Information & encouragement to fight RA
I’m lucky, my PCP will prescribe limited quantities of pain meds, and though we’re trying to scale it back, she has assured me that I won’t be without pain meds when I need them. I’m grateful to her, b/c my rheumy won’t prescribe opioids at all. I like my rheumy & she takes wonderful care of me otherwise, and my PCP takes care of my pain needs, so I don’t fight it. I’m afraid the day will come when these restrictive opioid “guideliness” become law, & my doctor’s hands will be tied. I don’t think the guidelines are doing any good anyway. Opioid addiction and overdose rates are astronomical, despite these guidelines developed to “fight the war on addiction.” The way I see it, if people want to misuse the drug, they’re gonna find a way to get it, and if they can’t get prescription opioids, they turn to heroin. We need common sense guidelines that don’t punish the people who really need these drugs, and we need doctors making these decisions, not legislators. The only thing that’s been accomplished with the guidelines is punishing those who need them, and making them feel like junkies, b/c that’s how they’ve been treated. Like I said, I’m lucky to have a physician who prescribes them for me when I need them. They are many, many more chronic pain patients who aren’t so lucky. What happened to “first do no harm”, and “pain is what the patient says it is?” I’ve worked as a RN, and I can tell you that the vast majority of patients who have a legitimate need for pain meds, and are prescribed those meds DO NOT become addicted. The statistics are there to back it up. Pain is grossly undertreated in our healthcare system. I’m all for balancing controlling patients pain with the risk of addiction, and I’m all for using nonopiod measures to control pain as much as possible. But the sad truth is, it doesn’t always work. If we were cancer patients, we’d get all the pain meds we needed & then some. Instead, we’re forced to suffer with a LIFETIME of pain with no relief in sight. It’s criminal.
And I’ll leave you with one last thing. There’s a BIG difference between tolerance/physical dependence and addiction. You can build up a tolerance & be physically dependent and NOT be addicted. It’s not ideal, but it it’s a whole other beast than addiction. Addiction is using the meds inappropriately, taking more than prescribed, attaining it without a prescription, doctor shopping to get more than needed. I think it’s safe to say that the vast majorly of us don’t abuse opioids. We take them because we have legitimate pain that needs to be treated, and should be treated. Anything less is inhumane.
My specialist won’t prescribe any narcotics and prednisone is out of the question.
Grateful that I have a wonderful primary Dr….she knows my history and will prescribe anything I ask for…she has seen me at my worst
Focus needs to shift towards use versus misuse. It’d easy to form an opinion if you don’t have chronic daily debilitating pain. It’s easy to listen to the news and jump on the bandwagon of public opinion when the issue is not yours. RA patients deserve help with pain just like any other person suffering with a disease.
SPLENDID in depth information with amazing links for additional information. Unbiased. Well written. THANK YOU KELLY for this amazing share.
I have to go to my Doctor every 30 days to get my norco.
I have to call at least 3 days before I can get it.
My Doctors office is 30 miles away.
Most of the time I just make it through the month before I need a refill.
No one knows what the pain feels like.
Sleep one day,up all day and night,because of the pain.
This is a nightly thought. That is b/c if I have had any more excitement than walking to the couch my knee is too painful. My hands have difficulty pulling the sheets up. AND! It is winter here so a blanket is also on the bed.
Page 3 of the first prouncement from the CDC says “if you still have a “fx” or words to that effect pain rx will be given. My dr’s have never found any combination to stop the progression of my PSa or RA. One finger was even amputated as the progression was so severe it was flopping. My thumb is on that way now so…I have many joints like that…bone ends looking at each other no longer bound by a joint space or what the lord intended. I have hardware in my thumb…there are 2 plates, 4 screws and wire to attach the bones together…it failed the first yr. and now the entire phalanx is crumbling and that hardware is detached, completely. The disease has erroded the bone to that extent.
I have used Percocet for the last 10 yrs. i used the daytime dose to do things like houseork, dishes, make beds and do grocery. Yes, it still hurt then but the rx held it at bay. Then just before bedI would ice my knees, hands and low back.
With the new rules I feel like a criminal going monthly for my Percocet. Only one Percocet now days. I am so “undermedicated” I can cry with frustration at the CDC. I know my level cannot be the only one this bad. I feel we all need to help the CDC make corrections to their edict.
There are times I hear family or friends howling b/c the pain from their broken finger, toe, surgeries for repair of fx. Well, when it begins to heal and knit the bones together I hear their need is gone but they will tell me how bad the pain was. Do I have any idea how badly it hurt??
Well, try 17 fx, Similar bone disturbances as my family, friends. I have had the two diseases since I was 16. I am 67.
I sure am tired of all this. I type with 2 fingers so if I have made mistakes please forgive me.
I have written the CDC, and asked how many Rheumatologists they have in the group that set these restrictions. I would love to show them my x-rays as I believe that a picture is needed to understand what the end of a life with PSa and RA looks like. These bone ends will never heal. 22 surgeriies has not stopped the synovitis. I have been on every type of rx. I am starting Remicade again as there is a hope for my new rheumy that it will give some relief. It did not help before and none of the other 8 biologics have worked either EXCEPT. I must say Enbrel was the first I tried and almost like a miracle my pain stopped. It worked for about 7-9 months and stopped. A second trial a year later did nothing.
And, I do go to my gym 2 days a week to take a weight lifting class. They help with my stumbling and collection of weights and putting away my equiptment. The social contact is invaluable. My had weights are 2 lbs. it used to be a bar with 40 lbs but that is gone now that my thumbs are so bad.
Ok, rant finished, sorry.
