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Discussion:
Do you take narcotic pain meds?
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For your RA? And if so, for what specifically?

This might seem like a strange question, but I am just dumbfounded.

A few years ago, I had a shoulder impingement. It was BAD. And having 3 little ones and no ability to get surgery (though I did have the cortisone shots) the orthopod I saw put me on hydrocodone and meloxicam (ibuprofen/nsaid). 5mg hydrocodone was not enough so he pushed it up to 7.5mg. The impingement gradually got better on its own and he moved me back to 5mg (4x per day as needed).

Long story short, I have essentially been taking narcotic pain relievers since 2007, minus the time I was pregnant with my daughter.

In a day and age where this is such a taboo topic, I feel a little skeevy even talking about it..... but I know that's because of the people out there who have abused these medications and the stigma these meds now carry.

Anyway, the thing with the narcotic pain relievers: THEY HELP ME!! I do not get "high" off them, I don't get dizzy/sleepy (except for maybe the first day of taking them?) They are effective for me and they work. They help me get around without feeling achy. Even though I no longer have the shoulder impingement... the "RA" makes me achy ALL THE TIME. I used to think it was fibromyalgia, but regardless, for me, these drugs WORK. They help me tremendously.

Since I no longer had a shoulder impingement, I was referred to a pain management doctor in my orthopod's practice. She has tried everything from lyrica to electrical shock/stimulation. Almost ALL of what she wants me to try freaks me out or I can't do it for one reason or another (for instance NSAIDS, apart from otc ibuprofen, don't mix well with me). This electrical stimulation... NO. I'm sorry, NO. I feel that THOSE methods are far less conservative than pain meds. But, because I live in a state where pill mills and addiction to these drugs is an epidemic, I think its caused doctors to shy away from these meds. And this doctor is like, anti-pain meds (mind you, she is pain management!!) She currently has me on a prescription of hydrocodone 5mg, up to TWICE per day. That's it. I told her it helps me more to take it 3-4 times per day. She refuses. I'd like to switch doctors, but then I worry I'd be seen as "doctor shopping?"

My rheumatologist said (at my last appointment) that she would have no problem prescribing them, but for whatever reason, FL is now not allowing her (or rheumys in general?) to prescribe narcotics??

Anyway... I guess this is a "question/vent/advice needed" ramble instead of just a flat out question. Sorry about that. Anyway, do you take pain meds for your rheum? And is it for a specific area or is it for the achiness in general?
Posted on 01/10/12, 01:00 pm
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Reply #11 - 01/11/12  1:15am
" Like ncgranny, I have them on hand should I be in such pain that nothing else works. my Rheumatologist prescribes them but one packet may last me for months. For general achiness I don't take it.

You haven't mentioned any RA meds but I'm presuming your Rheumy has you on a treatment program for RA. "
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Reply #12 - 01/11/12  1:44am
" I don't take pain meds for RA, because they do not control the disease, just cover up the pain. Pain is the warning sign of the body. My advice is to get on the meds the doc has given you, and don't be afraid to ask for more. If you have severe RA, the damage will be much greater than if you went on the right meds as soon as possible.

