What do I do to make the pain stop?

[nat262]

I know the below post is allot but I really need experienced people to help me out. I would appreciate it so much;


Hi I'm 18 and I have moderately severe chronic pain from a C5 herniation in my neck and Crohns disease. I've had Crohns for 3 years and the bulge/herniation for about a year. The Crohns pain was horrendous enough..I mean it is hell at times. I was a very serious athlete since the day I started walking (I competed nationally at the high school levels a few times) and until this year pain has never prevented me from doing basic to fun activities I enjoy. I would be prescribed narcotics occasionally on extremely limited amounts and it did wonders but nothing else seams to work.  I have been 100% compliant with my doctors since day 1. I am an open minded person with a strong medical knowledge background which I was hoping to use to become a physician. I have tried damn near everything, physical therapy, raikee(sp?), massage therapy, chiropractors, etc. I also have been taking NSAIDs like candy, my doctors don't want me to take NSAIDs because of the Crohns but I take them in lower doses just to have something. In the past I've taken muscle relaxers, benzos of every sort, antidepressants (for both anxiety and pain), mood stabilizers, and some other stuff...I also see a psychiatrist and psychologist for pain and anxiety, I wanted to let my doctor know I was serious about getting a view from every point of view and my psychologist and psychiatrist both agree that I have allot of physical pain as does my physical therapist.

I'm worn out from this pain...I just can't do it anymore. Its a few steps down from destroying my life. It killed and is currently killing my grades, I was on honor roll and pain killed my focus...going to see doctors who couldn't find a "cure" for me let alone provide any serious pain relief options. Right now I am at a community college and nearly failing some of the easiest classes I've ever seen...its not like I don't get the content, I just can't sit down, lay down, stand up or do anything to control the pain. I'm going to have to retake classes because of the pain. I was on Percocet for 2 months in october and I finally felt "normal". I didn't have sharp and throbbing pain in my gut, my neck pain was reduced (though limb weakness was still there) and I could do some limited physical exercise. I know its addictive but after being on narcotics for even a weak I quickly noticed the "high" was gone and all that was left was powerful pain relief without feeling "stoned". The whole narcotics stigma is insane, the risk of me becoming "addicted" has literally destroyed my quality of life, I can no longer do things I enjoy, I can't ride a bike (I was supposed to race competitively), I can't row, I can't run, I can't even sit/stand/walk/etc. without pain, I can't focus on anything for too long.

I'm seeing a pain management physician in 3 days but I seriously feel hopeless. It feels like doctors are determined to  find anything but opiates to control the pain. Aspirin with Percocet was perfect but the Aspirin made me bleed uncontrollably and gave me really bad GI issues. I'm tired of wasting co-pays on these doctors who provide no relief, I've begged for an epidural and nothing. Some days I would pass out from the pain and others I would keep my head down because looking up was too painful. I don't want to take the opioids and end up like those people on OxyContin 80s 3x a day but at the same time I really don't care about physical dependance if my quality of life is restored.

I was taking the percocet as prescribed 5-7.5mg 3x a day which was barely getting me through my long day and it helped. One week my doctor decided to take a day off and never wrote my prescription. So I called to speak with her, her partner picked up and I said I just needed him to relay a message to my primary to refill my script. I made it very clear I was not asking him for anything..well low and behold on monday I get a call from my doctor saying she was not going to give me anything for pain anymore because I was "drug seeking" according to her partner...I just went with it since I didn't want to anger her but I'm seriously hurt by this. I had a mini withdrawal which killed allot of my school work, and my klonopin was also not refilled.

