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denied pain meds

SteveSSteve Posts: 73
edited 06/11/2012 - 8:48 AM in Chronic Pain
Hello all, I'm in a real situation and would really appreiciate any feedback. Thank you very much.

Here we go..

I am a paraplegic who has some how ended up disconnected from the pain management community, since a pharmacist with an over active imagination told a doctor that I was "doctor shopping."

I can tell you that in my 11 years in a wheelchair, suffering from neuropathic pain secondary to a SCI, I have never abused a prescription and can prove it. Now the university hospital that I was establishing myself with has seized the script for Opana they wrote and broken all bridges with me. I feel like I am alone floating in the middle of the ocean. Thank God for spell check because I'm in such blinding pain that I feel as if I'm writing and spelling on a fourth grade level..

My GP has since called the pharmacist to tell him that I was in fact not shopping, rather just following the bouncing ball of referrals. Now satisfied that I am legitimate, the pharmacist is actually trying to help me find a PM doctor. However, the damage is done and I have gone four months without pain meds, with the minor exception of 2 Vicodin a day from the GP.

I might tell you that my previous doctor of three years has lost my records. Most likely because he was giving me enough meds for Anna Nicole Smith, although I would either not fill them all, order them every 45 days or just put them aside for a rainy day. That rainy day has come and gone. I'm sorry if I am over selling my situation, but I have been put in that situation so many times that I feel as if I have to prove that I'm not a junkie. By the way, that's the reason I'm a T-11 para. My doctors though I was faking, turned me away and two days later I slipped a disc while sleeping which ruptured my spinal cord.

Sorry for the epic email. I wonder if there is any guidance that you can give me. I need to be treated. The local PM center won't accept me and even the ER has turned me away. Now I am doctor shopping!, shopping for a doctor who will help me! Have I been centrally blacklisted? Is there such a thing? Do I have any legal recourse? I am so frustrated that I want to make the responsible parties hurt as much as I have.

It is perhaps a good thing that I see a therapist, although part of that deal is that I must meet with their physiatrist once a month for 15 minutes. When I asked him where they refer PM patients he said he was going to report me to the DEA. What on God's green earth is going on....

Thank you so much for indulging me.





  • Sorry your having so much problems, Steve. It's bs that someone with your condition is accused of "faking it". Proper pain management is so hard to come by these past 2 years. I don't how your psychatist can threaten you with the DEA. You are not doing anything illegal. It is your right to not be in pain. All I can tell yu is to keep trying. Do you need a GP referral to get into pm? Cause if you do, your GP's job is to do that.
  • Sincerely - there are truly times I wish we could reach out and take someone else's pain away.

    I know that my Dr and pharm work together and I also have a pain psycol that steps in when I ask - to evaluate me. He was the one - who interviewed me over a couple of visits and then told me GP that I had no issues with narcs and that I do have pain, it shows and to start trials of meds, to get my activity level increased from zero.

    It took awhile to sort out! The fact that your phar is back on your side, should allow you to repair your relationships withe the rest. Ask him/her - if he will help repair things.

    In the interim - just know that others know what you feel. It is never easy!
  • Can you check out a SCI rehab hospital in your area? I hope you get the help you need. Best wishes. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Oh Steve I am really sorry that you are going through this!! Total BS!!! Oh and Welcome!!

    I can understand you wanting the other person to hurt with you, very normal and understandable feelings I think!! I hope you find a new Dr soon and can get some release!!!

    Please keep us updated!!
  • I am so sorry to hear you are in such a mess Steve. I know very little about PM clinics as to what they can or can't do.
    Since you do not have your records you may have to start over again bt asking your GP to refer you to a Neurogoist for tests. Check online for a PM and ask your GP to refer you. Do not call yourself but I am sure you already know this.
    Will your GP up your dosage of the Vicodin until you find a new PM? Can you explain to hem/her that is just not enough to cover your pain? Your GP can't refuse to treat your pain as that would be unethical.
    I am sorry I do not more to offer. It is so difficult to get chronic pain treated as it is. It is a roller coaster ride for sure.
    Have you ever considered a pain pump implant or would one work for you in your situation? You would not need a PM for this. A good Neurosurgeon could implant one for you and take care of your refills and increases.
    Best to you Steve. Please keep us updated.

    Patsy W.
  • Hi Steve :wave:

    OMG! I am SOOOOO SOOOOOO sorry for all you are going through :(

    Maybe I am understanding you incorrectly, but was your PM through a hospital or a group? If so can you file a grievance hearing with the ethic board?