I spent 3 years being undiagnosed and then another 5 on low meds, and I had to have my foot reconstructed it was so deformed. I just wish I had been given the biologics sooner, as they gave me my life back. "
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Reply #13 - 01/11/12  1:50am
" I agree with Holee. For all the research I have done, pot seems like the best choice for me. The risks are all but non-existant, and the research solid. I am not there yet, but living on Vancouver Island it is even a socially acceptable choice. "
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Reply #14 - 01/11/12  2:51pm
" I also take narcotic pain meds- right now it's hydrocodone 7.5, one or two pills at a time. I limit myself to two doses per day, but the bottle says I can take it every six hours. My rheumy prescribes them and has no problem doing so. I'm also on MTX, plaquenil and Orencia. I think the Orencia is starting to work, because I am having more days where I can get away with one dose per day. I have non-RA pain issues as well, and take Lyrica for that. I live in a state that has medical marijuana laws, and I do occasionally smoke pot, mostly to help with sleep. I was concerned that taking painkillers would diminish my ability to tell when I was flaring and when I was getting better, but my doc doesn't think that's a problem (for one thing, hydrocodone doesn't affect the visible swelling I get). I still work close to full time, and most days I wouldn't be able to do that or do my usual household stuff, like cooking meals and cleaning, without any painkiller. I also know that if I go without sleep, my pain the next day will be magnified, so I give myself permission to take a painkiller if pain is keeping me awake. One suggestion for you: does your rheumy have contact with your pain specialist? If not, you could ask for them to talk to each other. If your rheumy knows you well and thinks your risk of addiction is low (based on your current responsible use of narcotics), she can pass that on to the pain specialist. That might make the pain specialist more willing to prescribe the dose you need. "
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Reply #15 - 01/11/12  5:29pm
" I tried vicodin but couldn't handle it. Made me wired, couldn't sleep. slow release oxycontin worked pretty well but I built up a tolerance. I prefer medical mj now. I used to think it just made me forget about the pain but I think it does that AND actually helps with the pain. "
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Reply #16 - 01/12/12  11:10am
" As far as RA meds go..... I have been very, VERY hesitant to take them. And for several months now I have been just hoping that the issues I have will just magically go away, or at least lessen. And that hasn't happened. My doc wanted to prescribe methotrexate. I did my research on it and I'm sorry, I cannot... just CANNOT bring myself to take that poison, regardless of the benefit. The side effects are just too vast and it freaks me out. My rheumy put me on plaquenil. She gave it to me like 2 months ago and I've stared at the bottle every single day. I finally started taking it just yesterday, because the pain has gotten to that point that I know if I don't start taking it now, who knows how bad it can be 1, 2, 3 months down the line. I am scared, admittedly. I lost a LOT of weight in the past year (diet and exercise) but, consequently, I also lost a lot of hair. My hair (the one thing I loved about myself, despite my previous size) used to be thick, straight, and it was beautiful. Now it is significantly thinner. Not enough that people are saying anything... and my hubby swears he doesn't see what I'm talking about, but I KNOW it has thinned significantly. If it thins any more, it WILL become noticeable to others. And I'm worried about the plaquenil doing this to me. But it's a chance I have to take I guess.

So the answer: started taking plaquenil, but just very recently. "
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Reply #17 - 01/12/12  11:35am
" I'm in pain management. Although I was in PM before I was DXed with RA. I have spinal problems, DDD, cervical fusion & lumbar & facet joint problems. I also have muscle, myofascial damage & neuropathy.

As my RA would say I'm complicated,LOL. I feel complicated.
RA being on the new side its hard to say much about the meds. I do know I am learning the difference between which pain is which.

My RA is starting to blame the RA though for certain things & that concerns me. As Ive had this yrs before the RA & don't want to get the problems confused as that will cause problems with treatments.

I do believe the pain meds held off the DX of RA. Only the persistant swelling convinced my PM to send me to the RA doctor. Thank god it did as we caught it.
Ive been on all different meds, in part because of what insurance will & will not cover.

I know by now what works for one may not work for another so either way its starting somewhere & finding what will work best for you. If you can get a PM to prescribe. Its not just you or yours the government is getting involved with how narcotic meds are prescribed.

My PM explained the changes taking place to my husband & I. Thank god he was honest. This is driving some PMs out of practicing. They will be told more or less how they are expected to treat patients. Such as long acting meds over short acting. Which can run into problems. Such as in my case. our last insurance covered only one long acting & I had reactions to anything above a very small dosage.

The pain meds do not cover the RA pain alone, I do know that.
In fact they do not take away the pain completely & this is true for most CPers. We are taught not to expect it & the meds are used to bring the pain level down to a level in which we can function. We also know this is just a bandaide.

Now I think doctors are fearful with the liver risks.
With me I require what they call a cocktail, pain med, muscle relaxer & anti inflammatory. The injections for my spine, ESIs & nerve blocks give me the most relief.

Added to that is now the RA meds. My PM retired last month. Loved that man & built a trust with him that took yrs. Now I will start over again with one of his younger partners.

