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Lost in frustration and don't know what to do. (full story)

First, thanks for reading this somewhat long post and intro. For the most part, assume much more has gone on and this is just a summary and needing people that understand me. I'm losing it. So to speak.

I'm 33. I had my own business in the health profession and did well.

The running joke is that I have a bulls eye on my back. I've been ran over or hit 4 times now. Must recently about 6 months ago. My late 29's and early 30's have been lost and I've spent the majority of it in bed reading and watching TV. I've lost everything. Money, business, friends, girlfriends, ambition and hope.

I look forward most to the end of the night when I can sleep and get a few hours of escape dreaming. That's where I have been at.

I have 4 shattered discs, a cracked vertebrae or two and I live a life of pain and fear of anything that may cause more pain.

Things got really bad about 6-7'years ago but been bad for over 12 but manageable then. 3 times I was t-boned by people that were decades past their ability to drive. The first 2 I was on a motorcycle. The latest in March of 12, totaled my car. I was in traffic going 10 mph, the man hit me going 70mph. My spine was horrible before that.

When things went bad the first time in 2006, life was great. I had a great business, I was in peak physical condition, dating a lot, meat a great girl, moved in with her, we had a high combined income, all was good. Then it got bad about a month after the accident. First came the Vicodin, then the Norco, then the Methadone. Soon enough, I was taking 80mg of Methadone a day and 80mg of hydrocodone via Norco.

At the time, I had no idea how much it changed me and it still didnt get rid of most of my pain. My business had to close down as it was dependent on my health. I had surgery, a microdiscectomy which did nothing for me at all. My fiancé left me, lost my place, moved in with my mother within a year or two after. I went from great shape to 59lbs over weight and after the break up, started drinking. First to kill the boredom and pain of the break up, them also because it helped get rid of the physical pain too.

I lost most of my friends. No one really believed what I was going through. Most ended up screwing me over, talking behind my back and doing things I couldn't believe they'd ever do. At this point, my worst thing I did to them was not hang out as often because I was always in pain. I hadn't done anything bad to them.

Eventually, I decided to try Suboxone due to recommendation by a very respected neurosurgeon to see where I was at without pain meds. At first, it sucked but I loved not being on any meds and felt more aware and awake than ever. I started rebuilding my business etc. things started going well for about 5 months and then I got hit again. Worse than ever. So back on meds. This time, OxyContin, 60mg day, 80mg of Norco. (8/day that is)

Still in pain a lot but now drugged out again and back where i was. Already I've been severely depressed and complete lack of libido or desire to date when before, I was opposite. Still living with my mother at this point, splitting rent as I had zero income for the most part.

So that's the very abridged version to date leaving out a handful of other major injuries, problems, etc. lol.

Then a month ago, I f'd up. I lost it mentally regarding pain. I had to see a few doctors, surgeons, new pain docs, etc. each offered me Norco. I accepted even though I had a pain doc. I knew there was a chance I could get flagged and I wasn't seeking more meds. They just offered scripts, even though I fully disclosed I was seeing a pain doc and what tey where giving me. As the pain meds at the time barely helped and my tolerance was already high, I didn't say no to the rock scripts.

Yeah, all my fault, I know. I wasn't doctor shopping but I didn't say no. When you are hurting so much you wouldn't mind dying, And you want to rip your own hair out from frustration, you tend not to think of future ramifications. So my pain doc wouldn't see me of course but I managed to get Suboxone again. I wanted it anyway, to see where in was without the meds. I'm not the type to take drugs if I don't need them. It's just not in my genetics. So I got on Suboxone and loved having the clear head again but my pain was there far more than when I decided to quit last time. This time, I am not yet ready. I still need therapy for my back etc. there aren't many docs in my town for pain management and I don't know if any will prescribe me the meds I need. That said, I don't even want to go back on heavy pain killers but I'm afraid to even get out of bed without them. My back hurts every time I move. I can't get in shape without them since I can't workout without extreme pain. I know this area well having been a very successful personal trainer and nutritionist for a dozen years.

I saw one pain doc last week and he was cold and. Rude and recommended Cymbalta. My pain isn't just nerve pain like C helps and I seriously doubt it is strong enough for the shattered spine I have. Most docs are surprised I can walk.

