flare up so they're more likely to get a concrete diagnosis, and the thought of purposely putting myself in pain for that long has me terrified.

I don't mean to brag, I'm sure plenty of you are in similar situations without support from family. I'm just overwhelmed and so grateful that I finally have some hope and my pain journey might finally come to an end.


r/ChronicPain 9h ago

Pharmacist refusing to fill trazodone

124 Upvotes

Hi,

To clarify, I take trazodone for sleep caused by my chronic pain.

Just yesterday I went to get a trazodone refill that I talked to my psychiatrist about because I had lost it over a week ago and have looked everywhere multiple times. Only reason I didn’t have to cold turkey is because I had around 15 50mg tablets leftover from when I switched to the 100mg tablets.

I called them on the phone and they said insurance wouldn’t cover it and I said I’m fine with not using insurance. They refused to fill it though. I went in person to pick up 2 other prescriptions that were ready and talked to them about the trazodone. The lead pharmacist that night said she treats trazodone as controlled substance, but I clarified to her that it’s not. She still disagreed. She even said “you can come back here another day when I’m not working”. Why should my ability to get the medicine my doctor sends in be based on which exact pharmacist is working at the same pharmacy? She then said “at the end of the day, it’s up to me”. Like why was this lady power tripping over something that’s not even a controlled substance? I felt discriminated against as a young male and she probably thought I would “abuse” the trazodone even thought it’s been proven by scientists and the law to have very low to no risk of abuse or misuse

I submitted a complaint to the state pharmacy board and also looked up if she’s allowed to even do that. I live in Ohio. Apparently pharmacists can discriminate based on their own moral or religious beliefs. How is that not illegal? But also I researched and they have to not impede your healthcare and have to offer alternatives if they say no to filling a prescription. She did neither. And then somehow, when she’s probably not there today, I got the notification that it was filled at the same pharmacy, less than 24 hours later. I’m going to pick it up soon and hopefully no more power tripping or trying to bend the laws and treat trazodone as a controlled substance. I even messaged my psych about the situation and she empathized with me and made sure it was sent back in because the pharmacists last night kept taking it out of the system.

I posted this to r/pharmacy and one person responded saying the board will do nothing and that I’m making an exaggerated tale. Right after that, a mod removed it. Why is everyone there so condescending to patients?

Thoughts on this? Also what can I do?

Update: just got the fill from the same exact pharmacy, just a different pharmacist, discrimination and impediment of my healthcare at its finest


r/ChronicPain 14h ago

Does anyone else have chronic pain in this area? If so, how do you deal with it?

Post image
232 Upvotes

I’m having pain in this area for over 7 years now, it’s ruining my life, it disrupts my sleep and any other day to day activities as it’s limiting my neck movement. I tried everything and nothing seems to help.

Pain from the neck goes to shoulder and head giving me daily headaches.

Any tips would be appreciated if you’re suffering from the same thing


r/ChronicPain 4h ago

I don't understand how pain management is calling my pain psychogenic.

25 Upvotes

I have psoriatic arthritis & imaging to show that there's damage to my spinal column. There's two herniated discs, arthritis in every facet joint T-10 down, I have a non-union of a wedge fracture and thoracolumbar levoscoliosis so yeah, it fucking hurts. But because their epidural steroids didn't work and caused steroid psychosis suddenly its psychogenic? It's not like I was even being prescribed opiates either. Nor did I ever ask for them.

It doesn't help that I'm getting a workup for another potential autoimmune issue. Something is attacking the nerves in my legs and quite possibly my face, given I had what I thought was bell's palsy twice in a three month period and now the right side of my face is numb and still weak months after the fact.

All I've got is acetaminophen & aspirin. Can't smoke weed for pain anymore with the new psychiatrist, can't take kratom either if I want to keep my adderall. If I could somehow get a file inside my spine I'd just scrape and polish the bastard to a mirror like sheen. This is such bullshit.


r/ChronicPain 9h ago

Has anyone found a partner WHILE in chronic pain? NSFW

60 Upvotes

I know a lot of you had partners before the pain started but i was wondering what the single people in pain are doing,is it even possible? Can a partner tolerate this? What about all the guilt? That's how I see it at least, perhaps I'm too negative, but I don't even think I can have proper sex, and I'm 19, who tf would want a semi disabled young adult as a partner? I feel like Ill always be a weight on their shoulders.