    Maybe the pharmacist who started all this crap needs to call the PM place he screwed you up with and say "hey I was wrong" and help you get back in there.....

    Please keep us updated as you can. You will be in my thoughts & prayers :hug:
    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • Thank you so much for taking the time to reply. It really does help to know that others are out there who understand me. As you probaly can relate, we end up not talking to friends and family because we don't want to tell what were going thru, as they can't do anything about it. We don't want to burden others. So we end up isolating.

    Once again, thank you for reaching oaut. It REALLY does mean alot! I wish you the best with your situation as well.
  • Thank you so much. All the support does help my phycy.

    I saw a PM today who seems real and in the biz for all the right reasons. I have to wait until the follow up in one week for meds, although I am concerned that he may under medicate me.

    As people with neuropathic pain will attest, the only truly effective therapy is opiods. SSRIs, tricyclic antidepressants and anti seizure meds are fine adjunctive approaches. This being said, we do need to keep and open mind.

    Sincerely, thank you for caring. It means a lot!
  • Thank you for replying,

    That's really sound advice. I don't know if a pain pump is indicated, but I will exprole it. What time of meds does the pump supply?

    All the best,
  • I sure will keep you guys posted. It was a hospital. Thanks for your reply. It all helps.

  • Unfortunately, when it gets severe enough, you need to use EVERY tool- meaning nerve pain meds, opiates, and other methods as well. There are many of us who have found that no one treatment can be successful (Ron has a post about it somewhere).

    Your new doctor might want to start low to make sure he's on the right path, but if he's a good doctor, he'll do the right thing. I am glad you found someone!

  • It really is cathartic sharing with peolpe that understand you. Thanks for your reply.
  • Glad you found us! Here is the link to Ron's "Blend" that HappyHBmom mentioned, it might have some valuable ideas for you:

    That's great that you found a good doctor who is willing to help you. As for now, a little amount of meds is better than none, right? It's progress! And you're right, the main thing is keeping an open mind about what your doctor may have planned. It is trial and error for most of us, and if you're like me, patience is thin most of the time. Just hang in there, and with some of the things that Ron mentioned in the blend, you will find relief. And we are always here!
    Good luck with the new doc, take care.

    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • That's the one :) I find at its most severe, I have to use everything on the list to combat my pain, from meds to heat to distraction. The medications were the hardest to get and the most emotionally charged, but once you are safely ensconced in pain management they are simply a part of the blend.

    Hopefully you'll be there too, soon :)
  • To keep an open mind. Although if I had my way I would take the following

    Opana 30 mg bid
    Lyrica 25mgs big, titrating up as tolerated
    Vicodin 7.5/750 as needed for break thru pain
    Cymbalta 90mg

    I would only need 1.5 Vics a day with that regimen. Does this seem excessive?

    Thank you all for your input, by the way, my level of injury classically is the most painful of the SCIs.

  • Do you think I have legal recourse with any of these jerks?

    Thanks guys. Every bit does help. Maybe someday the criminalization of pain will end.
  • Steve said:
    Thank you all for your input, by the way, my level of injury classically is the most painful of the SCIs.
    No doubt!! I was actually shocked when I read that you are on no pain meds!
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • I don't know, can you prove anything? Especially as regards losing your chart? I'm not a lawyer, but usually you have to have some evidence that they did something on purpose or grossly negligent before you can sue.

    Definitely file a complaint.
  • Although I can't help but want to may these people really pay for this systematic mistreatment of us. My dog gets better medical care, and I really mean it. His care is immediate. I wouldn't accept anything less for him. I love my dog as you might gather. But why is it considered ok for people to treat us this way? My wheelchair is not my Halloween outfit.

    These dr.s need to see a limb hanging off you to understand your in pain. Something is seriously wrong with the system and God forbid your poor! On the free clinic level there is no such this as pain mngmt. I'm fortunate enough to have private insurance, but when I didn't, I was treated like a junkie. At the ER the witch of a Dr. I saw entered the exam room with her arms folded. I told her I have vics, which I felt was my obligation, 2 a day. She refused to give me anything else and probably told the other Dr.s "here we go again, another addict." thanks for letting me vent. I don't like the person that I'm becoming and I blame the system. If I can get down the a 3 or 4 on the pain.scale I would be the happiest most positive guy in the world.

    All the best,

  • Why don't doctors understand? It's a rhetorical statement of course. But It is so edifying to be understood by someone. These people will have you thinking its all in your head.

