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Over a year of chronic pain with no end in sight....HELP!?!?

fyrfliffyrfli Posts: 35
edited 06/11/2012 - 8:42 AM in Chronic Pain
13 months ago, I started to have severe pain in my hip and back. Went and saw a chiropractor in June. Chiro did her thing, popping etc, gave me a heel lift for my right shoe. This made things much worse. After a couple more months of agony, I went to see my family practitioner. She had me go in for an MRI.

I followed up with a neurosurgeon who told me that I have mild disc degenerative disease and minor bulges. He said no surgery, and sent me to a spine and pain specialist. I underwent several rounds of epidural shots, and hip injections with no avail. Also was put on Neurontin, with no relief. Pain kept getting worse.

MRI with contrast in my hip was done, showing minor labrum tear. I was sent to a joint and bone doctor who said that that my joints and bones were fine. He sent me an orthopedic surgeon who sent me back to the spine and pain doctor. Another epidural, this one a nerve blocker that YEAH finally took away 75% of my pain for an hour! Lyrica precribed, with no relief. MBSR also researched, as I was told this could be psychosomatic. Another MRI and a couple appointments later, I am devastated.

I was told today that I have annular tears in L3, L4, and L5 along with L5/S1 nerves being conjoined. Was informed that I will have to live with the pain for the rest of my life, and that I should seek out pain schooling to teach me how to be normal and ignore the pain.

There has got to be something that can be done. No pain meds are being prescribed, and my pain is excruciating. Pain is the first thing I think of in the morning, and the last thing I think of at night.



  • I'm sorry you've been in so much pain. At least now they found the cause and I think you should get a referral to a pain clinic. They do everything ranging from prescribing meds, spinal injections, to sending you to therapy or offering neurostimulator or pain pump treatments.

    Ignoring severe pain is not a good idea. It needs to be evaluated and treated and whoever said you need to "think" it away is not using common sense. You do have a real condition based on the MRI and it is clearly causing you a lot of pain. BTW, what is MBSR? Anyway, welcome to SH and I hope you get the help you need. Take care :H
  • In addition to what meyday recommends, I would suggest, now that you have a diagnosis, that you get another opinion from a fellowship-trained spinal specialist.

    If you live near a university or a large teaching hospital that has a spine clinic, I would suggest you seek out a specialist there for another opinion. What one doctor considers inoperable, or unable to do anything about, another may have a different solution.

    Before writing treatment off and only considering pain management, I would leave no stone unturned in determining whether there is something to be done to change the problems in your spine, rather than treating the resulting pain symptoms...if I am making the difference clear.

    Sometimes annular tears can heal on their own, but it does take time. I've not heard of a cojoined nerve before, so can't comment on that. Do they think that is the pain generator for you?

    If you had no relief from steroid injections, and the meds for nerve pain like Lyrica and neurontin did nothing for your pain, it would be highly unusual that a pain medication would do anything. Usually nerve pain does not respond to a "regular" pain medication, such as an opioid because the receptors are different.

    You may not be able to find someone to treat you in your own town or city. But I wouldn't give up. I would see what a larger multi-specialty spine clinic might have to offer you.

  • as you see by my title, this is what i think of chiro doctors. they all say you are out of alignment etc. and if he referred you to a neurosurgeon, this guy is probably like a chiro. GO TO A REAL DOCTOR, REPEAT, A REAL DOCTOR, not anyone associated with a chiropatric doctor.have a real doctor do a real mri, x-rays, discography, nerve conduction test and take all of these to a real orthopedic doctor who specializes in backs. have him refer you to a real pain clinic. just because you have bad pain does not mean some of these guys will put you on narcotics. you have to have a whole battery of tests before they will even think about pain meds, then it will probably be a weaker pain med. if test support their diagnosis then they might work their way up to stronger pain meds. they won't start you out on morphine or oxycontin at first. if and when they do you will have to sign a pain contract and maybe get blood tests monthy or count your pills. if your doctor does not give you pain meds it is probably they don't believe in them. they will give you nerve pills which is like saying take 2 aspirin and call me in the morning. it is a long hard process to get strong pain meds.even if you are proved to have major disc disease, your doctor won't give you pain meds unless he believes in them. Unfortunately some pain drs don't believe in narcotics no matter what. you need to interview one and see where he stands, and if he believes in them you will need to work with him first

    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 have been going to real doctors, the chiro was where I started. After Chiro then went to real doctors. Seen 6 real doctors to be exactl! LOL. Thank you for the advice, and just FYI, seeking treatment, not meds.

