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what is with pain mgt. doctors?

AnonymousUserAAnonymousUser Posts: 49,731
edited 06/11/2012 - 8:24 AM in Chronic Pain


hi all,

this is my fifth try at getting a pain specialist to treat me after my old one that i had for 6 years tossed me to the wolves.
i made the appt. and told the doctor's assistant aforehand I was on medications, i told them i wanted treatment and wanted to get off the medications. i just don't know who to turn to anymore and each time i get turned away by a doctor, my pain lvls spike due to the emotional trauma.

this 5th doctor turned me away even after I told him that I wanted off the medications. In fact, he told me not to stop the medications because
“you won’t be able to walk”. i asked him what i should do, that i have no life, that i need help, that i need diagnostic tests, as every doctor seems to tell me that i have a different problem. that i move so much due to lack of money isn't helping.

He shrugged and said ‘sweetie, I don’t know what to do or tell you.’. I was actually begging him to order some tests, find out what’s wrong with me.

He shrugged again. I pleaded with him and asked if he knew what kind of doctor I should turn to in order to get fixed. Who should I see? I begged. A neurosurgeon. He shrugged, perhaps. He didn’t suggest anyone. He looked over the mri report I had brought, told me that he doesn’t look at films and he only takes as diagnosis what the radiologist says. ( great, once a radiologist of an mri I took wrote that my cervix looked fine. The thing was, as my gyn pointed out, I did NOT have a cervix at the time. it had been removed a year prior).

What is it with pain mgt. doctors? Didn’t they go to med school? Are they too lazy to make a diagnosis? That’s sad. I wasted 7 years with a doctor who told me that nothing could be done, and I believed him and swallowed the meds. i had mris and tried a few specialists, but they just brushed me off after a 5 minute appt. I’m done with meds. i'm sick of feeling like a criminal. i'm sick of the stigma. but i need a doctor to treat the pain so i can get off the meds, and i need a doctor to taper me down. i can't relate to addicts, as i hate the effects of medications. i used to throw them down the toilet after surgeries the moment i could bear the pain.

Anyway, this 5th pain mgt. doctor looked at my MRI and mumbled the date it was taken. I had already told him three times it was 3 years old. since he had called me sweetie several times, I didn’t get the feeling that he took me seriously. He told me that we should get another one. Well, I asked him if we could add an mri rx for the left hip area, since the pain radiates from the left sacral area to the hip and when i do my daily exercises, i have severe pain in the joint.

He denied my request for not only a hip mri, but a sacral mri. instead, he wrote an rx for a lumbar mri, even though I told him i have no pain in my lumbar area and any mris i've had in the past 5 years never showed any sign of disc degeneration. he wrote on the mri to specifically look for disc degeneration. then, he explained nerves, saying he was looking for a specific one in the lumber.

I had told him several times that my pain is very localized. I told him that I had marcaine, an 18 hour anesthetic injected in right where the pain was localized and that I was able to instruct the radiologist to the exact nerve that was causing the pain. he kept shaking his head as if what I was saying didn’t make sense with his limited knowledge of back pain.

I told him that if a radiologist could anesthesize the nerve and make me PAIN FREE FOR 18 HOURS then SOMETHING should be able to help me for longer. i told him i had read about procedures like radiofrequency ABLATION or epidurals.

He shook his head and said, then you should go back to the radiologist who injected the anesthetic. I told him that the radiologist was in California and I can’t get there. i'm in nevada. He shrugged. again.

i again asked him to prescribe an rx for a sacral mri and told him that the one in santa Barbara that he was allegedly redoing because it was old was a mri of the sacral/cocyyx where my pain is located.

I told him that i had been diagnosied with sacriliitis and i had already been to the mri lab and that the radiologist sent me home as the lumbar mri did not corrospond with the diagnosis or where the pain was. i mentioned again that I had NO PAIN IN MY LUMBAR.

He said that if nothing shows on mri, he would perform an injection to diagnose sacriliitis. he chided me and told me that he knew best and I shouldn’t question him. He showed me the little nerve and called me sweetie again when I tried to tell him again that the nerve that hurt was not anywhere near the lumbar.

Sigh…..

obviously, he doesn’t want me for a patient. Probably figures that I will find another pain doctor if he drags things out. The receptionist didn’t even bother making another appointment with me.

