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Chronic pain almost unbearable please help.

armelindarmelind South TexasPosts: 88
edited 10/04/2014 - 6:33 PM in Chronic Pain
I used to post on here for moral support but after my surgery, I noticed a bit of relief from my pain. But shortly there after, I have increased pain, multiple new procedures done and a final diagnosis that leaves me speechless and out of hope...none the less, in more pain than I had before my surgery.

I had double laminectomy....hardware and bone stimulator installed. Dr. said I healed up real well but I kept complaining about excessive pain. He said that it was "normal" and to wait until 18 mos to find out for sure. More pain...so I went in for surgery a 2nd time to have my hardware removed. 6 mos to 1 yr later no real pain relief. 2 sets of 4 cortizone shots, some kind of nerve blocker (lydocane) injections, and finally Radio Freq nerve ablation...no significant pain relief.

Finally I got sent back for another MRI but this time with contrast and without, and they see something that finally explains it. My final result is Epidural Fibrosis. Now instead of my doctors working for me, those 2 words "Epidural Fibrosis" means the only thing they can tell me is, "Sorry, I wish we could do more".

But there is good news, my Pain Management Dr says, "Most people that have this are either bed ridden or wheel chair bound." so yeah I feel encouraged by now knowing what I have to look for.

I have learned to not trust the pain scale they ask us about....1 to 10 1 being minor and 10 being the worst pain you ever felt in your life.

I have broken a toe and my hand and that was bad but the only pain that surpasses my pain right now, is the day after both surgeries. 5 yrs of intense unrelenting pain that interrupts my sleep, keeps me from spending time with my family is as far as I am concerned, is a full on 10 because it is subjective. The only thing that seems to take the edge off is drinking. But I know I am not supposed to do it, especially while I am on so many meds. But so far, it seems to make me not care. I am not talking about getting totally blitzed. i am talking about 3 to 4 beers and then I can relax. With all my pain meds and sleep meds and muscle relaxers, I call it my Patsty Cline cocktail.

My sense of humor has gone south lately, But I sure have gotten good at grinning and bearing it. Especially when I have family members that think the millions of dollars my health insurance has paid out for my care is nothing that a $20 back brace and some incense or epsom salts can fix. Nobody will ever understand. And as long as I can walk, I must be only a Motrin away from relief.

btw I thought it was funny when I was trying to choose a subject under my topic, there was about 8 that fit in but the general umbrella term was chronic pain.

When you look up Epidural Fibrosis, you get a bunch of scientific papers and very few Layman descriptions. Everything I have been told and read up on says About 10% of all back surgeries will have some lasting chronic pain. 50% of those will get some relief over an extended time, the rest are subject to what I have. It may or may not get worse. Weight gain, physical therapy, diet have little effect on pain. Its very misunderstood. My pain Dr says the last chance I may have is the nerve blocking electrode thing... but since my pain is caused by scar tissue, there is a good chance, putting that thing inside me will cause more scar tissue so I am pretty much against it.

Has anyone else tried it? Has anyone else gotten pain relief from doing anything?

I would appreciate any kind of input. This is a last resort kind of thing. I am at my wits end. I am so tired of this pain. Very tired....

Please help.


  • As far as the spinal cord stimulator goes, yes there is a forum and many people who have had them implanted for various reasons and most with some good to excellent pain relief.
    Epidural fibrosis is scar tissue. Scar tissue forms after an injury or surgery. Have you considered a consultation with other surgeons or pain management doctors regarding treatment options? While having another surgery to remove it can be tricky, in some cases, some surgeons will do it, and replace the scar tissue with a fat pad to prevent scar tissue from forming in that area again......however, in some cases it works, and in others not so much.....which may be that the pain they are feeling may not be related to the scar tissue at all.
    A trial is done before the permanent implant of the scs unit, with temporary leads which are inserted using a hollow needle, and then taped down your spine to a temporary stim unit......you get to try out the feeling and sensations to determine if you get 50% relief or better before going ahead with a permanent implant. If you have a successful trial, and decide to go ahead with the permanent impldnt, the leads are implanted at a higher level than where your pain is at.
    You can read more in the Spinal cord stimulation forum, under the Treatment section of the forums.
    One last thing, you are taking very risky chances by consuming alcohol with your pain medications. I would suggest that you stop drinking period, since some medications combined with ANY alcohol can be lethal. Alcohol and opiates both suppress respiratory function.
  • armelindarmelind South TexasPosts: 88
    Like I said in my post, there were 8 different subjects I could have posted under that would have fit my situation. I didnt know what i was going to type until it came out. So I chose Chronic Pain... I may go to the stimulator group but truthfully I dont want them going in me anymore. Each time hurt me more. And now it seems like weekly I have increments of pain worse than before. I thought I was at my wits end back in 2008. I seem to have much more suffering left in me.

