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degenerative disc disease - can't find any doctors to help

Hi everyone. This is my first post to this forum. I'm 29 years old and have been dealing with debilitating back pain for the last 4 years. I injured my back during a weightlifting accident. I was doing powerlifting at the time and felt something pop in my back during a heavy lift. I had some serious back spasms for several days afterwards, after which the pain subsided to a manageable level. About a year later the pain started worsening to the point I decided to get it checked out. After doing an MRI it was found to be DDD and inflammation of the disc at L4-S1. I of course decided to stop the heavy lifting immediately and have not done it since but the pain continued to worsen. Here is my dilemma. It is now 4 years later. I have been through physical therapy, a chiropractor, countless meds (diclofenac, prednisone, skelaxin, tramadol, prescription patches and creams, lyrica, gabapentin, ibruprofen, acetaminophen, aspirun, tylenol and different herbs), spoke to 2 different surgeons (said it would be a bad idea at my age), and even bought an inversion table. None of this has helped. I went through a period of about a year where I had no health insurance, but I have had it again the last 6 months do came back to see the surgeon. Seeing as how the pain had worsened, becoming constant and often excruciating pain and stiffness, I assumed it had worsened. Another MRI was ordered which showed the condition looked about the same. They once again refused surgery and refused to prescribe any meds whatsoever. I have been trying different pain management doctors but every one will tell me that my pain cant possibly be that bad, its just DDD and we all get it as we age yadda yadda yadda. Then try to get me to waste more money on physical therapy, chiro, and or injections. The only one who has listened is my PCP but he can only do so much. I was wondering if anyone on here has been in a similar situation and dealt with it successfully. I used to be highly active, working 40+ hours a week in the gym 4 times a week, and also playing in a band and doing all kinds of other thing. Now its all I can do to put in 30 hours or so at work and usually just lay in bed the rest of the night, except the times where I have friends or relatives with a scrip for some decent pain meds that have some to spare. Any help would be greatly appreciated. Just very tired of living this pitiful excuse for a life


  • dilaurodilauro ConnecticutPosts: 9,875
    For statters I would read: [url-http://www.spine-health.com/forum/pain/chronic-pain/chronic-pain-treatment-step-step]Chronic Pain Treatment Step by Step[/url]

    Ok, now lets put DDD on the side. Almost everyone by the time they reach their late 20's will show some signs of Degenerative Disc Disease. It is basically the natural aging of our spine. Most people can manage this through approved exercise programs and only over the counter NSAIDSs.

    Too Young; No one is too young or perhaps too old for spinal surgery. If the surgery is needed, then it is done. Spinal problems dont discriminate regarding age. I would seriously want to understand what is the rationale behind your doctors statement about not wanting to do surgery because you are too young.

    Now, if there are other reasons? Perhaps that your condition at the present time does not warrant surgical intervention. Then the best course is the conservative treatment approach. But if you even suspect for just a bit that you have a disc problem, stay away from chiropractors.

