PAIN MEDICATION: i have tried to avoid the... - Behçet's UK

Behçet's UK

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i have tried to avoid the narcotics, but I do work with a pain specialist. I was wondering if you guys feel your better without the medications or that they work for you. To be honest without the narcotic pain meds I wouldn't be able to get out of bed, go to college each day, and then watch my nephew for 6 hrs after. My doctor says I have a paradoxial effect because I dont get tired on opiates. They actually give me energy and life. Also due to the bone degeneration from teh osteoporosis I wouldnt be able to stand with the vertibrae in my lower back always rubbing on each other. Just wanted to get peoples take on it. Like i said it gives me the energy to get a full day in and fulfilled. I know the addiction issues, but over time obviously have to take more and more but right now its working. I was on narcotics before and then detoxed myself to see if the pain medication was playing a role into the worse results and i was off them for a year and no change and that year i was in so much pain and not doing much. Thanks

12 Replies

Really much the same as you - even down to the paradoxical effects. I am trying to detox from opiates at the moment but it's just leaving me even more exhausted than usual. The OH reckons that if I need the analgesics to feel normal then I should forget about the addiction worries and just take them. I don't think it's quite as simple as that though.

no not really as simple as that but it depends on the situation. Mine is sooo aggressive and what and where the lesions will just consume and now that its Neuro-Behcets and the headaches ive been having and pressure. It feels like my head wants to seriously explodeeee. So. Hows the detox going for you? Not cold turkey right? Tapering? How old are you as well? honestly as long as you have insurance and know you will be having it stay with the medications that help you. Yah when i was a kid they would give me my adderall and i wont fall right to sleep or be so drowsy. Stimulants make me go to bed and downers make me have energy. So strange

Hello again - sorry I haven't replied sooner but it's been one of those weeks where it's all I can do to get out of bed. Probably exacerbated by tapering the opiates :-D It's going okay but to be honest I miss the ability to participate a little bit more in life that these medications give me. I'm also tapering steroids, so it's a double whammy.

As far as insurance goes, I'm in England and so this is not an issue for me. I don't know how I would manage in the States; with great difficulty I suspect! Years ago we had private medical insurance as part of my OH's benefits package. The ability that gave me to shop around for doctors, hospitals etc was brilliant and we really missed the insurance when it was gone (retirement). We are now more able to pick and choose within the NHS but it's not the same; when you're paying you feel more able to dictate (can't think of the right word at the moment - my brain is not functioning as well as it once did) your care package.

As for age - oh dear, I shall be 60 next year. I'm a retired midwife too, so my doctors do tend to listen to my viewpoint because I'm 'one of the family' so to speak. I have to say, however, that at the moment I am generally pissed off with most of my medical team and feel quite disheartened about it all :-(

I seem to have rambled - forgive me

I have the same paradoxical affect from both classes of medications, as well. Stimulants put me to sleep, and opiates tend to give me more energy.

Wow, I thought I was a weirdo or something-me too I get a burst of energy and without it I am sleeping for days on end in a fetal position in bed, can barely stand on my feet(shards of glass feeling) ,pains in all joints. I am on a slow release morphine, just now increased to 3 times a day, started on reg. Morphine back in march'13. I never understood why the junkies go for this because there is absolutely no high whatsoever(for me anyway). I am not tired after taking it and it has allowed me to be somewhat functional. Being a medical professional and now in the 40 age group( Yikes), I've had plenty of opportunities and reasons to become addicted over the years-not in my nature and not going to start now. So what ,if at somepoint I am FINALLY getting better, I will wean off. In the meantime I deserve to live a somewhat functional life without being riddled in pain 24/7. We wouldn't let anyone else suffer like that so why should we? I also know that I put up with that pain for so long before I got any pain relief and was pretty much ready to leap off a ledge by that point. So the point being is that I totally agree painkillers have their place in medicine, when used appropriately whether for acute or chronic pain in order to make people more comfortable during an illness. The reason everyone freaks out about it now,again is that some physicians have acted irresponsibly by prescribing narcotics to drug seeking,doctor shopping junkies who jump through pharmacy windows to get their fix! Can you believe that there still exists doctors who are afraid to prescribe opiates to palliative(dying) patients for fear they will become addicted??!! Hello?! They are dying! So I think for the brutal BD ,some of us find ourselves at that point of unrelenting pain-please find some pain relief, whatever that may be(acupuncture, painkillers,etc).No one needs to suffer:)


i agree. With my age it has been a bitch to find someone who understands pain. I also have tattoos so I am immediately looked at liek OkKKKK here we go, some sucker trying to get medicine. Luckily, i found a dr that understands my diseases are debilitating at times and can really be miserable. Same here I listened to my dr talk on and on how pain medication is giving up and once your on them your never going to get off and basically made it sound like i was going to be a horrible person. Its not the physcians, its the people and honestly pharmaceutical companies and what they charge some people for these damn medications. If they have to pay 600 dollars for a months supply they are probably going to go to any means necessary whivh is not responsible but if they need the medicine well then hell. Im on a very good regiment of sort acting and long acting medicines, and I finally have relief. That feeling of energy instead of drooling on yourself is called a paradoxical effect!!! Some people have it and usually it comes with opiate exposure in the womb(mother doing drugs/having opiates in system at early age) not saying your mom was like this to anyone, but i was born addicted to methadone and one the reasons that I am so opiate resistant. Thanks for responding everyone.