    When I was in the hospital (post-surgery) the first time, I kept hitting that morphine button but I never seemed to get any pain relief...I just noticed I got loopy and basically wacked out of my mind high but STILL IN PAIN. So when I went to get my hard ware taken out, I didnt use it at all. They told me "If you dont start using it you wont be able to leave tomorrow." So I pressed it every little while that I could think of it.The next day they told me "You had a significant increase of dose of the morphine, if you want to get out of here today, you will need to ween yourself off." I never touched it again and I told the nurse what the night nurse told me but of course I was an idiot high on morphine to her.

    Unlike the morphine, drinking (I understand it is not good) but its the only thing that takes my mind off the pain enough for me not to care. I am not saying I am drinking a half a bottle of whiskey or vodka or liquor, I am talking about 3 beers. I only have them after work. And they last me until I go to bed anywhere between 11 and 3am. The less I sleep the more pain I have. I am lucky I have the job that I do, they understand that some days are bad days for me. I rarely have taken a full day off work. Sometimes I need a bit longer to get moving in the morning. And sometimes, like today, I got to sleep by 11pm and my pain woke me at 4am. After my meds kicked in and took the edge off (around 7am), somewhat. I went back to bed and slept until 10 am.

    Probably like most people I have only about 2 good hours out of every 6 or 8. Those other hours are my pain meds starting to kick in or when they are wearing off. Btw my pain meds are 15mg of Oxycodone. 1 pill 4 times a day. They barely work. I still hurt 100% of everyday but the intensity wanes a bit for about 2 hrs between my every 6 hr doses.
  • I'm so sorry. I know what it's like & it sucks. Sorry, I'm not feeling very eloquent today. I'm one of those who does everything I can think of just to take the edge off of the pain (I'm an Epsom salt, airomatherapy girl. Ha ha ha, don't knock it until you've tried it!) nothing is going to make the pain go away. I believe in narcotic therapy, for me it's essential. It doesn't take the pain away but it helps to make it more manageable. 4x 15mg Oxycodone a day wouldn't work for me. This is something to discuss with your doctor. That might give me 8-10 hours of tolerable pain but we are in pain 24hours a day. Have you ever tried adding an extended release med that lasts 8 or 12 hours a day?
    I agree with getting a second opinion just incase there's something else surgical that could help.
    I don't compare hospital IV meds to oral ones. I've had trouble getting my pain managed in hospital. I don't know why. It's just different.
    Osteoarthritis & DDD.
  • EmeraldEEmerald Posts: 23
    edited 10/06/2014 - 3:50 AM

    I am so sorry that you are going through this intense severe chronic pain experience as am I. It is a real EDIT.

    I take MS Contin. It does help. I have not tried many other narcotics but I tried every kind of anti-depressant, anti-inflammatory
    Muscle Relaxers, Neurontin, other meds etc. out there. Have you tried MS Contin? It at least distracts your brain from the pain and makes you numb somewhat. It makes me able to keep from loosing my mind- if you know what I mean. It holds the pain at a certain level and does not usually go beyond that so I am not anxious all the time about the pain getting to a place where I cannot bear it and loose my ability to think at all. I used to live in constant fear of that.
    It also lasts for a long time and I have only had to have one small increase in 6 years. So it seems to not develop a tolerance - at least for me- very fast. Which is good, I am now at the point where I need to ask for a break-through medication my next appointment though. I am not doing well.

    I know how hard it gets when you cannot even sleep or eat. That makes your quality of life at a 0 zero. None. You can't go on that way or you will try to commit suicide. I am so grateful that I am able to sleep and eat now. I take clonazepam 1 mg at night as well as 10mg Ambian. This works well for me. Have you tried this? You have got to find some way to be able to sleep.
    Lorazepam works well too.

    Also, meditation is really something that has helped me ALOT! Just do it while you are laying down for bed. Try to clear your mind. Say a mantra (any kind of short phrase) like- I am love and light not this illness for example- anything short and say that over and over in your mind. This makes it so the brain does not go off thinking, thinking, thinking about all these problems and it allows you to just look past that and imagine you are on a beautiful island or whatever you like. Take a vacation in your mind. Even, try to Astral Travel. I listen to humpback whales with binary beat meditation music. I like the sound of the water, it is calming and the whale-song helps. It is really magical for me. You might find something that works good for you.
    When you have bad memories or thoughts creep up then imagine you physically grabbing that thought and throwing it out of your mind. Do it every time these thoughts creep up and eventually you will find that a day comes where you don't have to keep doing this anymore. It cleans up your mind and makes space for some peace, laughter, love, hope, joy.