  • Unfortunately, "treatment" in these cases is generally treatment for the pain, not for the cause of the pain. The science of fixing the back is not quite mature yet.

    There are surgeries and treatments, but none of them have a particularly stellar success rate, and they are generally not permanent solutions.

    So in many cases, the result is "pain management," which involves injections of steroids or anesthetics along with medication.

    Have you done physical therapy? That's one thing with a fairly good success rate that you didn't mention.
  • Still no relief in sight. Went back to family doc, who tried to help. She gathered all my medical records from all the doctors and hospitals involved. She then sent my file to a neurosurgeon that I have not seen, and told me to go back to physical therapy. Two weeks later family doc called back, and said that after extensive review, new neurosurgeon turned down my case because there is nothing to be done. Non surgical. Physical therapy still prescribed, so I continued to go.
    Two month ago, the physical therapist told me she can not help me, that no progress is being made, and that I need to seek out other help. Back to family doc I went, who suggested I go to Pain Management, as that seems to be the only thing left to try.
    I had my second appointment with the Spine Specialist at the new Pain Management clinic, who wants to start all over….from the beginning, to rule things out. Their office didn’t even have my full medical records, so again it was all for nothing. I live on hydrocodone, ibuprofen, and aleve, using a cane to assist while walking, and still my pain levels are high, and now my knee has started to hurt dramatically as well. What am I to do? Is there help for me out there, or am I doomed to living life in pain?

    The past week has been the worst week in a long long time. Meds seem to BARELY touch the pain, let alone get a managable handle on the pain. I work retail, so 8+ miserably excrutiating hours on my feet, and then I come home and I feel like I fail my family because I can't do what I used to be able to do. I hate this soooo much. My depression is worse than ever, and not sleeping at night due to the pain is taking its toll. What do I do? Where do I go?

    Thanks for letting me vent, any ideas and comments are appreciated!
  • Be patient. It's hard to believe, but you are just beginning a long journey. I have been like this for over 10 years. There is no magic wand that can fix what we have. Unfortunately, surgery isn't always the answer either.

    I know that isn't what you want to hear, but the sooner you accept that, the sooner you can start living.
  • To me, this sounds promising:
    I had my second appointment with the Spine Specialist at the new Pain Management clinic, who wants to start all over….from the beginning, to rule things out.
    Will is right, that this can be a long journey, so patience is important. But it sounds like this spine specialist wants to start at the beginning and start working to find where the problem lies and therefore what to do to help fix you.

    I think I can speak for so many here when I say that finding the right doctor is the #1 most important thing we spineys can do. Having confidence and feeling that we have an advocate in our doctor is not only comforting, but can be exactly what you're looking for - someone who wants to help you and will continue to search for the problem.

    I'm interesting in your symptoms because I also had severe back and hip pain, as well as pain that ran down the back of both legs to my knees. That wasn't sciatic pain, it was different. I had problems with standing and walking, but bending over or sitting would relieve my pain to a large extent. My situation turned out to be facet joint problems and stenosis, so there are many other things that cause problems besides discs.

    So please keep searching and find that spine specialist, one that you have confidence and know will work FOR you, if you haven't found one already in this latest doc.