I was on 0.75mg of klonopin a day for muscle tension which helped the tension but didn't help the pain. I'm tired of pain...I hate being a burden on people but I'm becoming more and more crippled and I feel horrible making people do basic things for me...My psychiatrist raised my klonopin dose to 2.5mg and it just makes me feel like a zomby and I can't think clearly...I just want heavy duty pain relief and no more than 1mg of klonopin a day. I just don't get how much more of my life has to be destroyed before these doctors treat it...I pushed so hard through so many obstacles with pain and now I can't do anything. I spent thanksgiving writhing in pain in my room. When I don't have pain Im happy but right now I can barely type this up. I just want the pain to go away..I just want it to stop. If anyone has any advice I will, whole heartedly, appreciate it with the utmost sincerity. No one can/wants to fix this.....I just need some help with solutions. The worst part isn't even the pain its what it does to my mind, body and social life..Thanks in advance...

[femmy29]

Your post really touched my heart and hit home as I was once there in your shoes.

You are so very young to have these types of pain issues.  Nonetheless, that doesn't mean that your pain should be ignored.  

Does the pain in your neck radiate (or travel) to your shoulders or down your back or up into your head such that it causes headaches?  Epidurals are very helpful for this type of pain.  The localized pain in your neck, it probably won't do much for.  I go in for a epidural in my low back every three months and it keeps the sciatica and radiating pain up my back on the sides away but I still struggle with severe low back pain.  The epidurals in the cervical and thoracic spine regions are a little more risky than epidurals in the lumbar (low back) spine.  I think because of how young you are, they don't want to make a mistake and increase your pain levels higher than they already are.  If they do it right, it could very well help you if you have the pain in your neck that I mentioned above.  It took me 5 years of back and forth referrals to neurosurgery after MRI and after MRI before they finally found the cause of my low back pain and agreed to refer me to anesthesiology for injections.  It was riddiculous!  

How long have you been dealing with Crohn's disease and the herniated disc in your neck?  Before they knew what was causing my pain, I had doctor visit after doctor visit, copay after copay, it got to the point where I broke down in tears at one of my appointments and they finally gave me some pain medication (Tramadol) along with valium to relax my muscles.  This gave me my life back but over time I built up a tolerance to the Tramadol and had to swap out half of it with Vicodin (about 4 years later).  Another year later, I hit tolerance again and that is when they added in the morphine and the percocet, which I have been taking since April.  But it wasn't easy, my doctor wouldn't listen to me and I actually went in to see one of the other doctors in his office and then I went back to him slammed my pill bottles on the table and said, "count them! I am not abusing my meds.  But they aren't working anymore!" I then went on to say that I have researched the best method to effectively manage chronic pain and that is with a long acting opioid and a short acting opioid for breakthrough pain.  Finally out of his mouth came, "Choose, morphine or methadone".  Being on the morphine has changed my life AGAIN but I unfortunately am beginning to hit tolerance again.  I am only 31 years old.

The percocet is a very strong opioid medication and that is why you felt your  pain lift off of your shoulders.  I know how great that must have felt.  But the thing is, starting out on something that strong and taking it over the long term will cause the medicine to start to not work as well and then possibly not at all and you will need something stronger to control your pain.  This is the sad truth about pain meds, to keep the pain in check, you have to keep upping the dose and sometimes switch the type of medicine to keep the pain under control.  By the time you are 40 or 50, you could require an enormous dose of opioid medication to control your pain because you will be so tolerant.  There is always the possibility that you can reset your opioid receptors by tapering off of all your meds and going on a drug holiday and then restarting them.  You may get adequate pain relief by doing this; however, your tolerance will build up again and possibly at a faster rate as your body remembers the years of opioid medication ingested despite the drug holiday.  Something to think about.

I know how hard it is concentrate on your studies with pain.  It is nearly impossible as it continually interrupts your thought processes.  I went through the same ordeal when I was in college and barely graduated because I had no pain meds just a heating pad.  Doctors wouldn't listen to me or they would prescribe junk that never worked and weren't willing to increase the dose to see if the medication would be more effective.  I know where you are coming from and I understand your struggles.

I also struggled with ulcers and stomach bleeding from taking so many NSAIDS because that was all I had.  All I can tell you is continue the journey.  Don't give up the fight. You may have to start firing doctors until you find one that is willing to help you.  The doctors that wouldn't help me...I never went back to them.  And the doctors that may help but only a little, you have to keep going in and telling them your still in pain until they get tired of seeing you all the time.  It worked for me!

