Rheumatoid Arthritis Pain Relief: What Do You Know?
The topic of pain relief came up last week in the Twitter #rheum chat. A couple of people Tweeted that their rheumatologists don’t give them pain relief meds. I hear that from people sometimes, and I wondered…
Whose responsibility is it to provide Rheumatoid Arthritis pain relief?
The huge pain study by Strand showed 72% of Rheumatoid Arthritis patients live with daily pain even though 75% take daily pain relief medications. Do rheumatologists realize this?
Here’s a typical conversation I had on the topic of Rheumatoid Arthritis pain relief with a reader called “Mike.” Like I told Mike, I think many patients seek pain relief from a primary care doctor or a pain specialist when they can’t get it from their rheumatologist.
What more can be done for pain relief for people living with Rheumatoid Arthritis? When we think of how quickly new inventions appear and change our landscape, Professor West seems justified in saying “It’s beyond pathetic” if more cannot be done to bring relief for RA.
Patients also Tweeted: At what point do you ask your rheum doc for pain meds? How do you approach them about it? Anyone had a bad reaction from their doc about it?
Announcing a Rheum Blog Carnival about Rheumatoid Arthritis pain relief
Since this topic touches such a large percentage of rheumatology patients, I’d like to expand the conversation about pain relief even beyond the comments pages to other blogs. We’ll have a blog carnival for anyone who’d like to write on this topic. Any type of blog can participate, as long as you email me your link by noon EDT, August 9th date extended till Aug.12th (the sooner, the better).
Some topics that might be explored in a blog post on Rheumatoid Arthritis pain relief:
- Do people have sufficient pain relief? Are medications sufficiently prescribed? Do they work?
- Which doctors prescribe medications for Rheumatoid Arthritis pain relief? Pain management specialists? Rheumatology practices? General practitioners?
- Which methods for Rheumatoid Arthritis pain relief work? Eastern medicine techniques like acupuncture? Spiritual techniques like meditation? Traditional physical methods like heat, ice, or rest?
PLEASE put RA Pain Blog Carnival in the subject of the email.
Recommended reading
- Should Chronic Pain Patients Be Treated in the ER?
- FDA Limits Acetaminophen in Prescription Pain Medicine
- The Isolation of RA Pain: Short Poem Video
- The Tug of War of RA Awareness: Privacy of Pain & Agony of Disclosure
I understand some choose to not take them. But I wouldn’t have survived without pain meds. Don’t think it’s a sign of weakness.
I haven’t posted for a while, but have been reading the blog regularly and quietly 🙂
Pain has become one of the most overwhelming factors for me atm and it is impacting on my mobility in a big way. My pain has been increasing over the past six months or so and whilst long distance walking has been out of the question for probably 2 years + now (in my pre RA years long distance was many miles) six months ago it was 200 metres and now I need a shopping trolley to walk around the supermarket.
I first had Oxycontin 20mg for my back, initially for D.D.D. and needed it on occasion when the pain was at its worst.
However, I am currently on 50mg Oxycontin twice daily (every day) and Endone 5mg x 4 as needed for breakthrough pain since my RA ‘took hold’. I’m still on Pred too and also take NSAIDs and Omeprazole to help protect my stomach. A fairly recent Gastroscopy confirmed that the Ompeprazole is doing it’s job!! But the effect of my NSAIDs is limited and not always consistent.
My GP is the one who prescribes my pain meds and quite frankly I would be bed bound without it. I had the familiar concerns about Opioid meds, but more about tolerance than dependency. But for me right now, it’s about quality of life and that is far from exaggeration.
It’s still tough to get moving even with these meds, but without – it’s intolerable and I have tried. Because of my elevated liver enzymes, avoiding meds with Paracetamol definitely seems to help them stay at a reasonable level.
At my 2nd appt with my new Rheumy 2 weeks ago, she decided to start me on Humira (my 1st biologic). So that’s my next step.
