Pain Meds

Can I get an “amen” for pain meds?!? Lately I’ve been frustrated with people who can’t understand why I would take pain meds every day. I’ve had PsA for around 15 years, and thank God, I’m still fairly mobile. But I wouldn’t be without my myriads of medications, which includes pain medicine including narcotics. Most of the time I wouldn’t mention this to anybody, but when I do, people react in ways that makes me wonder. Even the nurse administering my Remicade once looked shocked that I take pain meds regularly, asking “Does Dr (Rheumatologist) know? Well, yeah-since he prescribes them!” I have NO interest in being a druggie or “escaping” my life! I just want to LIVE my life! So every day I take Ultram (Tramadol) on a schedule, 3x a day (a moderate dose) and 1/2 a Percocet (5/325),2x a day. It doesn’t by any means take away my pain, but it helps me to function, and to keep me working part-time as a nurse. Does anyone else out there take pain medicine on a schedule, or (heaven forbid!), narcotics?
Disclaimer: YES I have tried diet changes, including gluten-free for 6 mos, Acai juice and Xango juice, and green shakes. I have tried herbals and Heritage oils. I try anything my friends and family encourage me to try, because they love me. But none of those have worked for me…yet! :slight_smile:
I believe in God, and many of my friends do, too…so I am baptized in prayer every day, which keeps me generally positive about this painful journey…And I thank God I’m doing as well as I am today! But nobody seems to “get” this need for pain meds…except, (thank God) my husband and kids and my awesome rheumatologist! Has anyone else had a similar experience? I know many of you wouldn’t dream of taking pain medicine, and I respect that decision…but surely there’s someone else out there who can relate?

That’s great that your Rheumatologist is willing to give you pain medications (most are not). The only pain medication that I take on a regular basis is Celebrex. I have stash of Tramadol, but it doesn’t help much. Sometimes I take a vicodin before I sleep if I can’t take the pain, but nothing consistently.

The only pain med I can take, due to liver and other issues, is Tramadol, which doesn't do much for me. However, I can say that the very few times bad flares have ended up in an ER visit, I've been VERY thankful for narcotic and other pain medications! If I could, I would take pain meds on a schedule daily - that would be fabulous!

Just a heads up, you may be in for a rude surprise as the State of new York now considers ALL opiods a narcotic including and especially tramadol. Your rheumys ability to prescribe long term is at or soon will be at an end. I'm not sure what all medications you are taking but daily tylenol is really questionable even at 300 - 600 mg/day especially when taken with most arthritis medications. There are non-tylenol versions available.

My LFTs are good, so the Tylenol in the Percocet isn’t an issue. And I haven’t had any issues with filling any of my pain medications. I believe the Tramadol rule came into effect in 2013. What pain medications do you take, tntlamb?

I do not believe, with all the pain meds available, that we should have to live with debilitating pain. I know my rheumatologist has been very compassionate, and for that I’m very thankful. I will soon be moving to another state, and I realize I may never find a doc as good as the one I have now. But I will fight to live as close to pain-free as possible!

Glad I don’t live in NY. I see a pain specialist for all my pain meds

Your electronic scripting will take effect in Oct. this year. You will have to have a documented office call every 30 days, The total amount of controlled substances for self administration prescribed by PCP's , including sub-specialties (rheumatology is a subspecialty) will be limited. (In most states that's somewhere around 120 mg morphine equivalents/year) That doesn't mean you won't be able to get pain meds, you just won't be able to get them from your Rheumie. You may have an easier time getting Tramadol in other states as it isn't a federal Diversion Drug for a year or so. Years ago I took a number of pain meds until i found out how incompatible they are with our family of diseases - the hard way (no it wasn't addiction, it was increasing and/or intractable pain. My pain rehab was about two years. The research is pretty clear that the action of these meds on the nocicepton, sigma and toll-like 4 receptors among others creates allodynia and hyperalgesia for just about everyone using them over time. Should there be any underlying nerve pain which is increased by them, true migraine, which is exacerbated or Fibro which is amplified, one is really screwed. I doubt there are any of us who haven't needed a hand from time to time, but honestly like the others here throwing a couple of tramadol at it is sorta like putting out a forest fire with a tea cup.

Thats probably why the overwhelming majority of rheumies will not prescribe them and if they are unable to manage the disease well enough to preclude the need refer to pain specialists.( Incidendtaly this happens less than 5% - 10% of all patients in a normal rheumatology practice)

I have no dog in the fight. If someone wants use heroin, that should be their right. By the same token a physician who is doing right by his patients by doing his best to keep the patient from worsening their condition with medications that will assuredly do so should not be labeled compassionate or not compassionate.

BTW if you wait for bad LFTs from tylenol you are in deep doo if you get them. More arthritis patients are fouled up and/or killed by NSAIDs and tylenol than any part of the disease.

