Pain Clinic Calamity.

UPDATE 07/22/14: A few days ago I received a call telling me that my application to the pain clinic had been approved.  However, the new wait time is TWO YEARS. Oh my…

Oh pain clinic, why have you forsaken me?  You hold the key to my relief, yet you are cruel and remain eternally distant…

It’s no secret that I suffer from throbbing, burning, sharp, intense chronic pain in my legs, feet, hips and back – even though I experience numbess in those areas as well. Odd, I know.  It also is no secret that I have been waiting forever to get into a pain clinic for help managing that pain.

A little back story…

One of my home care nurses contacted my family doctor in September with the suggestion that he refer me to the pain clinic.  He didn’t.  Anyway, this was not discovered until February.  Apparently my physician assumed that my neurologist sent the referral, so therefore he did nothing.  That is pretty logical, since my neurologist specializes in that type of pain and has more clout at the pain clinic than a general practitioner. But I digress…

In April I had an appointment with my neurologist.  I brought up that I needed a referral to the pain clinic.  He advised me to get my family doctor to do it, since he didn’t want to step on another doctor’s ‘toes’ (grrr !@#%).  I explained to him that my family doctor hadn’t – and that he suggested my neurologist do it since this was his area of expertise.  He agreed and his assistant claimed she would get right on that and write a referral for me.

Fast forward to a month later.  No word about the pain clinic. To touch base, my mom called my neurologist’s office to ask about the status of the elusive referral and was informed there was nothing written about it in my charts! Seriously?  I guess the doctor’s assistant didn’t get “right on that” as she had claimed.

Feeling frustrated, neglected, and of course – in pain, I made an appointment with my family doctor.  I explained the run-around I’d gotten and how nothing had been done, except for assumptions that someone else had done something (confused now? I am).  He reminded me that the reason he hadn’t sent a referral back in February was that he believed a referral from my neurologist would have bypassed some of the current 6 month waiting period.  Flabbergasted, I asked him to write one up anyway.  At this pace, 6 months seemed better than another 8 months of confusion (ugh!).  So, I sat there and watched as he took out a sheet of paper and wrote the words I had been waiting for all these months!

A few days later I received a 5 page assessment form to fill out for the pain clinic. It consisted of standard questions about which medications I take, which areas I feel pain, the intensity of the pain, and so on.  Now it’s just a waiting game!

I believe going to the pain clinic will be crucial in helping me cope with my physical suffering.  At the moment, my medications are not easing my pain and there is nothing anyone can do to aid me except for increasing my dosage (which we have been doing), but that is not something I want in the long run! I don’t want to become some spaced out zombie – unable to feel anything. I’d rather be in agony than that.

I continue to remain hopeful about the situation and now wait patiently to receive the call from the pain clinic.  In the end, I believe the wait (and the frustration involved) will be well worth it. Ring, phone! Damnit! ;)

Thanks for reading. Diane.

A sheet from my pain assessment form.

A sheet from my pain assessment form.

7 Comments
  1. 5 years ago
    Gui

    You need to be on their ass everyday! call and demand it! if they tell u theres nothing they can do ok, but call again the next day! and again and again.. thats the only way these people get anything done!

    Reply
    • Diane5 years ago
      Diane

      Yeah, I found that out the hard way. :D

      Reply
  2. 4 years ago
    Shayna

    Note: I hope you don’t mind long comments… I wanted to respond to several of your journals, but I figured it would be easier to just mash it all up into one. Well, two… this is just the “ridiculously long comment ahead” warning.

    …. also, are you originally from Dunnville, ON? I think we may have gone to high school together :)

    Reply
  3. 4 years ago
    Shayna

    I know that Canada’s socialized medical care system is far superior to the one in the US, and to those in a lot of other countries around the world, but just like clothing and furniture and food, sometimes you really do get what you pay for. It’s great that we don’t have to pay thousands of dollars to see most doctors and specialists, but we also usually don’t get to choose WHICH particular specialist we see. It’s very difficult for Canadians to get to see “the top neurologist in the country” or the “most well-respected psychologist.” We just get stuck with whoever we’re referred to, we wait for months for an appointment, and then if we want a second opinion we have to go through the whole process again.
    I can empathize with you (to a certain degree) because I have also had a lifetime of health issues. Some are physical: I have had three surgeries on my feet to correct/restructure flatness so severe that it caused osteoarthritis in my ankles, knees and hips starting from around the age of 11 or so. And since both feet are so weak, when I have surgery on one foot, I can’t just use crutches because the other foot would collapse with all of my weight on it. So I spent 4 months in college in a wheelchair. Which, as I’m sure you’ll agree, REALLY, REALLY SUCKS. OHIP does not cover wheelchair rental fees for “temporary” disabilities, nor do they subsidize transportation costs (I couldn’t drive with a cast on my foot).

    Reply
  4. 4 years ago
    Shayna

    *I promise, this is the last giant comment…*

    My biggest problem with the medical system here, however, was (and continues to be) getting help for my mental illness.

    Despite showing some very obvious symptoms throughout my entire life, and despite seeing at least fifteen or more psychiatrists, psychologists and counselors starting from the age of SIX, I did not receive the proper diagnoses for my problems until I was 31, after the psychiatric nurse who was counseling me had me forcibly committed into St. Joseph’s Hospital because she was convinced I was going to commit suicide if she let me leave.
    During those 25 years of severe depression, mood swings, suicidal thoughts, drug use and other self-destructive behaviour I was prescribed TWENTY-SIX

    Reply
  5. 4 years ago
    Shayna

    sorry

    …TWENTY-SIX different anti-depressants and 4 anti-psychotic medications. The majority of these had little to no effect, or none that I noticed at the time. A few of them caused significant bad reactions: severe paranoia, hallucinations, blackouts during which I drove, went shopping, used someone else’s bank card, came home and cooked dinner, remembering absolutely nothing.
    My diagnosis was the extremely general umbrella “severe clinical depression.” The treatment, invariably, was to throw medication at it, raise the dosage, raise it again, raise it again, again, again, give up, try the next one in the alphabetical list in the DSM IV. For many, if not most, people, this works… the average patient tried between 4-6 different meds before they find THE ONE. 26 is apparently shockingly high. According to my current shrink, the doctors who gave me the last ten or so should lose their licenses, because it should have been obvious after fifteen that anti-depressants were not going to be the answer.