Given that your physician would not refill your klonopin is a very strong signal that he could care less about you and the pain you are struggling with.  Abrupt withdrawal from benzodiazepines is DANGEROUS, no physician should leave you out in the cold when it comes to benzos.  The withdrawal symptoms could cause seizures which can be life threatening.  If it were me, I would fire that physician immediately!

I don't know if you tried Tramadol before but if not, you could ask if they will let you try that as a last resort.  It mildly binds to the opioid receptors in your body but it isn't scheduled like a pure opioid agonist like percocet.  It is about 1/10th the strength of codeine, so it isn't very strong.

Ask for the Tramadol as a last resort, at your pain management appointment in 3 days, let them tell you what they think would be a good treatment plan for you first.

I think your referral to pain management is GREAT news!!!  There is so much they are able to do there versus what a primary care doctor can do.  I wouldn't give up hope yet.  

Please let us know how your appointment went.  There will be many others that will post to this and offer their advice.  There is always a step that you can take towards better pain mangement.  It can be a maze but it isn't a dead end.

I probably won't be back on until next weekend but I promise to read your updates and post when I am back on.  Take care.

femmy

[nat262]

Thanks a bunch for the reply! Really, its comforting knowing someone has similar issues and can relate instead of calling me a "drug seeker". I have done a TON of research on pain management amongst other medical type things too and my plan was to go pre-med (we will see how that goes....). Opioid tolerance does scare me as I did start to see it with the 2 months of Percocet...I was on Vicodin for a broken hand for a month then on Percocet for another month for the hand and Crohns last year and noticed it too. I don't know what it is but I never want to see a physicians assistant for anything other than a sore throat EVER. My GI's PA told me "None of my patients with any sort of pain are on narcotics, I'm not writing you a script for Vicodin" he then wrote me a prescription for Tylenol #3...he actually didn't know Tylenol #3 had codeine in it after I asked...

When I was in the ER (I've come to know this place to well...sigh), after my left arm lost 70% strength in the middle of writing a paper, the ER attending physician was the post compassionate doc I'd ever seen! I was brought in immediately and he asked me some questions and then ordered oxymorphone stat and gave me a tablet of flexeril, and got on the phone with a neurosurgeon then left a message with my ortho. He wrote me a script for Percocet 10mg every 4 hours (5 day supply) and told me to see my ortho as soon as possible and gave me 4 tabs of the oxycodone so I wouldn't have to find a pharmacy at 1AM (I only took percocet 5mg every 4 hours, 10mg was pretty high of a dose). It wasn't even just that he offered me a healty amount of pain killers, it was just that after I explained my situation and could get past this whole BS "Everyone who asks for opioids is a junky-drugseaker-badguy-drugdealer stigma" he actually did something and did it with an ongoing sense of pride. So I have to see my orthos PA...he knew about as much about narcotics as a 5 year old! I can't take Tramadol with the zoloft I'm on, he didn't know that! Anyways when I told him this, he just became more arrogant and even ridiculed me. He then said "I actually can't write a script for pain medication of any kind", I was insulted. He had just lied to my face. I told him that I had great success with Percocet and told him I did not even need to take all 10mg only 5mg and he just said "I'm not giving you Percocet". I told him "If you don't feel comfortable writing a script for a narcotic, just have the balls to say it instead of flagrantly lying about it like I'm asking your to Prom. Its a point of principle". (well I watered it down but I defiantly got the message across) I then walked out about as angry as ever..

As for the pain from my neck. It is in my neck centrally and radiates down my left arm with shooting pain, numbness and most always, weakness in my shoulder and arm and loss of sensation in my pinky and the finger next to it. I do get headaches occasionally but usually only when its really bad or when I tilt my head back which is just horrifyingly painful.

