Rheumatologist who doesn't prescribe pain medication?

General
1

Hello,

My rheumy does not prescribe strong pain medications. She has given me Voltaren gel, Lidoderm patches and localized and systemic (Depomedrol) steroid injections for pain management. She does prescribe NSAIDS to some patients but due to my GI issues she doesn't prescribe those to me either. She does not prescribe narcotic medications as a rule.

I have really been struggling, especially the last 4 weeks. I've been on a 3-month break from my Orencia infusions in preparation for receiving the Shingles vaccine. I've continued with my Methotrexate during this time but I'm really suffering!!

My fingers in particular are just SO painful! You all know the pain. I don't have to explain it.

Talking to my husband this evening while in agony, I got to wondering what other Rheumys do for pain management. Is my doctor the only one who doesn't prescribe strong (narcotic) pain medications? I don't like to take pain meds but there are times that I just feel like I can't stand the pain anymore! It's exhausting!

I LOVE my Rheumy but I really need more help with pain management! What does your Rheumy do? I appreciate any feedback!

With thanks,

Heidi

2

My rhumey does not prescribe pain meds at all. No matter what type. He sends me to my internist.

3

Mine doesn't prescribe pain meds either and he is a wonderful doctor. That is why my primary suggested a pain management clinic. Have you thought about that?

4

Mine doesn't prescribe pain meds at all, not to me anyway. She does adjust meds as necessary. But she doesn't do long-term prednisone either.

5

Very interesting!

I never gave it much thought before but I assumed that my Rheumy was in the minority but apparently it's common to not prescribe pain meds. I understand that there is a huge epidemic of pain medication abuse and addiction in this country. Since PsA is life-long and progressive maybe they think the risk is too high with long-term use? I don't know...

I will have to talk to my primary care doctor and my Rheumy when I see her next month.

Thanks everyone!

6

Well I guess the best way to know is to ask..... So i did. My little gal says her job is to control inflammation. Once the inflammation is under control, her job is done. She won't deny that there might still be pain but as the narcos don't treat it, its out of her purvey. At that point there needs to be more diagnostics done is nerve, joint damage etc etc. Its the PCP's job to be the "diagnostician" (an old term I know) pretty much what she says is Narcos don't treat pain and idf all she does is cover it up she has done a great disservice to her patients. the cause and source of the pain needs to found and corrected.

Current research in not only Rheumatrology, but other fields as well is to determine what ELSE is causing pain. So now I am going to Rant a bit here. Not about the disease, not about Docs but about us and our attitudes (absoultley NO ONE in particular......

We moan and groan complain about our rheumys and finding one who will listen etc etc. but at the end of the day They have only a few arrows in their quiver: NSAID, DMARDs, Predi (either or oral or injection and Biologics) They can send us to PT, or OT for help (few of us EVER take advantage of the last two)

So we go to a rheumy he goes through all the arrow s in his quiver (which takes years given the possible combination) and we still have pain. Suddenly he becomes (pick one or several) uncaring, a jerk, incompetent, cruel, and my personal favorite out of touch with reality (ie he doesn't know what we are going through - really??) Our "case" becomes more complex and difficult than any other and stumps the "best"

Maybe what we should realize is that even though all our symptoms "fit" a particular description or are indicative of "inflammation" we are DETERMINED thats what it is even if the doc can't find any (it must be hiding somewhere) We continue to play with everything that controls it and for some reason decide that guy across town can do the same thing but better (yup it happens can't deny it, nor do I believe you stick with a guy you don't like or have no confidence in)

I'm coming to a conclusion here.......

the problem isn't the rheumy, the problem is we choose our PCP based on his "nice factor" and willingness to whip out his script pad. Rarely do we choose him for his ability to seek and find answers or send us to people who can.

I know people who have been to dozens of docs all of whom end up doing the same thing because they are trained to do the same thing. "I know its PsA, it all fits" "The doc won't Dx it" Okay have you taken your NSAID, DMARDs, Predi (either or oral or injection) and Biologics? Gone to PT and OT, done your exercises and stretching? And you are not better???? Is a new name for the disease or one you like going to change the results?

Can suggest you fire your PCP and find a better one? Visit a multidisciplinary team. I can't tell you the number of people who have managed to get an appointment with the famous Doctor So and So spent thousands on blood work and Studies they have had before and walked out with a script for MTX or told I don't believe you have XXXX.

