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Opiods for chronic pain

Posted , 8 users are following.

Choanie
Choanie

FDA guidelines have changed and my doctor was prescribing an Opiod which really helped my severe chronic pain from multiple conditions.  Now the insurance company doesn't have to pay because the FDA guidelines don't allow this "off-label" use for chronic pain.  It is too bad that this is the case for those of us using them legitimately.  Yet, addicts can get them for short-term use, in self-help or rehab situations.  All of the billions spent to prevent legitimate use should go toward research about long-term chronic pain and the complexity of it.  What do you think?  What has helped you?

1 like, 24 replies

24 Replies

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  • cassandra21392
    cassandra21392 Choanie

    Posted

    Right now I am on nocor 7.25/325mg.....no it doesn't help the

    pain that I am feeling in my buttock,,,burning pain especially at night.....heat pad not helping either......I will ask my MD when I see him this month

  • kathy07828
    kathy07828 Choanie

    Posted

    Well, I guess that's why I got a letter from my insurance company that they will no longer fill the headache medication I've been taking for over 25 years. It says I have to see if my Dr can appeal it if I ever want it again. Ridiculous.
  • marie04822
    marie04822 Choanie

    Posted

    I am on hydrocondone 10. I take 1 in the AM and 1/2 one in the PM.    I, hopefully, will get a spinal cord stimulator implanted soon.  The hydrocondone worked fine at first but not so much now.   It is also bad on my Liver, among other organs .  I am resisting using a stronger dose. There has been a lot of negative news on opioids. It would be interesting to see what they would say if one of "the mouths" experienced chronic pain for any period of time.  Good luck to you.

    Marie 

  • AndreaS22
    AndreaS22 Choanie

    Posted

    Quick question... I was wondering if anyone has been told that they may have fibromyalgia, or if that diagnosis has been ruled out? Maybe something to put to your GPs  or pain specialists next time you see them. It's just a lot of the symptoms here would point toward it, or sound similar to those associated with fibro, and it would be a legitimate label for insurance companies.
    • Choanie
      Choanie AndreaS22

      Posted

      I definitely have Fibromyalgia and was diagnosed by a pain specialist in 1997, following 3 rear-ending car accidents while I was STOPPED at traffic signals.  I was hit at various speeds.  Anyway, my physical medicine and rehab doctor tested 18 points on my body.  You had to have pain in 12 of them for the diagnosis and I had all 18!  It's NOT that I don't have legitimate diagnoses for chronic pain it is that the FDA GUIDELINES HAVE CHANGED in the past six months.  Doctors can no longer prescribe Opiods for long-term use for chronic pain.  It is complicated.  Too many people were going to doctors and asking for Opiods right away instead of starting with other medications first.  My situation applies to those who are Medicare age.
  • lindagkelly
    lindagkelly Choanie

    Posted

    So sorry to hear that. I take Gabapentin for neuropathy. And I just started amitriptyline which is supposed to help with it also.  I also take an opioid - oxycodone for chronic pain.  What are you taking that your insurance won't allow if you don't mind my asking?

     

    • Choanie
      Choanie lindagkelly

      Posted

      I tried Gabapentin and Neurontin (brand) and had adverse side effects.  I also tried Amitriptyline but gained weight and had other side effects.  I am taking Buprenorphine.  The insurance is for a specific group of retirees which I am not going to put on-line.  They used to cover it, in a limited amount.  However, since the FDA war on Opiods due to youngsters getting it from parents and grandparents and then going on to Heroine and death, they have cracked down.  Recently, many TV night news channels have been broadcasting about the changes.  Also, many seniors were abusing or misuing Opiods, so the FDA took a firm stance against the use.  The insurance would cover it if a person had an "Opiod Dependence" diagnosis, saw an addict doctor, got in a self-help or rehab situation, but even then, they would allow a small amount of it for a month and would want the doctor to get the person off opiods and on to something else.  This movement has been coming for about two years.  It is too bad as there are many, like me, with severe long-term chronic pain who have tried all other medications and modalities prior to the Opiod.  Instead of going after addicts and drug dealers, they go after patients who truly need the medication.
    • lindagkelly
      lindagkelly Choanie

      Posted

      I have not heard of this law! My pain management doctor has not said anything. I will try to find.
    • kathy07828
      kathy07828 Choanie

