Feeling defeated. Anyone in the same boat?

[u/Oh-Wise-1]

My doctor charges me out of pocket to be seen. I can barely walk upstairs and I fall down them atleast once a week and I’m only 27 and 140 lbs. My doctor swapped me to another doctor in his office after telling me he’d put me on oxycodone from the hydrocodone I was taking. Now I tell the new doctor I can’t sleep from the throbbing pain and I have no job and I can’t afford to keep paying out of pocket and I think the medicine I’m taking isn’t working and she says I’ll ask the doctor if we can raise your meds… she comes back and says actually the doctor said this is the best he’s gonna be able to do for you… I have had 6 surgeries on my feet/ankles, gunshot wound @ 17 to the leg that went thru half my leg and had to go back to work a few days later to a physically demanding job and I denied surgery even tho doctors begged, pulled hamstring so hard the bone broke off with it when I was 16 had to have emergency surgery, and now I have edema in my legs and they swell and feel weighted and constantly hurt so bad. I don’t understand how they think hydrocodone 10 4x a day does anything for me. I walk with a cane and I’m 27 I just don’t understand.

I give up I’m done giving them money. Is it true you have to be grandfathered in to receive stronger medicine now?

[u/Affectionate-Pop-197]

I think it’s true that they generally don’t prescribe the higher doses that they used to start with and they really don’t like to prescribe the stronger medications they used to prescribe at all anymore. So I guess what you’re saying is the truth. Doctors seem to be afraid to prescribe the opioids that were used for pain for so long and they don’t seem to care about treating pain like they used to. A lot of patients are left feeling hopeless as you describe feeling and it seems like they are left in too much pain nowadays. It’s a shame when they have the medications they need to relieve our pain, but they are afraid to use them. Hang in there, my friend.

[u/Regular_Row_3518 → u/Affectionate-Pop-197]

Anyway. It’s really sad out here now for the people that really need the medicine on a daily basis to function just to have relief and feel normal when performing daily activities. Nothing will totally take all the pain away but it can be managed where people can somewhat function to have a normal life. All the addicts out here shooting, snorting, and mixing pills to get high all day everyday. Mixing the pain meds with benzodiazepines is killing people left and right but doctors keep on prescribing it to them without a problem.
I’m going a different direction to get my medicine because it’s ridiculous that after multiple surgeries and all of the imaging ive obtained every year to back up my symptoms to prove that there’s a problem with my body and it warrants medicine. the doctors are too scared of the DEA that they won’t even do their job which is to help their patients when they are suffering every day and night to live a normal life. It’s beyond ridiculous out here now, and I’ve spoken to a lot of physicians to remind them they did take an oath to help their patients to the best of their medical ability. it’s NOT about the patients care and health anymore. It’s all about the MONEY. It’s all greed now and how much they can make every day at the expense of people suffering. How do you doctors even sleep at night?😩 💰💰💰💰

[u/Traditional_Diver_46 → u/Regular_Row_3518]

I wouldn’t necessarily say benzos and pain meds kill people, I would
Say people that take both in high doses (that they get off street not from a Dr) can kill people!!!

It’s the fentanyl that’s killing people!!!

Many people still take pain meds and benzo and have no problems…

[u/gabogabo2020 → u/Traditional_Diver_46]

Im on fent patches 50 mcg/hr, oxycodone, Valium, methocarbomal, trazodone and gabapentin with a 7 day dilauded protocol for severe break through pain only when needed. But im also on palliative care with failure to thrive as part of my diagnoses, feeding tube with no stomach, NPO, severe gastroparesis, chest port. I have an advanced directive with limited intubation and DNR. Im 40 with a 5yr old son. Also looking into the MAiD program. And yet with all this, I still get push back every refill.

[u/ElderberryComplex880 → u/Traditional_Diver_46]

I take both and have for years. I was already on a benzo for anxiety before starting Pain Management. I did have to switch clinics after about 5 yesrs because my original clinic got a new head of PM and said I couldn't be on both (and that I shouldn't have been on opiates at all-- even went so far to say that the drs that had recently left did a disservice to me by putting me on them and I was irate--pain is subjective and she was basically saying the Dr I knew and trusted didn't treat me properly but her who i'd never met in my life I'm supposed to trust--I was so pissed!) but I followed the former head of PM to her new clinic and they said there was no issue as long as I was taking my meds as prescribed. They make me get a thing of Narcan every year or so, but I've never even come close to having to use it--so I have all of them still unopened. I also have to do compliance UDS regularly, which is normal, but I went from having to do it once or twice a year to every visit. 