I’m ready to give up. How much more of this rejection, this total lack of care, can I take???????

everyone knows that pain increases with stress. i've been treated worse than garbage from 6 pain doctors so far.

i don't know what to do. i don't know where to turn. my gp has sent out at least 10 referrals and those doctors say i need an mri stating what's wrong before i go.

does anyone know what kind of doctor i should go to? i know i have very localized nerve pain in the left sacral area that radiates down to my left hip and have pain in left hip when i do certain exercises that cause no pain in right hip.

i feel as if my entire skeleton is out of whack and am constantly stretching and twisting my left leg in order to release pressure. i can feel a slight relief, so i know a nerve is being pinched.

do i go to an orthopedist? a neurologist? if i check myself into a hospital for pain, will they do tests? i'm at a point where regardless of the fact that my pain medications were working in march to the point of getting my pain down to lvl 4 - 5, i want to be off meds. i don't like feeling like a criminal anymore. but i hardly bear the pain in the sacral/hip area even with the meds now that my nerves are shattered and i'm in a chronic anxiety due to not having a doctor and being treated like trash.

i just don't know where to turn. i need dr. house. i am beginning to think that i will end up dead. i can't tolerate this pain anymore.

any suggestions... i'm on medicare and medicaid and i don't think doctors like that either. and i am now in too much pain to drive anymore. i'm so afraid that i'm going to end it as i cannot live in this torture chamber that is my body anymore.

i can't help it if technology can't find out what's wrong with me. a chiropractor told me that i have a severely twisted pelvis. i just want some tests done so i can get a diagnosis and start treatments so i can be somewhat functional again.

the pain is so bad now that i cannot even concentrate enough to read.
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Comments

  • Did he order the MRI? He'll call you back if it's abnormal. I don't talk much to The Dr. as he asks questions and does a thorough exam. At the end he asks if there's any questions. Don't worry so much about getting off the meds. If you're in too much pain go to the ER. Do you hace a family Dr. yet where you live? Don't give up as a solution can be just around the corner. Take care. 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
  • Try a neurologist. Do not give up as that is not an option. I know that there are tons of incompetent docs out there but you will find one that can help you. Maybe this doc is one of those with a God complex and did not like the fact that you were telling him what you needed to be done. I wish that you were is the Southeast as I know that my PM could and would help you. He is very compassionate and will not even turn away uninsured patients that need him. He has a special fund set up for it. If I were in your shoes, my next stop would be a neuroligist or neurosurgeon. A local GP would be a good idea also as they can also order MRI's and refer you to someone that can help. Be strong and keep going to docs until you find the one that can help. If you must stay on the meds until you find help, than so be it. Good luck and please keep posting when you are able.
  • Hi Gabriella,
    Some people that have a disc problem (even a herniation) have no back pain, and they experience it only the the nerve. When I herniated my L4-5 last year and the MRI showed it, there was still inconclusive in the doctors' minds if it was causing the pain. I was treated still, with PT and meds. My surgeon had me do a CT/Myelogram which is more detailed than an MRI but invasive, and it proved the nerve was indeed compressed. Then, I was a surgical candidate and had a microdiscectomy.
    I think that maybe you should let that doctor do a lumbar; at least it will rule out some things, or find the culprit. I do however find him not looking at the films odd. What they usually do is do a complete exam, and THEN look at the MRI film and report to see if the findings on the physical exam concur with the findings in the MRI.
    Whatever you decide to do, we are here to support you.
  • Gabriella said:


    ( great, once a radiologist of an mri I took wrote that my cervix looked fine. The thing was, as my gyn pointed out, I did NOT have a cervix at the time. it had been removed a year prior).

    Hi! I work for a spine center and have had back surgery as well, and am now facing a discogram! (fun) I saw some of what you wrote, and just thought I would clear something up for you. The doctor was probably talking about your cervical spine, which is the top part of your spine. The neck down (I don't know how far) I know....Why did they name it that!!! :?? When I heard that the first time, I thought of the cervix too!! Ha! Ha! I hope you are finding some relief somewhere. :)))

  • i wish he were talking about the cervical spine, but this was at a time--2000--when i was getting tests via my gynologist. they were specifically looking for reproductive organ problems, as the next step was that my uterus was removed, as the gyn thought it was enlarged enough to cause pressure on the spine in my nerve. it wasn't a mistake.

    thanks all. i already called a neurosurgeon. they need an mri that shows a problem.

    maybe i'm jaded by now, but after being given the runaround by 4 doctors, fired by the one i had for 6 years, i just don't trust them.

    i can't drive without pain and sitting in waiting rooms is horrible. i can't believe that i'm begging doctors to help diagnose me. yes, i should be on pain medications, and certainly should not be told to get it from my gp. the problem with my gp is that he is being investigated.

    all the pain mgt. doctors are in a scare right now.

    i know where the pain is; i had a lumbar mri 3 years ago. it showed nothing. insurances won't approve 3 different mris. i need a doctor to listen to me....

    why is that so hard?

    i wish i were in another city as well. i hate this city and i'm only here because i was dumped here by my ex-fiance. and i'm in too much pain to move.

    i hope this next doctor helps, or at the very least, orders an mri and x-rays that will help.

    one of the pain doctors told me that for my condition an mri won't help at all. he told me to get regular x-rays as my scoliosis is so severe.