My GP has been very good re my pain meds and prescribes me a month of meds at a time. However, as my dose needs increasing, I’m getting the feeling that she would prefer that my Rheumy takes over. Sadly, the few that seek these meds for reasons other than pain, do impact on many doctors willingness to prescribe beyond a certain point and sometimes at all.
As someone who definitely had reservations about taking opioids pre RA and DDD, experience has shown me how much difference they make in my life. Whilst I’m not getting complete pain relief, it’s so much more tolerable.
Thank you kelly for this topic.
My Rheum will not give any pain med. and not taking anything for RA. The PCP has in the past given ocy/cod and lortab which I had to stop. Tramadol dose very little for my pain. Pain mgt gave TEN unit which helps little and I am concerned about blocks because I take warfarin (blood thinner). I would like pain meds and can not understand why I can not get them. I can do very little because I hurt so bad.
I too started out with tylenol with codeine, then tramadol and now percocet. If I have a flare, nothing helps. I just rest until I feel better. I do not like to take prednisone (weight gain) or mexotrex (baldness). or humira (because I’ve had severe infections) I have recently retired after almost 30 years on the job and I have never felt better. Stress makes the pain much worse.All in all my rheumie gives me pain pills monthly.
I think that the pain quota is underestimated by all. First the doctors want to ensure that the joints stay mobil enough as they are visible. The patient feels the pain more in the fatigue factor and no one can seem to understand how we feel. I finally found a DO that asked me the question as to my “normal” pain level – and believed me. He was treating me for high blood pressure also. He found a treatment that works. It works so well it also brought my blood pressure down. Funny how the body works, isn’t it? I have to drive 40 minutes to see him, but I feel it’s worth it.
Every once in a while, I take Percocet to give me a break from the discomfort. For me I take two at a time and only infrequently. It works and for a few days after I have found relief. Sometimes the constant stress of the pain wreaks havoc on my body and I believe it worsens my overall condition. With all the meds I am not one to jump in and take more, so rest assured it is only a part time vocation.
Kelly, Have you ever written about RA affecting the brain? I feel like my brain function has gone downhill the last couple of weeks pretty dramatically. Is this “normal” for RA patients? Am I imagining it? Does anyone have experience with this aspect of RA? Help if you can.
Jane, the only time I experienced this distinctly is when I started methotrexate. It continued until my body adjusted, then this side effect went away. Otherwise, the fatigue and fever when bad can make me less sharp.
I understand. Brain fog seems pretty common with this disease. Sometimes I blame the meds, sometimes the fatigue, sometimes the depression common with chronic pain, but yes my brain function has definitely declined as well.
My rheumatologist told me that RA does not cause the constant pain that I’m in that its fibromyalgia. Although I agree that fibro hurts, this is chronic JOINT pain, he also told me he doesn’t prescibe pain meds and that I need to go to a pain management doctor.
Amy, there seems to be a sort of division among rheumatologists on this matter. There are lots of them telling patients that and lots others who disagree. Actually, that comment goes for both points you made: the pain meds issue and the FMS one. Are you going to try the pain mgmt dr option?
Bull-oney that it doesn’t cause constant pain whether it is acute flare pain, non-accute flare but daily pain, or constant flare pain. That is why we need more brave have-RA-themselves rheumatologists and docs to step out of the shadows and speak up for us. How is the “other camp” division of rheumys ever going to understand this otherwise? I am not a fan of taking opoids/narcotics myself – yet and thankfully yet – but wtf? If we need it to function or sleep, at whatever level we can, then we need it.
I know right! Rheumatologists need to be understanding because this disease is disfiguring and disabling. Let anyone of them feel our pain for 30 minutes and they’d be ready to jump out the window.