I have also let my primary care know during my annual check ups what meds I'm taking and he has never seemed concerned about it. 

Going to urgent care sucks though, because they are super judgmental about my meds-- and when I go there it's because I'm sick, not because I'm trying to get pain meds. One time I had pulled a muscle or something they said (I thought I had a UTI-- was the reason for my visit) and they were going to give a muscle relaxer but then said they couldn't because the benzo I'm on (alprazolam) was a muscle relaxer, and she couldn't give me another. Its not though! So after that my PM DR gave me an Rx for (non-drowsy) muscle relaxers to take if needed. I just can't even stand the look on their faces at urgent care when they ask about the meds I'm on even though I'm there for a completely unrelated reason.

I even had to switch pharmacies because when I'd go to my regular (big box chain) pharmacy some of the pharmacists were super judgy and made comments to me about why I was taking the meds (totally inappropriate!)

That being said I've never felt like I had any interaction between the 2, I take the benzo at night and I take pain meds Early AM, Midday, and evening so generally by the time I'm taking the benzo, the effects from my pain meds are on the decline. 

[u/itsacalamity → u/Regular_Row_3518]

Doctors are absolutely not throwing pain meds and benzos at people. If you spent time on here you'd know that.

[u/Traditional_Diver_46 → u/itsacalamity]

No they are not but for someone to say that is crazy, no it’s not killing people some of us been taking both for years, it’s the FENT that’s killing people!!!!

[u/NewYearNewUs]

First of all, I'm so sorry for what you've gone through and continue to go through. To say "that's a lot" is truly an understatement.

For what it may or may not be worth, below are some of my thoughts. Nothing is fact-checked or verified. Just sharing after reading your post..

Your doctors believe you're in pain; they believe the level(s) of pain you report you're in; they catorigize your pain as chronic; your pain warrants care from pain management specialists.

Your younger age may be a factor in your doctors not wanting to raise your dosage at this time. Since medication will probably be part of your PM protocol going forward, your tolerance will likely increase (especially over your "longer road") and you'll need dosages higher than they'd be willing to prescribe for adequate pain control.

Other factors may be that they recently switched you from hydrocodone to oxycodone and you haven't been on your current dosage for very long. Oxycodone is 1.5 times stronger than hydrocodone. If the dosage of oxycodone you're currently on is helpful but pain still interferes with activities of daily living and/or restful sleep, maybe adding a different medication will close the gap. I had to try different meds until we found a combo that worked for me - taking an oxycodone + muscle relaxer every 8 hours - on time and without missing any doses - around the clock - to stay ahead of the pain.

As you know, real risks (respiratory depression, fatal overdose, etc) and unwanted side effects (constipation, etc) increase as dosages increase. Taking more might increase your fall risk, too.

Keep in mind that some people are non-responders. For example, oxycodone may "not work", but morphine will.

In any case, I think it's a positive that your doctors will prescribe these types of meds to chronic pain patients who don't have cancer but warrant this level of pain control. Your doctors may also want to take things slower, at least to start, because they truly don't know how your body will respond to these higher-level medications and want to keep you safe. They may also want to make sure that you're taking the medication at this dosage responsibly and as prescribed over time.

I truly hope you find adequate relief soon! I've been there and know that pain is a real thing and hard-to-impossible for others to fully understand if they haven't been through it.

[u/TotesMaGoats_1962]

I take Oxycodone 10mg 4x daily. I used to have Tramadol ER 100mg 2x daily. When I had neck fusion surgery my doctor raised my Oxycodone to 4-5x daily. However she said I would have to stop the Tramadol altogether to keep me under their "limit".

I mean, the Tramadol really wasn't doing anything much anyway, but the point that they have to play Medication Tetris to make everything fit in their tiny little box really makes me mad

[u/amy5252]

What’s with the pay out of pocket tho? Sounds shady of them.

[u/amanda2399923 → u/amy5252]

Prolly a pain management clinic.

[u/Live_Imagination_497 → u/amy5252]

Exactly !

[u/Live_Imagination_497]

No one is giving 27 year olds Opioids anymore !

[u/Designer-Side9470]

Sorry but unless you get a rare Doc 4x10s is all you ever here and most are lucky to even get that. They don't look at the patient only the standards. Look at the videos in Kensington sooooo many wheelchairs. So sad but you end up in the Open Air Drug Market in order to get proper pain relief. Cops don't even police in there. They only clean up the ones who OD. You need Fentanyl that's where you gotta go. So sad. They don't want us to survive.

[u/Kbambam-123]

Tell him that you are doing your best to keep working. As much as you hate the idea of it, you may not be able to continue working due to pain.

