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Pain level and medication vs diagnosis - ADVICE

ArmyWife83AArmyWife83 Posts: 4
edited 09/25/2012 - 12:19 PM in Pain Medications
Hi all, my name is Michelle and I was hoping to find someone with a comparable diagnosis so I could compare treatment and medicine. I want to know if I am taking more meds than others with comparable issues. I feel like I'm in to much pain for arthritis in C3 - C6 and bulging/herniated discs in C4 and C5. I am currently on 75mg of fentanyl every two days and Opana 10mg once a day for breakthrough pain. I am mostly on bed rest, in pain constantly. I'm 29 and have been dealing with this since 2010. I am unable to work and any daily chores or activities are almost completely gone. I can't live like this. Am I on too much pain meds? I alternate sleeping for days at a time and insomnia. I am depressed and wondering if I will have to live the remainder of my life in bed. Please help! TIA


  • Sorry to hear of your pain issues...

    Is there a reason why you are on bed rest? Did you just have surgery for your spine issues?

    Most Board Certified Neurosurgeons or BC Orthopedic surgeons will evaluate your spine and either say it's bad enough to warrant surgery to correct things, or get you into a comprehensive program that includes Physical Therapy.

    The only time someone should be on bed rest is the first few days or one week during a terrible flare...or right after surgery. But even then it's very important to get up and moving...Even if it's broken out to sections during the day for 5 minutes at a time.

    So, if you are emergent enough to have surgery, then there shouldn't be any danger for you to be up and walking. Laying down so much will actually make things a thousand times worse for you.

    And with pain management...it's not about comparing issues or medication because we are all different. But it is about using so many other modalities to help one's pain and not just rely on opiates. This is where someone's tolerance will be so low and have you always upping and upping the dosages.

    I have had 3, two-level cervical fusions as well as 3 severe herniations right now in my lumbar area and lower cervical.

    I do daily exercise, physical therapy, yoga/stretching, injections when needed, massage, acupuncture, TENS unit, aqua therapy, cognitive behavioral therapy etc.

    Are you prescribed any type of nerve pain like Lyrica, Neurontin or Cymbalta? These are very important to those with spine issues as a lot of the pain is because the disc is pressing on a nerve. This is where an opiate does not work very well for that type of pain.

    Same thing with a muscle relaxer. Many of us have muscle spasms and again, an opiate does not work in that way. Muscle relaxers are Flexeril, Robaxin, Skelaxin, Baclofen or Zanaflex.

    And since you mention depression...this is very common in those with chronic pain. It's very important to take care of your mental health as well. Many people use both counseling and medication if needed.

    What you describe now does not sound like a very good treatment plan for everything as you are just medicating yourself and making it worse by staying in bed.

    With daily exercise, a good and healthy diet, not smoking, and using the other medications and modalties I mentioned, those with spine issues can live a much better life.

    As I said...unless things are bad enough for you to need surgery....I would be finding other Drs. to help you get you feeling better emotionally and physically.

  • ArmyWife83AArmyWife83 Posts: 4
    edited 09/26/2012 - 7:33 PM

    Thank you for replying. I was mostly conserned with the opiates I'm on so I didn't list the other meds and therapies. I take flexeril and Zanaflex as needed as well as except side and and use massage therapy. I have also found great relief in Dead Sea Salt baths and epsom salt too. I have a Tens unit though I don't use it much. I also have flector patches to use as well.

    I am guilty of staying in bed to much. Every thing just hurts so much and I don't have any reason to get out if bed. It's part of my depression which I am taking Prozac for and have pain management therapy session scheduled for the first. I do get out of bed for ten to fifteen minute chunks but it is a far cry Fromm previously active life style. I hope that better answers your questions. I'd still like to know what others are taking opiate wise. Just for my piece of mind. Oh and as fir surgery I just had a follow up MRI to check on that and am seeing the doctor to discuss the progression and options tomorrow. TIA
  • So many days I don't want to get out of bed either. I suffer from depression as well, which my doctor says is quite common with chronic pain sufferers. I had been taking citalopram and Wellbutrin for depression, but my PM recently took me off the citalopram and put me on Cymbalta. It's for the depression as well as the pain. She explained to me about how it works similarly to opiates in that it blocks something and blah blah blah seratonin...I was only half listening.

