Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
i'm starting to question so much about my rheumatoid disease. i see how many people are on painkillers, and not just like a little. it seems like everyone has back up painkillers on hand. everyone but me.
i normally rate my pain between 6-8 when i fill out that damn rapid assessment thing at the rheumy's office. i felt like i had to convince her to sign off on a temporary handicapped parking permit (which i was not happy about doing, but parking at my school is horrifying). i've tried taking two aleve, two advil, or two acetaminophen tablets and they barely take the edge off. i only do that on the worst days, when taking the edge off is better than nothing.
and just to remind everyone of my new favorite thing (i'm planning on bringing a printout of this to my appointment next week so the rheumy knows where i'm at) here's the pain scale i use:
0 - Pain Free
1 - Very minor annoyance - occasional minor twinges. No medication needed.
2 - Minor Annoyance - occasional strong twinges. No medication needed.
3 - Annoying enough to be distracting. Mild painkillers take care of it. (Aspirin, Ibuprofen.)
4 - Can be ignored if you are really involved in your work, but still distracting. Mild painkillers remove pain for 3-4 hours.
5 - Cant be ignored for more than 30 minutes. Mild painkillers ameliorate pain for 3-4 hours.
6 - Cant be ignored for any length of time, but you can still go to work and participate in social activities. Stronger painkillers (Codeine, narcotics) reduce pain for 3-4 hours.
7 - Makes it difficult to concentrate, interferes with sleep. You can still function with effort. Stronger painkillers are only partially effective.
8 - Physical activity severely limited. You can read and converse with effort. Nausea and dizziness set in as factors of pain.
9 - Unable to speak. Crying out or moaning uncontrollably - near delirium.
10 - Unconscious. Pain makes you pass out.
right now, i'm on the couch with my feet up, typing and trying not to cough because it hurts. i'd say i'm a 6 in most active joints (wrists/hands, hips, shoulders, ankles) but i don't now if painkillers reduce the pain. there are times when i hit an 8 during the day, where it is very hard for me to focus on things for short periods of time.
but even this pain list - a 6 says narcotics can help. i don't bother taking anything because nothing helps. i don't know why i'm rambling now. i just feel like maybe it's not as bad as i think it is because i don't need narcotics to function, i just deal with the pain. i generally think i have a fairly high tolerance for pain because of other resolved health issues i've had. plus i can get tattooed and it doesn't phase me; i can have conversations or whatever while i'm in the chair. is that it? my sort of high pain tolerance?
i normally rate my pain between 6-8 when i fill out that damn rapid assessment thing at the rheumy's office. i felt like i had to convince her to sign off on a temporary handicapped parking permit (which i was not happy about doing, but parking at my school is horrifying). i've tried taking two aleve, two advil, or two acetaminophen tablets and they barely take the edge off. i only do that on the worst days, when taking the edge off is better than nothing.
and just to remind everyone of my new favorite thing (i'm planning on bringing a printout of this to my appointment next week so the rheumy knows where i'm at) here's the pain scale i use:
0 - Pain Free
1 - Very minor annoyance - occasional minor twinges. No medication needed.
2 - Minor Annoyance - occasional strong twinges. No medication needed.
3 - Annoying enough to be distracting. Mild painkillers take care of it. (Aspirin, Ibuprofen.)
4 - Can be ignored if you are really involved in your work, but still distracting. Mild painkillers remove pain for 3-4 hours.
5 - Cant be ignored for more than 30 minutes. Mild painkillers ameliorate pain for 3-4 hours.
6 - Cant be ignored for any length of time, but you can still go to work and participate in social activities. Stronger painkillers (Codeine, narcotics) reduce pain for 3-4 hours.
7 - Makes it difficult to concentrate, interferes with sleep. You can still function with effort. Stronger painkillers are only partially effective.
8 - Physical activity severely limited. You can read and converse with effort. Nausea and dizziness set in as factors of pain.
9 - Unable to speak. Crying out or moaning uncontrollably - near delirium.
10 - Unconscious. Pain makes you pass out.
right now, i'm on the couch with my feet up, typing and trying not to cough because it hurts. i'd say i'm a 6 in most active joints (wrists/hands, hips, shoulders, ankles) but i don't now if painkillers reduce the pain. there are times when i hit an 8 during the day, where it is very hard for me to focus on things for short periods of time.
but even this pain list - a 6 says narcotics can help. i don't bother taking anything because nothing helps. i don't know why i'm rambling now. i just feel like maybe it's not as bad as i think it is because i don't need narcotics to function, i just deal with the pain. i generally think i have a fairly high tolerance for pain because of other resolved health issues i've had. plus i can get tattooed and it doesn't phase me; i can have conversations or whatever while i'm in the chair. is that it? my sort of high pain tolerance?
