Why does the medication I need to be stable have so many restrictions? Yes, I know, people who have abused it have died. People have also survived with it. Literally thrived. No side effects except being able to live my life and possibly enjoy it. Waiting again to see if it’s even in stock or if I have to start calling pharmacies searching for it. Just another day of feeling “less than”.
Why do I have to keep proving I’m in pain - My MSAA Community
Why do I have to keep proving I’m in pain
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Wtfisup
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54 Replies
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What medication are you referring to?
I dread writing the name of it because of all the controversy around it. It is the least expensive medication on my formulary that achieves the best results. It is…oxycodone.
There is a lot of controversy and stigma around opioids in general, but the most notorious one is oxycontin. Perdue Pharma, two TV series, etc.
I'm sorry you're not feeling well, and be stressed about getting your medicine. Maybe the nurse at your doctor's can advocate on your behalf; stressing the importance. Wouldn't hurt to let them try. Pray everything works out for you! Peace and Blessings. NeeC
Funny you say that. My Mom is a R.N. and she is diligently trying to help talking to pharmacies and attempting to get through at doc office. Thank you for the prayers!
Always - pray you and mom break through these barriers with a favorable outcome. Keep us updated. Blessings and Peace NeeC
We providers get frustrated too. I work oncology and we prescribe pain medication frequently. The supply chain issues still haven't returned to normal. We have to call around to different pharmacies to see who has it in stock. There are problems with supply of nonopioid meds too.Sometimes the mom/pop pharmacies are the ones with better supply rather than the chain pharmacies. You might want to look for a good independent pharmacy in your area and ask if they are able to keep your medication in stock. There are also adjunct medications that can be added to opiods that make them work better so you don't have to take as much. I know the bigger doses have more side effects (other than death from suppressing the breathing response in the brain) like constipation and drowsiness than impact quality of life. If you haven't seen a pain specialist I recommend you do so.
Good luck!
Thank you for your reply. Nice to hear from provider. Another issue I’m experiencing is the 30 day rule. Several times I’ve found correct dosage in stock however, they will not hold it until my fill day and then it’s gone. My pain management provider, who I’ve seen every month for years, prescribes my medication, physical therapy, etc.. Pharmacy receives order but can not fill until 30th day. I start checking with pharmacy days before I run out and hope it’s in stock on the day it’s supposed to be filled. As you know, they come in many strengths and that can be challenging locating correct milligrams or combinations. I also take Lyrica and it appears to help me get some sleep. I’ve had a sleep study done, normal. My goal is always to take least amount possible. Hope today is a good day for you and yours! 🫧
That's so terrible. I can't imagine the stress of not knowing if I could get my pain meds on time. As it is, I'm developing a tolerance and my pain doctor doesn't want to increase my dose for safety reasons. I go every two weeks and can't seem to get caught up with all the nerve blocks, etc., that I need for various parts of my body. I was just on the phone yesterday pleading for an appointment to try to get nerve blocks, which would then take place weeks in the future. This is partly because we've been busy trying to figure out if some of my problems are from MS or other things. Ugh.
Having the MD’s call the pharmacy to check stock is a good thing, if they will. I’ve worked in pharmacy over 30 years. In my experience, anyone calling a pharmacy to check “if it’s in stock” is a no go. There are too many thieves. You never have stock of a controlled drug over the phone. You should, if able, go inside. Another way is utilizing one pharmacy that knows you. As stated above an independent pharmacy is best if you have access to one.
Appreciate you replying. In my state, providers do/will not check stock. Patients with prescription can ask pharmacy ahead however, I have called right up to date before and it’s been in stock, next day it’s gone. Then I’m responsible for calling around to pharmacies (some will not disclose if they even have it) to find it, call my doctors office and then wait and hope it’s in stock. I use same pharmacy, same scripts every month. They order ahead but can’t be sure or can’t hold them for me.