    no one will treat me without a diagnosis. no pain mgt. doctor in my city--due to the scare and the doctors being sued and the newspaper headlines--wants to take on a patient who is already on a high dose of medications.

    i know i'm being tossed to the wolves and it hurts.

    my whole trust in humanity is gone. my faith is leaving.

    i just hope this doctor helps. this is my last one. i can't go on being yelled at. 2 of the doctors didn't even bill me as they didn't want any record that i had been in their office and not treated. one made me sign an agreement that we would not enter a patient/doctor relationship. (and this was after i told him that if he would give me some treatments to ease the pain--injections or whatever--i would deal with the pain of cold turkey off meds.)

    i don't get it. i'm hurt to the core and the pain just gets worse every day. i'm sick of being lied to. i'm sick of doctors telling me to get medications somewhere else. i'm just sick of my body hurting. i haven't smiled, let alone, laughed in 4 months. i have no life, no viable solution to pain.

    if i tell the hospital how i feel, they will ignore the pain and throw me in pysch ward for suicide watch. if i minimize the pain, they'll just give me some meds to tide me over and throw me back to the doctor search.

    i don't know how much of this i can handle anymore.

    my one friend is so shocked that she thinks i need to call a lawyer. i don't have the energy.

    i will, however, call the newspaper reporter whom i talked to 2 months ago. i told him that the reportage on my gp was making it impossible for a doctor to take me as a patient and i must not be the only one. i told him people will start dying.

    i can't live like this for another year like i wanted to. i need some hope.

    i need a doctor to just tell me that he will TRY TO FIGURE OUT WHAT IS WRONG. not in a snide way that could just as well be telling me get out of my office. but in way wherein i know he will help.

    i can't even get an appt. with a therapist--there are only two within 15 minutes of me--because no one wants to take medicare.

    i guess the hospital is the only way, but that is not permanent.

    at this point, i am so disheartened that had i had the funds, i would check myself into a pretty sanitorium and stay there for the rest of my life.

    no one should be treated like i've been treated. no one in pain, and no one even who doesn't have pain.

    i just hope that the notes i've taken from each appt. are coherent enough. maybe i'm supposed to be a martyr. maybe i'm telling myself that so i won't die in vain. i don't know.

    i'm so ashamed that i feel so low. i'm ashamed that i have pain.. my parents resent me for it. i overheard them talking and they actually said that if i end up as a suicide it might be a relief in a way.

    i'm just a burden and the fact that doctors don't even want me is too much for me to handle.

    i'm sorry for this horribly sad post. i'm so sorry.
  • i wish he were talking about the cervical spine, but this was at a time--2000--when i was getting tests via my gynologist. they were specifically looking for reproductive organ problems, as the next step was that my uterus was removed, as the gyn thought it was enlarged enough to cause pressure on the spine in my nerve. it wasn't a mistake.

    thanks all. i already called a neurosurgeon. they need an mri that shows a problem.

    maybe i'm jaded by now, but after being given the runaround by 4 doctors, fired by the one i had for 6 years, i just don't trust them.

    i can't drive without pain and sitting in waiting rooms is horrible. i can't believe that i'm begging doctors to help diagnose me. yes, i should be on pain medications, and certainly should not be told to get it from my gp. the problem with my gp is that he is being investigated.

    all the pain mgt. doctors are in a scare right now.

    i know where the pain is; i had a lumbar mri 3 years ago. it showed nothing. insurances won't approve 3 different mris. i need a doctor to listen to me....

    why is that so hard?

    i wish i were in another city as well. i hate this city and i'm only here because i was dumped here by my ex-fiance. and i'm in too much pain to move.

    i hope this next doctor helps, or at the very least, orders an mri and x-rays that will help.

    one of the pain doctors told me that for my condition an mri won't help at all. he told me to get regular x-rays as my scoliosis is so severe.

    no one will treat me without a diagnosis. no pain mgt. doctor in my city--due to the scare and the doctors being sued and the newspaper headlines--wants to take on a patient who is already on a high dose of medications.

    i know i'm being tossed to the wolves and it hurts.

    my whole trust in humanity is gone. my faith is leaving.

    i just hope this doctor helps. this is my last one. i can't go on being yelled at. 2 of the doctors didn't even bill me as they didn't want any record that i had been in their office and not treated. one made me sign an agreement that we would not enter a patient/doctor relationship. (and this was after i told him that if he would give me some treatments to ease the pain--injections or whatever--i would deal with the pain of cold turkey off meds.)

    i don't get it. i'm hurt to the core and the pain just gets worse every day. i'm sick of being lied to. i'm sick of doctors telling me to get medications somewhere else. i'm just sick of my body hurting. i haven't smiled, let alone, laughed in 4 months. i have no life, no viable solution to pain.