Yes I have been going to a pain mgmnt doc for about a year, the best treatment so far has been Percocet. I do take Tramadol as well as Lyrica,these meds relax me some, but doesn’t touch the pain. Its frustrating but I am glad to see I am not alone, although I don’t want anyone to have this, it helps to have people that understand. At the pint now where I have to get a wheelchair because the walking is to unbearable, and I’m only 34.
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I am currently on tramadol but i still am in constant pain. At the last appt my Rheumy perscribed me Methadone which i never even took all the pain medicine after each c-section with my boys, so when I came home I looked it up I was shocked! I called my Rheumy back and said Thanks but I dont think Im at that point just yet. Dont get me wrong some days I cant walk Im in horrible pain but I also have ADHD and with my type of personality a medicine like that scares me! I feel there has to be something in the middle of Tramadol and Methadone!! But cant say he didnt try to help!!
Joey…My PCP prescribed Methadone for me after years of constant pain and when tylenol and tramadol no longer controlled it…I LOVE it!!! It keeps me very comfortable…What a relief to my body and mind…
Jewell
Jane, I’m rather newly diagnosed, so I may not be as knowledgeable as some. However, my primary complaints when seeking a diagnosis were the fatigue and sharp decline in cognition, which impacted my ability to work. I never complained of the joint pain, which probably complicated my diagnosis. I knew I hurt, but I am 61 and was very active, and I assumed the age and activity levels were responsible. Fortunately for me, the RA numbers were all there, and the correct diagnosis was found. Since this post is related to pain, I will say that I didn’t realize how much pain I was experiencing on a daily and sustained basis until my RA was diagnosed and then I began Enbrel after methotrexate failed to help. When I first began Enbrel, it didn’t hold me over all week, and on those last few days before the next injection, the pain intensified again. I realized that’s what I had been feeling for a long, long time and had just grown accustomed to feeling. While I’m never completely pain free now and the fatique still overwhelms me at times, the brain fog is definitely better unless I try to push through the fatigue without resting. Then I can’t complete a sentence much less make difficult decisions about options trades. I hope you find a combination that works for you.
Linda-
Not being able to complete a coherent sentence is driving me BATTY. it’s like the words are there, on the tip of my tongue, but I just can’t grasp them. grrr.
I take tramadol for pain a couple times a day, but I wish there was a magic brain pill…..
I didn’t realize that some Rh dr’s don’t prescribe pain meds. That really surprises me since RA’s primary symptoms are inflammation and pain. You need to treat the pain, which enables us to try to lead our lives as normally as we can. And yes, RA brings with it a new normal.
From my first diagnosis I have had access to vicodin from my two different rheumatologists without any questions asked. I’m conservative with it, but take it when I need it and always have it on hand incase. Shortly after diagnosis I was so bad I relied on 3 or 4 pills per day, but now I take one or two a month.
Isn’t pain management a part of RA treatment? If not, shouldn’t it be? I can’t imagine Dr’s letting RA patients be in pain because they don’t prescribe pain meds. Or if they don’t want to prescribe, then they should work closely with a pain management facility to ensure that pain is part of the entire whole body treatment for RA.
Right on!
This has certainly been interesting reading because I’ve encountered doctors who understand the need for pain relief and one who “doesn’t agree with it”.
My fmd (family doctor) was the one who made the suggestion of pain relief. He prescribed morphine. It certainly helped. It made me more functional, but not pain free. I had an appt when my fmd was on vacation and the other doctor in the office refused to renew the prescription and said that she “didn’t believe in it” and suggested I stop taking it immediately. Well those were a few pain filled days. I saw my own fmd shortly after and he re-prescribed at a higher dose. However, anyone who has been on morphine is well aware of the problems that it can cause. Nausea, vomiting, chronic constipation et cetera. I saw my rheumatologist recently. She prescribed a fairly new drug on the market called Targin. Its a combination of Oxycodone and Naloxone. It has certainly been the answer for me. The problems the morphine created are all gone! Now if only I could ensure that I don’t have to the see the doctor “who just doesn’t believe” anymore!