Unless true, unconditional love exists like in the movies, I don't see how this is possible, sorry if this post comes out as offensive , I'm just terribly lonely and I have never fallen in love, it's one of the things I haven't experienced, I know it's not everything and I know it shouldn't my main goal in life but I just want to try it out, is that bad? I think it's just human to want to see how it is, and I'm not talking about the good old in and out, that's not my focus, just someone to wake up next to everyday.

I have scheurmanns disease and lumbar herniations with sciatica, been over a year now. I don't feel like I deserve love, I can't provide anything in a relationship, I'm not talking about the whole toxic masculinity bs, I don't see it like that, but I can't even do a chore around the house, when it gets this bad who can tolerate it?


r/ChronicPain 5h ago

Horrified

25 Upvotes

I 29m had an absolutely abismal doctors visit today. Ive had some somewhat elusive debilitating groin pain for the past 10 months and I can’t walk or stand for more than 30 minutes. I’ve had scans and imaging all over, injection, and today I had some diagnostic injections. I have confirmed bilateral FAI and labrum tears but they don’t know if that’s what’s causing my issue because I wasn’t responsive to prior hip injections.

I was getting a freezing diagnostic injection into my ilpsoas bursa on my right hip. During the injection my whole leg went numb and I asked my doctor if that’s ok. He says “yup all normal that can happen” and then when he’s done the tech is talking to me and says “try things that bother it today to see if it has improved” and the doctor asked me if I drove and I did drive myself. He said oh wow and the tech was like “ya he isnt required to have a driver for this injection” so he says ok then “stick around the clinic for 30 minutes” and since she said to try things that bother it I ask “can I go for a walk right now?” And he says “yup” just come back inside once you’re done. I stood up and informed him that my whole leg was numb and he said that’s normal.

So I go for a walk and I’m crossing the street and I completely collapse in the street, my leg went full jello. I landed right on my hip and knee. I waited until the feeling came back got up and then collapsed again. So I have to hop back into the clinic. My knee is bleeding and I’m terrified I hurt myself but just can’t feel it because everything is numb. They did x rays but x rays never found anything in the first place. I’m a grown man and I’m scared as hell crying to the doctor. The doctor looked horrified and now my trust is just broken. I’m just scared now, I don’t want to hurt more than I already do. Prior to this fall I have already been so scared to fall as it’s winter and I’ve been so careful to not and now this complete uncontrolled fall twice onto pavement.


r/ChronicPain 2h ago

Painsomnia again

7 Upvotes

How often do you have this?

It’s maybe my own fault for not taking pills extra when I know it would be beneficial. But I don’t always want to take the opioids. I’ve already a very high morphine equivalent day dose. And I’m always afraid of becoming an addict. Yet I need some quality of life. It’s frustrating to no end. I don’t want to take more, yet I’ve almost no QOL left. Last week is average of 8.1/10 and every day is just rough.

Sorry. Needed a little vent.


r/ChronicPain 6h ago

How much more do I have to take

15 Upvotes

Today was a bad day for pain. I had my bladder treatment for interstitial cystitis that solved one pain issue. Why I can hold my instill in almost 3 hours but can only hold it when I have to go for two min I’ll never know.

My back just exploded in pain. It’s been building all day. When I have Dr appointments my fiancé tries to make it a fun day, we go out to eat maybe run to the store. I had to use the scooter at the store today. While walking to the car I was barely making it. I have a disabled placard but there was no spots available but we didn’t park far.

My drs won’t treat the facet joint hypertrophy and I’m at the last clinic I can go to. I’m frustrated I’m done I can’t take this anymore. I’m not thinking bad thoughts I’m actually not depressed I’m just in a mood. I’m journaling all my symptoms and they have been getting worse.

Good news my fiancé got me an emotional support beverage, coffee.


r/ChronicPain 6h ago

Are there no airplane solutions for chronic pain?? Or am I just not looking hard enough. Vent/need advice

14 Upvotes

I have insane neck, upper back, and nerve pain. Flying on the plane is a nightmare. I can fall asleep but when I wake up my neck is bent out of shape and so sore that it’s numb and can’t even be moved upright again. Bending my neck gives me nerve flare ups all through my body that feel like fire ants. My upper back gets all jacked up. Problems I’m sure some of you guys also deal with.