Thank god this is in the past. I'm now on a biologic and mostly pain free!
Hope you get the right meds to be able to control your RA and your pain!
It's so subjective. And honestly, if I had a doctor who was so reluctant to prescribe pain medicine, I'm sure she has exaggerations to her scale..thus making HER scale irrelevant except for obtaining pain medicine.
My doctor doesn't prescribe much pain wise beyond Mobic, but I find it to be a really good Nsaid.
Best of luck!
I have no problem and no apologies taking the med. It helps more than not taking it. My rheumatologist didn't offer pain meds at all, even when I teared up in office during a flare. I finally told her I wanted to see a pain mgt doc, and asked her opinion. She stated it was a good choice and she gave me a script for pain meds to last until I got into the pain doc. I was surprised! Then the pain doc said I have a valid disease that approves the use of pain meds. He's warned me on the dangers of over taking and that a tolerance will occur if I use it daily.
My goal, get off the pred asap, and if my current treatment isn't helping enough which i think it isn't, switch to a biologic. Then get off the pain meds. Pain meds are no biggie to me in the short term, prednisone is worse for our body and my priority. I've been on pred since October :'(
My pain mgt doc needed my rheumys last notes to confirm my current treatment and diagnosis. I couldn't just waltz into a pain doc and said gimme meds lol. That would have been easier, but I had to clear the red tape of getting the rheumys office to actually send the proper info over. After that, it was a piece of cake.
I suggest begin pain mgt if you think you are not well controlled. It took a while for me to feel ok doing it. The stigma behind it and preconceived notions of narcotic users made me feel guilty and wrong wanting to ask for help. I'm past that and ready to get my life back. Goal, 90% of what it once was. Current, 40-45% of what it once was. It's a good idea to look at where you are and see if pain mgt is right for you. I'm not on oxycontin or fentanyl or anything considered schedule 2 narcotics. Never needing pain mgt before, those big gun drugs are scary, to me at least. As of now I'm on a regular schedule 3 and it helps, enough, for now.
Good luck with your next appointment. I hope you get some relief soon.
From a personal perspective, if you come up with your own pain scale, no other medical professionals will truly understand your parameters.
If your physician passed along your pain scale number, he/she would have to send your own personal pain scale with it to have any real meaning.
May I perhaps suggest that you pick a pain scale that you like and utilize this. Listed below is the "Hochman Pain Scale". Therefore, if your physician passed along your pain, he/she could state, "Miss Stephgas reports a pain rating of seven using the Hochman scale."
I hope this makes sense. Listed below is the Hochman pain scale:
"The Hochman scale is a definite improvement over the VAS in chronic pain patient populations. The Hochman scale is as follows:
0 No pain
1 Occasional pain effectively managed by Aspirin, Tylenol, Ibuprofen, one tablet, three times a day or less - or by opioids with no limitations on activities of daily living
2 Frequent pain, managed only by 1 or more tablets of ASA, acetaminophen, ibuprofen, every four hours - or by opioids with slight impairments of activities of daily living
3 Frequent pain, not effectively managed by NSAIDs, requiring an opioid medication, with mild restrictions on activities of daily living
4 Frequent pain, moderately affecting activities of daily living, but still controlled by opioid medications
5 Frequent or almost constant pain. Contained by opioids, but still causing significant limitations on activities of daily living and occasionally causing the patient to be house or bed confined
6 Constant pain, moderately contained by opioids, but with frequent limitations of activities of daily living. Frequently causes confinement to bed or the house.
7 Constant pain. only partially contained by opioids at the doses prescribed. with continuous limitation of activities of daily living
8 Constant pain, frequently disabling, making most activities of daily living difficult if at all possible
9 Constant pain, uncontained by prescribed medications and doses, completely disabling of activities of daily living, requiring interventions or assistance by others, preventing any form of employment and fully qualifying the patient for Social Security Disability
10 Intolerable pain requiring emergency room treatment, generally with opioid injections"
Reference: http://cme.dannemiller.com/articles/activity.cfm?id=318.
Sincerely,
TheWino
i just feel like nothing has been good since i was diagnosed. yes, i have good times. but i feel like i never really have good days. i'm always in pain, i'm almost always tired, i'm usually aggravated or frustrated, and i mostly just can't take it any longer. on top of that, this stupid cold that is lingering (day 4) is pissing me off. it's like not becoming enough of a cold for anyone to care (no fever, not moving down into my lungs, not moving out into my ears or sinuses) but it's enough to make it hard to function. i sometimes feel like taking some of my hoarded narcotics just to sleep and pass the time peacefully.