    I also take Percocet and use a fentanyl patch, and I'm on Lyrica for nerve pain. I'm about 11 weeks post op from a spinal fusion and discectomy. Let me just say, surgery should be your LAST resort. Have you done any injections or nerve ablation? If so, have they helped at all? I went through RFA and multiple injections of pretty much every kind and nothing provided relief. At one point I was taking 8 of the 10mg percocets and 3 of the 60mg morphines a day, and I was still in severe pain constantly. Even with the meds, my pain hovered around 7, sometimes a flare up would put me at a 9 or 10 and I would be begging for death. I consulted 3 surgeons because I didn't want to accept the fact that I NEEDED surgery. When all 3 of them agreed, I knew I had to stop fooling myself and accept it.

    It sounds like you have no real quality of life right now, and I'm so sorry for that. I used to be so upbeat and happy all the time, always the optimist. I was the life of the party, and the first one to get out on the dance floor to shake my booty or get up and belt out some awful karaoke. Now when I go out with friends (IF I even go out), I just stay in the background and stay to myself. I'm so sick of having to cancel plans with friends because of a flare up, that now I either don't make plans or I warn everybody that plans are tentative. Several of my friends have commented on how this whole thing has changed me, and they can't wait until I'm better so they can have the "old Michelle" back. I know they mean well, but those remarks hurt.

    I do hope you get some relief soon. Take comfort in the fact that you are not alone. There are plenty of people here who can empathize and sympathize. Best of luck!
    L5-S1 Fusion, Discectomy on 7/10/12
    Herniated Discs at L3-L4-L5-S1, Spondylosis, Spondylolethesis at L5, DDD, Partial CES, Lumbar Facet Arthropathy
    Chronic back pain since 12/2010 (slip and fall on ice)
  • I so far have had over 17 different steroid injections, Radio Frequency Thermal Coagulations, and epidural injections. About every six months I do the epidural and the nerve burning. NOT my favorite thing. But it helps more than not doing it :) MBallard are you able to work? I feel EXTREMELY guilty for not working. I had to quite before the new year. I'm one of those people who needs to work. Plus $$$ is extra tight. I was considering some type of disability from the statute or SS. It adds to my depression. My Rhuematalogist isn't a good fit either. I was diagnosed with JRA at age seven but she now swears my joint pain in those areas isn't RA and refuses to treat it. Says its just wear and tear pain .... At seven? I also have other markers of JRA and am HLA-B27+ and have tons of autoimmune problems but since my blood work doesn't match she won't treat me. She happens to be the only Rhuemie in central Texas who take our military insurance. So I'm stuck with her. :/
  • dilaurodilauro ConnecticutPosts: 9,839
    Only you doctors and you can identify what is too little or too much.
    Pain tolerance has a lot to do with all of this. There is really no true test for this, but I will say that most skilled medical professionals can identify this pretty easily.

    I would like to say that it would be helpful if you could provide us with as much information regarding your condition, treatments, etc. All of this is outlined in the Forum Rules and FAQ.

    It makes it so much easier in responding to some of your questions. For instance in your three posts, you added another treatment/medication you are on or have tried. Knowing that information upfront will make following posts easier to put together.

    Is there any more information all of us should be aware of. But, please you have not done anything wrong ... It is just one part of our roles as moderators to let members know how to get the most out of their threads/posts.
    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
  • No, I'm not currently working. I went on leave in January - FMLA followed by ADA once that was exhausted. Initially I was told I would get 12 weeks of FMLA AND 9 months of ADA. In July, my employer decided to change the rules and told me it was a TOTAL of 9 months for leave. So as of 2 days after surgery, I was moved to inactive employee status and they filled my position. I called HR and Leave Management to dispute it - after all, I had received a letter from them stating 12 weeks AND 9 months, and they've refused to answer me directly. I ask why they are telling me something different now than they did in January, and they keep talking in circles and referring me to other people. Finally they stopped responding to my emails, and my director told my manager to not return my calls.

