Hello, everyone. The oxycodone I have is not working/dulling the pain from my Rheumatoid Arthritis. I was diagnosed in April this year and so far even with the methotrexate and prednisone, there is still horrible pain. There isn't any regularity to it. It will be 3 months now I have been trying to get the hospital to help me reduce the pain.
I was taking hydrodone 2.5mg/500APAP, then 5 mg tabs, 3 at a time (and four just once), it did absoulutely nothing to lessen the pain, nothing. The pain is excruciating and keeps me up all night. I can't sleep. I had to talk to them at least 9 times just to get the hydrocodone. They then gave me the very same prescription again after explaining thoroughly that it just wasn't working. I refused it and said "you aren't listening".
They act like I shouldn't be hurting or that it can't be that bad. They pretend to 'listen' but don't really explain anything or give a flat out answer to my problem. It goes in one ear and out the other at the hospital.
They told me to go to the emergency room if I hurt that bad (after hours), or tell me there is nothing else they can do. The emergency room then told me to go back to the regular doctor because they don't handle that kind of problem.
The hospital even prescribed Ambien. They told me Ambien would help, even though I read that it isn't for pain relief. I said how can it help me sleep if the pain is so bad (9 or 10 on their pain scale) that I can't sleep? There wasn't any answer, except to 'just try it'.
Why do doctors & nurses let patients suffer so bad?
I asked if a stronger dose of this or another medicine was available, they said there wasn't anything stronger than 5mg of Hydrocodone, so they prescribed 5mg of Oxycodone. That didn't work either. This one I can take 3 ea. and it still doesn't work very well.
They gave me the the same answer after I complained politely that it wasn't working, that they can't give me stronger doses or there isn't anything else. They wanted me to go to an alternative medicine class for pain - you know where you chant or hum, think about other things, as if the pain was merely an inconvenience. That was very insulting to say the least.
(I have been burnt, hit by a car on a bicycle, crashed a motorcycle, broken many bones: shoulder, ribs, ankle, thumbs, etc, I even had my neck cracked when someone jumped on my head, so I think I know a little about pain).
RA pain is worse than anything I have had experienced before.
I don't want sympathy from them, just the pain to lessen or stop. How can I get them to listen or get the knowledge to know what to ask for, in order for this pain to lessen or stop? Should I demand a higher dose of this medicine?
(I don't have insurance, so I have to go to this one hospital in town).
Sorry, if this is rambling, but I feel like the doctors just don't have a clue about the pain, or don't really believe it and therefore will not really do much about it.
HI there Bill!!!
Sorry to hear you are on so much pain. Believe me, we have all been there, are there and will be there.
There are some first things that come along with being new to RA. Number 1 being exactly what you said, it is more pain than you have experienced before. Why, because at the moment, your RA is not under control.
Sometimes it takes a long time for us to get our meds adjusted to meet our disease head on!! Prednisone and Mtx are not the only meds out there for RA but they are first string. That is not to say, you will never be pain free, but you will learn the nuances of pain. You will learn to distinguish between good days and bad. (today was a good day, I got out of bed on the first try)
Number 2. You say you have no insurance and are going through the hospital. I too, use county health care. The question is, are you seeing a rheumatologist or going into ER or seeing a general physician (GP)? I ask these question because, ER docs and GP's are only going to go so far to treat you. They will refer you to a specialist, a Rheumatologist. A rheumie may or may not give you pain meds, as it is their job to "treat the disease not the symptoms." Most rheumies will adjust and switch your meds to get the RA under control which is not determined by your pain but by your bloodwork (in their eyes because they are not the ones in the pain).
To go from there, a rheumie will probably refer you to a pain specialist to prescribe narcotics or whatnot. Or refer you back to your GP along with more documention on the progress of your RA.
Number 3 there is a stronger hydrocodone, a #7.5 vicodine and a #10 vicodine or Lortab. It may be that the hospital insurance does not allow for a higher script to be written (mine does not). However, the oxycodone is a different chemical make up and stronger. so make your choices there. Not all of us take narcotic pain meds for our own reasons or because biomeds like Enbrel control the pain and swelling.
One of the nuances of being able to live with RA is coming to an understanding with your pain. Pain meds do not always make the pain go away and can often times make it worse. (And with strong pain meds and chronic pain, we take the risk of dependence on narcotics which actually causes "hangover" effects that are painful on top of our RA pain).
I know none of this is solace for you right now. But I can assure you eventually you and your RA will learn to live in harmony. And the first step to take is to calm down. Take all of our words for it, the tension, stress and anguish we have because of our pain truly and without a doubt causes more pain. It all snowballs into an uncontrollable mass. When we are calm our pain is calm (lesser not gone.) If you can get some sleep, it helps the body heal also.