    Yes, this can all be frustrating, you are in pain, and at the present time you feel nothing is being done to help you
    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
  • Well the two surgeons I have talked to said disc fusion is my only option. The one I just went in to see said it will most likely cause problems with the higher up discs later on. And you are right about chiros. The few visit I did have with them I left in even more pain so I never went back. The problem is that my MRI shows only mild disc degeneration, a slight bulge, and inflammation in the disc, so the pain management doctors think I am making it up. I don't know what is causing the sciatica pain and constant spasms but I have known people with multiple herniations that have far less problems than me. I have kept up with exercising and maintaining a strong core so I know that is not the issue. I just need help figuring out where to go and what to tell the doctors in order to get them to take me seriously. I'm pretty sure I've made it to the point where I can't do anything but take meds and possibly try something like nerve blocks or a tens unit, but none of the doctors are willing to prescribe meds. I don't know if they think I'm a junkie looking to score drugs, but how could they? No junkie would be trying to get surgery and going through everything I have done in the last 3 years. I finally went to see my PCP who prescribed tramadol and flexeril, but the tramadol is useless and the flexeril stopped working within a couple weeks
  • tried everything else to manage the pain, there are lots of options that you have not as of yet, according to what you wrote.
    Did you read the Step by Step Guide to Treating Chronic Back Pain that dilauro posted the link to? If not, it is also at the bottom of my post.
    Chiropractic is the worst thing that you can do for your spine, in a situation where you have ongoing back pain. Unless you are certain that there is no disc problems and no nerve compression involved, chiropractic can cause problems for you that you didn't have previously by manipulating the spine.
    Since there is inflammation, the best option is anti inflammatory medications such as voltaren, or naproxen, but in prescription strength, rather than the over the counter versions of naproxen. There are others as well if neither one of them work well . They need to be taken daily in order to maximize the pain relief and anti inflammatory properties of the medication.
    Returing to physical therapy is always a good idea, no matter how many times you have gone before. A TENS unit might do wonders to ease some of the muscle spasms, along with another muscle relaxer, also taken exactly as prescribed. Most medications are not a prn ( as needed basis) , in order for them to work consistently, they must be taken exactly as you are directed on the bottle. If one does not work , a dosage adjustment or a change to another type of muscle relaxer may be in order. Flexeril is just one of many available today . Topical heat wraps available in any pharmacy work wonders for tight, painful muscles, as does lidocaine patches if needed. Topical rubs, ointments and creams also contribute to lessening muscle tightness as well, and hot showers or baths also help reduce muscle tension.
    What makes you think that the pain is sciatic? You don't mention leg pain in your post.
    Ron is correct in saying that all of us, over the age of 18 or so will have some degree of DDD in our spines as we get older. Unless there is a tear in the annulus or a severe flattening of the disc, surgeons consider this a normal finding on MRI. Degenerative disc disease is a huge misnomer in most people see that term and think that their spine is going to fall apart, when it is simply a part of the human body getting older in most cases and the discs loosing some of their hydration over time ( decades).
    Getting pain medication from anyone other than your doctor is illegal and could find you and those who give it to you in serious legal trouble. It is also highly dangerous since you don't know what you are taking, nor how it will effect you. It could cause you to stop breathing and if your doctor decides to urine test you, it will show up, then no doctor is going to provide you with anything more than aspirin.
    The doctor makes a decision about treatment options based on the findings in the reports from your imaging studies, and his exam of you. If he feels that pain medications are necessary, then he will prescribe them, so there is nothing that we can tell you to say to him to make him give you pain medications.
    He did give you tramadol , which is an effective pain medication taken by many people who find that it helps tremendously.
    Are you taking it exactly as prescribed? Or just intermittently? If you are only taking it intermittently, then it is not going to be as effective as it could be if taken properly. However, it is a medication that should be tapered up and then down if not continuing on it and you need to watch out for interactions with any other medications you may be taking since there may be problems if taken with the wrong medication.
  • terror8396tterror8396 Posts: 1,831
    edited 12/06/2013 - 7:02 AM
    sciatica can only be diagnosed by mri's, disographies, cat scans. it is caused by the disc pressing on the nerve which in turn causes pain to shoot down the leg. mine did not go all the way down but to my knee. people use sciatic pain in the same way they say my kid has dyslexia for learning disability. they are not interchangeable. true bad sciatica usually needs surgery or the nerve will get worse along with the pain. sand and ron are correct, never use a chiro. they are in the same vein as a quack. they will always say your spin is out of wack and needs adjustment. but if no one thinks you need surgery, then you probably don't need it. back surgery is risky with no sure cure. my last one and i have had 4 really screwed me up and i have not been the same for 5 years.
    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.
