Controversy over using narcotics for chronic pain

General
1

I'm pleased to announce that i've been feeling better after a very painful and challenging month. It's hard to know what's working and what's not when there's been more than 1 med change at once.

There's a couple of reasons for this discussion;

1-I need some advise

2-I want to share what seems to be working for me

Having taken almost every antidepressant out there because of my history with depression,I pretty much know what works for me and what doesn't. After I was diagnosed with fibro,my doctor wanted me to see my psychiatrist before starting me on Methylphenidate for CFS.Where I live,you don't get to choose your psychiatrist because there aren't many and i have no faith in mine....but what can you do?I educate myself the best I can and pretty much make the decisions whe it comes to my treatment.

While I was there,we reviewed the medications I was taking for depression. I take Wellbutrin for depression and Lamotrigine as an add on. (I haven't heard anyone mention this one so I'll explain) It's often used as a mood stabilizer or is added to an antidepressant for treatment resistant depression. Because of my current condition,the fatigue was overwhelming and so I wasn't sure if the lamotrigine was doing anything. So I asked him if I should continue taking it as I want to take as little meds as possible. He told me that "It doesn't really matter."(as he was eating his lunch and checking his cell phone...grrr)So I stopped taking it.

After my diagnosis my symptoms and pain skyrocketed and I just assumed that it was a combination of family stress and the stress of being diagnosed. It did cross my mind though that the lamotrigine might have something to do with it...fleeting thought though.

I make it a point to know exactly what it is that I am taking and Lamotrigine is an anticonvulsant drug.I googled Gabapenten and it ALSO in an anticonvulsant....so I looked into the off-label uses for lamotrigine and there it was....Management of NEUROPATHIC PAIN! I couldn't believe that my shrink didn't clue in to the possibility that this medication may have been helping my pain as well as my mood. So I called my pharmacist and she suggested that I go back on it gradually and see what happens. I'm not at my target dose yet so I don't want to speak too soon but I feel a difference.YAY!

I also take percocet during the day,not much,and I take Elavil20mgs at night. Like most doctors,my doctor is very strict with the percoct. And I understand why. But I broke down and added 1 more when my pain gets out of hand during the last 2 weeks. Not every day, but what ends up happening is when I'm in agony,I end up fighting with myself about whether or not to take an extra percocet because if I do,i'll end up short before my prescription is due to be filled.So I'm laying in my bed,all stressed out over the stupid percs! Why should I have to suffer?And if i choose to get pain relief now,I'll be screwed at the end of the week!

I've been doing a lot of reading on this subject...even in the NFA. Doctors can't distinguish between addiction and dependence. it's a real problem when something is working for you and just because it falls under the category of a narcotic,the doctors treat people who are suffering like addicts...it's demeaning!

I know it's a long story,but what i'm currently doing is working. I'm more active than I've been in months and I don't want to change anything. And if that means a slight increase in my percocets,the so be it!This is where i need advise. I know i'm not alone with this experience. I called my doctors office yesterday and asked the receptionist(who's known me for years,I love her) if she could ask my doctor to either see my or release my prescription early. I got an appointment for next week,but I didn't hear back about my meds. I'm nervous about approaching her on this subject because before I was diagnosed(by my internist who looks down on the use of narcotics...that's another story)I asked her for a TINY increase and she said no. All i'm asking for is a little head room so that I don't have to be stressing out when things get really bad.

Any feedback would be helpful. I also wanted to share that I'm taking a baby dose,5mg in the am and at noon for CFS and it was a little rough at first but it's given me back some energy and lifted my depression. I was suppose to increase to 10 but it was too much and made me edgy. It's not often we get to share good news and fatigue has been a recent topic of discussion....so YAY!

I think that's all for now (phew says the readers);

Thanks for reading and I hope everyone's having a great day. We're getting heavy rain today but it's warmed up and I can finally see the light of spring.:-)

Much Love and Hugs

Carolyn

2

um...fibro brain. I forgot to say which medication for CFS....baby dose of Methylphenidate(Ritalin) hehe

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When I started seeing my pain specialist, the first thing she wanted was me off the Vicodin. She informed me that the reason I was in pain was because of these pain meds. hmmm ok. But I know the reason I started taking them but I wanted to give it a try. I had cervical fusion done in 2007 and have continued to have issues with my neck since then. So I gradually got off them and I could tell as the weeks when on that it was not going good. I went from being able to at least get up and function to being in bed all day. I was off for a few weeks and it was a nightmare, my mom was so worried. I could just lay in bed and cry. I do take several other meds that are suppose to help with pain but it is just not enough. I went to my reg doctor in tears and she actually listened to me and gave me back my pain meds. I do not take more then 2 a day and any doctor that does not want to treat my pain with something that works, clearly does not live with chronic pain. I am writing this really fast, trying to get my daughter off to school. Sorry for any typos.