So here I am, taking Suboxone to keep withdrawals away but in pain all the time, never leaving my bed, broke, no friends anymore, angry, depressed, hopeless and no direction.

That's some of my story. I just needed to vent to a group of people that may understand me more. I'm not suicidal at all. Just don't care what happens. Dying of boredom more than anything. I don't know if any doc will help again, surgery doesn't seem to be on the table as so many discs are damaged and I'm 33. I'm so so lost and miserable.

Sorry for this post. I don't know what to expect or whatever. I just felt like typing. Sick of friends that are clueless to what I'm going through. I've ended most friendships, destroy any chances of dating as I'm not interested and end dates before they happen. I'm broke, fat now after being a trainer and in pain all the time. I don't see any silver lining.



  • DNiceDDNice Posts: 1,962
    edited 10/21/2012 - 2:28 PM
    Have you ever thought of using an in-patient program (30-day) to try to wean your pain meds down a bit?
    I trust that you hurt and hurt badly but perhaps, you have developed an unhealthy relationship with pain meds.

    If you did that, would your pain doctor take you back?
    I would think in good faith yes.

    So, that aside, if the doctors are not sure why/how you are walking then what recommendations do they give you? From what I'm reading you had a single surgery (microdiscectomy) which would only help leg pain, not necessarily back pain. Perhaps I'm not reading this properly but have you considered a Doctor of Osteopathic medicine?

    Anyhow, as for getting fit...try not to focus on that. I would focus on eating healthy first and foremost, trying to keep inflammation down, and a few little walks on flat surfaces per day. Don't try to do it all at once....baby steps.

    I would ask your doctor for some help with depression too. I don't mean more drugs but maybe pscychological help. You have been through a lot and if some of your friends left you, I can see feeling even more frustrated.

    Good luck.
  • SueDSSueD Posts: 545
    edited 10/24/2012 - 1:35 AM
    I've just read your story and just wanted to say that I totally understand where chronic pain can impact on EVERY aspect of daily life.

    I've only had chronic back/leg pain since 2005 (I say 'only' because some people on Spine Health have been dealing with it for decades!). You are so young to be in this position and I cannot believe there is no support network for you (wherever you live).

    I've also had depression, purely because of the pain, and have been recommended to try all sorts of treatment. Firstly, I went on a 9 weeks pain management programme (which was extremely helpful, especially knowing there are loads of people in the same boat and the people were really friendly and understanding). I have had a 6 week 'stress pac' training - which, whilst it didn't really help as it focused on people who had panic attacks caused by anxiety and did not address the fact that pain was the instigator of my depression, the people there offered their support to me in other ways and gave me ideas I hadn't thought of before to try.

    I just think that if you were able to speak to someone, in confidence, that it will show your determination to try and be pro-active and perhaps they could refer you to another pain specialist who would be willing to work with you.

    Anything is worth a try?

    Since your microdiscectomy, have you had any other conservative treatments, i.e. steroid injections - which can help a lot of people? Would you be a suitable candidate for newer technology - like the Nevro spinal cord stimulator? This system has been introduced by the Nevro Corporation (in California, I think) and from their website it looks as if they might be taking people on to participate in trials. Your previous history might go against you, but nothing ventured, nothing gained. There are many different treatments out there, and not every one is suitable for them it's true, but you just might find one that helps reduce the pain you're in sufficiently enough that gives you more hope for the future.

    I hate to think of you, at 33, totally giving up on life and, whilst you say you are not suicidal, you also mention that you just don't care any more and that is so sad.

    Have you pursued any hobbies that you can do whilst you are sitting/laying down? Can you write about your experiences in more detail - get it all out and perhaps this might be a form of therapy at the same time. You could give a copy to your doctor, so he/she is more informed of your situation and may be more willing to help you.

    Are there any support groups in your area you could attend, just to be able to meet with other people and share experiences. It certainly helps (well, it did help me a few years back) to hear other people's stories because then it can help to take the focus off of yourself, even for a short while.

    You are living with your mum now, but are there any other family members that you are close to that you can chat with?

