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Normal MRI/CT - Constant Pain?

AnonymousUserAAnonymousUser Posts: 49,900
edited 06/11/2012 - 8:23 AM in Chronic Pain
Does anyone have constant level 8 pain in lower back even though their films show no reason for the pain? I've been dealing with this for the last 8 years & every MRI, CT, discogram, bone scan show nothing. Facet & SI injections don't help. ESI's don't help. PT, chiro, acupuncture doesn't help. Core strengthening doesn't help. The level of narcotic I would have to take to manage the pain make me sick & constipated.
Most people I talk to about their back issues show lots of problems with their disks, but mine are normal for someone my age (52). I've exhausted every avenue short of surgery, but since nothing shows up, no reputable surgeon will touch me.

Any options I may have missed? I'll soon have to quit my desk job that I've had for 23 yrs because of the pain.
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Comments

  • could the pain your feeling in your back be coming from your front side, like belly,bladder,ect.. or even kidneys? just a suggestion. patsy
  • I've always wondered that Patsy. About 4 yrs ago I had an abdominal scan & renal scan. They came back negative too. Other than the unrelenting LBP, I'm a "picture of health" - so says my PCP. Normal BP, cholesterol, PSA, normal, normal...
  • do you do something in your work that would aggravate your back? do you wake up in the pain? can you connect it to anything you do that might make pain worse? maybe you could try sleeping in a different bed, sofa, or a chair, there just seems to be something causing you to have this pain for this long and have mri's come back lookin okay
    have you been to chro maybe one leg is a bit shorter then the other that could cause pain all by itself or even if you pelvic bone is not the same on both sides, keep searching,there has to be a reason for the pain.
    is there a time of the day thats it seems better or worse, could it be you desk chair at work ? im just trying to throw out ideas i know youve prolly thought them all yourself but never now. keep on trying to figure out why and when , good luck...prayers..patsy
  • I have been to serveral surgoens and now I have found out that the surgeon the did the surgery actually tried to fuse my with the cage. I am in constant pain as well and know what it is like to have doctors and surgeons ignore my pain and treat me as if I am crazy. My advice to everyone is keep looking and get yourself down to a pain management doctor. I have a wonderful one. He has tried all the injections in the joints including the SI joints, which my surgeon thinks is the main problem. I have one of the best neuro surgeon's now, but he thinks most of my pain was coming from the degerative SI joints. All the injections have proven that the problem is the non-union of the failed fusion that the first surgeon has done. My pain management doctor has talked to the surgeon and told him that I need to rehave the surgery again, properly this time. He also says that if this surgeon will not do it he will find me a doctor that will. I have been on pain meds for over 2years now and I am fed up with it. So hang in there, I get very depressed and frustrated with all these doctors as well. There have been times that I thought I would be stuck on pain meds for the rest of my life, but now I have hope.
  • your facet joints? Arthritis and bone spurs of the facet joints will usually show up on xrays but I had a very difficult time getting diagnosed and it is arthritic facet joints and DDD. Do you have pain from too much sitting? Are you ever stiff and find it difficult to straighten up when getting out of bed in the morning?
  • It can find or confirm what an MRI cannot answer. There people here that have annular tears that cause pain. Do you have arthritis anywhere? Some doctors think that DDD is nothing, or normal because it's considered as grey hair of the spine. Some have no pain, and other tremendous pain.

    I know this is so frustrating for you, after all these years. Even if they can't figure the cause, they still do need to treat you while looking for the cause. As you know, it's difficult to diagnose. Sometimes it take years for the culprit to be detected. Hang in there
  • Ladybug: I can't find anything that makes it better or worse - except sitting or standing for longer than 10-15 min. Exercise doesn't seem to help. It also takes awhile after I lay down for the pain to diminish at all. I don't wake up in pain, but after taking my time getting out of bed with mild stretches, it starts... and gets progressively worse as the day goes on.

    Re: chiro, I seem to have a small leg length discrepancy. But after adjustments, the pain doesn't subside.

