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Losing hope in the medical field

ElusiveKismetEElusiveKismet Posts: 14
edited 06/11/2012 - 8:41 AM in Lower Back Pain
Since 2006 I have suffered from lower back pain and since last year it has gotten worse. I am only 29-years-old!

I have seen a few different doctors and had a few different tests done. My last doctor, a physiatrist, basically just wrote me prescriptions for all kinds of meds. He then pulled me off of them saying he didn't think all those meds were a good idea. WHICH - I told him from my first appt I do not want to live a life on meds, especially pain meds.

Sadly, I have a sensitivity to NSAIDS and it is sad because I feel they could "help" me. I've even had lidoderm and flector patches (had to discontinue flector patches due to them being NSAID and causing issues - and yes my doctor knew about my NSAID sensitivity and he even told me the flector patches wouldn't be an issue).

The physiatrist diagnosed me with chronic sacroiliitis. I don't understand why the sacroiliac joint injections did not work. I have had trigger point injections also. My back constantly stays inflammed regardless of these treatments.

Another thing noticed is random bruising at the site of pain.

MRI was done in 2008 and was normal. EMG last year and was normal.

I just do NOT get this when I know I am in pain and everything test comes back NORMAL. Everything is NOT normal.

I also have done physical therapy for six weeks.

So, now the physiatrist has passed me to a different doctor, a pain management specialist (to perhaps do an epidural block). I haven't gone because I am personally sick of doctors. I am sick of the way I am treated and sick of the medications. Sick of the stigmas that go along with the medications. Sick of missing work to go to doctor appointments that never pan out.

It's hard to even function and I am not sure how much doctors expect one person to take. My physiatrist told me, "you know they don't even have pain medications in China". I have been in pain for four years and it's getting worse. I have a feeling by the time they figure this out I will be immobile.

I have a five-year-old son who wants me to run with him at the park or chase him. I can't. I have a house to clean and a job to work and it's hard to make it through my day. I have a husband who wants to make love and I dread it due to the pain in my back. I MISS SEX! sorry... had to say it.

I am sure everyone on here just wants to find a cure or a treatment. A treatment that works.

My dad is almost 50 and his back pain has gotten to the point to where he can't play golf anymore. He LOVES golf, its like compared to eating to him. I do NOT want to be like this.

So, any ideas or suggestions are greatly appreciated.

Thank you kindly!


  • I so understand how it feels to get to that point where you lose all faith in the Medical community. I could share story after story with you as could many others on here. But the bottom line here is you can not give up. Somewhere out there is the right doctor for you. The one that will listen to you and will take your complaints seriously.

    Back issues can be the hardest to diagnose. But we know our bodies and we know when something is wrong. We just have to find someone to listen. And you will.
    Some times we are not communicating it properly, and some times we need to just find someone to believe in us but when we do it all starts to come together. You said you do not want to be like your Dad and give up the things you love to do. Hold onto that goal. Maybe it's time to try another physiatrist or call your PCP and ask for another referral. Just do not give up.

    I have gotten some great ideas right here with all the wonderful people and there is some awesome research to be had right here on this sight. Keep the faith.
  • i know how u feel, i never felt listened to and became very down because of it.i had to fight to get to pain management and it has made a huge difference to me, they listen to me and i finally feel like i dont have to fight to be heard. give it a try, maybe it will make a difference ? never give up trying
  • If I were in your shoes, I'd seek out a fellowship-trained spine specialist (either ortho or neuro) but someone who only works on spines. They're the ones who know the most about radicular pain and what can happen to the spine and its results.'

    Don't give up. There are spine specialists out there that thrive on finding what's wrong and pride themselves on treating the patient.

    Take care and keep us posted.
  • In my office I built a bike room where I can come on weekends and early mornings, turn on the tunes and a/c if needed and make it my time. It was very special to me. Now I just look at it and all the bikes and see them just sitting their looking to be ridden. I think I will need to finally get rid of that room. It was so hard to not wake up and ready to ride. Oh well I adjusted and I am sure your dad will.

    As for the docs, I understand completely if you read some of my latest posts. Many times I feel I am get the diagnosis of the day with no long term plan for recovery. It is just that honestly my case is not cut and dry so they just play it by ear. Sometimes I think it would be easier if my herniation was nice and big and obvious and I was bed ridden. Than I read here and think "watch out what you wish for".

    I can say though do not give up, my life is much better than 6 mos ago. I have found you just have to take the bull by the horns and go with your gut and brain. Something will break through as long as you do not give up. Believe...


    Hey we all MISS SEX but trust me just get a bit creative...I am sure if you both put your minds to it you can come up with something that will work.
  • When I typed the part about my dad I didn't realize how much I don't want to be disabled like he is.

    I honestly just want life back. I want to go walking, jogging and dancing again. I feel way too young to even have issues with my back. I want to enjoy it. Enjoy family and life.