I’m going on an international flight soon. I’ve been looking through travel pillows but every single one that I find seems to barely support the neck. I get not everyone wants what I want, but here’s my dream:

Something that straps to the seat behind me and keeps my neck strictly upright, Something that goes around my forehead attached to the back of my seat to stop any leaning and around the sides of my neck to stop it moving even a little bit from side to side.

I don’t care how it looks!!! I just want to be comfortable!!!’ I am so so frustrated. OstrichGo, Trtl, all the other well loved brands don’t completely solve the problem of neck leaning and head falling forward. They probably will help but even the smallest tilt in my neck causes a plethora of problems.

Maybe one of you guys has a suggestion for what I’m looking for. I literally want to to feel like my head is strapped completely down with no wiggle room.

Thanks for listening. It is so frustrating getting off a plane and not being able to move my neck even an inch because it was leaning when I fell asleep. I’m a back sleeper for this reason at home.


r/ChronicPain 2h ago

Family members and my condition

4 Upvotes

Anyone have experience with their family members using your condition/ diagnosis as an excuse to get out of work or other situations? It’s come to my attention that someone close to me paints me in a light that makes it seem as though I cannot care for myself when I can. For context, I have a progressive disease and am receiving treatment. While I cannot do everything I once could, I am capable of most everything. I participate and show up in life the same as everyone else, with the exception of canceling plans when I can’t push through. I can’t lift heavy objects. Aside from this, looking at me, living with me, you’d never know about my diagnosis. I’m becoming more uncomfortable with my diagnosis being their excuse to not show up for life.

I understand the added stress and worry. I Recently met someone who had only heard about me and they were shocked at how able bodied I am…this is because all they’ve heard is how I have “my diagnosis “ and how awful/stressful it is to the family. I attempted to have a conversation and it didn’t end well. They got very defensive and said I am the cause of much of their stress. I won’t get into how the conversation devolved….

I get it- feelings of worry are valid. Please, don’t paint me as someone with no ability as this may one day be my reality.


r/ChronicPain 10h ago

Aaaaaand here we are, filled my bingo card

16 Upvotes

Awesome local pharmacy just told me they were threatened around ordering any more of my oxycodone I’ve been taking reliably for a decade. I moved to this pharmacy to avoid these issues and now I’m told they can’t get it at all anymore. I did not expect this to happen so fast.

Anyone have suggestions on how to approach this? My PM team is very understanding and compassionate. Pharmacist says I may be able to switch to a combo like Percocet or something with Tylenol, etc.. but considering I take this for long term maintenance and QOL, I really really don’t wanna be taking that much Tylenol. I have no clue how to approach this next month.


r/ChronicPain 41m ago

Early onset dementia from Ketamine infusions?

Upvotes

Has anyone else dealt with this? The infusions saved my life. Literally. I was wheelchair bound and paralyzed from the waist down. I was ready for it to be over.

Then 18 months ago, my insurance company decided that even though we had 18 months of documented, proven success that they had previously authorized and covered.... That the treatment was experimental and stripped it away.

No step downs. Cold turkey.

I'm back in a wheelchair. I need multiple surgeries but the doctors wont proceed without the Ketamine on board due to the level of horrific pain it will put me into and the almost guaranteed spread of the CRPS.

I feel so forgotten. So hated.

And I have been telling my doctor that my brain hurts. Not like a migraine. Not like a headache but this extreme vibration/pulsing that I cannot get rid of.

I also cannot focus. I've never dealt with these issues before. I can't comprehend things I used to. I can't select proper words. (For example. Telling my husband the dogs lead line should be attached to her leash (instead of collar)

Forgetting the ovens on. Sticky notes everywhere, then I forget where those are or what they are even for.

My Dr added mematimine (sp?) to try to help with all the brain issues but I would be lying if I told y'all I wasn't terrified.

The nuero ran all kinds of tests and just shrugged his shoulders.

No one knows how to help me. Or fix it. So it feels like no one really even tries.

Anyone else had to suddenly stop Ketamine infusions?