    Take care and please keep us posted on your progress. Feel free to PM me if I can help you in any way.
  • Cath, here is a list of my symptoms:

    Pain deep in right hip.
    Pain that runs down back/side of right leg.
    Knee pain that feels like my knee is going to explode.
    Weird cold/hot spots intermitten on right leg and foot.
    Pain somedays in low back, predominately on the right side.
    If I sit for too long without moving, when I get up my hip feels like a rusty hinge being pried apart.
    Leg and foot go numb if I sit, stand, or lay in the wrong position.
    Sleep is evading me due to pain, there is no comfortable position. Burning stabbing tingling awful pain at night.
    The more I do physically, the higher my pain level. It has been really bad the past two weeks.
  • There is also no promise that there is one cause of the pain. For example, due to my spine being unbalanced, I now have bursitis in my hips. I also have some unexplained joint pain that has nothing to do with my spine (except that it is exacerbated by inactivity) and settles in my ankles.

    So what if there were 3 or 4 different things going on, not one? What if you had back issue, a hip issue, and a knee issue on that side all at the same time? Stranger things have happened.

    My MBSR did you mean the MMPI? The minnesota multiphasic personality inventory? I encourage you to follow up if you came up somataform on the MMPI. Somataform disorder is a terrible disorder and if you do indeed have it (MMPI is a screen, not a diagnostic), you have a long road ahead of you. This disorder would cause you to feel real pain, but unfortunately the solution is a lot more evasive than even most of us will experience :(
  • HappyHBmom - Mindfulness Based Stress Reduction Program (MBSR). He was thinking that I had surpressed emotions over my lifetime, which in turn erupted into physical pain. This has not yet been fully investigated, as after he walked me to the door, shook my hand, and told me "There is nothing I can do for you", I have been switched to different spine specialists, who are really slow at getting all my records.

  • Okay then. So just disregard what I said ;) I was thinking you had a test done by a psychologist, not one done by your ortho! I can't find any info on the MBSR test, although the program looks intriguing. But yeah, somatic disorder isn't something that gets diagnosed by orthopedic surgeons (or people on the internet), so good luck getting all of your tests passed on!

  • I hope my records get transfered soon. I am loosing patience, and hope. Ugh. Pain levels are high tonight, as they are most days, and work days are the worst! :(
  • dilaurodilauro ConnecticutPosts: 9,837
    From your posts, you've indicated that you have seen specialists and that diagnostic tests were done.
    Those tests did not indicate anything that would be causing your pain.

    The neurosurgeon said that there is nothing for them to do (ie surgery).
    You've indicated you have been taken nerve pain medications, but I do not see anything else.

    I've been around chronic pain for way too many years and have dealt with so many different types of doctors.
    Pain , to the degree you are talking about doesnt happen if there is no cause.
    What are you doctors telling you to do?

    If you are not getting any definitive answers from the set you are seeing now, perhaps you need to go for second opinions.

    If a car keeps on stalling and you bring it to a garage shop and they say nothing is wrong, what do you do? Keep your fingers crossed it wont stall again or find another mechanic.
    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 have annular tears in L3, L4, and L5 along with L5/S1 nerves being conjoined. Labrum tear in hip, and DDD.

    Doctors just keep passing me around, like musical chairs. I have had 3 specialists walk me to their door, shake my hand and tell me that I have to learn to live with the pain.

    Off topic, but who on here has all their medical records? Would it be a good thing for me to have all mine?
  • Yes- get a copy of your medical records and go and see some one else. Some MD's are not cool :)

    Pain Manger, Neurologist, NS, OS some one who will help you find a solution to your pain. You may need more tests still.

    I had a Pain Interventionist- PM(anesteisologist who also does Micro D's) tell me pain is all in your head and he only does injection or Micro Discetomy on patients. He was a spine specialist and the first dcotor I was reffered to by my PCP... He then reffered me to DRX machine (has a deal with a local chiro for kick backs and was bragging about a new boat as I was going under for a SNRI)....

    It was a nightmare and I spent thousands of dollars on bad treatment that I did not need that was slso very painful. I was sure to tell my PCP not to refer any more non suspection patients to the man as well as having a candid discussion with my current NS who diagnosed retrololistsis in my lumbar spine.

    Hang in there, it can be vicious getting diagnosed correctly >:D<

  • Finally got an appointment with my PM for this coming Monday. Yeah!!! But the bad news is that today while watching my son's football game, I bent over, and my back "locked up". In super bad excrutiation pain!!! UGH, worse than ever, and as everyone else here, I hate it!!!