    if i tell the hospital how i feel, they will ignore the pain and throw me in pysch ward for suicide watch. if i minimize the pain, they'll just give me some meds to tide me over and throw me back to the doctor search.

    i don't know how much of this i can handle anymore.

    my one friend is so shocked that she thinks i need to call a lawyer. i don't have the energy.

    i will, however, call the newspaper reporter whom i talked to 2 months ago. i told him that the reportage on my gp was making it impossible for a doctor to take me as a patient and i must not be the only one. i told him people will start dying.

    i can't live like this for another year like i wanted to. i need some hope.

    i need a doctor to just tell me that he will TRY TO FIGURE OUT WHAT IS WRONG. not in a snide way that could just as well be telling me get out of my office. but in way wherein i know he will help.

    i can't even get an appt. with a therapist--there are only two within 15 minutes of me--because no one wants to take medicare.

    i guess the hospital is the only way, but that is not permanent.

    at this point, i am so disheartened that had i had the funds, i would check myself into a pretty sanitorium and stay there for the rest of my life.

    no one should be treated like i've been treated. no one in pain, and no one even who doesn't have pain.

    i just hope that the notes i've taken from each appt. are coherent enough. maybe i'm supposed to be a martyr. maybe i'm telling myself that so i won't die in vain. i don't know.

    i'm so ashamed that i feel so low. i'm ashamed that i have pain.. my parents resent me for it. i overheard them talking and they actually said that if i end up as a suicide it might be a relief in a way.

    i'm just a burden and the fact that doctors don't even want me is too much for me to handle.

    i'm sorry for this horribly sad post. i'm so sorry.
  • There is no need to apologize to us. This is where you can come and say what ever is on your mind. Without being judged or frowned upon by any of us. I am really at a loss that your parents made that comment. Maybe they just do not know what to do for you and it is hard to see you suffer. That still is no excuse though. I really can't figure that one out. Do you have any teaching hospitals anywhere near you that you may be able to get to? They will not turn you away because of funds and sometimes, especially when problems are hard to diagnose that is the best place to go. Usually a teacher is the main doc but the students are also involved in your care. These students are not burn out and hardened yet and really do put forth some effort in helping and diagnosing. I live by one of the best Medical Universities in the Southeast and can tell you from experience that this is where the rest of the Southeast sends patients that are in extreme circumstances. I really wonder if there is any way at all for you to get to one that they may help. lots of times they even provide a place for the families to stay so I am not sure but maybe they could provide a place for you to stay while undergoing treatment? It would be worth checking in to. Try and keep your chin up and please keep posting. If it takes checking yourself in to a psychaitric facilty to keep yourself safe, please do not hesitate. Remember, the only real hopeless place to be is dead.
  • thanks for all the support. this sixth doctor at least did an exam. he actually said that one of the doctors i went to didn't know what he was doing.

    i'm just so scared and i'm impatient. the pain isn't even managed with the meds i am on and the stress of having to cold call doctors, sit in pain in waiting rooms for 3 - 4 is getting to me.

    i keep trying to tell the docs that i know what the pain is and where it's coming from and what i'm pretty sure would work. they don't seem to understand that my life consists of lying in bed in pain all day and a second appt. over a month away--which means i won't have pain medications anymore and can't even imagine that--is causing so much panic that the pain isn't managable.

    i don't know why a doctor won't rx a normal x-ray along with a mri (one of the doctors, who later told me that he didn't want me as a patient, said that if the nerve is being pinched due to severe scoliosis that it won't show on a mri.)

    i guess i don't want to go to the er. the last time i went, way back in 2001, the doc told me to go to pain mgt. because going to the er looks like drug seeking behavior.

    and since my general practitioner is now up for investigation for over-prescribing--even though i was in pain mgt. during that time--makes everyone in this city look at me like i'm a criminal if i take in a script or say he's my gp. i feel sorry for the guy. i called the newspaper--it was front page news and in the paper 3 times.

    i think the press is going to be my last ditch effort. i'm going to call the writer and hope he'll do a follow-up. maybe some kind doctor will take pity on me. sad that it's come to that.

    i've had the worst luck with doctors. i really have. the neurologist i went to for two years tried the hardest, but he had a horrible crush on me when i needed a doctor and wanted my pain to be fixable by anti-depressants or other easy pills so we could go to italy together. then my pain clinic just says 'can't come back' after i'm gone for 3 months without a referal or even a reason. i don't get that either.

    they had been prescribing--not treating, although i asked to see the doctor for injection consults and the pa declined and said they wouldn't work. but how could they just not give me a reason. i actually think they tossed me because i told them i wanted to cut down the meds and there was a question on the form that said what works best for pain and you were supposed to say meds.