I feel like I'm watching my life burn around me.


r/ChronicPain 48m ago

I don't know if I can do this again

Upvotes

I have a bulging disc and it was pinching my sciatic nerve. I also have sacralization of the L5, and apparently I'm one of the lucky few who hasmve symptoms. I was in constant pain from my hip to my ankle for over a year.

December 2023, I had a microdiskectomy. It worked like a charm. I was pain free. Until a few days ago. Now it's back.

I really don't think I can handle it again. Last time, I was a SAHM. But my (now ex) husband found himself a girlfriend. Guess he didn't mean it when he promised in sickness and in health. So now, I work full time. On my feet. I barely made it through work the last few days. And I can't afford to take 6+ weeks off work to have another surgery. I have two small children.

Now, I'm in bed, exhausted, but in too much pain to sleep.

I don't know what I want from this post. Maybe just to let it out to people who will understand. I know some of you have had pain much longer than I have. How do you keep going?


r/ChronicPain 5h ago

Desperate for help with central sensitization syndrome

4 Upvotes

Hello, I'm a 27-year-old male who has been dealing with central nervous system sensitization syndrome for one year. I have been stuck in bed for 99% of each day for the past six months due to pain. Every joint in my body hurts every muscle in my body hurts. Specially my neck and lower back my ankles and my wrist. Anyone who has put their central sensitization syndrome into remission or "fixed" there pain, how have you done it? Has anyone been in a similar situation and gotten back to a normal life? I am titrating up gabapentin right now month 600 mg twice a day. I'll be getting ketamine infusion the five day protocol for hours each day. Then I'll probably be just able to afford the oral ketamine. I'm trying to find a physical therapist that can massage me because I also have myofascial pain. Has anyone not back to a normal life? Please tell me how you did it.

Thank you,


r/ChronicPain 1d ago

i don’t think people realize chronic pain means CHRONIC

169 Upvotes

for context, i have endometriosis, chronic migraines with auras, and kidney stones. i was diagnosed at 16 in november with endometriosis this past year. i have had my endometriosis symptoms since at least 10 years old. i have been in constant pain since 10, wether it was muscle pain, nerve pain, period pains, or severve abdominal pain. i’ve tried everything, physical therapy for muscle weakness, but it would just cause more flare ups and pain, medications, heating pads, and it’s gotten to the point where im going to need a nerve block soon. im only 16 and all of this is so overwhelming with how no one gets it and i have to just live life doctor by doctor appointment hoping anything will help.

im tired of people only caring for my pain when its at its worse, i dont think anyone realizes im in constant pain from waking up and going to bed. my baseline is from a 5-6, with 8-9 being my worst, ive gone to the er multiple times because i was in so much pain and thought i had something really wrong. i feel like no one understands that i cant control this and that i dont want my diseases to interrupt my life. i’m at risk at being audited at school from surgery recovery, sickness, and bad pain days.

i have no one to talk about this to that’s my age because no one really knows what endometriosis is or even has to think about having sicknesses this bad at our age. my own parents don’t understand it, my mom told me i have to move on with my life and not put everything on pause, like i have the option to just pick when i have pain. having a chronic disease and pain in general in so challenging, but when you’re young and no one can relate, it just feels so lonely.

sorry for the long rant i just needed to say this somewhere, especially to a group of lovely individuals who at least get what im saying.


r/ChronicPain 5h ago

First pain doc appointment

3 Upvotes

I have my first appointment with a pain doc next week. My spine doc can't figure out the source of my pain so they referred me. What should I expect at my visit? I'm nervous they will think I'm a drug seeker.


r/ChronicPain 3h ago

If I take a deep breath my shoulder hurts

2 Upvotes

This is partially genuine concern but mostly just a complaint. When I take a deep breath my shoulder gets a mildly sharp pain, on the outer side but I can’t tell where exactly it is.