    Any suggestions?
  • Hi, I appreciate your comments. I am in the same boat with most of these folks in pain due to back and neck injuries. Out of all the treatments I have had, I have to say my Chiro brother has done the mose for me. That and some pain meds, and pain patches,(lidoderm). I have seen and known many people who have had surguries, including myself and they dont fix most problems and sometimes create new ones. My brother tried to warn me before my neck surgery. I wish I would have listened. But I'm just now stating to become fused, after a year. Good luck to you. I have lost many friends and family to PAIN.LOL C
  • Do these really work???
  • fyrfli, you would probably benefit from Prolotherapy injections. Prolotherapy is used by some Sports Medicine Doctors to treat chronic pain from damaged ligaments and tendons which may be your problem even though you have some disc issues. There is a book "Healing Back and Joint Injuries" by Dr Valdez 2009 that discusses Prolo and other lesser used treatments.
    Good Luck
  • I agree with Cath that having a "Spine Specialist at the new Pain Management clinic, who wants to start all over….from the beginning, to rule things out" is a good thing. You mentioned MRIs, a chiro, an ortho and a neurosurgeon, but you didn't mention blood tests or an internal medicine workup. It is good to keep a copy of your records and a journal.

    As happyHBmom says, you may have more than one thing going on besides your back. The hip can cause knee and buttock pain and so can a disc. An SI joint can cause hip pain. The piriformis muscle can cause deep buttocks pain. Basically, any tissue above, along or below your pain area can be a source of pain, so it is good that the new doctor wants all your records to rule out all possible causes and to not have to repeat anything.

    I hope the Spine Specialist and Pain Management team can help you get it all sorted out so that you can get on a good program. Best of luck. In the meantime, breathe.
  • I've been dealing with back and a whole lot of leg pain of different kinds over the past six or so years. The past eight months I have complained of pain in my right knee. One dr took an xray and said there is some fluid but nothing to worry about. I put up with until a month ago. I had an mri and I have a torn minescus on my right knee and scheduled to have surgery next thurs 10/14. I'm not saying that's your problem, but maybe you could tell your doctor you would like an mri on your knee if you can. Just something to think about
  • I have all of my records; every MRI, bone scan, CT scan, x-ray report, you name it. Each time I have had to see a new surgeon or other specialist, I have all that information in a binder and can provide him/her with anything they may need.

    I have also had doctors tell me that there is nothing they can do. In my case, I had many things going on, but none were "repairable" at the time. One neurosurgeon had the nerve to tell me to "stretch every day, go back to work, and just forget about the pain". Now THAT was annoying!! It was only because I researched and pushed that I ended up trying prolotherapy for some issues and rhizotomies for other issues. I was not about to sit around when I knew there had to be something out there that would relieve my pain. I also came to realize that my rheumatologist was the one to help me with some isssues, while the neurosurgeon (the one who finally LISTENED to me) could help me with other issues, and that I had to be open minded when it came to all types of treatments; chiropractic, acupuncture, physiotherapy, massage therapy, Bowen therapy, etc. Each professional I saw was able to help me out in at least some small way.

    I have done several pain management programs, including two 10-day residential pain programs. There were no medications associated with that program; it was strictly counselling, several types of body work and a lot of acupuncture; at the end of the second program, I was actually able to discontinue some of my meds. The mindfulness programs teach you to acknowledge that the pain is there, but then let it go. This is sometimes easier said than done, of course, and no matter how much lecturing/teaching you're given, sometimes the pain just becomes too overwhelming.

    I'm getting off track a little here now, but I guess what is most important is to remember that you must advocate for yourself, because nobody else will do it for you.

    Take care, and good luck - I hope you are able to get some answers.