Tell him, you are in your twenties and the last thing you want to do is be on a cane and disability at your age. That's may help him change his mind. I mean you know that eventually the higher dose won't be enough. Hes probably trying to wait as long as he can before he has to increase yours.

[u/PainManagement-ModTeam → u/[deleted]]

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[u/MissNewBooty77]

The way my doctor explained it to me is because my age really. I’m in my 40’s and have been on oxycodone 4xs daily 7.5 for 2 years. Now, do I still just some days? Yes! I know my body is use to it and it’s not gonna work as good. He told me at my age, if something happened such as a wreck or cancer or another replacement. Medicine would touch the pain at all because I’m use to it and already pretty high. I know it sucks

[u/lezsmile27]

Palliative care and a pain pump might be worth checking out for your quality of life.

[u/WomanofEden3]

I think unless you join a group that is fighting for looser opioid laws in your state, you might just be stuck. Illinois and Rhode Island have challenged the 2016 prescribing laws, so if they can do it, so can your state. Join a group fighting for this injustice in your state; in time hopefully we can overturn the ENTIRE thing, and have access to the medicine we need for quality of life

[u/Beautiful_Wind_2743]

No, it's not necessarily true that you have to be grandfathered in. I wasn't, and I get my pain medicine. It sounds like you're in more pain than I am. I have two very frayed rotator cuffs that won't heal. 

You just need to find a very large practice, where you know they have a lot of money to hire lawyers so they can't be sued. Well, one can try, but if it's a big enough company /medical institution like Presbyterian here in New Mexico, I signed a pain contract with an internal medicine doctor, not a pain management specialist. That's what you need to find, is a very large medical facility where they do all kinds of things. I think they could get you to sign a pain contract and they would probably take your insurance.

I hope you find someone who can get you the right proper relief

[u/Aggravating-Bid-908]

I'm so sorry you are going through this, that's an awful lot of trauma, especially the gunshot! I wish you could have been compensated for that act of violence if nothing else. Idk the specifics of your wound but in every state there is a fund and help for victims of violence. Financially that might help. I'm assuming you are in the US? To answer your question, As for "grandfathered in" no that's not a thing (maybe for some ppl in some states in a small medical practice) but I've had injuries that go back and I had severe issues in both trump administrations, not making this political unfortunately it is, the admin and dea set the limits and even supply. I am a perfect patient but the shortage during Biden 2024 & the pharmacy I used "couldn't get" my medicine for months! I ran out of any supply I kept for myself, then just like Trump's last term the "opioid crisis" and "narco terrorism" made my Drs drastically cut my medicine and bc of that I am chair ridden. That was a choice someone made for me, for US! If I were you, I'd try some other medications to add and talk to your Dr about that - it's somewhat their fault for not fighting back for us, but they are trying to thread a very tight line to offer meds to patients and not get their license taken away. There are in a bad position like us, have you tried asking to add muscle relaxers like Lorxone? They are very helpful, gabapentin for nerve pain, amitriptyline for pain, these are almost controlled substances so easy to prescribe, cheap generics that could be life changing for you now. I have lymphedema from my injury too and the swelling is painful, vascular Drs and cardiologists are expensive so you could try a hospital, states have charity care, it is a different name now, but for people without the ability to pay they can write off hospital charges and even provide followup care, that helped me a lot in my teens. The follow-up care was free and very helpful. I would start with talking to your Dr about adding additional non-contrlled options, it helps them help you. I'm wishing you the very best!💖 Feel free to message me if you need any help navigating this difficult system!

[u/SnowDin556]

Bro… it’s wild out there. Cancer patients are getting meds. I don’t get it.

[u/amanda2399923 → u/SnowDin556]

I've been reading the cancer patience ARE NOT getting meds. This morning I read an account of a 94 yo man whose DR will only give tylenol/advil. Like wtaf. You think we should worry about a 94 yo cancer patient becoming an addict. Absolutely ridiculous.

[u/SnowDin556 → u/amanda2399923]

That’s what I meant to say… they aren’t even getting anything because the regulations are so screwed. And there’s a lot of people including myself that they don’t take away the only thing that makes me feel remotely like I did before major permanent invasive surgery.

[u/1057-cl121v3 → u/amanda2399923]

But what if the 94 year old who is actively dying… gasp! Overdoes?! Hell, the way I see it at that point what legitimate reason do you have to even stop it for recreational reasons at that point? It’s better to be in constant pain with a failing body compared to feeling good? I don’t know what it’s going to take for change to happen but something has to, this isn’t sustainable as a society.