    Laughter is the best medicine! I try to use humor as much as possible.

    Music therapy also helps me. Sometimes some good angry hardcore music helps!

    We got a little puppy too- a Yorkshire Terrier and she has been the best little therapy dog. She keeps me moving a bit more and provides me with a companion who just loves me no matter what. I would highly recommend getting a little baby dog or kitten if you have someone to help you care for them. It has helped me. They double as a heating pad too. Lol!

    Also- diet is very important. I am sure you know this but I am just including everything I have found that helps. If others have anything that helps that I have missed, please let me know. Please.

    Drinking lots of water. Also- I drink pomegranate and Blueberry juice- it gives me energy. And makes me feel GOOD!

    Try not to let family/friends get to you. They do not understand. Only people who have had severe pain and chronic illness can even comprehend what we go through. It is just not worth the energy waste to let them effect you. We know that we are doing the very best we can and really we are EDITED in my mind because we endure so much. I try to endure it with grace. I just remain silent a lot. Better than always complaining. I pray ALOT. I pray for myself and for ALL those out there who are going through so much. Love to you.


    Use of foul language is NOT permitted on Spine Health
    God Bless all of us who are suffering with chronic pain and chronic health conditions.
    With Love and compassion,
  • armelindarmelind South TexasPosts: 88
    edited 10/06/2014 - 3:55 AM
    I am on amitriptylin 25 mg at night... I really havent noticed a difference. But it does help me sleep better than when I was just on Ambien 10mg. I have a resistance to Ambien now. Before my surgeries I was a part time insomniac. I would go thru 3 month phases of little sleep sometimes for only 3 hrs a night once a year since about 2001. After my surgery, the pain made my 3 hr a day sleep cycle permanent. I was on 10mg of ambien for 4 yrs. I got tolerant of it so I started using Melatonin with it... but after a short time they started work against eachother... took me several months to figure that out... I was a zombie EDIT to everyone around me. So for now I take the amitriptylin and a melatonin while my Dr weens me off the Ambien. This will work for a short while, then I go to the Nyquil type stuff once in a while to get some sleep when the melatonin stops working. I know I am a manual on what not to do, but all the stuff the doctors told me only work for short spells.

    I was on Norco 10-325 and Neurontin 300mg both at 2 pills 3 times a day for about 3 years. But that stopped working and now I only take the neurontin a few at night because they also seem to help me get to sleep and since they are a nerve medicine and I have a nerve pain, it has to help some, right? I also have a muscle relaxer Baclofen10mg I take at bedtime too. All under a Dr's order. I am not taking Rx meds at my own made up dosage, cept for the Neurontin. They want me to take 3 of those 2 times a day but I only do those at night.

    I even had a sleep study and was given a CPAP machine...since I only sleep on average about 5 hrs a night... the CPAP mask would get tangled or something would get in the way so I would take it off about half way thru the night...well my insurance company would pay for my CPAP if I used it 50 to 75% of the time. And for me 2 to 3 hrs a night was 50 to 75%. But for them it had to be 4 to 6 hrs a night. So they stopped paying for it so I sent it back. (My CPAP machine had a mobile data collection thingy on it so it would call in once a day to let them know if I had used the machine or if I was using it wrong)

    Since I snore and my pains make me a restless sleeper at night, I dont even sleep with my wife. We have separate rooms. And before my pains massive increase in the last 2 months, we still shared good "quality" time... and now I think its been a month and with my pain, I cant even think of sharing that time with her. I know it will be a matter of time that she goes elsewhere to get what she isnt getting at home. I already told her if she needs to move on, I will understand. She seems to be sticking by me for now. But we are both in our early 40's and I already am slowing down. She now has to do many things without me because I never know when I will tire out and need to just go home.

    I try to visit family members but some live as far as 2 hrs away and thats too long for me to be in my car. So phone calls have to be enough.

    Yeah, the amitriptylin is supposed to help with my moods and has been known to relieve some pain. But other than helping me sleep a bit better, I dont think it is helping with my moods or the pain. I was told at one time that Methadone has a pain relieving ability. For a short time I thought "why would I ever want to get onto something like that? Getting off it will be like being on heroin" but after thinking that over, my pain aint EVER gonna go away (so the doctor says and everything I have read about my problem) I wont ever have to worry about getting off it. So I guess it is an option.