I have no issue with seeing a pain management specialist. I know of cases like yours, tntlamb, where people have needed more and more pain meds for relief because of physical dependence. I think that’s easily handled by taking med breaks- at least that’s how I’ve handled it. And my LFTs have been high in the past, but have come back down so I don’t agree that if you wait for them to be elevated there will be a chronic or severe problem. I neglected to mentioned that I also have osteoarthritis so maybe that’s why my doc prescribes the Percocet- but I’ve never asked. Also, Tramadol isn’t much good for flares…as people have alluded to. But for daily chronic pain it has helped me a lot for many years.

Osteo is different bag for sure and sadly in the gap between joont replacement and the incidence where there can be no replacement. Pain management is the only option.

I didn't have dependencey issues. Allodynia and hyperalgesia are unique gifts of our form of arthritis where the pain meds ultimatley cause pain of their own. It is especially bad with nerve pain.

Yes a big AMEN!! I am a nurse also-working FT plus-mostly because if I don't have a reason to get up I will stay in bed and feel worse. I feel like sh.. every morning. I have been on several different pain meds-scheduled and as needed-currently one scheduled and 2 as needed. I have had the conversation with my doctor on the last 2 visits--that I am tired of the stigma--I am not an addict--and I am not going to take the pain med anymore. Both visits he handed me a kleenex and said yes you are. You need it.

Thanks, jhelvey…I was beginning to think I am all alone in this situation! So happy you have a doc that cares about your pain. They seem to be few and far between!

Oh boy can I relate. Tho, between the pain meds, and the meds needed for the disease caused me to go on memory was effected.

I'm OK with it I would rather go on disability, than to get fired due to poor job performance. I was an exemplary employee for 16 years.. Then everything went downhill..

Even some of my close friends still don't get it.. I'm pretty private about it.

Huggs. Karen

Thanks, Karen. I understand why you don’t talk about it. We are sometimes made to feel as though we have something to be ashamed of because we don’t want to live in pain. And that’s just not right.

Tntlamb, can you please give me some references for allodynia and hyperalgesia specifically related to PsA and pain meds? Since I wasn’t really familiar with those terms, I started doing research on the web, but I can’t seem to find anything specifically related to PsA. (Although I am happy to report that I don’t have either allodynia or hyperalgesia…thank God!) Thanks for your help!

I agree fully. It too me several months to get used to them. They made me feel weird....spacey...but still didn't get rid of the pain

Take care


You will have to use different terms try "opiod induced"

obviously there won't be any studies.

Elle said:

Thanks, Karen. I understand why you don't talk about it. We are sometimes made to feel as though we have something to be ashamed of because we don't want to live in pain. And that's just not right.

Tntlamb, can you please give me some references for allodynia and hyperalgesia specifically related to PsA and pain meds? Since I wasn't really familiar with those terms, I started doing research on the web, but I can't seem to find anything specifically related to PsA. (Although I am happy to report that I don't have either allodynia or hyperalgesia...thank God!) Thanks for your help!

I am aware that there are times when pain meds are necessary, and needing them during a hump is nothing to be ashamed of. In my experience, though, there are a number of ways (albeit less efficient) to alleviate pain without narcotics, like mindfulness, exercise, adequate rest, getting disease under control, etc. My rheumatologist doesn't prescribe anything resembling opioids or narcotics, and I don't feel comfortable taking them as a recovering alcoholic. It's worked out well, despite the very rough nights where I just couldn't sleep... I am grateful, I suppose, that I can take time off work and am not pushing myself unwittingly by stressing inflamed joints by using them under the influence of pain meds. I am crossing my fingers (ha) and hoping that less damage is happening.

Rosen, needing pain meds is nothing to be ashamed of. Period. Pain is not something to be ashamed of! And the attitude that we who need pain meds daily are somehow “less” (pick your favorite adjective- brave, strong, etc) is hogwash. I don’t know anybody who tries narcotics first. I myself take good care of my body by eating right, resting plenty, and exercising. I have tried many complementary therapies through the years, also. But it shouldn’t ever be embarrassing to want a good quality of life. And the bottom line is, nobody knows my particular suffering. And nobody knows yours. But if I can do some good in this life because I don’t have to spend all my energy fighting pain, that’s the life I choose. I choose to LIVE, not just exist!

Elle- forgive me if I implied that I think pain meds are inappropriate for all, or diminishing anyone's experience of pain. It's awful. I was just sharing my experience, which involves a great deal more living than I did when I used substances because I didn't use them how normal people do. It's different for people prone to substance dependence - some adjustments have to be made with medical care, in order to avoid complicating recovery from addiction.

Tntlamb, ok- thanks!