    Re: my work area, my work purchased a $1000 chair for me - all the bells & whistles. It doesn't help either.

    Painintheback: very good observation. I've been told by a reputable PT (after 20 sessions) that the pain was coming from my facets. A week later I had a 3-level (L3/4, L4/5, L5/S1) bi-lateral facet injection - hoping if this resulted in reduced pain I could have a rhizotomy. But the injections didn't help at all. Neither did the bi-lateral SI injection a few weeks after that.

    Mehdey: I've never had an MRI/myelogram, but I definitely have arthritis in my knee. I had a torn meniscus & after an MRI showed no signs of arthritis, the surgeon was surprised when he found lots of arthritis all around the knee & knee cap.
  • dilaurodilauro ConnecticutPosts: 9,715
    but the tests you have had to date are not showing anything. I wasnt sure about something. You said you have never had a MRI or myelogram. Then you said you had one. Was that one for your knee?

    When you start to reach Pain level of 8 is the time you should look at being admitted to a hospital. When the pain level is that high, you really cant control it yourself. I would contact your doctor, explain the high level of pain you are in and go from there.

    Has your doctor offered other alternative treatments since you indicated you have had most of them.
    No one should have unexplained lower back pain and when the pain level is that severe, that has to be something that can explain that.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • I agree with Ron 8 is pretty high.
    Get it checked. Even though you said you have had before.
    There are so many causes of back pain out there without having anything wrong with the disk itself.
    What type of pain are you having?
    Sharp/dull/burning/does it spread or stay in a isolated area.

    We found my pain was coming from a condition called spondylolthesis. The only way this was confirmed is having a xray bending forward and back. The vertabra slips.
    Just like if you had a fist on top of a fist. Then tilt it.
    Did not show up on any of my MRI"s as I was flat.
    So just goes to show ya, be agressive in your treatment to find out the issue. No one should have to live with a pain level that high.

    I wish you good luck in finding the root of your pain.
    Take care
    Terri ;)
  • i am surprised your dr gives you strong narcotics without anything showing on mri and other scans. most i know of won't give out narcotics with nothing showing. they probably will give out naisds or whatever. how did you do this? i bet he is a popular dr if he gives out narcotics for patients that show no reason for pain. check kidneys-stone maybe. but you can get a cat scan for a stone. artheritis maybe-they have tests for this also and i believe it can show up on mri. have they referred you to a specialist of any kind? this is weird especially the giving out of narcotics
    jon
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • Maybe you have some sort of auto-immune disorder (that's where the anti-bodies in your system go bezerk and attack the good AND bad things in your body)? I have a connective tissue disorder and attribute alot of my aches and pains to that.

    Maybe your GP (family doctor) could run a Sed Rate blood test, and others depending on the results of that?

    I hope you get to the root of it all. I am willing to bet that once you know what it is, you will feel at least 5% better (because at last you will know it's not just in your head). And, you can't fight your enemy if you don't know him!

    Good Luck. Keep us posted, you hear?

    Jeaux
    :B
  • Ron: I've had many MRI's - I meant I never had a CT/Myelogram & I typed MRI/Myelogram. Alternative treatments include acupuncture.

    Terri: the last surgeon I saw did flexion/extension X-rays, apparently to test for spondylolthesis. Nothing showed abnormal.

    Jon: I guess I must be very trustworthy looking to get the drugs I'm on. I certainly didn't have to beg. They're trying to treat the symptoms. But I will check for kidney stones, they run in my family (Dad, sister).