    i guess the hard work has just begun, and i'm mad at myself for doing med pain mgt. and being too cheap and too scared and too tired to do more. and now the pains' worse and i feel as if my entire personality is gone. i know i'm severely depressed.

    i go to a psychiatrist and he says i'm depressed because of the pain. i just want someone to help. i'm going to get bills up the yin-yang next month that i can't afford to pay and i have nothing to show for it, either.

    i guess i'll try another general practitioner. i feel too sorry for the one i have; he has enough problems without me right now.

    maybe i should just go in to a clinic and not bring any records or tell them i'm on pain medications. maybe they don't want a patient another clinic threw away. i wish there was some way i could get my old pain clinic to tell me--and the other doctors--why they don't want me. that might help some.

    i'm just lost.

    i'm in las vegas area. i hate this city and don't belong here. i'm a tree and rain person. there is a university here. i checked for studies already. they seem to be focused on sleep disorders. (probably all the neon lights, duh....) if i were a really good doctor, i wouldn't live here. maybe i just don't vibe well with the people who choose to live here.

    oh, well. . thanks for being here. being in pain is so lonely......
  • I've been reading this thread thinking I don't have anything to add...until you mentioned scoliosis. I feel your pain. I've been down this road. SIX years wasted of Drs. obviously not knowing how to help me. MRI's of every area of my spine... separately. None could find anything wrong. It took one GP... who took an xray of my ENTIRE spine in one shot to finally see that I had severe scoliosis. I needed surgery!

    OK! Now it took two more years to find someone in the LA area willing to do it!! Most said I was too old (34 at the time). I finally had the surgery in 1999 (fused from T4-L4). Did really well until 2003 when I started having pain in my right hip. Spent 6 mos. having injections in it, phys.therapy, wanting to die. That Dr. said it was time to see my spine surgeon again. Sure enough nothing was wrong with my hip. The pain was coming from my lumbar spine (L4-L5). So sencond surgery later, I knew the hip pain was gone the moment I woke up from anesthesia.

    Today I'm in pain again, this time there is nothing wrong with my spine. It's stable. I'm beginning to accept that I will almost always have some sort of pain. I'm in Palm Springs right now and by accident(we no there are no accidents) came across a wonderful Pain Clinic. After 20 years of crawling out of bed like a hundred year old woman, I now dance to the coffee maker.
    Although I'm still tortured by the idea of needing pain meds for the rest of my life (now 43), Actually find myself on this forum looking for help with coming to terms with that. I'm also furious at all the docs that have underprescribed me in the past. Could I have been without pain sooner??? How different my life might have been? It's only been two weeks and I feel wonderful, energetic, and clear thinking. I told the doc the meds don't make me feel dopey or sleepy, but clear, and gregarious, and happy. He said, "Maybe that's not you ON DRUGS, but you WITHOUT PAIN" WOW!!

    What I'm trying to get across is:
    1. You need to see a Scoliosis Specialist. This is imperative. Noone else knows what to do with us. We are unique. Just any spine surgeon will not do either.
    2. You need a complete film of you spine. The entire length so they can see your curve or curves. The scoliosis doc will get these done right because they need to be done standing up. You know your in the wrong place if they try to take them lying down.

    Gabriella,
    I know how you feel about the professionals you tried to get help from. I sent one Dr. who told me my pain was "in my head" an xray with all my rods and screws post surgery with a note, "All in my HEAD?"
    Forgive them -- for they know not scoli problems.
    They just don't have the experience or the knowledge.
    It's unfortunate that faced with something they don't know, they just can't admit it but make us feel as if something is wrong with our personality for being in pain.

    Gabriella,
    feel free to PM me if you'd like to talk. I know what you are going through. Maybe I can help you find someone who will know how to help you if nothing else.

    Keep the faith. Don't give up!
    Tonia






  • At least you are in an area where there are bound to be many pain management specialists. My Lumbar spine MRI shows very little wrong, my xrays show facet joint disease, I was fortunate to finally find a doc to diagnose sacroiliitis and had steroid injections in both joints along with my facet joints. Now I am waiting for insurance approval for alcohol injections in my sacroiliac joints. That is probably 90% of my pain generators. I have muscle bulges over both joints. The diagnosis for you has already been done. Maybe bring him some articles for the web, medical sites only. After the injections, then you can work on getting off the meds. I am a little annoyed that my pain management didn't put in for approval for the sacroiliac joint neurolysis at the same time as the radio frequency of my facet joints or do them first. the waiting game is so difficult. Now I will most likely have to travel over an hour most of the winter for treatment.
    OZ
  • I have to tell you that if you want to self-refer yourself to a pain clinic, nowadays they will probably ask for medical records and MRI due to all the problems today with RX abuse.
    I really hope you'll find someone to help you and not factor in about the last doctor's problem. It pains me to hear about patients who need help desperately who can't get the treatment they need, and only get the runaround. You have to keep fighting so you don't fall between the cracks.
    Tonia is right. I think a doctor that specialized with scoliosis is a good way to go also.
  • You've only got what, one sacral joint? L5/S1? If your sacrum is out, it's likely the lumbar area has begun to disintegrate in the past 3 years. Get the lumbar MRI -- it will include the sacrum too. I've had very bad hip pain and leg pain. It's from my L4/L5 disc as well as my L5/S1 disc. Having a three-level fusion next week. See a neurologist or an orthopedist. In my opinion, the pain management docs are pretty worthless unless you've exhausted all other options.