In my opinion every situation is different and only the patient and a Dr. they trust can make the decision about pain meds.
I have had severe RA for 5 years, lost job, etc. My rheumy is reluctant to give pain meds. I am grateful for that. He just kept trying to treat the cause of the pain, (the RA) and with several meds, has finally done that for now.
I also believe my body has adapted to the pain, my tolerance for pain is higher now. I have seen pain meds cause more problems than they solve with family and friends. That effected my decision a lot. But I would never be so bold to say that I will never take them.
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I have found I get a better response to a discussion on pain if I tell my rheumie the ways the pain is effecting my daily activities rather than the degree of experience. They seem to deal better with something concrete and measurable.
That sometimes helps Sarah if the dr is interested, and it’s good advice for patients to try to quantify specific ways pain limits activity or ability. Good point.
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Kelly: Mike here again. As I said before, it has become extremely frustrating to find pain relief from ANY doctor for my RA. My general is “uncomfortable”, my Rheumy has “enough to do to keep his business going” and my former (my choice) pain doc felt I needed less and less and finally none. They all wanted to pass the buck; not deal with it and let someone else do their work–a real dereliction of duty and I’m left suffering. It seems that the pain docs pass thier judgements to the other pain docs and then I can’t find anyone who will even see me. Who’s going to help me? Must I become a emergency room hunter (which they claim we all are and to watch out for these “druggies”–which they have created). I looked for a pain advocate for ME to help my need–no such person or luck. My two biggest problems: #1-PAIN and #2-Exhaustion. I can deal with the exhaustion but the pain–ONLY pain meds give me any relief. Can anyone help?
My rheumatologist seemed truly shocked when on my last visit I told him that I hurt everyday. I’m not sure which one of us had the more confused look, him that I hurt everyday or me shocked that he did not understand this.
On an average day, I don’t hurt badly but I am certainly no where close to being pain free. I’m reluctant to complain because I know that I am one of the fortunate ones who (so far) has a mild version of RA and I can maintain a somewhat reasonably active lifestyle.
Sounds like an experience we could all learn from, Terry. Would you like to submit a blog about that for the carnival? I’m behind so there’s still time.
When I was seeing my Pain Specialist for the first time, I filled out the forms, you all know the “rate your pain on a scale…”. One of the questions was “What is an acceptable pain level?” I actually wrote something like “Uhm, is this a trick question? Acceptable pain?”. She and I had a huge laugh over it when she finally saw me. She said it was good to see I had a sense of humor about it… Then we discussed how the purpose of the question is to see if I have realistic expectations. In other words, for people like me, being pain-free may just not be realistic. That was enlightening for me. I honestly had not thought about it in those terms… I love my pain doctor. I feel like I can be completely honest and I am not judged… Everyone should be so lucky… Yes, I take pain meds. I am not ashamed nor am I hesitant to admit it. They allow me to be functional. I work 60-80 hour/weeks. I have 3 very active children(10, 13, 16) that keep me on my toes. I am very involved in their lives coaching, chaperoning, driving them around… I have good days, I have bad days and I have days when I am so achy, it feels like my very soul aches… BUT I have never missed a day of work, I have never missed one of my kids events… That is important to me. So I plug away and do whatever it takes to be ME. I refuse to let RA have that…
That’s very impressive and I know it’s quite an accomplishment. It proves out what I’ve seen before – that we tend to be fighters and most of us do the most that we can each day in spite of the evil RA. Pain relief, whether we like it or not, for most of us will be a part of that.
Thanks for commenting. We love the refuse to lose attitude & I think we even have a men’s tshirt with that on it!