    My mental illness, whatever it was, almost killed me. I alienated, pissed off and drove away all of my friends and relatives. I became a drug addict because my depression was so severe that any time I was sober all I could think about was killing myself. This broke up my marriage, and caused my ex to take my children away from me… and despite being sober for over two years, he still won’t let me see them.

    As strange as it may sound, being committed into the psych ward was one of the best things that has ever happened to me. I spent the first week completely withdrawn. I wouldn’t speak to anyone, barely ate, barely got out of bed. But one of the two mental illnesses I was diagnosed with there was ADHD; sitting around quietly for a week is not only out of character for me, it’s almost IMPOSSIBLE. Once I acclimatized, and realized that the looney bins in One Flew Over the Cuckoo’s Nest, Shutter Island and American Horror Story season two: Asylum were, y’know, NOT REAL PLACES, I realized that for the first time in my entire life, I had the chance to have the system WORK FOR ME, instead of me having to fight to get treatment outside.
    Inside, the doctors and nurses were dedicated solely to helping me get better. I was just one of 200 patients, like I was to my GP and the last few shrinks and counselors I had seen. The therapy in there was much more intensive, since the goal was to figure out what was wrong, figure out how to treat it, and then figure out how to function out in the real world afterward.
    Almost immediately, I was given two diagnoses that I had never been given before: Attention Deficit Hyperactivity Disorder and BiPolar Disorder. At first I was skeptical… I have been this way my ENTIRE LIFE, and I had seen so many different specialists; how could NONE of them have picked up on these? Besides, I knew kids that had ADHD in school. They were the class clowns, the obnoxious kids that couldn’t sit still, that spoke out of turn, that wouldn’t pay attention. Then I did a little research, and it was like a light bulb turning on. This was why I can’t just sit and watch tv, I have to be playing a video game, chatting on facebook, reading a book and painting my toenails at the same time. Why I can’t sit in a doctor’s waiting room without without listening to my mp3 player, reading a book and pacing up and down the room. Why after I learn a new song on guitar I immediately stop playing it and learn a new one. Why I NEVER, EVER managed to start a school project earlier than two days before the due date. It was amazing. It explained so much about my personality! Now I take Concerta and sometimes I actually FINISH things that I START! Just imagine what could have happened if I had been taking this medication in school… But because there was no communication between doctors and teachers, or teachers and parents, and at that time there was little information available, I wasn’t diagnosed until I was 31.
    The Bipolar Disorder was even more shocking. I said, “You can’t possibly tell me that I’m manic-depressive. Depressive, yeah. But I’m NEVER excited and happy and UP.” Because this is how the disorder had been described to me by every shrink and counselor I’d ever seen. “Up” periods followed by “Down” periods. But this was miscommunication. Not one of the specialists I had seen had ever explained what a “manic phase” really meant. I won’t get into the details because I think I’ve been typing for like two hours and you’re probably sick of reading by now :) But suffice it to say, it was another light bulb. It was another thing that explained away so many of the things I hated about myself. Suddenly I realized that it wasn’t my fault. I wasn’t a bad person who did bad things because I didn’t try hard enough not to, any more than a paraplegic can’t walk because they just aren’t trying hard enough.
    The diagnosis did more than just boost my self-esteem, though. It gave me the tools for treatment. I will always be manic-depressive, but like diabetes, my illness can be controlled, or at least managed. One of the tools I was given by St. Joe’s was Dialectical Behavioural Therapy, which is kind of a cross between Buddhism, the Alcoholics Anonymous 12 Step program, and psychotherapy. This system is TOTALLY not a cheezy self-helpy kind of thing, but it’s incredibly effective and can be used for ANY sort of negative or unwanted thought pattern or behaviour, even addictions and OCD.
    The biggest tool I got, though, was the right meds. It is actually very dangerous to give someone who is Bipolar most kinds of anti-depressants. They cause backlash effects which often make the depressive phase much, much worse. So because I was never given proper psychiatric treatment by a proper psychiatrist, and because obviously none of the doctors looked at the files from the ones I had seen before them, I spent FIFTEEN years taking 30 different kinds of meds that were MAKING ME MUCH MUCH WORSE. I lost my kids, my marriage, my family, my friends, and on a number of occasions almost lost my life, and it all could have been prevented if someone had caught on to what the problem was when I was six or seven years old.

    Keep fighting the good fight, Diane!

    Reply
    • Diane4 years ago
      Diane

      Hey Shayna,

      It is so great to hear from you – I just wish it were under more positive circumstances.

      First of all, my sympathy to you in abundance. Mental illness is often not taken seriously, so I could only imagine all the stigma and ignorance you must endure on a daily basis. xoxo

      It almost makes me feel guilty to complain about our free healthcare, but there is a lot to be improved upon, and in a lot of circumstances where people are not properly diagnosed quickly, their condition may – and usually often does – become permanent. :/

      On a lighter note, we did go to DSS together. Your name rings familiar. I was born in 78 – so was a DSS 90’s girl (team gold, lol).

      Thank you so much for reading through all this mumbo jumbo stuff of mine, reaching out – and especially – sharing your story.

      Thanks again,
      Diane xoxo

      Reply

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