Pain management?

General
1

So, I have another question for you all, since you have been very helpful these past few weeks. Thank you. Now I know every state has diff laws regarding pain management, and sadly I live in the pain pill capital, Florida. So pain pills are looked down upon, as you're a "junkie" for wanting to take them to relieve the pain. Have any of you been prescribed pain pills before for Lupus, or whatever auto immune disease? If so, what kind, dosage, etc? I was prescribed vicodine 10/500, and Percocet 5/325. I have some left cause I only take them if needed, but with the prednisone I'm also on (20 -40mg a day), it makes me nervous for my kidneys and liver. I was thinking of asking for a pain pill without the aspirin in it, but I am not sure "how normal" that is. And like I said, it might be a battle since people down here have used and abused pain pills, and now FL has over corrected. IDK, I guess I'm just sick of the pain, but worried for long term effects on my organs that are all ready screwed up. I know how addictive the pills can be, but I'm willing to take the risk for at least a little while, so I can do the little I can do still. Thanks for any reply, advice, personal stories, etc. :)

Oh, and if anyone is in FL, and knows the best way to talk to your doc about pain mngt and not getting "judged" down here, or whatever, be helpful. :)

2

I take Meloxicam for my pain, and it helps me. I took Hydrocodone after my foot surgery,and did nothing but sleep,sleep, and more sleep. I hope you get some good suggestions to help you out on your discussion, thanks for posting this....

3

Thanks Trish. I was on meloxicam for a few days too, but my rheumy took me off it saying my flare is too bad right now and taking that is doing nothing. Which I agreed with cause I didn't feel any diff taking it or not. I actually have a high tolerance for pain meds too, which makes it even harder/more dangerous with the acetaminophen. I have to take at least 20/30mg of vicoden to even feel a slight difference. Idk why I have a high tolerance, but have my while life. So trying to explain that to a doc is never fun either, cause it's a hard discussion to not look like a pill head, especially to all the new docs I'm seeing. Ugh. I just wish the prednisone took away all the pain without me having to worry about the mg I'm taking daily, and my organs future. I like living overall... hehe. :)

4

Have you taken cymbalta or lyrica for pain? I'm taking Savella for my fibromyalgia, and its really helping me now. Just something to think about..

5

No I haven't tried those, but I'll definitely bring it up to my doc on Tuesday. Can they prescribe those without a full diagnoses yet?

6

I am taking neurontin for the nerve pain and my primary cAre prescribes me MS Contin, which I take twice a day and I also have dilaudid for break through pain. I started these when my only diagnosis was fibro but I have since been diagnosed with MTCD. I went to pain management and the only thing he suggested was an epidural to possibly help with the rib pain. However, I went to the rheumy last week and she gave me injections directly into the area of my ribs that was hurting the most and I have had just a smidgen of pain in that area since so I am going to forego the epidural for now. I literally would not be able to function without the pain medicine. I am well a aware that any opiate pain med can cause physical dependence (which is different than addiction) but if I ever get to a point where I feel better, I can slowly reduce off the MS Contin with the help of my doc and I will be fine. It is hard to ask for pain mess without looking like a drug seeker (or that’s what we think.) when I approached my doc about it, I had done my research so we had a conversation about it and made the decision together. But I have a great primary care- I make most of my own decisions with his input. I only remember one time when that didn’t happen and it was be ause I felt so bad that day that I didn’t feel capable of processing the info or of making a decision.

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Ok. Thanks MBPP. That's good to know that it is possible to receive pain management because IDK if some days I could even tolerate being awake without taking the hydrocodone. But again, I feel like that is the wrong choice with all the acetaminophen in it on top of the prednisone. Thanks for your input. Out of curiosity though, what mg of each are you prescribed? You don't have to answer if you don't want too, I am just trying to get as much info as possible about anything and everything before my next doc appt, since this is the first time seeing this doctor. :)

8

I’ve take gabapentin for neuropathy pain, tramadol evey couple of hours to take the edge of pleurisy and joint pain and 30 mlg extended release morphine for my bone pain(bone marrow edma)and / multiple cartilage/tissue tears. . I too was very weary of starting narcotics and becoming dependant , it’s a scary prospect. . My rheumatologist prescribes all the above. she’s very aware and understanding of how much swollen bone marrow hurts especially when I’m bearing weight on it , thus the morphine but I do limit it to every other day so I don’t build a tolerance. The pain meds with Tylenol can affect you liver and kidneys but meds like morphine dry you up like a dessert!!tthat’s another reason I have to limit my usage. . I live in Florida too so it is hard not to feel stigmatized by the opiate epidemic here but we are legitimately ill and need this medicine’s to have a quality of life not to get high and party lol! Hope you find the right pain relief soon xoxoxo