    I don't intend to give up fighting for my job, but I'm putting it on the back burner for now. I'm not physically able to return to work yet, not by a long stretch, so there's no point using energy to fight with them when I need to be focused on healing. For now I am still collecting my pathetic checks from workers comp, but it helps a little, and I will remain on inactive employee status until 1 year from the start date of my leave, so I am still eligible for my health insurance and benefits, so that's good. I have faith that everything will work out in the end though.
    L5-S1 Fusion, Discectomy on 7/10/12
    Herniated Discs at L3-L4-L5-S1, Spondylosis, Spondylolethesis at L5, DDD, Partial CES, Lumbar Facet Arthropathy
    Chronic back pain since 12/2010 (slip and fall on ice)
  • Armywife,
    Have you seen either a board certified neuro or ortho spine surgeon in all of this time? Pain management should be something that is done in conjunction with seeing at least one of each of the type of surgeons I mentioned . Pain management should be for the interim prior to surgery if the problems are mechanical in nature or there is compression of the nerve roots involved in your condition. If those can be fixed/repaired , then by all means do that and get back to living. If surgery is not an option, then along with pain management, you need to be doing physical therapy, swimming, massage, walking is a huge one, TENS, and looking into other options beside just relying on medications to treat the problems you are having. Laying in bed, is not helpful to you, and in fact has most likely made your situation that much more difficult. In fact, laying in bed is not recommended beyond a few days post op, and then only for short periods. Disc herniations and bulges are two different animals. All of our discs will bulge at some point, most often due to positioning, and then will recede on their own. Herniations also usually will resolve in about 80% of cases unless they are extruded.
    If I were you, I would be discussing getting some physical activity into your days- start small , but get walking- 10 minutes at a time until you start to build up some endurance and then talk to your doctor about getting you into some physical therapy.
    You might be surprised at how well those things will help you. And taking flexiril and zanaflex as needed is not usually how they are prescribed. Most of the time, they are meant to be taken every day, as directed and you will see some benefit to the muscle spasms and inflammation improving.

  • with the description you gave, you should ask your Rheumy about Anklyosing Spondylitis. You sound just like so many people with AS that I have talked to. (I have AS) I don't know if they allow links to be posted here, but if you Google Ankylosing Spondylitis, you will be able to find help. KickAS is a good discussion forum. Have you tried any diet changes? Some people with AS are helped with a low starch diet. It is important that you do rang of motion exercises everyday. I find that it is easier just after a hot shower to loosen up the muscles.
    I have Ankolysing Spondylits, Ulcerative Colitis, DDD and a bit of OA to make things fun. Most of my problems are due to inflation of many joints, tendons and ligaments. I see a GP, a Rheumatologest, an orthopedic Dr and a wonderful PM.
  • Hey there~
    Like others have said, everyone is different, but here's what I take:
    15mg Oxycodone every 4 hrs
    10mg Baclofen every 6 hrs
    600mg Gabapentin (Neurontin) every 6 hrs
    10 mg Valium at bedtime

    This combination of meds is working quite well for me. I have used the Fentanyl before, & I had to cut a 75mcg in half. It worked very well for me, but this was prior to my surgery. I think the meds you are taking would be a little too much for me, but what's important is how well they are working for YOU!

    I just had my 2nd cervical spinal diskectomy & fusion C6-C7 in December. I had my first ACDF in 2002. I also have DDD, spinal stenosis & spondylisthesis. I was only recently put on Oxycodone 3 months ago. Prior to that, I had been taken Hydrocodone 10/650 for almost a year & it stopped working. Last month I had 10 facet injections & the month before I had an epidural steriod injection.

    So....are you able to function normally on the meds they are giving you or are you still in so much pain that you can't work or get out of bed?? That's what's important. I absolutely HATE taking all these meds, but the other alternative is not being able to get out of bed. If you are getting adequate pain relief from the Opana & Fentanyl, then that's what matters! I pray that the pain meds are helping you to live a normal life. Please let me know! Take care of yourself.

    ACDF C5-C6 01/2002
    ACDF C6-C7 12/2011
    Prognosis: Permanent nerve damage in hands/arms, all treatment options exhausted-- lifetime CPP
  • paininohioppaininohio Posts: 240
    edited 10/18/2012 - 8:39 AM
    Hi Armywife, i was just wondering how you've been doing?
  • Not well. Frustrated. Rheumy says my JRA isn't active but all my joints hurt. Another disc in my neck herniated. The osteoarthritis in my spine spread a bit. Scheduling RFTC soon. I just don't know where to start to get better. I feel like I'm five and not an adult. I feel lost and do nothing but sleep and read. I know I need to get up but I can't find the will power.
  • I'm on Fentanyl 75 and one percocet for breakthrough a day but mainly my issues are lower back pain. I also take an anti depressant as it helps the medications work better and makes me feel better.

    I just went to an aquafit class and there were older people than me with more strength. I found out how weak I've got letting myself go. I hope you find an exercise program to do and know you would like some of the arthritis aquafit classes they have even though they may be costly. But if you have Health Benefits you can get a Physiotherpist to start you in Aquatherapy. It's like you feel so good in the water and I feel painfree but just until I get out but I know I will get stronger going so will be going once a week then build up slowly.