Seenie got the gold ring in her merry-go-round ride but at the end of the day it didn't change much, and we'll never know if it would have, had her other docs had known how aggresive her disease was.

Anyway few Rheumys prescribe pain meds beyond a very short course of weak stuff, and its becoming fewer (in the US.)

7

Thanks Lamb. You made a lot of great points. I agree, it's the job of the rheumy to work to control the disease, but sometimes it's not controllable through meds, especially where there is damage. Personally, I'm a frequent flier with my local physical therapist. Strengthening and stretching can really help a lot, as I find that when joints get weak, they hurt more. I have an orthopedist (or two) that I like, and they send me for PT when I hit a certain point. Right now I'm working on my hips and knees. Last year I did major work on my ankles. I continue to work on them at home.

I'm also seeing a hand therapist to work on some of my thumb instability, etc. I also want to point out that sometimes just the act of taking control of the situation can do a lot in terms of perception of pain.

In terms of diagnoses, my primary diagnosis is PsA. I seem to have developed Sjogren's and am treating it. I also have some nerve problems. . . . The neurologist is comfortable saying that they are autoimmune in nature. But at the end of the day, it's all inflammatory, and needs to be addressed as such. Having a name for it isn't really necessary, as long as we understand the nature of the disease, and treat the disease, not just the symptoms.

8

Stoney, you are so right when you said taking control of our situation can do alot in terms of our perception of pain. When I followed the advice that both you and Lamb gave to me a few months ago about finding a PT and exercise it made a drastic impact on the quality of my life. I got back some mobility, some of my strenghs and alot of my drive and ambition. After taking that step, I realized that I had taken control of my disease and stopped letting it control me. I still have lots of pain and am on meds, but I manage it in a different way. I accept this is what my life is and that I now have new normals.

lots of times people come on this site to vent and let their fustrations and fears talk for a while, its sort of a release of all the pent up emotions that we don't always feel our families would understand. Its easy to blame our health care physicians that we still feel so miserable and it feels like they are not doing anything to help us, when in reality they really are. We have to learn patience not only with our doctors but with ourselves as well. Our disease didn't get to this point over night and we certainly can't expect major results overnight either.

Heidi, I hope you find some relief soon and some answers to your questions about pain management, the unknown about this disease is probably the scarest part. Stay optomistic and do as much for yourself as you can and you will be rewarded for it.

9

my rheumy has RA, so she understands the pain.

She has no problem prescribing pain meds. She has put my wife on tramadol, and me on vicodin 10/500. thank goodness too because i can't deal with the intense pain while trying to make a living.

10

Good for you!

Easternlady said:

Stoney, you are so right when you said taking control of our situation can do alot in terms of our perception of pain. When I followed the advice that both you and Lamb gave to me a few months ago about finding a PT and exercise it made a drastic impact on the quality of my life. I got back some mobility, some of my strenghs and alot of my drive and ambition. After taking that step, I realized that I had taken control of my disease and stopped letting it control me. I still have lots of pain and am on meds, but I manage it in a different way. I accept this is what my life is and that I now have new normals.

lots of times people come on this site to vent and let their fustrations and fears talk for a while, its sort of a release of all the pent up emotions that we don't always feel our families would understand. Its easy to blame our health care physicians that we still feel so miserable and it feels like they are not doing anything to help us, when in reality they really are. We have to learn patience not only with our doctors but with ourselves as well. Our disease didn't get to this point over night and we certainly can't expect major results overnight either.

Heidi, I hope you find some relief soon and some answers to your questions about pain management, the unknown about this disease is probably the scarest part. Stay optomistic and do as much for yourself as you can and you will be rewarded for it.

11

Thank you everyone for your information and replies.

I didn't mean to imply that I let PsA get me down and hold me back, if that's how it came across. I have a very active life. I have a home, husband, 2 kids under 12, 2 dogs under 2 and a full-time job. I exercise 4-5 days a week (swimming and walking mostly - sometimes yoga). I never miss an event in my children's lives (instrument and vocal lessons/performances, soccer practices and games, etc.). I help care for my mother who has MS and my grandfather who has Alzheimer's.