  • The link at the top didnt work but yes I viewed your link and will try suggesting some of those things to the next doctor I end up seeing. Like I said I think a tens unit may be worth a try. The doctors I brought that up to said its a bad idea, but I forgot exactly why. As far as anti inflammatories I have tried taking all the over the counter ones as well as prescription strength. Taking 4 ibuprofen every 6 hours for several days helped in the beginning, but stopped working as the pain worsened. I have tried voltaren in both pills and patches as well as celebrex. I know DDD is a natural part of the aging process, but this was definitely caused by an acute injury and the doc viewing my MRI said there is most likely still a tear in the annulus of the disc. Tramadol is a med I tried a couple years ago but seemed to stop working after a few months. When my doctor suggested it again, I told him it would be worth a shot because I may have just developed a tolerance to it before. I really hoped it would because it had practically no side effects other than feeling slightly dizzy, which would make it preferable to other pain medications, but unfortunately no luck with it this time even after going up to the maximum recommended dosage of 200 mg per day ( the instructions on the prescription said 1 every 4 to 6 hours). I believe this is due to the pain worsening. Also, the sciatic nerve pain comes after doing any strenuous labor or sitting for long both of which aggravate the hell out of it. My job involves a lot of bending and standing fir long periods. After being on it for awhile I get sharp pains in the hips legs and my right heel, but these do not persist all the time. The muscle spasms, however are relentless and my hips, sides, and back are so tight I can hardly bend over and feel like I just got beaten with a crowbar. I do not go to physical therapy because it costs almost 300 a month with my insurance and after the first 12 visits is not covered at all. I do, however do the exercises and stretches I learned religiously, and have built up my core to stronger than it was pre injury. Before the injury I was able to bend straight over and touch my palms straight to the ground no problem. Now, I can not even come close to being able to touch my toes due to the stiffness, in spite of stretching several times a day.
  • terror8396tterror8396 Posts: 1,831
    edited 12/06/2013 - 7:53 AM
    you still did not say how you were diagnosed with sciatica. just saying you have it doesn't mean you do. it has to be diagnosed by all sorts of tests and by a neurosurgeon or an orthopedic surgeon. it is serious and should require surgery for really bad herniated discs. so what test did you have and what doctor told you that this was a problem? it is important for people to help you on this site. for your information, the meds that you are taking are non steroidal anti inflammatories. the side effects are minimal. they are along the line of naprosyn or motrin but stronger. they are non narcotic meds. they help by reducing pain and also reducing the inflammation in the area causing the pain. i would not up the dose unless your doctor says you can.
    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.
  • may help to ease the pain while sitting, especially one made to reduce muscle tension in the spine.
    If there is an annular tear, and it was serious enough, it should have been seen on the MRI. They can also offer a discogram or discography to determine if there is in fact a tear serious enough to be of concern.
    The maximum daily dosage of Tramadol is 400 mg I believe, so there is room for dosage increase if it is not working we at the current dose, but again, all dosage adjustments need to come from your doctor . Voltaren comes in a cream, which can be applied directly over the painful areas, in a tablet form , but I am unaware that it comes in patches. It may be something new but I haven't heard of it yet...
    Muscle relaxers work differently for everyone. If one does not work there are many other options. Opiates are not going to ease muscle tension. There is also some wiggle room in making dosage adjustments in those type of meds as well.
    If the pain you believe is truly sciatic, then there are several medications used to treat nerve related pain that your doctor can consider, gabapentin, lyrica, topamax and some of the anti depressants also work wonderfully at treating nerve related pain.
    The other thing that anyone needs to remember when it comes to chronic back pain is that once an injury occurs, things will never be as they were before the injury occurred, and you have to learn to make adjustments to how you do things and not expect that things will go back to how they were pre injury. If you continue to do things that you know will flare up the pain and aggravate the problem, no amount of medication is going to restore the preinjury activity level and function.
  • I am a little confused now because 2 of the doctors that looked at the MRI said there is probably a tear but didn't say anything about seeing it. Perhaps I could request a discogram eventually when I can afford it. Have you had one yourself and are they expensive? I am going to go back to my PCP and see what we can do about adjusting the meds until I can find a good pm doctor. I also may need to start looking for a different type of job because you made a good point in that you cannot just keep doing things to aggravate it and take meds to compensate. I have only been dealing with this for 4 years and if what I have is not severe, I can only imagine what some have you have had to go through who have been dealing with worse conditions for 10 times as long. I really feel for anyone else suffering with these lifelong conditions and only others who have dealt with the same thing can understand. Myself aside, it saddens me to also think of all the good people who are forced to suffer with these conditions and fight through the pain because of doctors and employers and others who have not dealt with it and do not understand. I feel as if it should be a prerequisite for being a doctor treating back pain, to have had spinal problems yourself!
  • dilaurodilauro ConnecticutPosts: 9,875
    would be to let the doctors decide what diagnostic testing is required to isolate your problem. If they are seeing or not seeing something, but clinical examinations seem different, they will know what if any additional testing would be required.