To be honest I have no clue how he will react to my DX of RA & the meds. He is young & much more apprehensive. Wont see him til Feb & I am praying here he does not push me away out of fear.

I know the meds help some with the RA & I thank god I have them. I would rather not take them but I want some quality of life.
Ive learned you have to advocate for yourself. With narcotic therapy you have to earn trust & that takes time. There are non narcotic meds that many claim help. My sister was on one for her RA, which she has had for over 40 yrs. She cannot take most medications due to complex medical conditions & back then the meds were not out to treat RA like we have now.

Ive rambled on but I hope you get something out of this.
God bless & good luck, Sammy "
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Reply #18 - 01/12/12  11:55am
" I too was afraid of mtx mrscrabby but like yourself got alot worse and after seeing how much I declined in 1 year, I changed my mind! it is your choice but keep in mind that any damage done is irreversable. treating the disease from the onset and aggressively is what Ive learned to be important.and the question I had to ask myself was if taking the chance and having quality of life better than the option of living painfully in a crippling life? only you can make that choice. Im sure most of us on this site has felt the same emotions as you. hope you feel better. and as for pain killers, I feel the same way as treating my disease,if I need it for pain during those nasty times that I want to cry...you betcha..finally found one after many that works. I wish I could do the pot thing since it is known to not be harmfull, but honestly, I tryed it years ago and it made me more weird than I already am ! like loopy feeling. and you are so right about the abuse of certain drugs, people have made it hard and taboo for the ones who really need it. I have a question, why are you more afraid of the mtx and plaquenel but not the painkillers? I realize the side affects seem worse and are all different but have you seen the side effects of Hydrocodone? "
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Reply #19 - 01/12/12  3:56pm
" Honey, your taking baby pain med. Thats where they started me. I can't say what my pain med. is now. Very stong! Thats how the ball bounces on pain meds. The lesser stops and they just increase as time goes on. I've learned living with this, no options, pain or relief! Best wishes at comfort and being pain free, as much as possible:) "
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Reply #20 - 01/12/12  4:18pm
" I just started MTX, I am also on SSZ. I have "Inflammatory Arthritis", OA and Secondary Fibro.
I have a long, long chronic pain history. In 2005 I was in a car accident that caused significant soft tissue damage around my brachial nerve plexus, an impingement in that same shoulder (but on MRI everything was so scarred up after a year that they couldn't tell if they needed to reconstruct the shoulder or not without going in), etc Before that (in 2003-2004)it was status migranosis for 6+ months before they got my migraine meds tweaked just right.
Anyway, before they finally diagnosed the impingement, I was taking 4 Vicodin a day just so I could work a very physically demanding job.

I have smoked pot with a friend who has MS, I must say, it really helped. I had a significant reduction in inflammation for 12 hours afterwards. Unfortunately, it isn't legal in my state. When it becomes legal, I will use it as needed.
In the last year, there have only been a handful of times that I truly needed narcotics, but didn't have them available. I was able to get the practice to call in Medrol or I had pred on hand from previous stuff, that I took, but had to wait things out until it kicked in.
I use Tramadol and Voltaren Gel regularly as needed and take Mobic daily. When this doesn't help, I add a low dose of tylenol.

I really recommend trying to get your condition managed medically. You will find that, in doing so, you can reduce the amount of narcotics you take and at the same time Decrease the amount of long term damage done.

I don't think there is anything wrong with narcotics taken reasonably to manage breakthrough pain. That is their purpose. Like you said, we aren't taking them to get high. Those drugs are only "fun" when you don't NEED them.
Although on really bad days, that "high" would be a relief from the horror that we go through.
I am an advocate for medical marijuana. Its metabolites do so much more than "take away pain", they are clinically shown to reduce systemic inflammation. I have no problem with our government taxing it reasonably. It is certainly cheaper than court costs, fines, or jail. And it isn't nearly as dangerous as alcohol. When I used it recreationally in college, the most I did was get "stuck to the couch" and giggle. Maybe a little paranoia, with quite a bit of peaking through the blinds when we could get off of thr couch. Helped migraines too! Just my two cents. However, until it is legal, I do not use it. "

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