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30 mg MS Contin twice a day; 2 mg dilaudid prn for breakthrough pain (I rarely need this- I got 60 pills in May and have about 40 left); 1000 mg neurontin (gabapentin)3 x day; also zanaflex (muscle relaxer) 3 x day (4mg), Zoloft, remeron, synthroid. I started taking all these before my MCTD diagnosis when I was “only” diagnosed with fibromyalgia. One thing I did do when I was asking my doc about pain medicine was not to get too specifics (I.e., can you give me oxycodone?) because I think that sets off more alarms than a question like “I have read that there are long acting pain meds. Can we talk about that?” (which is pretty much how I approached my doc.) I would also express your very real concern about taking meds long term that have acetaminophen in them. We are fighting enough crap without taking something that we know causes liver damage if taken long term. I live in Alabama and the laws regarding pain management are bad here too. But I think it is the new federal laws that are driving most of that. In fact, my PCP told me that there are even stricter laws that were just passed and that those who prescribe pain meds are going to have to do more and be under more scrutiny (he didnt even known all the details yet.) Thus, there are probably going to be even fewer docs (outside of pain management) that will prescribe pain meds long term for chronic pain. I am lucky to have a very caring and compassionate primary care who will continue to prescribe these meds so I don’t have to go back to pain management. I wasn’t too crazy about the pain management doc. If you have any other questions, please let me know. Hugs, MB



Nic961 said:

Ok. Thanks MBPP. That’s good to know that it is possible to receive pain management because IDK if some days I could even tolerate being awake without taking the hydrocodone. But again, I feel like that is the wrong choice with all the acetaminophen in it on top of the prednisone. Thanks for your input. Out of curiosity though, what mg of each are you prescribed? You don’t have to answer if you don’t want too, I am just trying to get as much info as possible about anything and everything before my next doc appt, since this is the first time seeing this doctor. :slight_smile:

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Thank you for your post. I don’t live in Florida, but I’m anxious to read the replies you receive as I, too, am in a similar situation as yourself. Good luck to you!

11

It depends on the doctor. Those who truly get lupus or specialize in it have encouraged me over the years to take pain pills and know that those who truly need them aren’t “junkies.” If you really need it, then it does its job of working to lessen the pain with nothing left over to give you a buzz. I have taken hydorcodone type meds PRN for 20 years and have not had to increase the dose. In fact, I’ve been able to decrease it. The doctors do have to document more now by law, but they can spot if someone is abusing it or taking it legitimately. I was on Vicodin 5/500 up until a few years ago when they switched me to Norco 5/325, which has less acetaminophen. The narcotics are safer in the long run than the OTC meds with regard to liver and kidney damage. Also had one doc want to switch me to morphine a couple years ago, but I declined and the current doc says for my particular case 3-4 Norco PRN per day is fine. I’ve gotten to a point now (after a year on Benlysta infusions) that i cut the pills and only have to take a half pill to alleviate the pain. It’s hard not to let the stigma get to you when so many people are abusing it and making it harder for those of us who actually need the medication legitimately.

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Ok. Yea, I figured going in there on Tuesday, I'd have to pick my words carefully. If you're informed, you must be looking for a fix.... at least that's the feeling I get. I am def thinking of starting with my liver, kidney, and actemtaphine concerns, and go from there. Only thing I figured may also release me from "junkie" or its in your head status, is that I still have very visible physical symptoms happening, which sucks that it has to be that way, but I guess it's just a piece if mind for the docs? I don't know a few the meds mentioned, but I will be looking them up soon.

Dr. Schimpff sounds nice, but too far from me. I'm in Lakeland, which is between Tampa and Orlando... nearly dead center of the state. :) Thanks for the doc suggestion though.

Lastly today, IDK if people have diff feelings about this, but recently I have began also smoking some "green" again to alleviate the pain. Has anyone else done this and noticed it helped? I think it makes a big diff, especially at night.. helps with the bad insomnia/sleep patterns I've developed over the past 6week ish too. Only down side is hunger on top of steroid hunger... Haha. Trying not to gain too much weight eating and not being able to move much, but one problem at a time I guess, and pain out weighs the rest at this point. Hopefully it will be at least medically legal in FL next year...

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I'm new to this site and also to Lupus. I have been diagnosed with fibromyalgia and now have been surprised with a diagnosis of Lupus. I have a lot of body pain, especially at night. The pain can be tolerated at times but can become unbearable at times, especially at night. By the way, I too live in Florida. At this time I'm taking meloxicam, Neurontin, Plaquenil and Norco (two daily) which I save and take at night so I can sleep. That is all I'm allowed. I have to just manage to tolerate the muscle and deep bone pain when I can't get relief from the meds I take. I'm so thankful I have a husband who is very patience with me and helps me when I'm unable to do my housework. Lately I have been having balance problems along with tendency to drop things. Does anyone else have these problems?