    I have always found it best to work with your doctors, let them call the shots, then after you have established an effective two communications, with confidence and trust, you might be able to talk it over with the doctor about having this or that done.
    Until you reach that point, stick with their decisions.

    Now, if you feel that their decision is way out of line and is not doing anything for you, you always have the right to seek a second opinon
    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
  • sandisandi Posts: 6,342
    edited 12/09/2013 - 9:45 AM
    Who are you seeing that is treating your back pain? Are you seeing a spine surgeon or are you seeing your primary?
    Or both?
    A good surgeon should look at the images of your spine, himself, as well as go over the report with you and tell you what he sees, as well as his finding of his exam of you. If there was an annular tear, you should have been told that, and what options were available to treat it.
    A discogram/discography is a test done where needles are inserted into the discs at a suspected level to see if the fluid/dye injected stays contained into the disc or leaks out. If it leaks out there is in fact a tear and it can be a painful procedure. If the surgeon suspected it, he may order the test, but if not, he won't order it unnecessarily since there are risks associated with it.
    I have not personally had it done but have had every other test done to me and then some....my condition didn't warrant having that particular test done.
    And Ron is right, if the doctor feels that a particular test is necessary, they will order it and discuss it with you , and hopefully explain why they feel it is necessary. If you don't feel that you are getting answers or the doctor cares about what is occurring, it might be time to find one who does.
  • sandi and others i had that disography done about 15 years ago and it definitely is painful. they put you out where you don't remember but you are awake and talking to the doctor. it was done in a hospital and i remember them asking questions about pain. all i remember is the pain which mimics disc pain but more. it took about 45 min -an hour. i believe if the dye difusses out of the disc then it is herniated. this is what i remember so don't swear on it.
    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.
  • thoracic spine painthoracic spine pain Posts: 566
    edited 12/09/2013 - 10:40 AM
    Please take time to read this manual. Wish I had read it before.


    I believe in standing, weight bearing MRI's 'cause I don't believe my injury was picked up on a prone MRI. It makes common sense to me that your body goes back into place on a lying down MRI. I'm not sure if it will make a difference for DDD, as they would probably pick up most things on a prone MRI but we walk around weight bearing and if lying down eases the pain I would try it.. Will not post the link but there are plenty of videos on You Tube and you can search the web for links with pictures and comparisons.

    Lots of people on this site disagree with me as there are pros and cons with both but you can make up your own mind.