Lene Anderson, one of the experts of this website always recommends reading the book The First Year with Rheumatoid Arthritis and checking our the links on this site about the basics of RA and throughout the web to come to an understanding about what exactly is going on with your body and why RA hurts so badly.
I know nothing I said today has made the pain go away. And words are just words when you are hurting so badly. But the light at the end of the tunnel is that your RA will not always be as angry as it is now and neither will you. Do the manly thing and cry if you have to. Many of us women, cry in the shower so our family doesn't see our pain.
Keep us informed and do not be afraid to vent to us. That is what we are here for.
I agree with Ronie, Bill.
And, ER doctors will treat you like it's "not that bad" because it's not their "specialty." When I was first diagnosed years ago the pain brought me to the ER alot and they did absolutely nothing for me because they don't know the disease. They try or attempt to help the symptoms you come in for. Like the pain. But they usually will admit to you at some point that they can't help you further, after they initially give you whatever meds they'll use to try to stop the pain. They offer the muscle relaxants, they offer what they can of a narcotic, they offer benzos, sleep aids. It's not going to fix the underlying problem, and the ER doctors know that.
The Rheumatologist at the hospital you are going to is the best bet for you. I'm sure there might be a few, or atleast I hope there are. Like Ronie said, those are the individuals that will attempt to get the Ra under control. They can order the tests whether blood, xrays, scans, mris, etc that will help them, help you. [I feel like Jerry McGuire right there haha]
I too demanded pain meds. And I got upset when they said that in essence if you keep on taking them, the pain will be worse over time, because as you take narcotics in the longrun the re-bound affect will occur and then you're worse off. So I'm sure the ER doctors don't really want to prescribe much of anything that is needed to take the edge off right now for you, because they are just not skilled in the area.
Many Er doctors and regular GPs will make you think your pain is all in your head. It's only because they don't understand the disease like a Rheumatologist would.
I do agree with trying not to get too angry. I have been there. It only exacerbates my pain. This Ra thrives off stress. The more you can eliminate it, the better you'll feel. I also do go to Chronic Pain seminars. I do alternative medicine along with western medicine. I just run it by my Rheumatologist and vice versa. I know there seems to be no light at the end of the tunnel right now, but I assure you there will be. The suggestions of Pain Management I laughed at too. But when you see the right doctor (Rheumatologist) and they can get you on a combination of meds to control the disease, the symptoms will lessen. That's when the pain management techniques will be useful. Right now, I'm sure they wouldn't because your pain is so high and so stressful. Please hang in there and keep us posted.
Hello Ronie, thanks for the help. I have seen a Rheumatologist twice.
He refered me to the Primary Care (regular doctor) for pain. As you said, he does not and will not prescribe pain medicine. They haven't told me that there is a pain specialist, I will ask about that. They will not prescribe any more Oxycodone, because they say it isn't working.
I don't want to complain, sorry. I still don't understand all this and was surprised when I found out some of the doctor(s) didn't seem to either. One still acts like I am talking nonsense about the pain. I have given up trying find a way to stop the pain, the doctor(s) wear you out, pretending they are going to do something, when they really have no idea?
I'll get through this, if you women can do it, so can I. (Because I can't have you gals being tougher than me!)
Ok, DebbieM123. Thank you for the help. You can feel like Jerry McGuire, as long as you don't sound like him!
I will look into other ways to manage the pain, I have no choice, hahaha!
I have tried to find people with this disease, but so far it seems to be only women, I guess I will have to get in touch with my femine side...Just kidding!
(when I feel really bad pain, I am trying humor now, to make me laugh. Is that strange or what having pain for a really l-o-n-g time does to one?)
For example, I forgot I had RA and knocked hard on a door again at a business. The pain was excruciating, but I still laughed hard! I got some curious looks! Maybe it's due to the lack of sleep, I have been feeling loopy.
Hi Bill, Well their are at least two males that have RA you and me lol. Hope you find you find a answer to relieve your pain.
I was diagnosed by a rheumatologist just last week. However, I have been feeling the pain of RA periodically for the last year, and constantly for the past six months. The rheumatologist prescribed methotrexate, plaquenil, and folic acid. He told me to stop taking the etodolac, which very much helped with the inflammation and allowed me to walk and continue going to work. Since I have stopped taking the etodolac, I have had 3 days where I have felt absolutely miserable, barely able to walk. I won't take the etodolac, as my doctor wanted, but goodness, what can I do about this incredible pain? I cannot believe the pain I have been in. He said that I have mild RA. Wow! I can see swelling in my hands and feet; I have rheumatoid nodules on my fingers and my left foot. If this is mild, I don't even want to know about moderate, let alone severe.