    Linda

    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • I'm sorry for your frustration.. And i'm sorry as well because I share some of it with you! Luckily not all though..

    A question; why did your doctor of six years fire you, as you say?

    You said you were diagnosed with sacroiliitis, but said that you have NO pain in your lumbar area. Please understand that if you have sacroiliitis, the lumbar area is EXACTLY where your pain is coming from. (I just re-read the last couple of posts; looks like they affirmed the same thing as well)

    As a friendly bit of advice, I suggest you research information on Sacroiliac Joint Pain, or on sacroiliitis in general, which is an inflammation of the sacroiliac joint or region. It is literally RIGHT next to your lower lumber disc, l5-S1, and pain at, from, and related to that area is not uncommon with lower back injuries ranging from bulging discs and downward to anything worse. Google is a great research tool; just be sure to spell it right, I spelled it wrong and normally google fixes that for you, but not with that word. You will find some great images to show you where it is in your skeleton, and a good page or two that you really should print out to take to your next doctor's visit along with any official document you have for your diagnosis of the condition.

    I know you are not hurting in your lumbar area, but just once more to reiterate; the sacroiliac joint, THE joint of 'sacroiliitis', is maybe an inch or so I believe away from your lower lumbar vertabrae. I understand your local anesthetic working on your leg in the test you partook in, but it sounds like they stopped the pain at it's point of perception, not the point of inception, which is likely right in the lumbar area. Frustrating, yes, but something you really need to become an expert in, so that these doctors will take you seriously at the level which you desire and deserve.

    I'm not a doctor and my suggestions and advice are always just intended to be helpful or at least informative; I hope it helps you in some way. You seem very adamant about quitting your meds, but with the pain you describe, it does not sound like the best option for you however until you receive the proper care. An ER will not help you, and changing doctors too often will not either; try to find one that is willing to do some ongoing 'research' with you, preferably an orthopedic surgeon along with a neurologist, so that they can pinpoint exactly where on the nerve the pain is originating from.

    Sometimes, but rarely, patients DO have sacral fusions, fusing the sacral 'vertebrae to the pelvic bone I believe, and nerve ablasions are also done, to help with your pain. OzFromEmeraldCity sounds like the most informed member yet, with a very similar issue to yours, and can probably help you quite a bit.

    You are definitely correct in your understanding of some of the things that can be done; you have been going through this for a long time, and although we can all offer you compassion, some (limited) great advice, and many suggestions, ultimately your resolution with be the result of your own proactive approach, and a compassionate doctor or two (or more!). I wish you the best of luck!

    JWM
  • I have sacroiliitis, although I have some pain at L5 s1, most of my pain is where the the sacrum and pelvis meet.

    http://www.aidmysciatica.com/_img/Sacroiliac-Joint.jpg

    is a good illustration, even if it does show a fracture.
    My pain is right at the juncture of the sacrum and the ilium ( part of the pelvis ). And it feels like two large knots that prevent me from moving in either way.
    And the Lumbar spine MRI never showed beyond L-5 S-1
    I would think an MRI of the LS Spine and pelvis would be way to go although my doc used injections of dye and a local anethetic. The local gave relieve right away, which was the real answer.
    OZ
  • I have problems at L5-S1 and have pain in my hips, legs, thighs, back, basically from the waist down! The nerves that cause this type of pain are located in the lumbar spine. I know it's frustrating, but at least the doc is ordering a test. My first MRI didn't show what could be causing my pain. I went for a closed MRI and wahlah!, they found my herniation that had never been seen before. The closed MRI's give better images than the open ones. I hope you find some relief. Just because you are on medication, does not mean you are at all an addict. It means you are in pain and need it to get though the day. There's nothing wrong with that. I take meds, 4 to be exact, and I'm eternally grateful for them. They help me to go to work, then school 5 days a week. Don't ever feel bad about taking meds, ok? Please? You have a right to have your pain controlled and I hope it happens soon. Are you able to get your meds? I hope so. Please keep us updated because we care and most have been where you are now, so we understand. Take care, try to stay strong, and take it easy!!!

    Much love and understanding,
    Lisa >:D<
  • as L4-5 in particular is notorious for radiating to the hip! I have a bone spur there and guess where my pain is??? My HIP!