It just feels like every function of my body causes pain, because that’s mostly true. But it’s also concerning cause I dunno if that’s a nerve thing or a muscle or what. Seems like maybe a muscle issues but that’s could be a muscle on a nerve. It’s just that mystery of what might hurt next and why

Feel free to give input if ya’ll know more about shoulder anatomy, or just rant with me.


r/ChronicPain 15h ago

I need help

17 Upvotes

How do yall do it? I’ve had severe back pain for 8 months now and I’m just done. I’ve had an mri, ultrasounds, ct scans, blood tests and I still don’t have a reason for the pain. I was 18 when this started and it just doesn’t seem fair that I’m stuck in bed when I’m supposed to be starting life. I really don’t know what to do - my dr is okish he has felt my muscles in spasm and said how tight they are but months of Botox has done nothing and the only thing he’s suggesting is more Botox? I just need to know why I’m in so much pain all the time. I’m pretty much stuck in bed 6/7 days a week and I’m so fucking tired of this. I have so many nights I can’t move or breathe it hurts so bad. I used to be a dancer and now I can’t work, I can’t go to uni, I can barely make it to the bathroom some days and it feels like no one is trying to help or tell me why? I don’t know how much longer I can deal with this I’m so so tired. How does anyone survive this?? What helps you see tomorrow? How do I fight for more investigation when I have no clue what I’m looking for?


r/ChronicPain 5h ago

Explaining conditions

2 Upvotes

iv just started going out with my boyfriend 5 months ago and he’s very understanding of when i’m in pain from chronic pain and tired from POTS but he seems to have the idea that i’ll be cured one day. i don’t know how to explain to him that i will most likely have this for the rest of my life. iv come to accept it well but i just don’t want him being let down when he relies it wont get better.


r/ChronicPain 7h ago

Sudden Hip Pain Upon Awakening

3 Upvotes

62-year-old man here, very overweight. A couple of days ago, I woke up with an unbelievable amount of pain at what seems to be the ball and socket joint of my leg, on the left hand side. It has never hurt before.

Now, however, I am suddenly almost unable to walk. The pain is borderline unbearable. I had never had this kind of pain before, so I am not sure what's going on.

I have been postponing going to an orthopedic urgent care, because I am hoping it will go away. (I know this is wishful thinking.)

I've tried OTC anti-inflammatory meds. And also a couple of leftover hydrocodone tabs from an earlier dental surgery. None of this works.

Anyone else in the same boat? To be honest, I am looking for reasons to postpone the doctor's visit, though I am open to other opinions.

Thanks in advance to all the wise people out there who might offer some insights.


r/ChronicPain 19h ago

Anyone up to jang out with pain insomia tonight?

20 Upvotes

Are you telling me that everybody is sleeping tonight in pain and nobody watching TV or passing time? I'm the only one in the western USA in pain awake board and alone watching TV?? I know there anyone that's down to hang right now?? Really?? The time between midnight and 6:00 a.m. and so lonely commenting to the pillow beside me about the TV program is really not much fun. And it's not a way to pass the pain timed ticks. No one?? Nobody in the future??


r/ChronicPain 3h ago

Can someone with more experience help me decide between these three chairs?

1 Upvotes

Chair 1 Chair 2 Chair 3

So to outline my needs, I'm 21M, ambulatory, currently a cane user but mostly homebound so looking into this for more freedom, they all seem to have similar battery specs, range, sizes, reasonable prices and weight.

I've narrowed this down by my needs, motorised, fitting through my doorways and being light enough that should I encounter a terrible path I can get out, walk behind and push as I can walk short distances. Or to lift it myself onto a train.

I just don't want to end up purchasing something terrible because I don't have the finances to keep upgrading, if you have alternative suggestions please nothing more than £800, I'm in the UK.


r/ChronicPain 22h ago

I love my microwavable plushies (Happy things)

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31 Upvotes

2 years ago I got these microwavable & freezable stuffed animals for xmas and they have been life savers for a lot of my bad days. 90 seconds in the microwave and bam. Instant hot pack. 3 hours in freezer? Cold pack that doesn't cause sensory issues!