Is it okay to take acetaminophen and ibuprophren with the RA meds I've been prescribed?
I am 49 years old and have started a great new job that I would like to keep. But the pain is, at times, unbearable. Will it ever get better?
Shae, it is ok to take acetaminopin and ibuprophren as one is a tylenol pain reliever and the other is an anti-inflammatory (motrin). However the amount you take is the key. too much tylenol in a day will actually give you a headache. (also max dose is 4000mg without effecting your liver) Too much motrin causes stomach upset. And the big HOWEVER. Etodolac and Motrin are in the same class of anti-inflammatories. So is aleve (naproxen sodium). I personally like Aleve better than the others but it messes with my ulcer caused but all the other meds I take. So I take my aleve twice a day. (RX strength is 500mg 2x a day. I just take the over the counter stuff.) Along with my nexium it is fine and dandy for me. Don't know how it will work for you.
Who rx'd you the etodolac that your rheumie just took you off of it. Did he give you a reason. It could be that he needs true bloodwork on your inflammation. Who knows.
Yes it will get better, it could be that your body has become accustomed to the etodolac and you need to "come off it for a bit" in order to see how or if other meds work. I know this sounds like crap, but I try to keep my pain as a background noise. I am dx'd with several diseases so it is not only my RA pain at times. Most of the time, I concentrate on other aspects of my life in order to keep my pain at a low roar. Sometimes the more attention you give it, the loader it roars. Right now mine is humming like the CPU sitting beside the desk, just a steady low hum in the background.
I hope the new job can help you to keep you mind off things.
Thank you so much, Ronie, for responding. It is nice to feel as if I am not alone in this. I am glad to know that it is okay to take the acetaminophen and ibuprofen. I'm trying to only take them once a day.
I know the doc said that it would take the methotrexate about a month to start working. That just seems so long when you are in pain!
I am still trying to wrap my head around the fact that my body will no longer do what I want it to do - that I cannot just get up and move with ease the way I did for the previous 49 years.
I will remember what you said about not focusing on the pain. There were a few days where the pain was so bad, I couldn't help but focus on it. But today was a good day - with the acetaminophen and ibuprofen - and I was able to make it through the work day and ignore the dull pain.
Thank you again, for you kind, and informative, words.
oh boy Shae!! You said a mouthful when you mentioned wrapping your head around your functionality. I still can't do that at times. I have always been so active. I was dx'd as a teenager and pushed through without a problem until 09; when I hit a brick wall and could no longer keep my symptoms and pain under control. But the good news is that with the proper medication (which will take a while to find the right cocktail that works for you) your body WILL do what you ask it to do. Perhaps a little slower or in a different manner than which you are accustomed but it will do it!! It will be frustrating, Lord will it be frustrating!!! And you will cry, piss and moan about it. But it all makes you appreciate your daily accomplishments all the more.
Well you are headed for change and modification!!! It will be an arduous, never-ending journey. But it is a journey that will help you to appreciate the small things in life you may have overlooked before; like the ability to simply walk through Home Depot without getting stuck in the back isles. (true story, hahaha).
If you need anything, you know where we are. For that matter if you want to share an accomplishment, we are here for that too.
Hope you job helps with your journey.
Hello Bill! So sorry your pain is so bad at this time. Like the others have said it will get better with the right treatment. Sometimes I think that when people do not see a physical sign such as a cast, blood or bone, not trying to be graphic haha, they are not able to relate to the fact we have pain. It is not visible unless there is swelling etc. I try to approach my feelings to others with this in mind. At one time I did think I should have my own seat with my name on it in the emergency room :).
A Rhuematologist is the best for getting the disease under control and I am seeing a difference in my pain as I was just diagnosed a couple months ago. I am on Methotrexate and just titered off of prednisone. I also take planquenil for the RA. Narcotics never touched my pain at all! The only thing they gave me was a headache. I also have fibromyalgia and have had to learn techniques that help with each type of pain. A warm bath helps a lot. Listening to soothing music while resting and think of being on the beach or where favorite place is. Kind of like a mini vacation to get your mind off of the pain.
There is very good information on here for Beginners with RA that gives tips for self-advocacy and many other great topics. Please feel free to vent on here anytime. Please do keep us posted as we care how you are doing.