Problem is freaking 30 day rule! If they had it a few days ahead of 30days they could fill them and patients could pick it up on day 30. We could literally show receipts it! Pharmacy, provider and patient would all have an easier time.
Deep breath. Thanks. I feel better. 🫧
It really sucks that people and Doctors have caused this. It sucks too that the government has made it a pain in the ass if you’re prescribed pain medication. You have too sign a contract and strictly adhere to it or you’ve got a problem;. After 6 months of trying to stop my pain and trying alternatives nothing was working. I then asked for hydrocodon and said I was concerned about the addiction part. My neurologist said “ Mark, there’s a difference between addiction and dependency “ I then realized that quality of life was more important than a perception. It can still sometimes be a pain in the rear but without it I’d have no quality of life! Remember you’re the one with the disease so blank what people think and take what works unashamed!
THANK YOU! You just made me smile and I can not begin to express how much it means to me that you understand. Sorry we are in the same situation but it does help to commiserate sometimes. Dealing with provider, prescription, pharmacy (or pharmacies), insurance and transportation to pharmacy is too overwhelming at times. Life is not fair, but we can be. Peace be with you! 🫧
Also, have to mention it is very hard to “blank” what people think. I previously drank alcohol and now I can’t. When I say “no thank you” people have no problem asking me “Why?”. None of your business is harsh. It is also disconcerting that if they know I take it, they want some. Nope. I keep it locked up and naloxone in my purse and with my meds. I’m a responsible drug dependent lady. 😎🫧
Oh I understand. People find out your taking pain medication and you suddenly have friends that you never had before. This is where the government actually helps. I just tell them I signed a contract and if I share sell or swap I will be black listed. Seems to work because I don’t have that happen a lot anymore. Bottom line is I have a legitimate reason for taking this medication so until they find a cure I have to make the most of every day and not allow the ignorant get in the way!
I cant drink anymore either Wtfisup and it has nothing to do with the meds lm on🤷♀️ MS took it.. it was like bam! So just tell ppl that you cant drink because of MS🙂🤗💕🌠
Oxycodone can be very addictive. So Drs don't want to be responsible for the side effects that may incur from taking the drug. Because of their liability insurance they have to go through hoops to even prescribe it because if your health should go bad because of the drug they will be covered. If they don't they could lose their practice & license. So bottom line its MONEY.
Thank God my pain provider is willing to go through those hoops! Would not want his job and appreciate how he works with me to take the least amount to manage activities of daily living. We have a great relationship that includes trust, both ways. Of course, that only goes so far so mandatory random testing is done several times a year. On a side note, it is very challenging to try and “hold it” until I get to appointment but it’s a needed hoop to go through. Lately the problem is supply chain. 🫧
Plus people forget. You have an incurable disease. Unless they find a cure addiction is like the least of my problems. Quality of life is first and last I checked there is no cure so I will unapologetically take my medication and live my life, making the most of every day
Hi Mark1499 🙂.I agree with you- that quality of life comes 1st & people just don't get it (that don't have MS). Our pain is often unseen, just like MS.
🙏❤Lisa 💕
good morning
I also take hydrpmorphone every day for my side pain.
I recently told my doctor I couldn’t take a extra pill for bad pain days and he upped my quantity
I’ve been on it for years due to a lesion pressing on my spine and probably trapping a nerve somewhere
I refuse a operation on my spinal cord so I live like this.
My doctor has come to understand my problem
I’m wondering about your side pain? Is that around your torso? Just curious because I have pain in that area that seems to be getting worse.
Hi
My pain is on my left side right around my bra line.
Sometimes I feel the pain coming from my back where this lesion is lying against something
It never leaves
I don’t go to pain management because no one can touch this area.
I also get the ms hug sometimes but this side pain never leaves
It woke me up today so I took a pill already
I try to not take any but the pain is sometimes too much
I also take diazepam for leg spasms
It seems between 4-6 pm I have pain and spasms attack so I take a pill at three o’clock to try to beat it out.