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Oh, Nic, how I wish the “green” was legal here but I must caution you about using it if you are on pain meds. I went to st. Croix in June to visit my sister and a friend of hers (who has RA) had made me some “green” cookies. While I was there I felt better than I have for years. I slept better, had more energy and way less pain. When I got back, I told my PCP. He told me that he wasn’t going to put it in my chart but that if I tested positive on a random urine screen, he would be banned from prescribing me pain meds for life (oh, s***!) I had to do a drug test for pain management when I went for my first appt on August 1 and I was sweating it despite the fact that my PCP told me I should be fine. I was fine but I shudder to think of being banned from taking meds that make it possible me to function. And I mean that literally. Last summer, I could barely go to the bathroom I was so tired and in so much pain. Once I got some pain meds, I was able to get up and tolerate physical activity which led to improved energy (though not nearly what I was before I was sick and not nearly as much as I would like.) So if you want to go the route of asking your doc about pain meds or going to pain management, i would wait for a month or two after the last time you had any " green". There is one type of marijuana that is available in pill form, Marinol (sp?) but I believe it is only approved for chemo and AIDS patients. I am not sure how the pain management rules re: random drug screens would be different in states where marijuana and / or medical marijuana is legal- would you only be banned if you didn’t have a prescription for MM? What about the states where marijuana is legal to everyone like Colorado? IDK but I am thinking that Colorado would probably be home to a
Lot more lupus, fibro, RA, etc patients if it wasn’t so dang cold there. LOL hugs, MB

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I live in Oregon ,so I have a card to go to the dispensary,but I don’t like to smoke it,they do have a nice roll on pain reliever made out of the whole plant,roots and all,and I love the candy,I sleep better,the lemon drops and the pineapple suckers are really good…I don’t like any of the baked goods,like the brownies or rice Krispy treats,because I’m not fond of the after taste…I cough alot,due to my heart issues and asthma,smoking it,really is not an option for me…Im all for what gets you through,Im not here to judge anyone,we are all trying to find a way to deal with our lupus…So whatever works…

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Hmmmm.... didn't think of the drug test for pain meds. Well, I guess I shall have to just be honest with my pcp and if green is a problem, I'll have to go from there. Stupid laws. I can drink myself into a coma to sleep "normally", but God forbid I use something natural. Whatever. I think I will move to Colorado....Haha. Well, me and my boyfriend were suppose to go to CO this past summer (he has fam there), and then all this crap really started up. So who knows, we both despise FL... it could be a real option. :) Cold or not, I'd rather be out of this FL Sun, and intelligence levels. Haha. And def be nice to have more options than just smoking.

Misty, yes I have the balance problems too. Half the time I do walk, the phrase "uh oh, falling over" comes out. I then am hopefully close enough to a wall or something or grab onto. I haven't completely fell yet and hope to not too, but it's a weird feeling. I also try to make a joke out of it, or I'd think I'd be crying. Haha. As my boyfriend says "She weebles, and she wobbles, but she don't fall over." :) I wish I knew more as to why, but hopefully know more after my pcp appt tomorrow. :)

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Nic961, I don't mean to discourage you but I started out the same way. Now I fall without warning, so I stay close to something so I can try to prevent this. It seems like my head likes the floor better than I do. HaHa.

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I have had lupus for nearly 15 Years. Started with plaquenil, added Neurontin but switched to Lyrica. Take low dose Cymbalta and Ultram. A year ago I added methotrexate, these combinations have worked mostly. I have a great rheumatologist. I am also sure to have a list of any questions or concerns when I go to see her quarterly. I also get blood work every 2 months. B e diligent.

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Hi, be careful??? Keep taking the pills Only when you can’t handle the Serious pain!! Also try a time out rest break, which I call it -a power nap/moment, it helps to shutdown for about 30mins or a hour to regroup with yourself!..Beverly L.

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Thanks for all the advice everyone has given me about the pain, falling, and meds. :)

Misty.... well that sucks. To put it bluntly. :) Hopefully we both can somewhat keep our balance in the years to come! I use a cane whenever I go out to help with my walkling and balance. Which it does help, but I'm only 27, and look barely 21 (I get I'D for everything... sometimes even R rated movies. Lol), so a lot of people stare, or assume I hurt myself ("So, how'd you hurt your leg?"), Or just ask me what's wrong. I appreciate the concern, I guess, but it sure makes even grocery shopping a pain having to talk to everyone, and then get the pity eyes and moan. "Aaawwww, you poor thing." Blegh. Whatever, I'm just not used to it... oh and I just got my handicapped parking pass for my car this week, so close parking is awesome! Well, if there's a spot available in FL... a lot of elderly. Haha.

Ann... I will def check into that. I have low a lot of stuff, even when I was "healthy", I was never able to donate blood. Ever. Tried like 5 separate times between the ages of 17 and 22. I gave up, though, sadly. So, I'm sure my vitamin D is low. Maybe I'll just go buy a bottle of them today?... Do you know if I don't need them, if it will hurt me?

Rose... thank you for letting me know. :) I'm trying to be as informed as possible.

Beverly.... oh I def do take my power naps, probably too often at this point. I am on Celexa for depression, and I think it's working, but the PCP doc on Tuesday was concerned my over sleeping maybe the lupus making a different type of depression, or more severe? Idk... I'm keeping my dose the same for now and really monitoring myself on how I feel, how I sleep (or don't sleep), and food intake. I've gained like 10lbs since mid July. I'm still thin, but I don't want to gain too much more. Haha.

Nic out! :-D

P.S. Sorry for the novel.... hehe. :)