Just buy pain meds online and anything else that helps online. Don't go back to the doctor! They won't and can't help you. They can't by law! Narcotic pain meds aren't addictive. It's all lies spread by pharmaceutical companies and hospitals. Ask any pain med junky how long it took at rehab to get them off narcotic pain meds. 3 to 5 days tops! Think about it. They can't cure you! This isn't a disease! It's a poisoning! Probably fluoride or aluminum dust. All they do is watch you suffer while they take your money. Or tax payers money for that matter. Most of them are rich kids playing around, and trying to make themselves feel better for being the rich kid! They don't understand what causes the poisoning. They never will because it's not a disease and they aren't scientist. None of them are capable of seeing past their training. What little there actually was of that! Learn to follow your own progress. Do your own research right here on the net. Find out what other people are saying worked for them. Start there!
Everything they do is after the fact! They aren't going to help you like you can help yourself in this situation. They are just going to make things worse. The "good" doctors are just doing what they've heard about on the internet. First a pharmacy company pays for a hospital to use their medication. Then the doctors are paid to put out fake reports that it's working. Then you go to the doctor in your town and he gives you what they tell him he can, which was ultimately decided on by our government. Now do you really think Washington isn't filled with a bunch of crooks? Think again! I'm not saying they (doctors) are all stupid, I'm just saying they aren't allowed to think! Who invents the cures, doctors or scientist? Who does the scientist work for? Think about that!
Find out what meds that are available for RA. Order as much as you can afford without a prescription online. Latvia or Thailand would be my advice for a country to order from. You might want to do some more up to date research on that. Use a prepaid credit card. It will come straight to your house no problem. If there is a problem, they will resend your medication. The government doesn't care either. They can't because it might hurt their trade relationship with these countries.
Remember, the bottom line is they can't cure you. Get what you want from the local hospital as far as diagnostics are concerned and get away from those rich evil crooks! They may not believe they are being evil crooks but they are. The ones who don't get it are just to stupid to see the light. Some of them might wake up a little when Obamacare gets turned down by almost every state! I doubt it though.
You are fighting more than you think here. Corruption from the ground up! If there were any good doctors out there, they would tell you this.
Notice how they all like to start with, "well this isn't a curable disease"!
POISONED BY WHO?
I was just diagnoised With RA. I am 22 years old I first complained and was sent to a rheumatologist at 10. He said I was faking and now 22 years later after a hospital visit it was proven with the new anti-ccp (cyclic citrullinated peptid) test that I did in fact have RA and the doctor I saw said it was the worst he had ever seen. So needless to say i'm in pretty bad shape its been 12 years gone un-diagnoised and to make it worse the doctor said I needed to do sit-ups that my pain was caused by a weak back. I won second and third in my ROTC program for doing the most sit-ups to cadance in all the other ROTC groups in the southeast (men and woman) and I ran cross country easly running 4-7 miles a day plus weights. My body is destroyed. Totally. They wont give me anything stronger than tremadol. I want to die. I understand pain pills are addicting but they were created for a reason.... some people need them. Good luck keep fighting I know i will. RA is a serious condition and i'll be damed it I can never run another marathon if someone is going to let me suffer. You will get the medication you need ( probably Oxycodin 30's-80's mg a day) but its going to take awhile and you'll have to show the doctor you can be mature with it.
I have severe R.A. and am currently being treated with methotrexate, prednisone and arava.
I have a fairly high pain threshold, yet have experienced involuntary muscle spasm in limbs from high levels of pain created by joint inflamation. On occassions the inflammation has become so intense that the swelling was like a half orange on the back of my hand and was severly restricting circulation through my hand.
Some GP's appear to believe the pain from R.A. is no more than an inconvenience or causing mild discomfort. These practitioners then prescribe medication for the pain level they expect will be encountered by the patient.
I believe the reluctance of GP's to prescribe high level pain relief for R.A., results from -
1. Lack of understanding of the varying levels of pain experience by persons with the condition
2. The potential for abuse of the high level pain relief drugs, this conditon sometimes requires
3. The potential for legal action resulting from prescribing these drugs of addiction.
I get R.A. outbreaks in the hands, hips and knees mainly. sometimes an attack can last for a week or as little as a day. There is no pattern to which joints are affected.
I find that if I commence to take Panadol Osteo when slight pain develops, then I wait till pain builds to a 7/10 or more. I then take a 5mg Endone and a 10 or 15mg Oxycontin. This usually reduces the pain to a discomfort level where I can sleep.
I usually only need the medication for a day or two and when the joint swelling starts to subside I stop the high level pain relief.
I never take a quantity of pain relief so the pain is completely gone. This ensures I am using the minimum dose needed. This helps me keep the dreaded hounds of addiction at bay for me, as using the medication has never become associated with pleasure or total lack of pain.
I have been using Oxycodone for 15 months now and monitor my usage with my GP. who seems happy that I am using it responsibly. I actually requested lower dosage prescriptions when my pain levels stabilised mid last year.
All the best