Hi! I wouldnt be able to do any sort of activity or get outta bed without these meds for chronic pain. They do not do anything to me other than decrease the pain. I dont get tired or any other type of feeling other than relief! There is a small chance of addiction when taken as prescribed. Abusing meds, addictive personality, etc contribute to addiction.....also dependency & addiction are 2 hugely diff things. Dependency is a normal & acceptable occurrence when taking narcotics long term. Each person is different and I am thankful to have these meds. Id rather not need them but Im not gonna suffer unnecessarily either. Take care!

I agree. When i take them in my class its like people are staring like whats he got!!! College kids haha. I keep mine locked away but i do do a breakthrough med and also a long acting. Is this how everyone else has there treatemtn. I do see a pain specialist and seems she really has been able to help me alot. She really cares and just because I am not labeled a cancer patient doesnt mean that I dont have serious pain. My pain is so bad since its gone Neuro Behcets it has effected so much. The fibromyalgia sucked and osteoporosis sucks. The worst has been the degeneration in the vertabrae in lower back. It is all bone on bone. Worst feeling ever.

I totally agree with pretty much all that has been said above. They (most opiates), I have also found give me more energy, rather than make me tired or dopey (as so many people with non-chronic pain seem to tend to respond to and view them as). I have tried everything over the past 11 years of near constant pain (at varying levels at different times though)--

- from complete abstinence from all medications after an appropriate medical detox (could not stand up, bathe or feed self or child, sleep, etc. - even after mos - due to extreme pain)

- Suboxone (similar to LDN, I believe) - that made me incredibly sleepy and nauseated, dizzy, with approx 50% pain control at highest dose I could tolerate side effects of. I slept about 3 entire days/week.

-Ultram/Tramadol (non-opiate, but with "opiate-like" effect they said. This was actually incredibly effective (@ highest dose w/in prescription guidelines) - AFTER a full medical detox from opiates and a period of letting myself hurt quite a bit to reset my tolerance, so a less strong medication like Ultram would work better. & it did. However, I was utterly drenched in sweat pretty much the whole time I was taking it (over a year). So eventually, I switched.

- Lyrica, Neurontin, etc. - All these non-narcotic "anti-seizure" type meds help the pain some for me, though not all, but the side effects were utterly intolerable. With Neurontin, I swelled up 60 lbs in a few mos with an almost allergic fluid retention (which went away w/in 2 mos of stopping it) and I could barely think at all, slept day and night. With Lyrics, wow did it ever help the pain. I loved that, but I was irritable to the point of enraged inexplicably and lost all sense of time.

I could go on with others. Those are just some of the more common alternatives I have tried over > 10 yrs before finally just recently really accepting - "you know what, I don't care what anyone else thinks about it. I have a chronic, very painful disease. I have tried (and tried again) literally everything else. For whatever reason, opiates work best for me with very nominal if any side effects, I have neverb abused them (*I would never jeopardize myb ability to be able to have them prescribed as it is literallyb the difference btwn life and death for me as I have no life at all w/o some pain relief - I tried it, and lost almost everything because I just couldn't get up, or function or even think straight at all)--and I have the right to feel okay in my own body (I have a doctor who taught me that. It does not make me an "addict" to want to treat my legitimate, long term, well documented pain conditions. That actually makes me pretty normal. Yes, there is physical dependence that comes from regular use, but it is not the same thing as using drugs to escape, overusing/misusing them, using them to get high, etc.). I take an appropriate amount of an appropriate medication for chronic, usually fairly severe (w/o the medication) pain. I am honest and accountable. I take only enough to treat the pain, never to get high - in fact, I have found that if I am taking the correct dosage and correct med (for me, Fentanyl patch), I do not get high st all from them. I am lucky to have them mostly cover the pain, and I always keep my therapeutic dose under what would make me feel high (*which freq means a dose where I am still experiencing some residual pain, but not so much that it is distracting me from thinking about anything else in life [or worse - hurt so much when I move that I have no motivation to move & hurt].) - like stopping eating before you feel completely full. If I keep those parameters, I function 10 times better taking opiates for the pain than simply lying in bed crying all day and night from the pain, and much better than the many other solutions out there I have tried for years. I am fortunate my primary doctor, rheumatologist, and most other specialists fully support me in knowing this about my own body, medical history, and what I need and how I function best. Since I have accepted this (for me, just for me), instead of continuing to try to taper off them again (just because I thought I "should"), continue to be in horrible pain, sleeping most of the time for mos., etc, I have returned to graduate school and to work part-time, and have an increasingly full, satisfying life, where I can make plans and keep commitments.