I called my primary after just crying because I was afraid of the pain, I had taken my last Percocet and I was scared of the pain coming back, my Internist is a very intelligent Internist specializing in treating eating disorders and other issues in adolescents, and I really do respect her. She was hesitant but called in the Percocet, which from what I know is only allowd to happen in emergency situations and the physician has to handwrite the script and personally deliver it to the pharmacy within a day or so, I appreciated it. Leading up to her partner lying about me asking for pills from him and calling me drug seeking I noticed subtile signs that she was getting more and more weary...the bottles start to go from "take 3x a day as need" to "take 3x a day as needed ONLY FOR SEVERE SEVERE PAIN", literally, I looked at the bottles and saw the progressively stronger and bolder words seemingly trying to push me away from taking them. Finally, the day I was labeled a "drug seeker" I called to see if her partner had given her a message about her forgetting to write the script. I asked to speak to her nurse who is super nice and instead I got an abrupt "What's the matter" from the Doctor herself...I explained that I was in severe pain and that she had not mailed or left the script at her office for me. She did the usual Q and A when it comes to pain, but instead of it being like a compassionate physician, it came out like a pissed off mom when you ask for a sandwich in the middle of their nap! I explained everything but she still gave me a message indirectly that said "I really don't want to give you anything, and I think your abusing these pills". I felt dirty, even in pain which just made me feel even more like crap.

I see a psychologist and a psychiatrist for my anxiety and when the pain got worse I even told my doctors I would be discussing my pain to see if it was physical or psychological...I offered them a differential! Like I said the psyche's seam to believe that its physical. My psychologist kept in contact with my primary who was concerned about me becoming dependent on pills and I explained that I knew all the risks, because well I do...I've seen drugs destroy kids before but I have also seen what a godsend they are to people. I feel like doctors totally get the concept of risks outweighing the benefits and benefits outweighting the risks, but when it comes to opioids they shut down because of inexperience with pain management and addiction and/or fear of "the big bad DEA monster under the bed" getting them regardless of whether the treatment was perfectly ethical or not.

(Post continued with next reply, sorry)

[nat262]

My dad has 3 herniated disks (2 lumbar and one C5 cervical in the same spot as me) its highly suspected that we have degenerative disc disease as his side of the family all has herniated discs. I saw what the surgery in his lumbar did and what the Vicoprofen did so he could go to work without having to literally lay on the floor when every time someone walked away for a bit (he did this quite often, like me, he chose to suffer without the animated drama when possible). Obviously I don't want to compare his situation to mine too much, but it really is a prime example of improving quality of life...he still has severe pain, his tolerance is very high, so the Vicoprofen does not provide as much relief for him really at all... He is not an addict, just in pain. I feel bad because I know his doctor will not increase the dose nor will he ask for her to...hes not the confrontational type (and to a certain extent I'm not either). Another person I knew as an aquitence, had some rare autoimmune disease, I think it was juvenile RA or something, anyways I watched them go from looking like a cripple to what we see as a pain free person after having his doctor put him on long acting opiates on a regular basis instead of the half wit attempt of making pain meds PRN, because lets face it, not all of our pain fits into "take 3x a day prn for severe pain", it just doesnt work that way. Anyways he and from what I've heard from every serious long term chronic pain patient has told me, had to fight, dig with their finger nails to get their physicians to listen, they also faced many other issues as well which makes me feel a bit more at ease I guess.

I'll admit, their was a time when opioids prn (ie not every day) for my crohns would have helped, but now that its in remission it gives me constant pain that while not as bad as my neck, makes me uncomfortable nearly every second. The Crohns is a dead end...I literally fired 3 GI's until I found one that was open minded and he still didn't find anything major, but he and my Internist appear to believe it is Crohns after every GI diagnostic test in the book showed minimal inflammation at best. I had Crohns first appear when I was about 14 and got the diagnoses relatively soon, my first GI was smart but was the kind of physician you want to keep teaching high level anatomy classes as he had the bed side manner of a Nazi and didn't really seam to do much for me. He had me on a cocktail of meds which may or may not have helped and could have actually damanged my organs, in the end I stopped the cocktail and noticed no difference...The herniated disc was diagnosed officially like 8 months ago but I had persistant neck pain for about a year and a half...it was becoming obvious too...I went from having great potential in my sport to really struggling to keep from having to quit because of bad performance, I would take an occasional tylenol #3 or vicodin if that pain was really bad and I had a race or tough practice or whatever but it just was not working for the other times I had pain. Now I can't run or lift weights...those were two things I used as a stress reliever...