    I think you mentioned that surgery is not an option because there are too many damaged discs involved - have the surgeons told you this for definite? There are some people on Spine Health that have had 3, 4, 5 or even more vetebraes fused and although I know it's a huge undertaking and very invasive surgery, their backs have been made more stable because of the surgery. In my experience, no surgeon should ever guarantee pain relief from such an operation, but if it happens, then it's considered a bonus.

    My 2-level fusion surgery in 2010, on paper, was a total success, but my pain issues have continued and now, because of the fusion surgery, it seems I have developed sacro-iliac joint pain on both sides - and also have awful pain in my foot most days (evidently because of the way I have walked over the years to compensate for the back pain). There are other pain issues going on, for which I'm taking Fentanyl patches and oral morphine solution - which doesn't really help either. But I keep trying. I will never give up (unless the surgeon's tell me there is absolutely no hope) of looking for alternative treatments to try and get rid of this pesky pain. It's worse now than before the fusion, but at least my vertebraes have 'fused' now so hopefully I won't do any further damage to my spine. I had to have revision surgery last year and thought I'd never get back to work, but I did. I recently had to give up the job I enjoyed (working with children) as I assumed all the bending was making the pain worse, but since starting my new job in September, I have found the pain has increased even more because now I am sitting for most of the day. I feel like I've gone from the frying pan into the fire - but still I persist. I will just carry on until THEY tell me I cannot work any more. I think, what I am getting at (in a very long convaluted way, sorry!), is that I have made numerous changes to my life since 2005 - and have employers who have made big adjustments to allow me to continue to work in one way or another, and am still looking at ways to help myself live with the daily pain with more tolerance, as best as I can.

    To this end, my local doctor has even referred me recently to see a specialist about the Nevro spinal cord stimulator (as mentioned above). It's new and is similar to the Medtronic device, except it's on a much higher frequency and therefore, once it is implanted, the patient does NOT feel any buzzing/tingling AND, more importantly, it is supposed to help reduce/irradicate back AND leg pain at the same time. It sounds too good to be true, but nonetheless, I am going through the assessment process to see if it would help me and to see if they would accept me onto the trial. It would have to be on the NHS, as I have no funds whatsoever, so it may be that I get rejected somewhere along the way before I've even got started. But I have to think of it as NOTHING VENTURED, nothing gained. If it doesn't work out in the end, then I've lost nothing by trying.

    Of course, I am much older than you, and it upsets me that you have given up at such a young age.

    Have you tried going for a second opinion (or third)? I saw 2 surgeons who both told me there was nothing they could do and that I should go home and live with the pain for the rest of my life. It was reading lots of posts on Spine Health and my own stubbornness to research for anything else that might help that meant I would go back to my local GP just to chat about these new options and, if he agreed, he would refer me on. I don't know where in the world you live, but I'm in the UK and am reliant on our 'National Health Service'. Like any business, the NHS is suffering with huge cutbacks at the moment and therefore the funding just isn't there for some treatments, but my doctor has never said 'no' and I have seen a total of about 5 consultants over the years (it may even be more, but I've lost count now).

    If you trust the doctors you had before, are you able to book an appointment to lay all your cards on the table and be honest with them - that the chronic pain you were experiencing led you to accept help, in desperation, from any professional prepared to give it. Can they start you off with a clean slate, allow them to monitor you more closely perhaps and try again?

    As "DNice" said above, take things one step at a time. Focus on one thing - you cannot be expected to tackle everything at once, i.e. the pain, the medication, the weight issues, relationships, lack of job/money etc. etc. That's just too much to handle. It sounds like the pain is your biggest issue (and if it was more manageable, then everything else might eventually sort itself out and fall into place), so focus on trying to get help from anywhere you can. Look on the Internet, get people's names and contact details, start with local health professionals first so you don't end up travelling long distances that would incur extra travelling costs etc. (your own GP surgery to start with and see how you get on from there?).

    Please don't give up. You will need energy, persistence and time to start the ball rolling and you may need to be pro-active to try and source the help you need, but you've lost nothing by trying, right?

    Please let us all know how you get on ok?
    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!
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