Hi, I just emailed you my pain post:) Sorry it’s last-minute, been out of town & trying to finish it for you! http://myuiiblog.blogspot.com/2011/08/pain-relief-reality-for-chronic-pain.html
I just read this article on NSAID safety for RA and OA. Here is an excerpt that discusses one rheumatologist’s approach to managing chronic pain in RA and OA. It is worth reading the whole article for discussion of risk of NSAIDs, and it even (gulp!) mentions some in-the-pipeline DMARDs for treating OA pain (they are Nerve Growth Inhibitors)!
“A General Approach to Managing Chronic Pain
Medscape: In light of current knowledge, how would you advise physicians who need to prescribe pain medication for arthritis patients?
Dr. Solomon: Nonpharmacologic methods are the first line for several forms of arthritis. They include physical therapy, injections, heat, or cold. Assistive devices are worth considering. I would consider bracing for knee osteoarthritis, when there are deformities amenable to shifting the load. A cane can also be considered at first line, but it meets with some patient resistance. You can get into acupuncture or meditation, and many other nonpharmacologic therapies, but most patients are not interested in such treatments.
Low- to high-dose acetaminophen would be second line, and topical NSAIDs in combination with acetaminophen as third line. Oral NSAIDs at low to high doses with or without acetaminophen are next. Then, low potency opioids and adjunctive analgesics (tricyclic antidepressants, anticonvulsants, serotonin-norepinephrine reuptake inhibitors) as next line. These can be used in combination with acetaminophen and NSAIDs if necessary, but the total acetaminophen daily dosage must be considered. At some point the conversation has to be about joint replacement for someone with severe osteoarthritis.
” http://www.medscape.com/viewarticle/748508_print
Unfortunately he didn’t get into discussion of the narcotics and when/how to use those but that’s not the main focus of the article.
I post it in part to help bring up more discussion of NSAIDs. I do wish he’d discussed the half lives of various NSAIDs. I think for the younger ones of us out here who don’t have the higher cardiovascular risk profile, who can tolerate them and are willing to accept some of the risk so as to get the benefit of better daily functioning through less pain and aren’t ready to go to narcotics, the discussion of the various NSAIDs which might be more helpful has been a neglected topic in visits with our doctors. That is my personal view at this time anyway. I can’t tell you how much better I do on Meloxicam than on prescription strength Ibuprofen, because the latter wears off too fast for me. I do take tylenol arthritis on an as needed basis, but not daily. One thing I don’t see is patients posting about the various NSAIDs they’ve tried and how those have worked for them, and I get the impression it’s because they are just doing over the counter NSAIDs or the shorter acting ones and have never tried any of the others to see if another NSAID might help control their pain to a greater degree….
While I have had a rheumatologist since 2002 who treats my RA and an internal medicine doctor for everything else, I finally went to a pain specialist in 2008 for the chronic pain. This specialist is a member of an orthopaedic practice. He prescribed Kadian for me with Vicodin for breakthrough pain. It took two years to get the dose right, but now I am often pain-free.
After reading more of the postings on this site, I would like to add this: By the time my RA was diagnosed, it was quite advanced and I was a candidate for replacement of both knees and hips which I have, to date avoided. I have had two spinal fusions and a kidney removed for cancer. I am in my early 60s. I push myself every day to accomplish as much as I can. When I have to rest, I often knit to be somehow still productive. I disliked the thought of narcotics but after using every NSAID out there for years, my blood pressure started to go up and I had to find an alternative to NSAIDs. The narcotics were the only possibility.
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I also have RA and feel as if I am trapped in a complete nightmare..I have a full time job. I seem to be allergic to the biologic and have really bad flares and pain I do take pain meds It helps me with daily things like taking a shower getting dressed walking the dog I just don’t want the RA to force me into retiring and quiting my job and my life..without the pain meds,I would have no life..My fear is that I will end up bed ridden and I in pain..For those who need pain meds,and cannot get them ..how about a lawyer..Isn’t a doctor creating harm when he or she does not prescribe pain meds when desperately needed? Our society needs,to go after the people that use pain meds illegally and stop going after the sick and the weak..