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hi. chronic pain started for me about 28 years ago and for most of that time i had been on narcotics till about one year ago. i was not feeling any benefit any longer( as narcs are not for long term use anyway) and i began doing a lot of research. Rebound pain is when the drug wears off( if it was even helping anymore) you have way more pain than you actually originally had . So it made no sense for me to keep taking narcs like 4 x a day and still in loads of pain. I weaned off them. As far as addiction and dependence i did much research on that as well. Dr. Paul Cheney who is a cfids( cfs/fm ) specialist wrote articles on this subject. He says that people who are taking narcs for legitimate, medical pain syndromes generally do NOT become addicted but may have a physical dependence which is much different. I never got high nor caught a buzz.,was only looking for pain relief.. A drug addict is one who will go to all lengths to get narcs and do almost anything. I take Vimpat daily whihc is an ant seizure drug for history of gran mal siezures and doc said it may also be helping with pain. i was also taking tramadol whihc did help some but my skin was very itchy for which i had to take bendryl. He told me to try it again after a break and see how my skin is. He told me that botox has been approved for head, neck and shoulder pain and asked me if i want to try it since nothing much works for me and i dont like taking pills. I will let you khow how that goes when i do it. I also go for physcial therapy. tens machine, ultasound massage and manual massage. i found a great therapist who llistens to me and does not hurt me. thats all for now and i am tired of typing .. lol. HUGGGGS

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Hello Carolyn

Maybe she could change the pain med to something stronger so it would last longer. I was going out of town a while back and wanted to fill my prescription early instead of trying to find a pharmacy where i was going the pharmatist told me it could only be filled every 28 days by law.

I am glad you are feeling better and hope you find a solution to your pain medication

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Thanks for your input. I really appreciate that you shared....how much of who's taking what...it's very private and very individual. I just felt like I needed a kind of measuring stick...you know?

My boyfriend lost his job last November and i'm on disability so presently,we have no coverage. So lyrica is out of the question and I have an eating disorder(getting really personal now...) so weight gain is a real concern for me as I already have an extra 20kgs on and have been trying to lose with no avail. The percocets are only 5/325 times 3 a day. I'm pushing through the pain as best I can because i know it's what is recommended. I use to do pilates yoga years ago so what i'm doing now is more yoga...stretching and more basic poses to keep myself flexible. I went to the mall yesterday for 3 hours with my daughter and I NEVER usually do that stuff because it's just too hard on me but i forced myself because it's special to her AND to me. but by the time I got home(actually more like an hour before I got home) I was a complete mess. It's pretty bad when you can't even take your daughter to the mall....She's 11 and beautiful. She has a great sense of style and I love being a part of that "coming into yourself phase" that she's in right now. Pretty soon she'll be too old to want to be doing that stuff with Mom.(crying)and i feel as though i've missed out on so much already...

I don't have the money for other kinds of therapy like massage or physio anymore. Not for now anyway. Hopefully that will change soon. i did acupuncture for my back last fall and it helped the injury so I continued for my over all pain and it didn't help.So I'm limited when it comes to treatments. Elavil is cheap,percocets are cheap, my sleeping pills and valum are cheap...the most expensive meds I take are the wellbutrin and lamotrigine.And I have faith that once I get up to my regular dose on it , i'll get some relief.Praying anyway...

I've heard of rebound pain but I've taken breaks to see if this was the case with me and it wasn't. I really don't think it's too much to ask for such a small increase. I haven't seen my family doctor since my diagnosis so hopefully she'll take pity on me.The Internist who diagnosed me told me that "You don't want to have percocts on your list of medications".She said that doctors would look at me differently,pharmacists would be looking out for me,basically I would be looked down upon. It didn't hit me until after i left her office how insulting that was. I DEPEND on my psyc meds for my mental health...people who have success with other meds DEPEND on them in order to function....how is this any different? I just think it's rediculous to have to worry about such a thing when I'm in excuciating pain. Do I take another pill or do I sit here bawling....the answer is obvious to me.

Much love to all of you and thanks again for helping me out.

Hugs

Carolyn

7

Thank you thank you! I sooo appreciate your feedback. I know that I'm not the only fibro patient in this situation and it's a sticky one...You said it so well TracyC....it's very sad that it ABSOLUTELY DOES come down to " Which days do I have my daughter?" I save my best for her so on the days I don't have her,those are my down days.

