I stumbled across this forum when I was looking for information, and I
thought it might be helpful to ask for your experiences on the subject of
long term opioid treatment to manage pain. I was diagnosed with RA
when I was 10 (now 22) and, after living over half my life with chronic
pain, I've reached a point where I'm so fed up with it that almost any level
of pain is unnacceptable. I'm on enbrel now, which actually does work
wonders, but it doesn't fix everything. So now I'm looking around for
pain management options before I go see my rheumatologist again so
that I can decide which one I'm going to try. Basically, I want to jump
right up into the big leagues because I really don't have time to waste
looking for the minimally sufficient pain relief. However, I am aware that
doctors are somewhat reserved about prescribing narocotic quality pain
relief to patients, even sometimes in cases where they are completely
appropriate. So how do I convince my rheumatologist to go along with
this plan? Would it be more productive to just skip right to some sort of
pain management specialist? Any thoughts or experience with opioid (or
any other) pain management would be appreciated.
Thanks
~fuzzyi take tramadol which is an opioid and it has been the best pain med i found. it doesnt cause the light headed feeling that some others do.
Talk to your RD about pain management. I think there are some things you need to know before you start requesting drugs in the "big league"
You need to know how pain works, why are you having pain if Enbrel is working? Damage? What pain meds have you been on? Don't expect to be pain free, expectations are too high if you plan on being pain free. Why are you on Enbrel? It treats several diseases and you haven't listed why you're taking it.
I've been on Tramadol and Ultram, same drug but one is 24 hr. and isn't an opioid and did a pretty decent job of pain control until just recently. I'm waiting for bilateral knee transplants and the knees are the most painful. Am on Lortab now because of the knees. I don't expect to be pain free. If I were, I'd be a slug. I can deal with some pain. I need to be able to function mentally.
Don't demand pain meds from your RD, lead up to it a little less aggressive and they'll probably be more cooperative. Google pain treatment for the disease that you're being treated for and make sure you've done your homework when you talk to your RD. You'll get all kind of answers from people on the forum because the disease is different for each of us. Pain is subjective. My 6 pain level isn't your 6 pain level and pain med requirements will be different for each of us. Good luck. Am happy to hear that Enbrel is working for you. Lindy
I was diagnosed with RA when I was 10 (now 22) and, after living over half my life with chronic pain, I've reached a point where I'm so fed up with it that almost any level of pain is unnacceptable. I'm on enbrel now, which actually does work wonders, but it doesn't fix everything.
I believe that statement tells us why Fuzzi is on Enbrel.
Hi Fuzzy and welcome to AI. I agree, the pain medications we take are as different as the RA medications themselves. I also find that doctors are very reserved with prescriptions of these pain meds. In my personal experience, I have been on Vicodin, Darvocet, Percocet, Tramadol and Tylox (Oxycodone) and none of them have been what I was hoping for. Although they do take the edge off a little bit and help me sleep, I've never had the luck of being pain free. I have a very high pain tolerance so the only time I take the pain meds is when I'm in the middle of a really nasty flare. Unfortunately, I still want to cut my limbs off even with those pain medications. Someone once mentioned here that I should try taking the pain medications daily so as to keep it in my system before the nasty flares arrrived. I really don't think I could function all that well mentally if I did that and when I asked my RD, he gave me a big "NO". I understand about being fed up honey... I've even went so far as to tell my RD that when the pain is that bad, I'd shoot heroin if it was available and I thought it would work. He didn't like that too much but hey it is what it is and that really is how I feel. I was trying to be honest, not impress him. Not only does the pain hurt like nothing you've ever felt, it starts to mess with your head too. I was a little confused by an earlier post asking you why you are having pain if you're on Enbrel. Umm, I'm on Enbrel and I'm still in pain, still have nasty flares and am still dealing with chronic fatigue. I certainly feel a difference between Enbrel vs. no Enbrel but it sure hasn't been a wonder drug for me. I think we need to keep in mind that these medications don't work the same with everyone. I will caution you as well when it comes time to talk to your RD about pain meds. Although this bastard of a disease certainly doesn't discriminate when it comes to age...the human race tends to. I'm 38 and I believe my RD is more conservative with pain meds with me than he would be with someone in their 50's and then there's you at 22 with this horrible disease...they may be even more reserved since that's pretty much the go wild and party age. Anyhow, I guess what I'm trying to say is that if you need these medications think carefully how you're going to approach it with your RD. Going in saying something like "Pain at any level is unacceptable and give me something from the big leagues. I don't care what it is or if it's addictive, I just want relief"....Probably isn't going to set very well and will probably raise some crazy red flags. Don't get me wrong...I'd love to go in and say just that sometimes...but you can't. Also keep in mind that they monitor those pain meds pretty closely and you have to have approval before your next refill. I actually take my bottles to my appointment with me so my RD can see that I'm not a junkie
Peace & Love...Neasy
Hi and welcome to the board! I agree that you have to really ease into it with your doc on pain control. Don't demand something. I started off asking my doc (my pcp does my pain management) for something light to help me cope on bad weather days. I went into a really bad flare and then progressively moved up the narcotic ladder when the light stuff stopped working for me. Now that my flare has finally gone away, I need to go back down to the light stuff for the bad weather days.Fuzzy, I have had no problem getting pain meds but I worked my way up. Starting at Darvocett. In the beginning, it was fairly effective but all drugs - you build a tolerance. So my advice is ask for stronger pain meds than you are on now and then go back to the doctor if they are not working and tell him/her. I have had a lot of support from my rds so that may have helped. I have been told for about a year now that they want me on morphine but I am waiting. Fuzzy, it is going to be more difficult for you. You are so young. There are only so many options and they do not want you to run out of pain control options. I agree with Neasy.