    Again, thanks for the input everyone, I do appreciate it.

    Use of foul language is NOT permitted on Spine Health.
  • on an "as needed basis". In order for it to be effective, it has to be taken on a regular basis, exactly as prescribed.
    It doesn't matter how much alcohol you are consuming, alcohol and opiates DO NOT mix, and your doctor may test for alcohol consumption when he runs your tox screen, and if you test positive with alcohol, he does have the option of not continuing you on opiates.
    As far as your pain medications and overall pain treatment go, there are a lot of things that you and your doctors could be doing ( if you are seeing a pain management doctor- not your primary or surgeon) that might be far more helpful in getting you some significant p ain management going.
    The first would be to put you on a long acting opiate and getting rid of the short acting versions or using a combination of them. Long acting versions of opiates provide far better overall pain control, with less dosing. Typically most of them use 12 hour ,dosing schedules, so you are only taking two pills per day, but the pain management continues for 12 hours at a time. It takes a few weeks to find the right long acting medication, and adjust to the right dosage, but once you find it, it manages your day to day, all day regular pain levels. Then he may want to add in a breakthrough medication for flares ONLY.......the use of breakthrough medications are not meant to be used every day or on a regular schedule , however they are very helpful when used properly and sparingly for those awful days. Breakthrough medications should only be used when ice, heat, rest, massage, TENS, etc have all failed.......then and only then should the breakthrough ( short acting medication be used). Otherwise, all you are doing is increasing the total amount of opiates that your body is accustomed to having, and it leaves you nothing for when you do have legitimate flare ups.
    The gabapentin is used to treat neuropathic pain and the dosage range is very , very large- 100 mg-3600 mg per day. It must be taken regularly and since you aren't taking it as prescribed, may be contributing to your recent flares of pain, and sleep disturbances. Not taking it can lead to seizures if you abruptly stop taking it, so if it is not working for you, then it would be wise to talk to your doctor about trying another neuropathic pain medication. Taking it as you currently are, is not helping you, in any way. It is not meant to be a sleeping pill, and should not be used for that purpose.
    As far as the spinal cord stimulation trial and implant goes, it would be worthwhile investigating if your pain seems to be mostly neuropathic in nature. You might be surprised at the pain relief that some patients get from it, and the activities that they are able to resume. The good thing is that with the trial you get to see if it works for you or not........if it doesn't, then there is no harm and no foul. It is not invasive in the sense that there is surgery involved in the trial, and if it fails, the leads are removed and the temporary unit is removed .

  • armelindarmelind South TexasPosts: 88
    I have had all of the stuff you said, and the gabapentin doesnt really work for me but my doctors (Pain management Specialist) DID tell me that gabapentin can be a med that can make you drowsy. If I take it like they want I have an adverse reaction. I get itchy and agitated. I told him how I take it. He didnt get alarmed by it. THEY KNOW every pill I take and how much alcohol I drink....which is like I said 3 beers a day after 5pm. I didnt drink hardly at all until this pain started immediately after my first surgery in May 2011. And in the past 8 months my flare ups dont go away. They become my new average pain. I have just had another increase in my pain "theshold" in the last 3 days. I am constantly sweating from pain. I am waking up every day at 4am after being sleepless until 12am. SO I am averaging less than 6hrs of sleep a day. I am a living unconscious person almost everyday at work.

    I have 3+ weeks of vacation and sick leave from my job every year. I have not taken a vacation this year....and I have less than 25 hours left. It from the MULTITUDES of doctors appointments and sleepless nights and being in so much pain that I cant get out of bed. But staying in bed hurts too. I wish they could kill the nerves in my pelvis!! I feel like I have a MACK truck parked on me, crushing my pelvis.

    The only thing my doctor tells me is that he is sorry and he can not do much for me. Yes I need another doctor. But going to the only doctor closest to my home besides the one I go to, is 20 minutes further each way and will only see me on a Tuesday or Thursday before 10:30 am. Which means instead of losing 1.5 hours of work for a dr appointment, I will lose close to 4 hours a day. I live between my work and my doctors offices. While my current doctor is 20 minutes from my work, the other dr is 20 minutes further away....with no traffic. I am dragging my feet deciding on going to that doctor because I cant afford to miss anymore at work before I start missing money from my paycheck.