    I understand you have trust issues with docs now...guess what..docs are also human beings and they pick up on that vibe. You have to trust someone and start SOMEWHERE now... and the more you doctor shop and act distrustful, the harder you make it on yourself to GET help you need.

    Not chiding you, speaking practically for your sake now...sorry if I sound blunt its cuz I'm 30 years an RN in the medical system and I know how it works my friend. :(

    I feel great empathy for your predicament as a chronic pain patient myself and wish you godspeed in both diagnoses and pain relief.
  • i keep asking the pain mgt. doctors to do an xray, as one -- who didn't want me as a patient -- did say that an mri wouldn't help solve the problem.

    i was actually okay on pain meds until i returned from california and my doctor dumped me. my pain lvls were at 4 - 5--as long as i rested and stretched a lot--and i told him i wanted to cut back the meds so i could see exactly how bad the pain was. big mistake. i'm pretty sure that doc threw me away because i wanted to try injections and said that i wanted to taper off the meds. he gave me subutex and it was the most horrible drug in the world.
    i then read that chronic pain people who got dependent on subutex could never find relief in other opiates again and the subutex does not help with pain. i think it works for addicts, but it gives no pain relief.

    anyway, he put me back on the regular dose and i felt well enough. the stress of being treated like a criminal now that my old doc just dropped me--well, i was out of town for 3 months and then he said he didn't want me back, no reason. so i guess i have a black flag on me.

    one of the doctors i saw gave me neurontin and it's made me feel horrible in the head--fuzzy and stupid. but it has enabled me to taper off the opiates. although i am completely non-functional now and too afraid to leave my room to be honest. i was on cymbalta for a year, allegedly to help pain, and the six months it took me to taper off of it was the worst six months in my life. i'm more afraid of neurontin than the opiates.

    in fact, i actually craved neurontin last night. so it must be powerful and the doctors hand it out like candy. it's so sad.

    i'm going to get the mri and hope that the doctors will then start looking at other things.

    i just haven't made up my mind on a doctor yet, and the bills will pile up. there's one i read about that people have reviewed with excellence, and i'm going to try him.

    i just wish i could get off all medications and never see a doctor again.....

    but i'm giving myself a year. if i don't have some hope at least that i will have a functional life--meaning the ability to write, edit, work, etc.--and not just lie in bed all day--i'm checking out.

    but i'm going to try hard for a year. i feel like i'm doctor shopping and that's supposed to be a very bad stigma, especially in pain mgt. and because i have been on opiates for 8 years now, but i don't know what else to do.

    someone needs to help me.

    thanks for your support.

    hugs,

  • thanks all for the advice. i'm only going to try one more doctor, because he got such great reviews from people who seemed to have lost hope like me.

    i'm getting the mri done on friday. i doubt it will show anything, but who knows. i currently have two doctors. i don't know which one is better. both ordered mri's so i'm going to ask the radiologist for the films so i can take them wherever.

    i just wish these doctors would listen more. i have done quite a bit of research and i think radiofrequency would help a lot. i told one doctor that, and he shrugged. i guess i have to go through the steps first.

    i'm just in so much pain that getting through the steps, driving to the mri place, etc. is all so hard and painful, not to mention waiting in doctor's offices when i cannot sit for more than 20 minutes. sometimes i lay on the floor or squat and then the office staff looks at me like i'm crazy, even if i tell them i have pain when i sit. geez, they should be used to people in pain. it's a pain mgt. clinic.......

    love to you all. my brain is fuzzed up by the neurontin, but i have cut back my medications by 80 mg. and no longer have the breakthrough meds, so i guess being fuzzy is better than suffering withdrawals.

    i think that even though i will suffer quite a bit, if i can get my medications down, i might have a better chance of finding a doctor that will help.

    i know doctor shopping looks bad. i hate doing it. i'm embarrassed and ashamed. and they probably all know each other.

    one even told me --when he had me sign the non-patient doctor agreement--that he doesn't work like my old pain mgt. doctor. i guess the old guy has a bad reputation and i carry that with me. along with the fact that my pcp has been rxing my medications since i got back to this city and he is under investigation.

    it just is frustrating. it's not my fault that the doctors i had are scared.

    in one way, i don't mind. i want to cut back on the medications anyway. the way i'm doing it will just cause me to lose a couple months of life. sad, but true. i don't have a choice anyway. just have to bear the pain and if it gets too much, i will go to the er, but that is also a red flag to doctors.

    i wish my old pain doctor would give me a reason why he didn't want to work with me anymore. it might have made things better. i don't know what he said. i never abused my medications with him, but doctors that made millions upon opening a pain clinic don't want to lose their fortune.

    i just want a life back. i know i can be fixed somehow and made functional. when i can't even go out to dinner and sit for an hour, there is something wrong....