Some days it works and some days it doesn’t
I wouldn’t wish this constant pain on anyone
I have other conditions too
Thank god for my pills
I am addicted to pain relief
Good morning to you! Sounds like we were both fortunate to find proper providers. I had several series of steroid injections to thoracic spine, cervical nerve block, physical therapy, etcetera. I did not choose to have implant placed on spine. Research showed poor results. I am always open to new ideas and currently still trying to see if virtual reality therapy (cognitive, speech, mental and physical) will be an option. Hope your day unfolds beautifully! 🫧
Good morning
I have also refused any kind of back operation or placement of a pain device
Try lidocaine patches at bedtime
They work very very well for me.
I’ve had four nerve blocks- nothing worked for me.
I wish you a better day and lots of luck.
pain relief is my goal not selling pills on the corner as most doctors think
Does your doctor require proof? Maybe another doctor wouldn't. Maybe he or she can get it or find an alternative med that would work. There are "Pain" doctors.
Thank you for replying. I have tried many alternative medications. Optimal choice would be little or no meds. Looking into other things. Hope you have a good day!
Has any body been prescribed medical Marijuana? I have not as of yet but I will be needing something in the near future for essentially neuropathy in my arms and legs that is painful as hell. I have been on gababentin for 6 years and it has helped but my arms is new.Don't know if I have had an exacerbation or not.
I am sorry to take this long to get to my point but any topical pain killer needs to have at 4% lidocaine or it won't help.
I am fortunate to have a pain management doctor who knows me well. I do use medical marijuana with great success. It allows me to sleep at nite. It is available to use in about every possible, not just smoking. I use a vape pen usually. If I know I’m going to be in car very long I use gummies or tincture. It makes living my life possible.
hi!
Prescription Lideocaine 5 percent is what I use.
I have t tried over the counter
I also have diabetes and you tend to get approved for it with no problem
I also have heart failure due to a heart attack at 45 years old.
My Nuero also prescribed marijuana which is expensive but some work and some doesn’t
One day at a time is what I’m told
Good day to everyone!
You’ve really been through a lot. Have you tried the lotions or balms with THC infused? You wrote you had some relief with lidocaine patch and aspercreme. They have it with menthol too. It didn’t work for me but others have found relief with it. 🫧
It really sucks when bad people screw things up for good people because that’s what is your balls down to. The way I look at it is, do you want quality of life or do you want to suffer because of someone else has caused it perception that impacts your ability to live a better life
Agree that bad people suck. Apathetic people, dismissive people too. Worse, in my opinion, are humans with positions of limited power, that can use that power arbitrarily with no negative impact caused to them however their choice greatly effects my life negatively, in a myriad of ways, without reason or justification. In my case, pharmacists and medical office staff.
Monday this started. Now it’s the weekend. They have been batting my prescription back and forth all week and I still don’t have it corrected.
Ordered my 4 meds Friday morning to pick up Monday (because that’s day 30 🙄) and all 4 had fills available.
Monday-3 ready. Milligram dosage on 4th drug is not in stock. Didn’t find out till I called pharmacy. I had to call doctor to have them order it in the only mg available.
They called and it was filled except pharmacy didn’t change amount of pills so it is a third less than I take in a month.
Called doctor back.
Doctor sent in order for enough to make it a full month when added to first fill.
Now, insurance won’t cover additional amount, that should’ve been part of original and I can’t pick it up because it’s too soon to fill. When allowed to fill it eventually, I’m told it will be full price until I can file a reimbursement claim with insurance to settle. Eventually it will. Eventually it will all get filled.
It impacts my fill date which impacts my appointment date which impacts scheduling transportation which impacts…..
But it’s a big freaking mess that is due to humans not paying closer attention to other humans. I end up hearing “I’m so sorry. This shouldn’t have happened, I didn’t understand, I feel so bad. You must be so frustrated and upset, I sure would be.”.
By far, the worst comment is “Well, do you really need to take this much anyway? You should try taking less.”. Wtf?