ANYWAYS, I'm glad to see the pain doc. Its either today or tomorrow! Thank God! I'm typing this at 3:30 because I can not sleep from pain so I apologize to anyone if it seams a bit unorganized or scatter brained. I'm going to listen to what the PM doc says and then hopefully get some relief...not only is the pain bad but the co-pays from all the uneventful doctors visits are not cheap and while my parents can afford it and we have amazing medical insurance, its simply not fair. To anyone that replies I really appreciate it, I don't get the chance to discuss this with anyone who really understands really at all.

[nat262]

I saw two pain management physicians today for the best possible treatment plan (I made it clear to the second I had already received an Rx for Percocet from the first doctor).

First doctor was a very kind physiatrist (physiatrist not psychiatrist). She's apparently the **** for lack of better words and usually has a 6 month+ waiting list but by Gods grace I was squeezed in. Before I could even explain how upset I was by pain and how bad it got at times she assured me she KNEW I was in pain just by looking at me. She looked at my latest MRI which shows less of a bulge than the docs initially thought (they actually thought it was near herniation). She seams to think its Ankylosing Spondylitis since when I went to see a hemotologist I tested for that...she thinks that the AS and Crohns are related and is sending me off to a Reumatogist soon to get the picture on this in full. She said the ligaments and tendons in my neck are swollen and possibly even damaged, she is going to do a cortisone injection into the ligaments in 2 weeks..in the mean time she sent me home with a topical NSAID patch thing and 100 Percocet 5-325s to take 3x a day or so. I'm so happy to have someone put effort into treating my pain like a disease! I think the bedside manner alone reduced some pain! Haha

Second physician was an Anesthesiologist in charge of a pretty focused pain management practice. I felt a bit awkward since the people around me were allot older and obviously had long time pain but I told the docs that I was done screwing around for three years with pain dictating everything. His resident came in first and was good and then he came in and I told him about my symptoms and he agreed about the injection but felt that the pain was more with the disc and wanted to do a direct injection into the vertebrae with cortisone and possibly morphine. He hadn't looked at my records for AS and Crohns but he is going to go over it and come up with a plan...he was persistent about me being to young to have this type of pain even though I have degenerative disc disease in the family, and felt that I should not be on opioids this potent more than on a very as needed basis...frankly I agree with the latter for once. He seamed a bit annoyed that I was merely consulting him but I explained how many doctors I went through, how many failed treatment plans I had, how much it destroyed me mentally and how I didn't want my life turning into a stretched out episode of House MD.

Overall for once I'm hopeful about getting rid of some of this pain and not having to take pills all the time. I can't wait to get back to my activities with less pain! I could focus on my work today for once in a while.

[femmy29]

WOW!!!!  This is such great news to read from you.  I am so glad that you found physicians that are willing to treat your pain and believe that you are in excrutiating pain!!!

I have heard a lot of good things about physiatrists from other chronic pain patients all over the web.  They are very experienced at attacking the pain at so many different levels.  I am so glad that you like your new pain management team and that so much treatment was scheduled at your initial appointment.  

I myself hope to next year start injections with morphine and not just steroids.  I switch insurances at the beginning of the year and I will longer be pigeon holed as I can go to so many places and see so many doctors to find the one that is willing to treat my pain more aggressively and not just continue with the same ole' plan.  

