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Pain: “whatever the experiencing person says it is, existing whenever the experiencing person says it does.” McCaffery

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I wrote a post last night, published it and then pulled it down. It was far too much to see all of those words, all of my feelings written down for everyone to see.

I have put years of effort in to trying to manage my pain and all of the strange things that my body does without any help.

The physio in the pain management team feels that my pain stems from a lack of physical activity, they ignored or did not care about the fact that I was at one time going to the gym 4 times a week and was extremely fit and yet still in pain from my pelvis,

They ignored the fact that the pain in my hands, wrists, ankles, fingers, feet, elbows and shoulders began 3 years into my pain journey and that up until this time I had taken no pain medication, preferring to try to manage it on my own.

Having to go and ask a doctor for drugs for pain was the most humiliating thing I have ever faced, but the relief I felt at being able to move around again in minimal pain? It was life changing.

They ignored the fact that when my arthritis meds started working I took myself off of pain medication and went 3 months with nothing, managing that lesser degree of pain with other methods.

Having to go to the gp again for pain relief, when my arthritis symptoms returned felt like such a failure on my part.

They implied that “young women like me become readily addicted to the feelings they get from pain medication”, despite the fact that I have told them I do not get pleasurable feelings from my pain medication and had no trouble weaning myself off of them when I no longer felt I needed them. I have only been taking pain relief again for a week and at a much lower dose than I previously was having. They ignored the fact that I consider each dose of pain medication I take and try first to minimise my pain through other means.

They suggested that my Rheumatologist (who is well known and respected in her field) has prescribed these very serious arthritis medications without actually proving (to their satisfaction) that there is anything wrong with me. They made it clear that they don’t believe that my joint inflammation, which is often visible and always detectable on examination of my joints, is real.

They are insisting that I have an entirely new battery of tests, some of which are very invasive and (from what I understand) unpleasant in order to prove that I have a real rheumatic condition.

They took my husband’s mention of my easy bruising as a sign that my arthritis drugs may be harming me and are therefore unnecessary despite the fact that I told them I have always bruised very readily.

They want me to take anti-depressants, beginning immediately, but repeatedly lectured me about the dangers of all of the medications I am taking.

I was too intimidated to tell them that I would prefer not to try anti-depressants until I have tried the various approaches that the psychologist recommended to manage my pain/depression, I wimped out.

I feel as though I have been labelled a hypochondriac and a drug-addict with no real medical problems.

The day that I first saw my Rheumatologist and she examined me and noted that there was indeed significant joint inflammation, despite the fact that my blood tests were not typical of a patient with this type of inflammation (and proceeded to treat me accordingly)  gave me the most relief and hope that I had had in years.

I now feel that I should stop taking my pain relief, these pain doctors clearly feel I am not entitled to it. If it is all in my mind or because I am too lazy then I guess I am not.

If all of that help is taken away and I have to go on suffering, left to my own devices, I don’t know how I will go on.

I am at my lowest of lows.


10 responses

  1. I’m sorry. I’m in a similar position. Though my pain isn’t evident on a physical examination – my joints *look* fine. But my blood tests reveal a serious systemic auto immune inflammatory condition. It’s just that noone can pick which one, or pick a treatment.

    I’m so sorry you’re feeling this way. it’s horrible. Humiliating, degrading and sometimes it feels so hopeless, doesn’t it?

    If you want to talk, you know where to find me (blog or email).


  2. Darling girl….

    This is just horrendous. I wish you were in Sydney because my GP thinks that the priority is always to get rid of the pain FIRST, in order to avoid the depression that is inevitable when pain exists and to give my children the best mother (ie not grumpy and in pain) that they can have. He always looks for the cause, explores other avenues, but would never EVER take you off pain killers to leave you in pain.

    I have SO much pain relief in my cupboard. More than I could ever use. Every now and then I stop for a couple of days just to prove that I can.. and I always can. That’s the thing when you’re in REAL pain… the drugs don’t give you the addictive “high”. They just make you normal again. When you’re in REAL pain, it’s very VERY difficult to get addicted. unless you consciously keep taking the drugs when the pain has stopped. Well, that’s how it is for me.

    I only have arthritis and 2 bulging discs. And I’m lucky because, although my arthritis is painful when it’s about to rain, it’s very manageable. My bulging discs however… well I don’t need to tell you about those.

    Want me to send you some Endone? Seriously.

    I wish SO BADLY that you could see my doctor. He’s not “prescription-happy”. He always spends half an hour discussing EVERYTHING with me.. he treats the whole person not just the pain… but he trusts ME. Something that seems to be missing with your own docs.

    Ditto Liss. I’m here if you need to talk about it.

    much love xoxoxo

    • Thanks Fe. You really hit on something there, I think there is an issue of trust with my GP, which is a bit disappointing as I have been so responsible with all of my medication. I’ll let you know if I need any help with endone!

      I am hoping that I can have a clear discussion with my GP next week about providing me with “just in case” endone instead of having to go week by week and have nothing to turn to if I have been managing for a while and suddenly have a really bad pain day.

  3. Oh Ali,

    I want to come and hug you. I have BEEN there and my heart breaks to see you there too. I’d also like to throw rocks at your most recent doctors, but that’s my own issue.

    I emailed you too. xxx


  4. bloody, buggering shits, every last one of them. I hates em on your behalf. I know that doesn’t help at all, but seriously. They are rubbish. Absolutely rubbish.

  5. Katyboo1 said it best.

    I was thinking about this and realised that doctors would never get away with all their crap if they weren’t dealing with vulnerable people. Catch me on a good day and I’ll take that bitch opthamologist up on her bullying, abusive behaviour, but when I’ve been in pain for a day and sitting in an emergency room for four hours, I’m just going to sigh as she humiliates me in front of my children.

    • Exactly. I think some doctors lose an essential part of their humanity over the years just because they are forced to numb themselves to the pain of others to function. I will never forget when (as a health professional) I realised that although my many daily interactions with people were routine and sometimes monotonous for me, they were a very memorable, significant interaction for the person on the receiving end. I always kept that in mind and treated each person accordingly. I think a lot of health care professionals need to be reminded of (or just taught) that fact.

  6. Here I am thinking that I would drop by here and find that the testing, testing and more testing would come back with a miracle treatment. I just wish that your doctors could read all about you, to know that you do everything right and meds really are the last resort for you, that you do need help to be the you that you should be. I hope you do find a GP that gets who you really are and will help to keep you comfortable and feeling yourself as you both look for answers. ((hugs))

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