As a sidenote: Apparently, the increased energy from opiates occurs in approximately 1/3 of the population (by study, per my psychiatrist), they have an antidepressant effect for those people. He said they learned this (but never made widespread) in the 1960's.

Wise and very welcome words, goodmum; thank you for taking the time to post. I found the extra info about the paradox effect very interesting.


i agree fully. I know that it seems everyone is a bit older than me so they dont have some of the problems that I have had. Here in the US there is a HUGEEEEE perscription drug problem and well like goodmum stated never risk losing my dose so someone else is happy. I am 28 and I do have tattoos so I know the stereotypes when I walk into the pharmacy with my perscription. Luckily, I have been going to the pharmacy for YEARS now and they all know me by name, but when they have some that are borrowed from other stores and covering, they literally will say let me check our C2 vualt and tell me they dont have the medication and then I will call the next day and when its a pharmacist ill know I will ask and they will be like OOO yeah we have plenty just come run in Dean put you on the waiting and be done in 10 mins. I literally have been lied to by many pharmacies due to how I look. I always were dress shirts now when I go in or a nice coat because I understand that with choices come consequences, but not enough where you have to lie to a customer and tell them well i think Walgreens or maybe the other one down the street will have them. I since then have found a real pharmacy staff that works with a lot of pain specialists so they see the medications all the time and I am not judged. Its because I walk in normal and not with a cane/walker or serious limp. I am suppose to use a cane but because i'm stubborn and refuse to look that old by using a cane i get it. That is just the experiences I have had. Like i said i found a pharmacy staff that understands pain and also I am 28, but still look young so there is trouble. When i was about 20 years old and trying to barely fill a Norco perscription of 60 of the 7.5mgs I would get told no sorry we dont have it. They keep that stupid drug in bottles of 1000 and I saw her pull it out and shake it and it had more than 60 of them. Funny how pharmacist tries to play doctor sometimes. I have been question like are you sure your doctor wanted to giver you this strength. They call the doctor anyways to verify C2 medications anyways but I could go without the constant harassment. finding a staff that cared was a big plus. Big branches here in USA are CVS, Walgreens, Costco all have people who generally dont like there job and they have the DEA on there ass because they dont care and follow procedure. Now I know it is procedure to see me lets say when i was 19 years old and NO tattoos and verify with the doctor and then run it through, but the lying and making me have to go to other places was not fair.

I just joined today and WOW is it ever uplifting to hear stories from other people that know what I am going through!!! Even though this disease is awful and no fun at all I don't feel so alone anymore!

I was diagnosed in '06.

I'm 37 now. LOL Actually, I just realized it's my birthday today! HAHA!

Anyways, I've been on opiates for 4 years.

I have Neuro behcets. I'm on disability.

I live in BC Canada.

I'm on 32 mg of dilaudid 3 to 4 times a day and 30 mg of hydromorph contin 2 times a day. (as well as several other medications)

When I first got put on opiates I was on .5 mg of dilaudid. That was 4 years ago and my tolerance and progressive degenerative disease has put me up to where I am now.

I live in a REALLY small town. And at first they weren't sure about me when I would go to fill my prescriptions. (that's my pic of me there, long blue hair, lots of facial piercings and 1/3 of my body is tattooed) so I totally get it when some people here have talked about discrimination based upon appearance. Luckily, because my town is so small and until recently, my doc was the only doc in town they got used to me pretty quickly.

My mom is on the list to pick up my prescriptions because I'm often in a wheelchair and it's just too much for me to get to the pharmacy by myself.

When I'm well I walk with a walker. And when I am really well with a cane.

So maybe they got used to me more quickly because they never see me without some kind of assistive device? I don't know.

When I first started opiates I would get that same feeling of having energy and I also would talk your ear off. haha. Chatty Kathy my mom would say. I could clean the whole house and go for a HUGE hike with my dog and come back and have energy for more.

Now that I've been on them for so long I call them WORK. Because they are LITERALLY work.

I HAVE to eat something with my medications or they all come back up.

And I don't know about you but I suffer from constant nausea from both Behcet's and from the plethora of medications I'm on. I actually have my medical cannabis licence and am lucky enough to have appointed a family member to grow for me as part of the licence allowance. If I didn't have that little plant in my life I would surely wish I was dead.

Once I have cannabis and food in my system I can take medications. And they put me OUT.

As in the combo of muscle relaxers (I get seizure like muscle spasms and am on some heavy duty meds for that) and opiates render me useless.

Since Sept 25 2012 I have LITERALLY been bed ridden. I had to give my dog to my brother because I can no longer look after her needs (she's half wolf and needs to run/hike for about 3 hours a day at least to be a happy dog) and that's broken my heart. I spent over 5 months in the hospital (from June 1 to October 9) this year where I was monitored constantly and MRI's sometimes once a day because meningoencephalitis haunts me.

I really LOATHE the opiates now. I used to really love the freedom they gave me but now they only serve to cut back on some not all of the pain I deal with every day.

They aren't fun. I sweat all the time because of them and they make me feel like shit but what else can I do?

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