      Posted

      The side effects I got from neurontin were crazy too. Started out OK at 10mg and some pain seemed to get better. We gradually increased it to 40mg per day, but then half of my face (right side), went numb. Backed down to 30mg and while in the recliner, my right foot which has neuropathy, would start twitching and I couldn't make it stop! (Freaked the family out too.) I backed down and now had this even at 10mg. I guess it builds up in your body, so I went off it as it wasn't even helping with pain anymore, even at a higher dose. We tried Lyrica, and I was so spaced out I could hardly move until 20 hours after the first pill. The dr said to continue and see if my body would adjust, but I'd had enough. Couldn't even watch TV. The Dr's tried this on both my mother and mother in law, and they had the same response. I often wonder how many older people that seem confused and out of it, and are then diagnosed with dementia,, are in reality just experiencing symptoms brought on by these type of drugs.
    • Choanie
      Choanie kathy07828

      Posted

      Interesting about Neurontin and the way it affected you.  Lyrica really has some back side effects.  Fluid retention is one in the hands and feet.  Also, if you can't digest watermelon, you should not be on Lyrica.  I had a severe reaction with fluid retention and Lyrica.  You are right, I think that medications can have bad side effects.  Those of us who have means and time to do the research are lucky.  Not everyone does or is in to it.
    • Choanie
      Choanie lindagkelly

      Posted

      It relates to those on Medicare whose drug company is Optum Rx.  Every year they send a book stating what medications are on their "formularly,"  That means the medications they will allow you to get.  It can change monthly!  Each medication has a tier-it goes from tier one to tier four.  Some medications require "prior authorizations" for you to get them.  If approved, they are approved for one year from the date.  The following year you have to get another "prior authorization."  It is very complicated.  If you aren't on Medicare for social security disability or due to age and getting social security, then it doesn't apply to you.  Learning the terminology and "the ropes" is very time-consuming and complicated.  The bottom line...it is a shame we cannot get the medications we need, at prices we can afford, to feel better.  Not only that, it is a shame that pharmacueticals make billions and we are all charged different prices for the same drugs.

      What I referred to before is NOT a law.  It is a guideline.  It is very complicated.  The FDA approves certain medications for certain uses.  If they don't approve a drug for a certain use, the insurance company cover a group of people, can deny payment and there isn't much you can do.  I don't really want to get into it because it would take alot of explaining and if it doesn't apply to you, you're lucky.

    • lindagkelly
      lindagkelly Choanie

      Posted

      Oh, it's buprenorphine.  Yes, I used to take that - for about 4 or 5 years.  It worked great, never had to increase it, but I can't get my insurance to cover it either.  So I'm on oxycodone which is much worse.
    • kathy07828
      kathy07828 Choanie

      Posted

      I totally agree. Hang in there. Your insurance seems like a Medicare perpetuated fraud to me.
  • cynthia70714
    cynthia70714 Choanie

    Posted

    Choanie,

    Hi I've been on pill form of methadone for 20 something years, as I went through trial and error with Amy pain killer you can imagine. They would have me on 2 or 4 different ones 4-5 times a day my body would get used to it and I was on the same thing trying to find something to help finally my neurosurgeon suggested methadone cause it's blocks pain receptors but for the herion addicts it blocks the urge to use, I've been looked at funny every time I would Go to the emergency room and Drs would just think I'm a junkie, it got to the point were my ex boyfriend pushed the dr in the corner and was like I've been with my girl for 3 1/2 years and I've seen here pain level and how she cries she is a human being in serious pain, he said why don't you look at a chart before you assume, left me in a gurney for 4 hours no one paid no attention to me finally when I was in the room the dr came in crossed his legs and said so what drugs you do? Really snotty, I said excuse me, he said your on methadone aren't you? I said yes for pain, he said bull you are in Street drugs, omg I started getting so upset and crying and I was like you did not read my chart for one and see I'm in pain management because I can't do anything else, well a phone call to my lawyers n boyfriend straighten him out but the nerve of Drs judging, I mean after all that I had the best care I had to go to the bathroom for about 3 hours and it was so bad by the time everything was straighten out I overfilled the bed pan, so embarrassed, thank God I didn't get it on my clothes, dr gave me the best care after that x-rays this that apologized like 10 times, it's amazing being on something labels you, plus I am on valium oxycontin zanaflex migraine meds arthritis meds I just hate being looked at like I'm a junkie which I never ever touch anything like that petrified of needles biggest baby ever, and now I have to have a revised surgery on my stimulator nervo because it's pushing literally out of my back, and it's has to go in my stomach and just sit off, til he decides what other machine he's going to put in yet, which I think the problem of my pain that got off the charts has to do with this stimulator, just didn't feel right from day one, and he tells me trial and error that's how us Drs learn and I knew you would fail if you knew why doviy?!? Makes no sense to me, lab rat Guinea pigs, I'm just so tired of pain in general, I actually broke down and criesd today csurgery its like hofeel like my pain is so bad that my poor grand babies don't get the best of me, so I'm in new Mexico til the 18th of April go home wake up go to Drs appt. And 9 days later surgery it's like how much more can my body handle it or take?! But I'm going to do my best and enjoy my time with all my babies n son in law, so til the next surgery, I'll keep updating on my progress. Hope. You all better pain free days ahead