    I also walk about 10 minutes a day but of course we can't do it everyday but hope you feel better when you get a little exercise. I know it's hard to get going but maybe your Dr. can help if you let them know how you're feeling. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Charry
    I am glad you found the pool therapy. In the pool is the only time I am pain free. The water takes the weight of your body off and that helps in exercise plus the water puts resistance on movement that works the muscles. I can bet you were sore the first night after and the next day. Don't worry it gets better in a month or so LOL Did they have you hang in a tube for awhile? It really helps decompress the back.
    I know what you mean about it being older people my class is all older women and I'm the only guy so I am the target LOL You must really feel out of place because I am 55 and still years younger then the others.

    In the states most of our insurance limits the PT sessions to 12 to24 for the year. After I use them I do the arthritis classes twice a week and the cost is only $35 for six weeks which is cheap. Good luck with it and I hope it works for you.

    Do I understand that you cut a fentanyl patch? I do not know of a brand that can be cut and safely used.
    A cut or damaged patch can be fatal.
    Sorry not a good way to say hi but it worries me. Maybe there is a new brand that can be cut now but I have not seen anything on one. Some other patches can be cut but I have never read where any fentanyl can be.
    Please be careful

  • Armywife, i can't believe she just said "wear and tear" pain, what like that doesn't hurt? I know you said she's the only Rhuemy who takes military insurance, but maybe you could get a referral to an actual pain management doctor? Don't give up, you just have to keep trying. Also, thank your husband for his service and thank you for standing by him while serving!
  • MetalneckMetalneck Island of Misfit toysPosts: 1,364
    For the past several years. Fentynl patches have been a single level of plastic film with the medication mixed into the adhesive.

    This since the gel filled original formulation that did leak and cause some overdoses. The only brand (and lord knows why) is still the gel filled pouch in the Watson Brand. Gel filled CAN NOT BE CUT Mylan, Sandose, Duragegic, Jannsen have all changed to the single piece of plastic with little to no chance of gell spillage. Clear as mud?


    Spine-health Moderator
    Welcome to Spine-Health  Please read the linked guidelines!!

  • Bloodwork doesn't always tell the story with RA. I went to one rhuematologist for two years and he admitted I had a form of inflammatory arthritis but wouldn't diagnose RA for fear of labeling me. Arthoscopic biopsy of the synovium on my right knee also supported an inflammatory process. I ended up with a partial knee replacement two years ago. After the surgery my knee remained swollen. My OS recommended a different rhuematologist and she eventually diagnosed sero-negative RA. My knee has remained swollen for two years and I'll be going for a revision on thrusday where they will take out the partial knee and put in a full.
    I will also be starting humira after the surgery so hoping that will help with the other joints that are constantly swollen and painful.
    I have tricare as well, is it possible for you to switch to Tricare standard? It's more out of pocket but you don't have to have pre-approvals and you can go out of network. My rhuematologist is out of network.
    laminectomy c4/c5 2008, ACDF c4-c7 Jan 20 2014 sched
  • Metalneck said:
    For the past several years. Fentynl patches have been a single level of plastic film with the medication mixed into the adhesive.

    This since the gel filled original formulation that did leak and cause some overdoses. The only brand (and lord knows why) is still the gel filled pouch in the Watson Brand. Gel filled CAN NOT BE CUT Mylan, Sandose, Duragegic, Jannsen have all changed to the single piece of plastic with little to no chance of gell spillage. Clear as mud?


    It was the Duragesic that I was cutting in half. It was not a gel patch. Thanks for the concern tho. ;)

    ACDF C5-C6 01/2002
    ACDF C6-C7 12/2011
    Prognosis: Permanent nerve damage in hands/arms, all treatment options exhausted-- lifetime CPP
  • I take Humira, it can be a lifesaver. There are many different kinds of inflammatory arthritis, RH and Lupus can show up on blood test, but there are many that all you can find on a blood test is, sometime, a high SED rate. For many of these kinds to find one that works for you. people, one of the Biologics can give them back their life. Sometimes it can take some time for it to kick in, and sometimes, you will have to try several different types before you find the right one for you. I went from being in terrible pain to almost pain free in just a week , unfortunately, after 10 months, the Humira started to be much less effective.I hope you have a good response.
    I have Ankolysing Spondylits, Ulcerative Colitis, DDD and a bit of OA to make things fun. Most of my problems are due to inflation of many joints, tendons and ligaments. I see a GP, a Rheumatologest, an orthopedic Dr and a wonderful PM.
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