    thanks all of you. i'll keep trying. i just need to find a pain doctor who isn't a pill pusher, and most of them just seem to want to find something wrong on an mri and prescribe. i guess that's easy. it's so sad.....
  • oz,
    i asked both of the doctors to use dye, but they refused. i don't know why. i keep thinking that they just feel that my case is complicated and don't want to deal with me.

    question: why do you say that the local anesthetic was the real answer?

    i had a local injection of marcaine and i was able to instruct the radiologist when he had the needle in my back right to where the pain was. it was the best 18 hours of my life--3 years ago. i started a painting, baked, wrote, did everything i love to do for 18 hours.

    i keep telling the doctors about this, but they don't seem to get it.

    the pa at my old clinic said that i'd have phantom pain if they cauterized the nerves in pain. how does he know that? i might have phantom pain, but i might not.

    i just want someone to try....
  • Acting stupid goes a long way. Try going to a completely different doctor altogether and dont let him know that you have seen other doctors. I understand the frustration. I went through agony for several years because I was a military female. All of the docs I saw all said that I had a pulled muscle. It wasnt until I left the military and had civilian insurance that I had the chance. I played stupid, like all doctors want. I was 23 years old at the time. I am physically fit, active and have no real health problems. So I went to my primary care doc and told him I was having back pain that seemed to shoot into my leg. He ordered an xray and immediately ordered an mri after he saw the xrays. Turned out I have a severely herniated disc at L4-5 compressing the nerves. All I had to do was act stupid because thats what they expected me to be. They had no idea that I had been a medic on the civilian side as well as a combat medic and knew a little about something. Thats my advice to you . I know it can be demeaning but if it gets the treatment you need then its worth it.
    Best of luck,
    Tina
  • Hello Gabriella, I saw an orthopedist in Feb 2009 and he diagnosed me with sacrillitis. I feel your pain, it is awful. He referred me to a pain mngmt doc to get epidural injections, which I will get my first one two days from now. I too have medicare, and yes it is hard to find docs and get them to listen to you. I am currently taking meds, but I too do not want to have to take them for the rest of my life. Im scared if these injections do not work because I am not even 25 yet and already I am in chronic pain, have decreased disc height in lumbar, arthritis, and litterally a pain in my butt and pain in my hip joint and down my leg, i guess thats the sacrilitis. All I can suggest is dont give up
  • I am so sorry you are going through such a rough time. Keep your chin up sweetie. Do not give up!!
    My PC Doctor does not like for me to tell hem what I think I need or what I think is wrong. He will dissagree with me every time although a few days later he will say.....you have a pinched nerve...the very thing I told hem!! Some Doctors have to do things their own way.
    You also say your old Doctor refused to see you. Were you told that he was not taking any new patients? After being absent for 3 months you are considered a new patient and perhaps he just is not taking new patients. Just a thought dear.
    All our nerves exit our spine, as I am sure you know. And depending whare the pain is (in you hip?)shows what nerves are involved and whare they exit your spine.
    For example....when i had a ruptured disc all my pain was in my leg, not whare the rupture was. I had no back pain at all. It took forever to find the ruptured disc, months, while all the time I was in agony from my hip down the side of my leg!! I would see the Doctor and was given a pill and told to come back in two weeks. This went on and on while I lay in agony and hobbled around on crutches. I was finally sent to a Doctor for circulation problems and she ordered an xray of my lumbar spine and bingo....she found the problem!! All of this took 5 looooong months!!
    You also say you have medical bills piling up but you have Medicare and Medicade and should not be getting any medical bills coz Medicade pays what Medicare does not.Plus Medicade signs you up for perscription drug insurance and your meds should not cost you more than $3.10 for name brand.
    Sweetheart, find a PC Doctor and let hem take over your care. Act dumb and don't try to tell hem what the problem is...just whare the pain is and how bad it is.
    Let them do an MRI, if nothing else it will rule out a problem with your lumbar spine although your pain is not in your lower back...it could be causing pain elsewhare.
    Best of luck to you dear one.
    Hugssssssssss >:D<
    Patsy W
  • I wanted to mention that along with your MRI you will also need the report. You will not be able to keep the MRI but you can always ask for the report. That is what the Doctors want to see.
    I know how flusterating it can be dealing with Doctors while you are in pain, we all know that flusteration.
    I do want to wish you the very best. I am so very sorry you have gone through such a bad time. Hang in thare...you will find help of this I am sure.
    Patsy W
  • You have not been keeping us updated and I worry about you. How are you doing?? I have not been on here much coz I had a SCS implant about the first of the month for my chronic pain. The stimulator is working fine and i am recovering from the surgery nicely.
    Please keep us updated coz we do care and want you ro find relief.
    We all understand...
    Sending you a hug.... >:D<
    Patsy W
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