    I know everyone has an excuse. But to me, mine are meaningful because if I cant afford it, I cant afford it. And other pain specialist are in the medical center about 1 hr from my home. I have very few choices.

    I will quit drinking when they give me a medication or procedure that eases my pain. Until then, I will self medicate since it is THE ONLY thing that helps distract me. I have even tried marijuana and it didnt do anything to ease my pain. I dont do any illegal drugs normally so trying that was hard for me.

    Anyways... thanks for your thoughts about this. Lawyers wont answer my calls either because a surgery that basically crippled me is not a crime.
  • armelindarmelind South TexasPosts: 88
    Well the Dr has changed up my meds again. I told him how I was taking all of them, he told me to stay on the Amitriptylin and double my dose. Get off the Gabapentin and stop my Oxycodone and Muscle relaxer. I now have a 10mg Rx of methadone, which I pick up after work. So, lets hope the pain settles back down to the levels that I used to think were unbearable. I kinda like the fact I only have 2 prescriptions now instead of 4 or 5.
  • Hi,
    I sent you a private message.
  • I've watched some YouTube lectures by Pain Management specialists from some of the universities & they say that methadone is a great pain killer for chronic spine pain. My doc agrees. Apparently it's the only narcotic that works well for nerve & structural pain. Best of luck!

    My formative years were the "Just say no!" 80's so I associate methadone with heroine addiction. Silly, I know. A lot of people have great results.
    Osteoarthritis & DDD.
  • armelindarmelind South TexasPosts: 88
    I went to my doctor, yesterday, telling him of the increased pain and he suggested methadone and I agreed to it. Today is my first day on it, and I am pretty much miserable with its side effects. I feel like I am on drugs ha ha. I never felt drugged with any of my other meds. And I cant say my pain is any better yet. But I am guessing I have to let it build up in my system before it will actually do anything. And maybe I will get used to this sluggish feeling.

    Lately it seems like my body isnt reacting to the pain meds like it is supposed to. I dont get drowsy or sleepy with my meds, I dont get "high" off them. When I take them it feels similar as taking an aspirin for a toothache. Maybe it helps some but not enough that makes my life any better.

    Fortunately, even though my pain is intense, it doesnt affect my movement range. I have no muscular symptoms at all. I am weaker in my body than I like because of the lack of activity. I do hurt MORE when I do physical work but it isnt pain that is in my legs or in my (lumbar) back. I feel drained like after doing too much activity while recovering from surgery and the massive pain in my pelvis is deeper and stronger. It doesnt hurt to move. It hurts to exist. Its like if I shoveled yards and yards of dirt and I am aching and the pain switch was left on 3 yrs ago. It never stops. It hurts to sit down, it hurts to stand and it hurts to lay down for any extended amount of time. So...thats all for now.
  • attheinletattheinlet Posts: 32
    edited 10/08/2014 - 12:02 PM
    I don't know too much about Methadone other than it is used to get addicts off of the pain meds. You do not sound like an addict. Your description sounds as if you have pain that isn't controlled. I hope the Methadone helps you. Just make sure you keep your doctors up on how you are feeling as you are looking to feel better not worse.

    Good luck!
  • I guess (I haven't tried it yet) that it's like other meds & the sleepiness will go within a week or two. I can remember feeling completely drugged-up on hydrocodone when I first took it 8 years ago. I thought i'd never be able to live that 'out of it'! Our bodies adapt pretty fast.
    I know there are members here who use methadone I hope they let you know. I've always heard that no amount of narcotics will take all of the pain away but hopefully they'll get you on a dose that's distracting enough to allow you to function & enjoy life...isn't that all we want really?
    I think it's natural for all 'those' sleepy, druggy feelings to go away (Thank goodness!) I take Opana & Oxycodone at the moment (I've tried a lot of different meds) & like you it feels like I'm taking Tylenol but it relieves my pain enough for me to function enough to take care of my kids & home. Without my meds I can't exercise & stretch & everything goes downhill fast. The less I function the more depressed I get about my situation & the more panicked I get about my future.