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HEY LADIES

I got a call back from my doctors office and her receptionist told me that she agreed to release my scrip a bit early! I'm so relived. She also added that it would be "just this once"....this causes some concern because I have an appointment next week and this makes me think she's not going to agree to an increase. If this is the case,I hope she has a better suggestion....Guess we'll have to wait and see. At least now though,I have a few extra for when things get really bad. Typically I can get by with only 3...not jumping for joy but it's do-able.

I'll let you know how things go next week....and for now,I can breathe easier:-)

Hugs

Carolyn

9

Hi Carolyn,

I've heard others talk about this subject but don't have any real experience in it. I did want to ask though, can the pill be split in half by a pill splitter? If so, why not go back onto the 10 mg and split them in half, thereby having more left over for an emergency.

It IS demeaning to treat people this way, and even IF people in chronic pain become addicted, so what? What's the choice, let them suffer? But yes, that's the thinking, let them suffer, they'll live. (Shaking my head in disbelief.)

My friend told me that she talked to a person with lupus who got significant pain relief with marijuana. it's legal in my state but my doctor won't dispense it, nor will the entire practice! I don't know if pot really does work or not but jeez, shouldn't we have the choice over whether to take stuff and lose the pain and be an addict, perhaps, or else just suffer endlessly, and maybe lose our minds? I don't get the thinking on this one.

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Hi Pet

I think I'll have a hard time convincing her to give me the higher dose.(10/325). As it is right now I'm only on 5/325. Great suggestion though...I do plan on bringing it up.

I've tried marijuana(eventhough it's not legal yet) but it causes my anxiety to spike. My nephew's doctor told my sister that medical marijuana is close to becoming legal here. There are actually some doctors already that are licenced to prescribe it. I've tried the synthetic form called Nobilone but it was like being stuck in a high...(not in a good way). It stayed with me all day...It made me extremely tired and I hated it. I was particularly emotional that day so i'm not sure if that had anything to do with it or not...

If it's legal in your state,maybe you should consider trying a different doctor? In our expirience(my sister and I ) you have to jump through hoops to get the treatment that you want. She moved mountains to get a cough assist machine for Matthew when we almost lost him to pneumonia 12 yrs ago. Nobody had used it before and if she hadn't put up such a fight,he might not be with us today. She ended up teaching the the respitory team how to use it. (Getting off track....I just admire her so much).

Anyway...Matt's doctor told my sister that they're working to refine the medical marijuana(so it doesn't make you feel too high) and prescribing it for chronic pain and fibro patients. Yes,this is second hand news but this came from the head palliative care doctor at the hospital. She does home visits for Matt.

Lots of gentle Hugs

Carolyn

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I am glad someone finally mentioned Ritalin. The Doctors where I worked before used it on the elderly that he said had disthalmic condition, basically they had given up. It worked for most, lots of smiles, more awake, better appetite....As a nurse I understand that most docs don't want to use narcs...for some types of pain they are good....let me say i have med allergies for codiene...so Tylenol and Motrin work for my pain along with distractions. I have found if a patient will begin the visit with a symptom not pain that the docs will listen. It reverse psychology....but in fairness to the docs there are alot of abuse. Please keep us informed about the Ritalin!!!! I want to ask for a trial in May when I see the Rheumatologist.

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I live on T3s. For some reason, the codeine cuts my pain. I take T3s almost daily, sometimes around the clock on bad days and on really good days I will go without them. I am lucky that I seem to be able to go a few days in between when I am feeling good. I use that to check on my dependency on the drug, as in psychological dependency rather than a pain relief dependency. My GP has suggested going to something stronger for my really bad days, but I do worry about addiction so, I haven’t gone that route yet. I take milk thistle to help cleanse my liver, pancreas and kidneys. With long term Tylenol use I want to avoid complications. I also get my GP to check liver and kidney functions periodically to make sure no damage. I also take Celebrex and gabepentin (400 mg x 3). I hope you find a solution that alleviates your pain. Wishing you the best.

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I am 28 and have been diagnosed with fibromyalgia since Dec 2012. The pain is now just about everyday and the flare ups are getting closer and closer. I have been on a wide array of medications and the only thing that will work are narcotics. And either the dosage is too low and wont take the edge off or it knocks me out. On the lower dosages i will even get the "high" feeling with no help for the pain, its a waste. I cant afford to pay for massages every week because that is what i need for it do make a difference. So know you are not alone. Thank you for the insights and some of the medications you mentioned i will ask me docter about. =)