    I aggravated my injury by working for 7 years in pain and eventually had to leave. They offered me a pension when I first had my injury - it is rare so not many Drs have seen it - not disks but I thought it would get better. Now I wish I had researched more from the very start - joined sites like this for the information only other people who have been through it can give and not put my profession first - although working kept my mind off myself and the pain so I sometimes miss it now. But leaning over a computer all day didn't help and as people don't usually understand the pain they would watch while I struggled to lift things. My hardest lesson was to learn to say I can't do that and ask for help.
  • Jaclee46JJaclee46 Posts: 28
    edited 01/26/2014 - 2:26 AM
    Hi, My advice is don't give up, I started with back issues at 35, I keep going to family Dr. who tried getting MRI's approved and they denied every time, I am know 46 and I started with a Neurologist who after getting my MRI approved wouldn't do surgery (I was 42 at that time) he said I needed a spinal fusion but I was to young, finally 2 yrs. ago he did a Laminectomy and hoped it would buy me sometime, it only worked for 5 months, then I went back he then did further testing, and after going through PT,pain medication and then injections when nothing worked he finally did the fusion last year, I had a neurologist and a Orthopedic surgeon working together for the surgery so don't give up, I will tell you my experience has not been helpful and I did have complication, and still have pain, but everyone is different so keep on the Doctor's, I agree to that once your condition is bad enough and you have exhausted all other types of treatment eventually surgery is the last resort, Good Luck :)
  • Carol GastonCCarol Gaston Posts: 10
    edited 01/26/2014 - 6:22 AM
    Thirty three years ago I had a judo accident, a 10 stone girl landed on my head /neck, causing me pain for 33 years.
    This started with constant headaches and pressure, which I still have to this day! It varies in intensity. Over the last 20 plus years, the damage has spread to my lower back. I have seen dozens of specialists, surgeons, etc with no joy, apart from an anaesthetist who has given me cortisone injections in my neck and back for 22 years. Unfortunately for me, he retired last year, just before I got an infection in L3/l4, This collapsed my disc, causing me a massive amount of pain. Walking is so difficult now. I am taking 25 painkillers every day, with Oramorph. A further year down the line, my lumbar spine was causing me dreadful pain. I asked my GP to put me in touch with my specialist, yet again!
    When I saw him, he offered me surgery, I couldn't believe it! He is going to fuse L3/L4 with a cage and pin and plate it. He was trying to put me off it, because he only does this op about 5 times a year. This is the first time that anyone has offered me treatment apart from cortisone injections every 3 months for 22 years..
    I am so pleased to have this operation as my pain is really bad. It has been non stop for 33 years, It gets me down so much! The thought of just easing the pain is amazing for me. Obviously I'm really scared of the op, but to me, it is worth the pain in recovery.
    I'm a brown belt in judo, a 4th Dan in karate, but because Of my back, I can't do either now. This is so frustrating for me, I hate being disabled like this? I have never given up, trying to get pain relief. All I can suggest is please persevere! I really do know how hard life is, I was 20 when I had my accident! I'm 53 now. For 8 years I was told that my pain was psychosomatic
    Don't give up!!!! Keep going to your doctor, he will give you something eventually. I have waited so long for this op, I'm actually looking forward to it!
  • sandisandi Posts: 6,342
    edited 01/27/2014 - 5:47 PM
    While I agree with the premise behind the IP handbook, the fact is that most of us here,do NOT qualify as IP pain patients. It is a bit misleading to post this booklet to people who are dealing with chronic pain, but not intractable pain.
    They are two distinctly different animals, and having dealt with both versions , chronic and intractable, there is a huge difference in the two and how the treatment options are handled for them.
    As far as the treatments for DDD goes, there are many different options and it might be wise to start with seeing a board certified spine surgeon for a consult, and then reading the Step by Step Guide to getting Chronic Spine Pain treated so that you can understand what the options are and what steps might be suggested next for getting the pain under control.
    The link can be found at the end of this post.

    To quote directly from the booklet-" The biggest problem an intractable pain (IP) patient faces for survival is that a bona fide IP patient is a rarity among chronic pain patients. Chronic pain, by standard medical definition, is a pain that is present
    over 90 days, and which can be continuous or intermittent. Millions of people have chronic pain. Common
    arthritis, TMJ, carpal tunnel, bunions, and headaches all qualify. However, true IP, as defined here, is
    constant, severe, disabling pain, which causes changes in pulse rate, blood pressure, and adrenal hormone
    production. This form of pain is relatively rare."
  • backpain67bbackpain67 Posts: 95
    edited 02/28/2014 - 4:24 AM
    what ever you do don't tell any pain doc you have tried someone elses pain meds. Try to get your own script for something stronger than ibuprofen or aspirin. I drove my BP up so high taking NASID they almost put me in the hospital for high BP. Careful what you tell a pain doc they can be very judgmental and go by a strict list of pros and cons when it comes to prescribing pain med also don't trust the Nurses either they are not your friends.
    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
  • i don't think judgmental is the correct word. if you see a pain doctor, most will have you sign a pain contract where you are not allowed to take someone else's meds even if it is not a narcotic. it is also illegal to take someone else's meds if they are prescription. if you do, you run the risk of being kicked out of his practice and if a narcotic, one can end up in jail. they are not doing this to be bad guys and to make one feel bad. they are going by the law and they could lose their liscense if this happens. it is also common sense not to take others meds. of course if there is a bottle of aspirin or naprosyn in the medicine cabinet , that is different. in a school, i cannot give out a naisd to a kid. it is illegal, if they need one they have to go to the nurse and call home for permission or a bottle is kept in the nurses office. my doctor would drop a person who did that in a heartbeat. and never never keep any secrets from your pain doctor. it is unethical to do that. never lie to him and never keep anything from them that relates to one's treatment.
    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.
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