    I will call and schedule my appt today for my pain management doctor to do the epidural block. I hope it works and thanks everyone for the positive reinforcement.

    (about the "creative" ways to still have sex that could be an interesting topic, YET because of my continous pain I am emotionally exhusted :-P)
  • dilaurodilauro ConnecticutPosts: 9,875
    I can relate, I started with back issues in my early teens and had my first of many spinal surgeries at 28.
    I am now approaching 60, so I have a lot of experience dealing with all types of doctors, surgeries, hospitals, pain clinics, specialists, physical therapist and more.

    Some spinal problems can be like the intermittent problem you have with your car. You bring it for service and they come back saying they cant find any problems, but you know there is one!

    Spinal problems are diagnosed using many different types of tests (ie MRI, X-Rays, EMG, Discograms, etc)
    The 'more' obvious problems show up and the doctors have a pretty good idea on what the action plan should be (surgery vs no surgery).

    But its those harder problems, that dont show up in all the tests that can make it all frustrating. Believe the doctors would like nothing better to identify your problem, put an action plan and place and move on.

    My feeling is that once you have a doctor that you trust, you stick with them until you do get answers.
    For me, that was only the physiatrist. They were the only doctors that covered the broad scope of problems and understood the different recommendations.

    Dont give up, I know its frustrating. You want to be able to return to a normal course of life.

    Maintain a positive and never say no attitude.

    After living with chronic pain for over 30 years, I could write pages of the things I had to give up.
    But then I could write more pages about the things I learned that I could do to keep my life full.
    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 can add any more to what been said but do get a PM Dr. Mine have help me in so many ways.Also it doesn't matter what your age is pain is pain 61 here

    Hope you be pain free in coming days

  • I'm starting to lose faith also. I have multiple level lumbar disc issues combined with arthritis and degeneration. I'm only 34 and ended up in the er. The other night. My soon to be ex Neuro Surgeon said there is nothing he can do.

    I'm willing to bet if I was unemployed, had no health insurance didn't have kids work a full time job and try running my construction business I would get better treatment. It's sad and depressing to live this way
  • the first time I was told that surgery wasn't an option for me and that I was being referred to pain management, I was put out! But they quickly became my hero's and I am sure they fly around with super hero capes on. I found them to be so respectful, would listen to what I had to say amd then would partner with me on appropriate treatment! They would also expect that I would do my part by exercising and giving up skiing, jet ski's, certain types of exercise, but I found it a good trade off! Hang in there and don't give up

  • No situation can fix what they cannot find and that in itself may be a good sign, even when medical assessment suggest they know what we have that is just the start of the repair process that can either work or not. Age does play a part in the unfairness; you are beginning to experience the frustration of having pain for considerable time and all that goes with this, many here continue to have pain from an undiagnosed origin and it can take considerable time energy and resilience to keep going when you know that the pain is real.

    We all come to that point when the only option is to review the process we have already done in the hope of the second lap to find what is causing the pain. We are programmed to what to and expect a cause and when this is not forthcoming it is frustrating, we do have expectation that modern medicine will find that specific cause and we would return to normality immediately, evidence and testimony here suggest that is not the case. It is sad and wrong that anyone should be expected to live like this that will not change our plight, we as Dilauro said, we must fight every day, the alternative is to sit in the corner and wither.

    Seeing more doctors just confuses us at times, we are looking for a consensus of opinions that will help not add to our confusion, every intervention creates a new process, thing are never as simple as we expected. Some wait for technological improvements, I have waited 20 years and nothing relevant to improvement has arrived, would I risk my current level of pain for the chance of making it worse, would you.

    Hope fades over time, we have to be realistic and chase what is real, not what we think we would like it to be, you are too young to be in all this situation and with some encouragement and re-emphasis will find that addition strength needed to continue and find your own remedy.

    As Painkiller mentions we may get to an age where pain should not be issue in the sunset of our lives that we should have to deal with and this is equally difficult.

    Good luck, many here are going through similar events.


  • Have you had extensive blood work? You may have the sacroiliitis, but also an auto-immune component as well. Especially if the NSAIDS work well; it's a bummer they cause adverse effects for you.

    Maybe ask your Pain Management doc - or even your Primary Care Physician to request the blood work. This should include the ANA, and Sed Rate. If for no other reason than to RULE OUT an autoimmune disorder.

    I have a Connective Tissue Disorder (Undifferentiated type). From time to time I will have a flare up that feels much like the flu (achy all over and very sensitive to the touch). It lasts a few days and then it's gone as quickly as it came.

    You could also try some of the drugs that are made for depression, but are often used off-lable for the nerve pain. This could be an option as well.

    Good luck in your quest. If you need to vent, or be some place where we "get it" and understand how you feel and what you are going through, you know we are here for you!

    Take care.

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