Lord what a nightmare! Healthcare in the US has become so money driven that we’ve become numbers. I miss the days when Doctors sincerely cared about their patients
Update: Last prescription called in (to bring it to correct amount) was mistakenly ordered for more than I take. I’m beginning to think people can’t do simple addition. Unable to start calling doctors office to attempt fixing it now because it’s a holiday. Ugh 🤦🏻♀️
I actually had my pain medicine to be filled on Sunday which is when the pharmacy is closed. My neurologist usually tells them to allow me to pick it up on Saturday. I’ve already figured out that if you don’t jump on things asap you can wind up suffering. I called the drug store this morning and asked the DA tech if they had it in the notes so i can get it tomorrow. He said no I couldn’t get it until Monday. I called my neurologist and nurse said I e-script it on the 2nd with instructions to allow you to get it on Saturday! I called the pharmacy back and had to talk to the pharmacist! It was the tech. He just didn’t care. That’s the new norm!
Congrats on getting it done! I’m finding this “new norm” challenging. I check right up to the day before to make sure it’s in stock however, they are not allowed to hold back meds for anyone. Frequently, they don’t have enough or correct dosage. Then it’s a partial fill and a new order is required for remainder. Then Medicare doesn’t cover it because it was already filled that month. Then you can file for reimbursement, you will never get it. I’m supposed to pick up the remainder of my fill Saturday. It’s Friday and in stock. 🤞🍀
Hope next month goes better for both of us. 🫧
Hi Wtfisup 🙂( so appropriately named)!!!It really sucks when "norms" don't get it (MS).
I'm also quite aware of pharmacy rules & regulations concerning narcotics. Having been on them in the past- I got in a little trouble " pharmacy shopping ".
Good luck - but don't "forfeit " anything that's owed to you.
🙏❤Lisa 💕
Thank you for your understanding reply. Sadly, you’ll probably get this too. I’m “forfeiting” the greatest place on Earth. It appears I’m now losing out on my only grandchild’s 1st trip to Disneyland. Fill date falls on that weekend. They used to allow a vacation fill once a year. It could be filled a week early and you kept same fill date following month. Not anymore.
What is the exact entity that now controls our lives?
First, it was multiple sclerosis pain.
Second, physicians prescribing medication that
Third, insurance covering it.
Fourth, pharmacy board regulations.
Fifth, discretion of pharmacist whether to fill.
Sixth, will it be in stock, at my correct dosage and the amount prescribed?
Seventh, transportation to pick it up.
Eight. is an entity they all mentioned so I contacted them. The DEA has several recommendations. No one filling my legal prescription is going to get in trouble. Actually, it’s a misdemeanor if they don’t.
The knee-jerk reaction to the “Opiod Crisis” failed miserably. It damaged a lot of already damaged people and continues to.
I don’t know who to go to anymore about it and it truly is a battle I’m weary from. 🫧✌️🌎
The knee jerk thing summed it up in a nutshell unfortunately deserving people suffer worse and suffer first!
Suffering again. Meds aren’t available at pharmacy at exact dose ordered and it’s Sunday! FML!
What sucks is it doesn’t have to be this way. The current administration has destroyed economic norms! I don’t think they care!
It’s more than obvious they don’t care and it doesn’t have to be this way. My problem is, what do I go with that?
Yes I agree that it is an uphill battle. I'm currently on nothing but alcohol for excruciating back pain. I already had 2 surgies-both failed. I'm getting a pain pump, hopefully by March. 🤞🙏❤Lisa 💕
Yes I agree that it is an uphill battle. I'm currently on nothing but alcohol for excruciating back pain. I already had 2 surgies-both failed. I'm getting a pain pump, hopefully by March. 🤞🙏❤Lisa 💕
Oh my, you are challenged by life like me! Cant stand turning to alcohol but I have been there friend. Today is a rough mental survival day for me. I care about you. Peace be with you my friend!
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