    All the best-

  • Isn't it? In our heads I mean. We get pain somewhere, a message is sent to the brain, it agrees (ouch) and sends the pain message - we say ouch! Sorry, trying to cheer you up a bit. 8>

    I've been reading your thread. Since the Pharmacist is the basic catalyst to all this, have you and he had a sit down to unfubar what he has started? I am one that goes to the base of the issue.

    Given your current obvious medical status, I am dumbfounded as they say. *HUG*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Steve,

    I hate to admit it, but my "fur kids" medical records are kept better than some of us "human" type records! Pretty sad if you ask me!! And our doctors treat ONE species, and the vet, goodness knows how many!!!!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • That's great that you have found someone!! Everyone on here will be hoping for the best for you.

    You are correct...it takes a blend of meds to help your pain and you have to jump through hoops to get treatment.

    I do not know if a pain pump is used on paraplegic's but it would be ideal IF you can have the inplant. It's worth asking this Doctor about. Pain meds used in them is usually Morphine but Diladuid, Fentanyl or Prialt is also used. You can find a lot of information about them under the "Pain Management" forum or type pain pumps in the search box at the top of the page click "GO" and find a long list of comments about them. As I said....I do not know if a pain pump can be used in your situation but it's worth exploring.

    Best of luck to you Steve. Thanks for keeping us posted.

    Cheers :H
    Patsy W

  • I've been very lucky that my surgeon has handled my meds for over two years, but then again, I've only upped my pain meds once in that time and changed to a strong muscle relaxant since my lumbar surgery, on an as-needed basis.

    I can understand the new PM doc starting on the low side, but let's hope when he finds that you're not getting the relief you need, he'll work with you to change/up the doses and meds until you find exactly what works for you. Like some others here, you may need to occasionally change meds to keep the strength working so you don't have to eventually go up to 500mg LOL.

    Yes, we understand you here and are on your side. Please keep us posted - we're rooting for you to get the pain relief you need.

  • It is in our heads. That's why I find it laugable that my dr.s try forcing lidodrm patches on me and don't understand when they don't work... At least not for me.

    My best analogies is the following-

    Go into the basement of the Empire State Building, and find the bundle of phone lines. Chop at it a few times with a huge ax and see what happens. Some floore would lose phone service completely while other phone would ring intermittiningly from the electrical shorts created. Since it's Halloween, they traced the call and it's coming from inside the building. lol, dumb joke? Yeah your right.
  • I always started on the low side. That was 5 years ago. Depending on what meds where being tried, I always was low. For me, I prefer to have just enough meds to drop my pain to under a 4 or 5 most of the time.

    I am never pain free, to me that has never been a realistic goal. Pain control is, so I keep a pain diary and just keep a record of what I take, and the results. I leave out emotional statements. Just how I feel. When I go into my Dr, he gets a copy of my comments. They give him something to check, what my reactions are, to what he provides for meds.

    My increases were about every month, until my mobility was increased. Since then, we have just been adding additional meds, to hit the nerve pain. Some work, with side effects.

    And yes - I was on a regimen that increased my meds, to 3 to 4 times, the level that I am on now. Once the discomfort was really under control, I dropped the meds back on my own.

    Rather than telling my Dr what I wanted, I just kept telling him the symptoms and with a pain chart, when it was affecting me, and he was in charge of coming up with a plan!
  • Thanks Cathie, I'm not sure if it's me, but I've been very lucky that once I find a does that works I ralely need to increase. Some people find that 2 vics today are fine but they need 4,5 or 10 a month from now, an extreme example of course. I'm really thankful for that. We should be thankful every bit of help we get, including the great support from folks like you who take the time to reach out with your best advice.

    Best regards,
  • Of course, the only why to make the anti seizure and epileptic drugs must be to frequently increase. : )
  • I meant to say before that I'm fortunate, like you not to need constant increases in opiods. I usually fine the sweet spot in the first month or two. Some people find that 2 vics today are fine, but need 4,5 or 10 a month from now.
  • I have still not found 3 pain levels. Once I get into real pain control, I start getting severe drowsiness. I've been at it for close to a year. Right now I'm re-trying the fentanyl patch by titrating up, so I've been a month on the 12 mcg/hr- and a painful month it has been! It is finally over next week and I will be back on the 25 (I am apparently very sensitive to Fentanyl, which is awesome except for the drowsiness).

    So if you get there, good for you :)

    Yes, I can imagine your injury is incredibly painful! Do you currently have a neurologist? That would probably be very helpful to your situation.

    The reason I've had so little trouble getting help with my pain is that I have very dramatic MRIs. Nobody who understands backs and nerves doubts for a second that I have pain when they see the condition of my back. I just wonder if you don't need the same?
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