I don't think that feeling out of control from the disease and the perception of pain are particular factors for me at this point (thought they might have been early on) and I'm not upset at all with my doctor for doing or not doing anything. I love her and trust her explicitly! I was just wondering how other Rheumys treat pain. I deal very well with the pain for the most part (have always had a high pain tolerance). During this most recent flare though, I've had a few nights where I can't even straighten out my fingers or hold a glass to drink and the pain feels like torture. During those times, I don't believe there is any harm in taking something for the pain. The joint damage in my fingers has progressed markedly (as shown in rad. imaging studies) over the last year+ as we have struggled to find a treatment program that works. I don't think either of my doctors are surprised that I have pain at this point. Up until now I've not wanted any help with it, but I would like to have something I can take when/if the pain gets to that point. The ice and heat which I usually rely on, are just not enough some nights. I need to be able to sleep.

Ok, that wasn't meant to be a rant, but you're right, sometimes it just really helps to come on here and say (rant) the things that others don't understand. I just didn't want anyone to think that I'm sitting home wallowing or worry for me. :)

Easternlady - Glad to hear that you have improved!! I hope it continues!

Thanks again!!!

Heidi

12

Lamb I was reading your post with bated breath! I was very worried when you mentioned Seenie that I would have to stomp your butt! I can't let anyone say one word against my friend Seenie she is such a peach! And very dear to me. But you did just fine and I am so glad you are feeling better.

Stony and Easternlady I saw myself in your posts and wish you all the best on this journey we are on together though parallel.

I found a turning point in coming to terms with psa. Once I had accepted my new life I was able to take better control. I am cleaning up my diet, doing my exercises in a warm pool, get a massage weekly and try my darndest to manage activity with rest. It is an ongoing balancing act. I look to manage my pain with Aleve (naproxene) 2 in the morning and 2 at night, 1000 mg of Tylenol 3 times a day, splints, heating pads, Salonpas topical patches, meditation, rest, soothing music, hot baths, paraffin dips, etc. I keep a list to consult because after feeling good a while I forget all the things that have worked in the past! I also boost my water intake when in pain, I am not sure why but it seems to help. Maybe it "washes" the products of inflammation out ?!

The most important thing I have found is I see myself as a partner in my health care. I do not know if this is because I am a nurse and have all sorts of control issues but I feel I am "the gate keeper". I keep track of the tests and labs and referrals I have had. In the years I have been aware I have had psa invariably someone suggests an EMG or some other referral I have all ready had and I remind them gently, "so are we looking for changes from the one I had in 2009" not because it would have changed but to remind them they have all ready gone that route. My primary suggested a shingles last visit and I reminded her I am not suppose to while on biologics. I didn't really want one anyway as they are so expensive (300-500) and most insurances won't kick in esp with patients under 65 and they are only 20-30% effective in preventing shingles. We agreed if I developed any symptoms of it I would call to get the antivirals right away. I did not mean to be so verbose; my point mainly is when you see yourself as a partner in this you don't look to others to "fix" you.

My doctor is my guide to treatments available but ultimately it is up to me and of course psa.

Lamb I think you should save your post. I know we will all need to be reminded more than once! Thanks for your wisdom.

13

To address the original question, I think many rheumys don't prescribe narcotics. I never talked to my first one about it, as I personally have never met a narcotic that doesn't have me vomiting in short order! She did ask if I was taking anything for pain at one point, but never offered and I never asked. When my second one mailed me paperwork about my appointment, the biggest, boldest thing on it was an announcement that they do not, will not prescribe narcotics.

I have wondered if drug seekers use fictitious RA/PsA symptoms to try to get oxycontin. I think many doctors are rightly reluctant to take on pain management. There have been plenty of lawsuits and lost licenses over real or suspected overprescribing.

14

Hi Louise,

Thanks for your response. My doctor was not as formal about it as yours (I've never seen anything in writing). I only found out about her not prescribing pain medication when I told the nurse I am allergic to Morphine and she said "Don't worry, the doctor doesn't prescribe those kinds of drugs." I too vomit from pain medication though when I had Shingles we found that if I pretreat with Compazine I can tolerate one or two of them. I can also take Tramadol without issue. I was thinking the same thing that it might be related to overuse/misuse and protecting themselves from liability. Understandable.

Have a great day!

Thanks again,

Heidi

15

Everyone is in a process. Heidi, I didn’t think at all that you were blaming your Rhuemy. You just asked a question. My Rheumy does not prescribe pain meds either. My primary doc and foot Doc will prescribe pain meds until we get the PsA under control. It’s not yet. I don’t want to get addicted, so i tell them that. That would meanore pain if i got addicted to pain meds. But, I don’t want to be impaired by pain either. I have to, and WANT to keep working.

It’s okay to be exactly where your at in this process. I don’t have to be where anyone else is b/c I can’t. It’s all