    Have you had your hips & SI joint looked at? I've had arthritis most of my life. I've recently had more diagnostic shots to identify some of my different pain generators & that weakness & pelvic intense pain seems to come from there as much as my lumbar damage. Just a thought....
    Osteoarthritis & DDD.
  • First off, you do not have to justify to people that are making you defend what your doctors know you are doing. I can give you some first hand knowledge on the spinal cord stimulator. I have a diagnosis of incurable. I did the trial for the spinal cord stimulator and the peripheral nerve stimulator. During the trial, I was also stopped from partaking in PT. So when I had the test, I thought it worked. I got it inserted. I am on more than ten times the opioids than you are and they had to remove the morphine pump after surgery since my BP was 50/20. Then they forced me to roll onto the incision to keep my BP up from pain. Everytime I got off my incision to get out of pain, my BP was back at 50/20. Well that aside as most people are not on the level of opioids that I am on and don't then have the same reaction from the anesthesia. The trial is inserted by an anesthesiologist. They use fluoroscopy to place it and they tape it to your body. they set up a program and may reprogram it 2-3 times during the 5 day trial. If it shows a 50% change in pain meds taken, then they will permanently implant it. At that point, you need to decide if you want it floating in your back and able to move out of place. It is a much easier surgery but the results aren't as exacting with an anesthesiologist. The leads are floating near the cord. When a neurosurgeon installs it, they open up your back and cut away some lamina and sew the leads down so they won't migrate to the wrong position. Now I showed good results and had the implant but it turned out to be a false positive. Once PT began again, my pain pills went all the way back up. I tried reprogramming it several times and it never helped me. It was implanted Sept 2013 and I turned it off permanently Feb 2014. It then turned out that I had adhesive arachnoiditis. I have severe pain in the L4-S1 area. I explain it as the sun burning and sharp as you can imagine. It then radiates over my buttocks and to my greater trochanter. The disease is bothered by stretching, exercising too much. I can't lift, push or pull more than 4 lbs. Many people swear by the spinal cord stimulator but I can't find doctors willing to take it out other than the expert I saw in CO who implanted it, But sitting is impossible for me and to fly there I have to buy three seats so I can lay down the whole flight. It is a big expedition. So for now, even though I am getting some cervical pains, I can't have an MRI. If you do decide to have one,go with the company that now allows you to have a MRI with it in. Currently there is only one. Since we are not allowed to tell brands, PM if you decide to do it and I'll tell you the company that makes the SCS that can be put in a MRI machine.
  • Be really careful with the methadone, and never, ever take more than you are prescribed or more often. Methadone has a very long half life , so it lasts in your body and accumulates.......When I was on it, it made me extremely tired, and I would drop off to sleep suddenly. For me, it was too much, ( I really dislike feeling like that) and after giving it a trial, I and my doctor decided not to use it in my case.
    The good thing about methadone is that it treats both neuropathic and mechanical pain, but getting through the early drowsiness and dropping off to sleep can be difficult at first. Those side effects usually disappear in a couple of weeks, so if you can get through the first two weeks, you may find that once your body establishes a baseline blood plasma level that it really does help your pain. For your sake, I hope so.
  • armelindarmelind South TexasPosts: 88
    I decided not to double my amitriptylin last night as my Dr told me. I am getting on a newer stronger pain med and doubling the other med made me not sure if I was having a bad reaction to one or the other. Now, I know, doubling the other med was too much for me to handle at this time. As for pain levels...I am not sure if it is helping now. I am still feeling a good amount of pain but I am guessing it isnt as intense...but I cant say whether it is better or worse than being on Oxy right now. I was kind of put in a hard place when given the option of one pain med or another. The first one (I cant remember the name) was going to cost me $140 a month even with my insurance. But the methadone is a generic so I get it for free. And considering that my situation (Epidural Fibrosis) is permanent, I dont see why getting off the meds are even a concern. As far as I know, I will be on pain meds for the rest of my life.

    For the last 3 yrs I was on hydrocodone 10-325 2 pills 3 times a day and gabapentin 300mg 2 pills 3 times a day and 1 or 2 muscle relaxers and something else I cant remember. Now with the methadone and amitriptylin I take 3 pills all day.Approx 16 pills down to 3. I am very happy with that result.

    I am still a bit reluctent to let them do anything else with the inside of my back. Since epidural fibrosis is scarring at the nerve root, anything they do if they go in again, will create more scar tissue. Thats the last thing I need. Like I said in previous posts, everything that was done in the past didnt help at all. And I only ended up feeling more pain. I am guessing having them 'root' around in there caused me more problems.

    I will be hopeful that some day soon, my pains will be diminished enough to continue on with daily life. But right now, I can barely do dishes. Not to mention the rest of my duties in and out of the home.

    Sandi would be happy to know that once I started with the methadone, I stopped drinking my 3 beers at night. It wasnt difficult. And after a short while I am hoping I can quit smoking also. It should be much easier with out drinking.