Neasy sweetie - This is what I have found. When you take the pain meds daily, it keeps the pain more manageable. Like everyone says - you still have to put up with some pain - more some days. The good news Neasy is when I started on these pain pills my reading comprehension and memory went out the window
Even in pain - I can veg out in front of the tv. I am also going to try "books on tape". I just never get to the library because I rarely drive. Can you believe that - RA has taken away my independence which is the worse. The stress of driving is just not worth it. I used to love to drive.
My latest plan is to take a chair and a friend to take the dogs out. I cannot walk or throw a stick but it will be good to get outdoors again
PS Anyone see the "Riches" on FX. Minnie Driver is on it. This year is its first season. It is a great show and I want everyone to watch it so it never gets canceled
"I'm so fed up with it that almost any level
of pain is unnacceptable."
I'm not sure this is realistic when you have these diseases. I think most of us tend to learn to live with a certain amount of pain, and most pain medications don't entirely free us from pain anyway -- the most relief I've ever had is "the edge taken off."
I may be dead wrong in my opinion, but I've never known anyone with RA that could ever say they were pain-free.
Janis
I agree, I don't not think being 100% pain free is realistic when you have ra. I know some pain varies greatly among us, just as the severity of the disease. The others gave great advice, at age 22, they are not going to pull out the big guns for pain meds when you aren't on anything now. You have to climb the ladder sort to speak. I too, have gone from ultram, darvocet, vicodin regular, to vicodin es, to oxycodone every 12 hours with oxy ir for break through pain. However, I can only get this through my pain clinic, am subject to pill counts, had to sign a narcotic agreement, list my pharmacy, they called my pharmacy as well and must get a new, written script every 30 days. This is not something to be taken lightly. And, I still suffer pain, some days very severe, enough that I have been to urgent care in the last 2 weeks and the ER room at least 6 times in the last two years.
"I'm so fed up with it that almost any level
of pain is unnacceptable."
I think we all know pain free is unrealisitc but I can certainly understand how Fuzzy is feeling. I know everyone is different and this disease affects everyone differently but the pain really does play on you emotionally sometimes. No one wants this disease or the pain and fatigue that goes with it but we do want and need to find a way to still have a life with it. Fuzzy sounded angry and lost to me....something a lot of us understand very well. I've been positive, determined, depressed, hateful and suicidal with this disease...it's one hell of a ride. I really feel bad for Fuzzy. I didn't suffer from RA until my 30's so I had a great time in my 20's. At least it didn't steal that time of my life from me. I'm so sorry you have to go through this Fuzzy. As much as I hate this disease and struggle with it in my life, when I think of kids and really young people having it...well, it simply breaks my heart.
At my walk in appointment yesterday when I told the RD (not my regular RD) that the pain meds didn't really do much besides take the edge off a little...he agreed and said "Yeah they really don't do a whole lot do they...I'm sorry". Although I wish there was a magic pill, somehow hearing that statement from a doctor for the first time helped me in some way. Perhaps it was just hearing it instead of here try this, try this.
Fuzzy, I've been watching to see if you post. I've been worried about you. Please let us know how you're doing. You can even PM if you'd like. We are here for you honey.
Peace & Love...Neasy
You bring up an extremely valuable point, Neasy. My comments were not directed as critisim, but as an "outlook." We have every right to be angry, damn angry at these diseases, and Fuzzy, you have me firmly behind you in wishing there were a release from the pain. While we are "stuck" with a certain level of pain no matter what, we surely can be angry, depressed, and downright sassy towards it.
Janis
Islandwoman...I know your comments weren't meant as criticism. You were being realistic and trying to help.
I couldn't agree more with the rest of your post. Well said Janis....Well said!!
Peace & Love...Neasy
Is you DR giving you any pain medication like Vicodin etc? If you are looking for more of a schedule 2 narcotic like a pain patch or other narcotic therapy, I'd discuss a pain management dr with your Rheumatologist. I know my Rheumatologist refers people quite often to a pain specialist. I too have had RA since I was a kid (undiagnosed until a few years ago.)
My Dr has also found ways to enhance my Vicodin 10mg in the even with a muscle relaxer and mild tranquilizer. It allows me to get past the pain to sleep.... sort of. Good Luck!