I agree with all of you suffering from RA and other chronic disease. I’ve had RA for over 20 years-I was 26 when diagnosed. I have been strong but of course the progression does not stop, my dr retired after treating me for 20 years and my new one will not rx pain med, instead sent me to a pain clinic where I was treated like a druggie. Doctors and pharmacists all make me feel embarrassed for needing pain med. Like you I only take 1 during the day (way below my dosage) so I’m able to function (I have to work full time) without being so miserable, the pain is still present. I don’t take the pills for kicks and giggles. Where is our right to proper care, to not have to suffer unnecessarily? Why do we only care about people that abuse prescriptions? We have as much right to proper care as the drug abusers have to theirs.
As a pharmacy technician of 35+ years, I have seen the ebb and flow of narcotic availability.
Prior to the controlling pain movement,when you received any controlled pain medication in hospital or at the pharmacy, you would also received an prescription for hydroxyzine pamoate,this particular medication prolongs the pain relief of the narcotic.
When health care changed to give the patient what they want for pain vs give patients a choice in their care, we saw a drop in the amount of prescription’s written for Hydr.pamoate. and an increase in the am of narcotics.
As a newly diagnosed RA patient who is unable to take narcotics and most ant-imflammatories,I am interested in what I could take for pain. Thanks for this article. I will follow the comments.
It’s getting so hard for me to get my scripts filled. My doctor is under fierce scrutiny. I understand the epidemic but provisions need to be made for the person in chronic pain. I don’t know what the answer is but it’s not keeping legitimate users from their prescriptions.
I went to my Rhuemy yesterday.
I asked him if he would up my norco from five a day to six.
He went off like a nut.
He said do you want me to lose my job,I cannot do it.
You are on the highest dose, 10mg.
Now he wants me to start taking some kind of shots that have many side effects.
What do I do? Sit around in pain all day or take something that could and will end up killing me?
I agree 100%.
What do we do.
Six years of nothing but pain.
I’m being forcibly weaned from my pain medication even though my RA is not in remission. Not right.
Omg Noelle I’m so sorry.
In February, I had to take a trip out of state for work. I’ve been on opiate pain management for approximately a year, while also trying to get my RA managed through my Rheumy. My pain management is handled through a pain management clinic, and I have gone to the same one the entire time. It took 6-9 months to get a regime that works well, but by the time I was going on my trip I had been on the same regime for 3+ months. In fact, my doctor and I had been discussing decreasing my dose because I had been feeling so well. During this time I haven’t had any issues with early fills, etc. I also take adderol, another schedule 2 medication. I have four children, and am the primary income in our house, holding down a high stress/demand job in the IT field. While on the afore mentioned trip with a peer and my bosses our rental was broken into and all of our laptop bags were stolen. Having ADHD I have developed several ways of coping with my memory issues, one of which, for all the meds I have to remember to take, is to always carry them all on me. In this case it meant that the meds I had filled just prior to the trip including my adderol and painkillers were all stolen, along with 8-10 other less “fun” medications. All four of us took pictures of the rental with the windows broken out, and filed police reports. The next day I rescheduled my return and called all of my doctors. My PCP wrote new scripts for everything, except the pain meds as with my pain contract I’m not allowed to get the meds from anywhere except my pain management dr. I called them and offered them pictures, police reports, and witnesses in the form of my director, our cto, and the other manager I was at the conference with. They stated they “appreciated” all of my evidence, but would not be refilling my meds. Instead they prescribed a patch to help with the withdrawal. By the following Monday the withdrawal was pretty manageable, but the pain was debilitating. One thing I nevet thought about until then was that when the disease onset the pain built up over time, so what you consider a 5 or a 7 changes as you get used to managing it. After months with my pain being managed well, going without my meds felt like I played chicken with a semi and lost. So I scheduled a followup with my pain management dr because I decided that their response was unacceptable. Even if they legally could not refill the meds (which is no the case), they are still my pain management dr, and it is their responsibility to treat my pain. So I went in to find out what my options were for the next month. I also brought in my police reports, etc. The doctor said that we would resume my normal regime in a month, but she would not refill my meds. What she did decide to do as the alternative, was provide a norco script for approximately half my normal opiod dose with 2 pills a day (8-10 hours of coverage). The following month was hell, as not only was I in pain, but I was left with facing the daily choice of deciding when I would be most functional. Do I take my meds for work so I can perform my job without the fog of pain, or do I see my kids and not be a lump, or choose both of the above and forgo sleep. By the end of the month I felt more like an addict than I ever had previously, and honestly think it may have bedn better for her to give me nothing. I also asked her for steroids to help, which she provided. At the end on the month, on my next visit I was right back on my meds. And got to enjoy the side effects I hadn’t suffered before due to the slow increases in strength prior. Overall, in my opinion, living with RA is hard enough, and already feels victimizing. Having been violated by theives, the system victimized me further, by refusing to fill my pain meds, and forcing me to pay out of pocket for the others. This also led me to the closest I’ve ever been to trying to find the stuff illegally. At every turn this experience seemed more dangerous to my long term health than helpful, and I believe the DEA needs to get out of my dr patient relationship.
Ian, thank you so much for taking time to type out your story here. It means so much to future readers, both patients and doctors (or nurses).
Thanks for reading it. The one thing I forgot to write that I learned from this experience. During my follow-up after my meds were stolen the dr told me that I should only ever take the meds I need when I travel (as in X days doses). While good advice, the reason for doing so is just as ludicrous as what I went through. Only taking the meds you need (+ an extra day or two) means that if they get lost or stolen that you will still have some left to ration out across the rest of the month. No one told me this before I took my trip, so hopefully this will save someone else the mess I went through.