    Thanks to everyone for the encouraging words and the helpful information so far.
  • sandisandi Posts: 6,343
    edited 10/09/2014 - 8:05 AM
    You would guess right, I am happy to read that.......I don't want to see anyone accidentally overdose or die because of some interaction that they may not see coming.
    Good luck with stopping smoking.....that's a bit tougher but I have faith in you.
  • armelindarmelind South TexasPosts: 88
    So far I have been on it for 6 days and instead of daily feeling worse like I was on Oxy and Norco, I seem to feel ever so slightly better every day. I didnt think it was possible.

    Saturday was a band practice night. During and afterwards I wasnt dreading the hurting I was going to be experiencing later. We actually had a very productive night and my band mates all could sense my relief. I am hoping it only gets better over time.

    I do not have the same side effects I did at the beginning of this medication. So I am happy about that too.
  • Never underestimate the power of distraction... It's important to get out of your own head for a while. It has been a tool in my chronic pain toolbox for many years. Easier said than applied when you are barely able to take a deep breath. It costs nothing. You don't need to apply anything other than a bit of concentration... And it can really help.
  • armelindarmelind South TexasPosts: 88
    edited 10/15/2014 - 5:51 AM
    As I experience marginal pain relief for the first time, it seems like, I am noticing the fog of rage and depression and hate lifting. It is ever so slight but I feel like I am seeing sunshine and breathing fresh air for the first time in a VERY LONG WHILE. I am not not constantly thinking of things I HATE about my spouse and my self. I can see "hope" on the horizon for the first time in months or even years. Lets see how long this lasts.
  • I am glad that you are getting some relief........even just a bit of relief can change how we view the world, ourselves and our lives.
    Let's hope that things continue on an upward spiral for you........I know that I will.
  • I WAS on 15mg MS contin 2 X day along with 15 mg oxycodone every 6 hours. I still hurt but looked forward to the 1-2 hour breaks when meds first kicked in. The combination of those two meds along with the nerve blocker and muscle relaxant and klonopin a sleep inducer was the only way I could sleep for 6 hours most nights. Now they have taken me off all narcotics and the klonopin and I think I would rather die. That new law has all the doctors around here spooked or something. But its cruel. Totally cruel. I don't even want to move and sleep does not exist anymore. I don't know what to do either. But I have a feeling this isn't going to cut down on the deaths from narcotics but only increase the deaths from lack of.
  • armelindarmelind South TexasPosts: 88
    I haven't noticed so much of a major reduction in pain but my stamina has increased and I just notice that I have a better mood about stuff. The only thing I hate to see go is my excuse for not doing something haha. Now that I feel much better, there is no excuse to not want to go somewhere. But if I am enjoying life a bit better, then I guess doing something I don't want to do wont be as bad. Still having problems sleeping tho...but the intense pain after a spell of insomnia isn't as bad as it was before. I am just a bit moody right now from lack of sleep last night but I don't have the same dread as before.

    Another thing I noticed is that I can tell my body still has the same problem but the pain is masked. I mean to say that the pain is veiled in a "shadow". I cant think of it any different. Well possibly if any one has ever had a SEVERE migraine, I know notice when its gone that I can still feel where the migraine was. It seems like the migraine was blood vessels in my head had with so much pressure, they felt like they would burst and later, when the pain is gone, you can feel that the blood vessels were strained but not anymore. Its like a ghost image of the pain. That's how my nerves in my pelvis feels. I can feel the pressure inside me but the pain is being filtered in some way but I am still getting a sense that there is pain that I cant feel. I guess like getting a tooth pulled but you still have the Novocain in your system. You know there is pain but the meds block it.
  • sandisandi Posts: 6,343
    edited 10/20/2014 - 2:30 PM

    I am not sure why you were on the medications, since you don't say, but many doctors are not comfortable with combining opiates with benzodiazepenes because of the risks involved in oversedation and respiratory suppression.Klonopin is not a sleep aid, it is an anti anxiety medication.
    There are over the counter remedies that help you get to sleep, without being addicting, that can be found in any pharmacy or drug store......zzzquil is one that is new, melatonin, l-tryptophan is another that promotes sleep.....tylenol pm also is another that I am aware of that may help you fall asleep.
    What new law are you referring to ? There are no new laws that have gone into effect that don't allow for doctors to prescribe medications to patients they feel need them. There are however safeguards in place to ensure that the patient is taking the medications as prescribed.
  • armelindarmelind South TexasPosts: 88
    Doctors have to treat hydrocodone the same as Oxy now. Basically they are making it harder for drug abusers to get drugs. (supposedly) I havent heard about the results of that yet.