I have degenerative disc disease as well in my lumbar spine.  One disc is ruptured and indenting my spinal cord and the other disc is bulging and pressing on the S1 nerve.  The latter disc causes shooting pains down my legs.  I have had 5 epidural steroids injections thus far and I go in for my 6th at the end of this month.  They have definitely helped with the radiating pain.  Since you have similar pain in your neck, I think the epidurals with morphine will help significantly!!!  When I was prepped for a C-section 6 years ago to have my son, I was given a spinal tap which pumped morphine directly into my spinal cord.  It was a lot so that it would numb me from the neck down so that I could be awake during the birth.  After that, my pain was almost completely gone for 3 whole months!!!  I have asked for something similar from the anesthesiologists that do the epidural steroid injections in my low back and they said I need to get another referral from neurosurgery to have that performed.  With the new insurance next year, I won't need anymore referrals for ANYTHING.  Zip, Zilch, Bye-bye...can't wait!!

I think your other doctor was worried about you becoming dependant on percocet, which is different from addicted.  All dependant means is that if you stopped taking the medication all of sudden after taking it every day for months, more than likely you would experience withdrawal symptoms, which can be quite unpleasant and down right *ell for many folks such that they said they felt like they were going to die but didn't.  I am very dependant on my medications and fear each month that a complication will occur when requesting my refills of meds such that I would be thrown into withdrawal.  I am sure that you have read about this though as after reading your posts, it is obvious that you know what you are getting into.

Optimal pain management often consists of a long acting opioid that you take on schedule every day to prevent the pain from coming on in the first place.  However, pain does break through sometimes and that is where the percocet as needed comes into play.  

An important thing to remember is that it is easier to prevent pain than get rid of it after it starts.  So, if you are planning to do an activity that normally increases your pain, taking a percocet BEFORE the activity will help more than taking it after or during the activity when the pain strikes.  I take my meds with the goal of preventing pain flares or minimizing them when they come on.  If I am going to clean the house all day, I will take percocet before the activity and it begins to assist the long acting morphine that is already working in the background.

I have found that injections alone don't eliminate my pain but in combination with my medications, excercising, stretching, and watching how much inflammatory foods I eat, I can reduce my pain a lot.

Your PCP isn't the only doctor that is weary of the percocet.  My physician is too and told me he wasn't going to prescribe it to me initially.  The oxycodone in percocet makes many people feel a rush a euphoria or intense happiness/well being shortly after taking the medicine which makes it a highly addictive medication as some will take more and more to continue that feeling as the initial dose will eventually not provide that euphoria due to a build up of tolerance.  I have been on 5-6 5/325 Percocets a day since April and I do notice the euphoria but it doesn't make me want to take more as I don't need it as the dose I just took still works for my pain and I know chasing the euphoria will end up at the dead end.  I think it is important to be aware of this drawback to the Percocet.

I would hope that eventually they will put you on a long acting medicine as that will give you more freedom as you can take 1 pill or use one patch that will last 8-72 hours or 7 days in the case of the Butrans patch, so that you won't be chained to pills all day.

I am glad to hear you are taking a anti-depressant as they can also help boost the pain relief when taken in conjunction with opioids, muscle relaxers, and anti-convulsants.  I am on all all these types along with valium which is a benzodiazepine and I know any single one will not help as well with my pain.

There is still the possibility that they can "fix" the pain with the injections such that you won't need the pain meds over the long term this early in your life.  I'll keep my fingers crossed.  :)

I think you are in very good hands now and you seem so up beat and in good spirits, which is wonderful!!!

Your father really needs to go into the doctor so that he can be evaluated for a medication change.  There is nothing worse than taking something everyday that doesn't work anymore. I did that for over two years with the Tramadol before telling my doctor it wasn't working.  Some doctors are compassionate and will ask about the effectiveness of the pain medications at every appointment.  Others take the hands off role, if the patient isn't saying that it doesn't work, than it must be working.  More physicians are doing that these days as they want to reduce their risk of being audited by the DEA.

I would love to hear any future updates you may have regarding your pain levels and how your treatment plan is going.

femmy