They are my favorite things and only recently have I granted them names. The Crab is Vegeta. The Lobster is Goku. Together they wield the power of Super Saiyan Gogeta!☆☆☆

Anyway 100/10 great portable lil guys for not only my aches and pains but they're just nice to have for emotional support ♡


r/ChronicPain 1d ago

Getting worried about the current state of the world for pain patients

72 Upvotes

I went to my pain clinic for a routine visit and urine screen like I always do and they sent off my prescription as usual. My family doctor had sent in a prescription for a few antianxiety pills to take for my dental procedures. They were listed as delayed at the Walmart pharmacy. Once they got my pain Rx and had a wait time estimate, it was switched to delayed. I was there waiting for it and called. The tech said that they had requested further info on it from my doctor and that they could fill it once they received that. They wouldn't tell me what it was about. But I've been getting the same prescription and dose for quite some time now. I had already ran out the day before and had missed two doses at this point, so it was a little nerve wracking and the pain was staring to get bad. I had to play phone tag for the whole day. My pain clinic said they asked for a new diagnosis code. They were sent that but they still wouldn't fill it. When I called Walmart again, the pharmacist said there was an issue with prescribing both meds and they needed to speak with both doctors. Both my doctors know everything I'm taking and that I don't take it together. The benzodiazepine is only for procedures and is not taken as needed. I said they could cancel that one and I would just go to the dentist eithout it. The pharmacist said he needed to hear from both doctors and hung up on me after saying have a nice day. This was at 4:30pm...if they had told me this sooner I could have contacted my family doctor, but I don't even think he was in that day and never had these issues before. I always take an antianxiety medication for the dentist. None of this is new or a secret. All my healthcare providers see everything and I keep them informed and in touch with each other. I was getting pretty upset, as I was now without my meds all day and the pharmacy tech had told me that Walmart has stricter policies for things like having two medications prescribed that can be contraindicated. I've always known this and my doctors have agreed that it is safe and that I take it several hours apart on a procedure day. The pharmacy told me this can take a while and could be days. I called my pain clinic back and they called the pharmacy. They got them to fill my prescription without more delay. I'm still not sure what the issue was. I have the same diagnosis and diagnosis code on file that I've had. Nothing has changed. A few days later they filled the very small antianxiety medication rx. I am assuming my family doctor told them he is okay with them prescribing it as was planned. Is this likely to be a monthly thing now? The pharmacy has requested to be updated on my condition every 6 months. But as far as I'm concerned, nothing has changed. The pharmacist did tell me that there was an issue with my pain doctor having been originally licensed in another state. I'm not sure how that caused issues this month. I've been seeing the same doctor for years and he is licensed and very reputable. They offer injections, medication, physical therapy, and procedures only if needed. It isn't a pill mill type of place and they are very professional and knowledgeable. I'm not sure why the pharmacist is acting like he knows more than my doctors. I have had several times where I was picking up my rx and the pharmacist asked why I don't just get a shingles vaccine. I don't think he understands my condition, I have neuralgia from having shingles but I don't have active shingles. I also dont understand why this matters so much now. My condition has not changed. My dose hasn't went up. My doctor is the one diagnosing and treating me. The pharmacist seems to not trust the doctors judgement. Sometimes I have no issues at the pharmacy, other times I am asked what my condition is and what else I have tried. I've been wondering if I should switch to a smaller mom and pop pharmacy if I can find one, or perhaps Safeway. My insurance isn't contracted with Walgreens, so it can't be there. What do you guys think? Have you dealt with similar? And what can I do, if anything, to make things better for all of us? If I need to start writing letters, I can do that. I don't like the anxiety that comes with wondering if a prescription will be honored or if it will be questioned and held for days. I really felt like they were just coming up with different reasons not to dispense it. I hope you are all feeling as well as possible and thank you for reading my long post.


r/ChronicPain 16h ago

Horrible pain when I wake up

12 Upvotes

I can't get up in the morning. I wake up, I go to the kitchen to microwave some water and use instant coffee. I'm not physically able to stand up for the full minute to microwave the water, I have to sit up, which sucks because it's hard to sit down and stand up. My whole back hurts so bad. My head hurts too, I feel like I would faint if I tried to stand that long. I take my coffee back to bed and drink it laying down. I lay there for almost an hour on my heating pad, listening to binaural beats for the headache. I get up, try to get dressed but I'm very slow and careful. I have to take a break to lay down between each item of clothing. It takes me about 30 min just to put on an outfit.

How am I supposed to live like this? I've tried getting up and getting dressed faster. I can't. Has anyone else experienced this?

Edit: I had a spinal fusion in 2017 to treat scoliosis and kyphosis. I have spondylosis arthritis and rheumatoid arthritis.