  • Great info. And you are so right about advocating for yourself. Could you give some more info on your experience with Bowen therapy? I've seen some youtube videos of the technique and have wondered about it. Thanks
  • You guys are right. When the doctors/surgeons say there is no fix we need to find other ways to combat the pain. And remember that a little of this and a little of that might be the answer. Can't expect that there is one fix for everything.
  • Been pushed off from doc to doc.
    The great community here has given you lots of advice and info. Use it, be heard & be well.
    Many pain free day wishes
  • If you have a regular pharmacist consult with him/her at the consult window about your pain problems. Ask if he would recommend an MD who is more helpful to patients with pain, pain problems matching your problem more or less. The pharmacist will know by the prescriptions filled who is feeling and more understanding with a patients pain concerns.
    C3-4-5 fusion 2005
    C-5-T-1 disk bulged
    L-4-5 bulge to the right, with Microdiscectomy, failed
    L5- Bi-Lateral bulge
    Pain in right foot -loss of feeling
    Left butt, hip and front thigh pain with bad shooting pain into inside ankle sometimes
  • My mind comes to one thing when a dr says there is nothing i can do or i don't see anything wrong with you. imho, this is code for i don't believe you and from what i can see, there is nothing that is causing your pain. unfortunately drs will not do anything or treat you if they don't see anything definitive, ie mild tears or mild herniation. a lot of people develop mild tears and herniations when they age, just the process. this doesn't mean you have a problem and drs will read it this way. to be conservative, they will not treat you or they will put you on anti inflamatories or nerve medicine. if your mri showed major tears or herniations, it would be a different matter. You need to find a dr who is more open minded, but me thinks that if you get a number of drs who say they can't treat you, then maybe they can't. how many drs told you this? if you still have pain then try to find a dr who will help. but if drs see that you have been to a number of drs for help, then a major red flag will develop. just for your information, a lot of drs see back pain as a way to get drugs. that is why you need to have all test you can, ie mri's discography, nerve conduction tests and take all copies to your dr. if he sees these and says i can't help you then maybe all of those drs are correct, they can;t help you.
    when you get into the area of back pain,numerous drs, pain meds, you are treading into a slippery slope. you need to have all the information that you can.
    good luck
    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.
  • A lot of what you've been dealing with sounds all too familiar for me. First off, I don't believe it's all in your head. You don't come off as a nut. The one thing I can add is consider having a CLOSED MRI instead of the new fancy-shmancy open ones. A lot of MRI places like the open ones because they are newer and patients tend to feel more comfortable when they are not closed in a tube. But, I found that a closed MRI was the key to my pain diagnosis. It was actually a chiropractic physician that suggested this. He is still the most intelligent medical professional I've ever met... And I've met far too many! He was my first advocate. He convinced me that my problem was real and that it was causing me all the pain I felt. The closed MRI was better able to see my problem. Open ones I'd had before didn't give as clear of a view of the location of my problem. This was my first step towards validation. I still had a few years after this of bad doctors, arrogant #*%$^&#$^*&^#&, haha, but having my pain validated gave me the necessary tools and determination to fight for treatment. You will get here too. You may never be pain-free, who knows, but there is treatment out there if you don't give up. It's ok to seek support and allow others to help keep you strong. It's ok to give up for an hour or a day, but just get back on the trail the next day. I found that taking someone with me to appointments, having a witness, made some doctors a little less nasty. Being well-informed is your best method for fighting arrogant doctors and not wasting more than one visit on the arrogant ones will save you tears and a lot of time. You are the consumer. If one brand of milk repeatedly tasted terrible, would you buy it again or switch to another brand? I wish you the best of luck! I've been at this 9 years already. It doesn't get easier, but you do gain some sort of acceptance through time. Keep fighting, you know it's not all in your head. I was told at first, that I had a condition that doctors use to tell you it's all in your head, but that also allows them to keep you coming back for meds, lining their pockets with easy 5 minute appointments. Don't settle for anything of the sort. If I hadn't kept fighting, I would still be here today thinking it's all in my head. NOT THE CASE. Think about that closed MRI. I'm here, so send me a message if you ever feel the need. I wish you all the luck and positive energy in the world to help you stay strong!!!!!

    Much love and understanding,


    This is solely based on my experience. I am not a doctor... Yet! These are my opinions only. So take this for what it's worth. :-)
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