    Cynthia ( Cindy,)

    • kathy07828
      kathy07828 cynthia70714

      Posted

      Hi Cynthia, I think I responded to you earlier about this Nevro. I've been doing lots of research, because my pain Dr also just wanted me to try it, as if there would be no consequences to me, causing more pain. First, the Dr's here in the US seem to be totally unaware of the post surgical pain management and physical therapy proocal that was followed in the 2010 UK trials so that the drs and specialists could evaluate each patient to see if they could fine tune anything to help them, and if they would not be successful with this product. They just put them in an see what happens, (getting paid well for it), and then try to deal with iproblems that arise with more surgeries before they finally admit it's not working for you. (Putting lots more money for performing these procedures in their bank accounts.)

      If you are a highly sensitive person, have certain types of arthritis or have fibromyalgia, your nervous system is already functioning on overdrive and not functioning normally anymore, and will only be reactive to this. Your body may have pushed the battery out with muscle spasms in response to the nervous system response. If you've already had any abdominal surgery with scar tissue, it will further complicate a successful outcome from relocating the battery there. It's bigger than my cell phone! Just things to think about before you try this again.Sending a prayer your way. ~kathy

    • Choanie
      Choanie cynthia70714

      Posted

      Several of my doctors suggested Methadone, too, for break-through pain with Opiods.  However, I have a problem with constipation and cannot take anything for it because it all contains many forms of sodium.  I have severe edema, lymphedema, and peripheral edema, so I have a lot to manage and have to be very careful.  
    • lindagkelly
      lindagkelly cynthia70714

      Posted

      Hi Cynthia - I used to be on buprenorphine and I never had to increase it and it worked, but my insurance won't cover it.  I tried methadone once and it worked - I mean it really worked! But my kids had such a fit I stopped taking it - cold turkey -oops - ended up in the hospital in a rehab facility to get off it - and the doctors were HORRIBLE to me.

      ​You should have seen the stuff one of the doctors wrote in my chart.  He kept drug testing me several times a day because he was sure I was taking other drugs - which I wasn't.

    • Choanie
      Choanie lindagkelly

      Posted

      OMG, that's awful.  Even though my pain isn't controlled and is at a level that it makes me sick to my stomach and want to scream late at night when it escalates, I wouldn't try Methadone just for the fear and reason you stated above.  One doctor told me that's what the addicts take and it really works.  I would be afraid of addiction and what you went through.  Sometimes, the addict doctors, are ones who have had problems themselves and then turn around and judge you!  They, have control over you and your situation, passing judgment on you, just like you have indicated.  I am so sorry.  It's disgusting!  
    • lorelei24
      lorelei24 kathy07828

      Posted

      I have a diagnosis of MS, since 1985; and, also, fibromyalgia since having an L-4 L-5 fusion for degenerative discs.  I am concerned about the discs above and below, plus the sensitive nervous system, since  my PM is recommending an SCS for sciatica and back pain.  I am concerned.  What do you think?
    • kathy07828
      kathy07828 Choanie

      Posted

      Spinal Cord Stimulator. There are other forums here discussing them. They seem to work wonderfully for some and make things worse for others.

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