    Jeaux: autoimmune disease also runs in my family. My sister suffered with ulcerative colitis & lives with it today. I've been checked for RA & AS. I have the HLBA-27 marker for AS & have been on Enbril/Methotrexate a few years ago.
  • Ron: I was always told the pain chart 0-10 meant 0 was no pain (who on this board has that?) 5 is moderate pain, to 10 meaning severe (go to hospital). That's why I say I'm always at a 7-8 pain level. I reserve the 9-10 for the excruciating pain that I've experienced many times. I actually think the other pain assessments that determine how limited you are in functionality are more appropriate than a 0-10 scale.
  • i look at pain this way
    for me a 10 is a kidney stone, can't walk or drive, throw up from pain, and have to have someone drive me to hospital. can't work

    8-9extreem sciatic pain. have to stop car on way to work and get out because i can't drive. stretch and get back in car, but still can work

    6-7 main part of my pain everyday. can work but have to sit down and can't walk long ways. can drive and go home and sit on couch

    4-5 can do most things without trouble. clean house, work, drive, walk etc
    can't remember when i had this

    0-3 don't notice and can go out and play tennis, walk, run clean do everything without problems

    i know pain is relative but this is what i use for my scale when a dr ask me
    i am usually at 6-7 but this is with meds, without meds would be 8-9

    jon
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • dilaurodilauro ConnecticutPosts: 9,715
    Since I've been dealing with Chronic pain for over 30 years now, I have seen many different variations of the Pain Scale.
    For many years, that was a secret thing, that was never published, nor did you see it on any wall. I am glad that this has changed and almost any medical institute you go to will have a pain scale.

    But there is still a problem with any scale. Everyone is unique so therefore what is one mans GARBAGE may be another mans GOLD

    I have been in/out of Physical therapy centers, Pain Clinics, Hospitals,etc so I have heard so many different things about pain scales. Some people think that If you go to a doctor or a rehab center and you say your pain level is 8 or 9, that they are going to jump to make sure they handle you. I have personally witness that with a young man who's only intention was to get pain medications. Then you have the other side. They could be in unbearable pain but dont want to complain, so they say my pain level is 5.
    In both of those cases, the person was WRONG.

    Identifying your pain level as accurately as you can is so very important. I think thats why I have told the people that deal with me medically, that I have a revised pain scale:


    image
    I am hanging in, no major problems


    image
    Not feeling all that great, need to sit


    image
    Wow, I am hurting big time


    I've been using this scale with my Pain Mgt doctor as well as my Aqua Therapists and they all know exactly how I am doing.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • I REMEMBER YEARS AGO WHEN I WAS WORKING IN THE HOSP. AND IT BECAME SOME KIND OF REGULATION THAT AT THE END OF EVERY PATIENTS BED ,OPPS just looked up sorry bout the cap,some of the nurses did not like this i was one of them because of what you just mentioned above ron. now as a patient myself everytime i go to any doc appointment first thing they ask me is what is your pain level? maybe its me but i personal dont like it, except when i go to my family doc i will answer the ? because he is the only one that knows me for me and how i handle and deal with pain ... thanks hug patsy
  • i agree that people abuse pain scales. they do exaggerate to get meds. but how does a dr know if pain is subjective? i believe some drs will do tests to tell. some back drs will manipulate something knowing that it should not cause pain or press somewhere. if the patient screams, the dr will become suspicious. there are all sorts of things they can do. also x-rays, mri's etc can narrow down pain. it is not perfect, but drs will be a little more suspicious if someone complains about pain when there should not be. some will give out a few pain meds just in case patient is coning them or give out nasid's if suspicious. some will do nothing and suggest tests if he is suspicious
    so what should a dr do when pain is subjective? give in to patient or give tests? it's up to dr

    jon
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.

  • Why must every post end with talk of narcotic abuse Terror?

    Its tiring, pain is subjective and must be dealt with between patient and doctor.We, as forum members should give support as best we can and hope the poster does what it takes to get relief.There are far too many mud slinging posts regarding meds lets just try and help one another.