    At least thats what I am guessing they mean by "new law"
  • All that change did put hydrocodone products into the same schedule medication category as oxycodone or other opiates. It didn't prevent doctors from prescribing it, or patients from being given it.
    Lassryn isn't taking hydrocodone, she is taking morphine and oxycodone, so it wouldn't have anything to do with her situation.
    The majority of Doctor's that a patient has been seeing for some time, don't generally just stop prescribing pain medications to someone for no reason, so there has to be more to the story that hasn't been stated yet.
  • GP's (& others) often talk about 'Guidelines' making them sound like law so her doc could be saying "I can't prescribe over 3 months" but until they give us more info we don't really know what's happening or how we can help. Some clinics have changed their 'rules' & are stopping prescribing narcotics. No LAWS though...
    Osteoarthritis & DDD.
  • armelindarmelind South TexasPosts: 88
    edited 01/13/2016 - 11:06 AM
    I cant remember writing most of this good stuff. It is now Jan 2016. Funny thing about all this is in this post I am mostly saying I feel better (at least towards the latter posts), that is no longer the case. Starting in December 2014, I started hitting new pain thresholds. Every few months I would hit a higher threshold of pain and it would stay and not go away. After a few more months, it would raise again then again.

    Now in 2016, I am more overweight than I have ever been, I have very little stamina. Many of the normal things in life seem to be too hard to accomplish every day like it was before. For example, taking a shower is now a task that takes much of the strength I can muster in one span of time. By the time I get out, I have to rest. Bending to wash and dry lower extremities takes the most out of me.

    There is still much I can do but only at 10 minute intervals with periods of rest that can last for an hour or more. I can feel that my body is leaving me. My coordination has diminished alot, my balance is off. I have little or no stamina to do anything that cannot be done in a standing position. For example, messing with a carburetor on my riding lawnmower. I have tried to mess with it but by the time I get down there and comfortable, I need to come right back up because something in my back or legs feels like its going to give out.

    Anyways, I hate coming on here to only complain, but its the only place I can.
  • SavageSavage United StatesPosts: 5,427
    No problem....vent away. I agree this is often the only place to let it out.

    The Spon Theory helped me to understand so much of my own limitations.
    Ex..take a shower, rest. Easy breakfast and meds, rest. Almost everything I do has a pause and rest with it.

    If I have doctor appointment, I need to wake couple hours or more ahead of time to get meds into my system.
    No more getting up and out the door in an hour.

    Re your showers, have you tried a shower chair? ..all different sizes.
    And try hand held shower head?
    It really cut down on the "work" of the showering for me.

    I was wondering if working on carburetor might be throwing you out of alignment.
    I still and will always have the no bending, twisting, lifting and such, limitations.

    Spine-Health Moderator
    Please read my medical history at: Medical History

  • I am a women but scar tissue makes no distinctions between sexes. It's a little late for you but the research I did on the "bandaid" back solutions are not great in ANY country... I have several edical problems and yes, the back is involved, U have the symptoms of "cauda equine". I am not versed in "medical jardon", but the numbers show you're lucky if you get any lasting relief. Depression sets in. Lidocaine helps, but the effects also do not last. In other words you kinda get "immune" after a while. But I would try the least invasive approach, so no harm, no foul. Nerve blockage is not too high on my list, only because it "is" invasive to me and also, it reacts similar to lidocaine. Like lidocaine, your body reacts differently after a while when it wears off. I feel very badly for you. I had to go on disability. I now go day to day. I realize how you feel. Empathy and support from friends and family actually have proven to help a patient deal with the awful pain. I hope the best for you. I hhad to have a total hysterectomy and my pain is bad. Once again, "scar tissue" rears its ugly head. Do you or don't you? It's in the cards. I assume you take meds. Everyone is jumping on the "opiate" band wagon. We are not all Whitney or Michael. Things will get eve harder, which I cannot stress enough that a patient is NOT a drug addict. We don't "choose" meds. I can't talk about it because it angers me greatly. Try living 24-7 with the pain we endure, THEN you have the right to make decisions. Again, I am very sorry for you. We can only take so much. Doctors are afraid of being singled out and afraid of losing their medical privileges. Some down the line people such as us need a fair and corrected distinction between someone in agony and someone causing their their own misuse. God Bless. There ARE people who DO care and if you ask me, we should all join together and face Congress. I would gladly do it. Hang in, dear. Tomorrow is another day. My best to you and all.
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