    I apologize in advance my whole body has been a wreck the last few days, but am tired of these kind of posts already especially when they deviate from the subject.
  • the name is jon not terror and i sign it at the end of each post
    why do i mention narcotic abuse? BECAUSE IT HAPPENS ALL THE TIME AND BECAUSE OF ABUSERS TRYING TO GET DRUGS, IT MAKES IT HARDER FOR THE REST OF US WHO USE THEM LEGITIMATELY. i believe this has been my main mantra for the year and a half i have posted here. i also believe there are dr shoppers that troll sites like this in order to get ideas of how to get narcotics. so why are you so upset about this? i believe by reading your posts that it is a more personal issue with me than a factual. please keep personalities out of posts. i do and try to respect the different opinions of others. these posts get shut down for this reason. so let's keep responses in a respectful manner.

    jon
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • I personal believe everyone expresses their pain diff. I think doc.s can tell more about what are pain levels are by talking, looking and listening and reading are history.a good doc knows the diff between the truth and a lie, that's part of what they do for a living. I believe that their are many more people that are being truthful about the pain they are in when talking to their docs than your typed words seem to say,I don't think it happens ALL the time.(like you stated) more like SOME of the time. (that's my opinion and is not yours, hey that's what makes us all different) you seem to know more about narcotic abuser,I personal don't. so you prolly now more than me on the subject.
    this is just a bit of my opinion only
    I have no personal issues with you, so please don't think that i do,




  • Ok, getting back to the point of the post, I just scheduled another appt with my PCP to determine the next step(s). I will ask for a kidney CT as Jon suggested & maybe add'l abdominal tests. I'm also going to ask them to increase my Fentanyl patch from 12mcg to 25mcg, 'cause the 12 isn't cutting it. Only problem... nausea. It doesn't bother me with the 12mcg, but one day the pain was really bad I put a 2nd patch on the other arm. By the next AM I was nauseous. I like the concept of the patch as opposed to say Ultram/ER, which has helped in the past. But I also need to take something for the nausea like promethazine. I know everyone is different, but has anyone had success with other anti-nausea drugs? I know promethazine has been around for ages.

  • Promethazine is hands down the best nausea med around IMHO, its relatively cheap and just works.
  • Good luck with your next appointment, I hope they can find out what is going on, i have to second 101 with the nausea
    med I personal have never used it but it helped my daddy very much and very fast acting. best of wishes,ladybug
  • I am sorry to hear about your pain. It is so frustrating, and I can't even imagine not having a diagnoses for it. Where is Dr. House when we need him?? Hear are a few things I wanted to mention to you...

    Pain scale... I went to the ER with back pain, and tight chest. Turned out to be gallstones. I think I told them I was an 8 or 9, though I was probably a 10. I never REALLY know where I fit in on that scale!!

    Nausea... I have been told I can take something OTC like pepto, for more relief... I was on extended relief morphine. Made me sick as a dog. I was taking prescription prilosec and called the pharmacist begging for relief. She said try the pepto, which did help lots. check with your doctor or pharmacist about that one though.

    Tests... When I had my first MRI, I told the tech that I was afraid it wouldn't show anything, because my doctor already didn't believe me. She said that all to often, people have all this pain, and even the MRI can't find the problem.

    Suggestion... Something I think of often, when hearing of pain that is undiagnosed, is Lyme disease. I was just reading an article about it at the PM clinic in a medical mag. Can you suggest a Lyme test? I personally think my mother in law is suffering from this. I am not a doctor, but I think its something worth looking into anyway. I think that pain caused from Lyme is more wide spread though, I will look up the symptoms, and re-post.
  • this was taken from a page on the internet... may just be an interesting read if anything...


    Lyme disease signs and symptoms vary widely because Lyme disease can affect various parts of the body. Not everyone with the disease will have all of the signs and symptoms. But in general, Lyme disease can cause:

    * Rash. A small, red bump may appear within a few days to a month, often at the site of the tick bite — often in your groin, belt area or behind your knee. It may be warm to the touch and mildly tender. Over the next few days, the redness expands, forming a rash that may be as small as your fingertip or as large as 12 inches (30 centimeters) across. It often resembles a bull's-eye, with a red ring surrounding a clear area and a red center. The rash, called erythema migrans, is one of the hallmarks of Lyme disease, affecting about 70 percent to 80 percent of infected people. If you're allergic to tick saliva, redness may develop at the site of a tick bite. The redness usually fades within a week. This is not the same as erythema migrans, which tends to expand and get redder over time.
    * Flu-like symptoms. A fever, chills, fatigue, body aches and a headache may accompany the rash.
    * Migratory joint pain. If the infection is not treated, you may develop bouts of severe joint pain and swelling several weeks to months after you're infected. Your knees are especially likely to be affected, but the pain can shift from one joint to another.
    * Neurological problems. In some cases, inflammation of the membranes surrounding your brain (meningitis), temporary paralysis of one side of your face (Bell's palsy), numbness or weakness in your limbs, and impaired muscle movement may occur weeks, months or even years after an untreated infection. Memory loss, difficulty concentrating, and changes in mood or sleep habits also can be symptoms of late-stage Lyme disease.
    * Less common signs and symptoms. Some people may experience heart problems — such as an irregular heartbeat — several weeks after infection, but this rarely lasts more than a few days or weeks. Eye inflammation, hepatitis and severe fatigue are possible as well.
  • first of all i did not say all or most i believe i stated some are trolls and abusers. now back to the subject, 25 micrograms for patch seems a bit low. i was on the 100microgram patch after my first surgery. it was weird , i was on oxy and when he started the patches, i went through mild withdrawl symptoms with the patch. i asked dr why and he said it was dur to my body getting used to the patch after i went of the oxy. i have read about others who have had this problem also. it was not severe but mild symptoms. also i had weird dreams with it so they put me back on oxy. they also tried time release morphine, but nightmares also. i do get occassional psycho dreams on oxy but not as much. can you go on a higher patch strength?

    jon
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • Jon: yes, I'm thinking of asking my Dr to up the Rx from 12 to 25 micrograms. But that's where the nausea kicks in - so I think I will also ask for Promethazine.

    Since I'm asking for a kidney CT, I'll also ask for a Lyme test (although I think I've had one several years ago). Thanks for the suggestion Amanda. As I said before, I've had lots of blood tests in the past - from the normal tests for cholesterol/blood sugar, etc to tests for liver function, inflammation, rheumatoid arthritis, ankylosing spondylitis, etc.

    BTW... my name is Tom
  • have you tried anything else besides fenatyl patch, oxycontin, morphine, etc? they might be more effective. like i said before 25micrograms of fenatyl seems like a small amount. i use 700microgr with a fenatyl sucker for breakthrough pain 4x a day plus 40 mg of oxy 4x a day. i don't get high and i can function, work, drive, beat the family dog and spank my kids plus rob 7-11's. whoops i told my dark secret. no for those who have no sense of humor i do not do those. but i do work and drive.ask dr if he can give you something else stronger to see if that works
    good luck
    jon
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • Jon: I'm only on 12 microgram patch - I will ask for something stronger. I have tried Ultram/ER, but not the stronger oxycontin or morphine. My fear of these drugs is increased nausea & constipation.
    Remember this script is from my PCP... I don't think my PM Dr is convinced enough to prescribe anything - just facet & SI injections so far.
  • Hi there, I'm going to tell you what work for me to rid myself of the nausea, vomiting, headaches, and dizziness of the Fentanyl. I went thru it and things were so bad I thought of asking the doctor for something else.

    I asked a pharmacist what I could do about all that bad side effects. He said to put the patch on your belly. It works better there, because there is more fat there than your shoulder. The medicine is absorbed into the fat tissue, and for some reason it works better there. I can't explain the technicalities about it- but it works.
    After I put it on my belly, the area just above the belly button, I never got sick again. After my fusion I was bumped up to 50mcg, no problems. I was then changing it every 2 days instead of 3, and still no problems.
    I really think you should try it that, in my opinion. It was like a miracle. And my mind is clear on it, and have no worries about driving. But of course, when you're on narcotics, you still have to be extra careful.
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