Tuesday 31 January 2012


Again, catharsis and too-early morning ramblings. Feel free to skip.

Dear GP,

It's 5.25 am. I got up to take painkillers at 5. Pain woke me up at 3.30. I'd been counting down the minutes to my last dose at midnight so I wasn't expecting to get much sleep. I held off taking the dose this morning until I had to, because a dose this early means I have to skip one of my normal daily doses and I have my theory test later on.

This is what I mean when I say my pain meds aren't adequate. I'm not looking for all of my pain to go away and I know I need to find balance between pain management and being able to function in a non-zombie fashion. I resent it when you tell me to try non-pharmacological options because that silences and devalues all of the work I have done over the years to manage my own pain non-pharmacologically. All of the work I continue to put in.

Most of the time I don't know what's breakthrough pain and what's just unmanaged chronic pain. The tramadol/paracetamol/amitriptyline keep it manageable on the good days. Most days it doesn't touch it. In your opiates are sedating 'splaining you forget just how bloody distracting and soul sucking pain is. I know you find it hard to believe because the one time you took a 30/500 cocodamol you got really drowsy, but there it is. I can't concentrate when every joint in my body is screaming.

It's 5.30 am. The left side of my body is in spasm from the sacroiliac down. I have nothing to ease the spasm, despite asking, nothing to add in to my normal meds to ease the pain of four major joints all forced into partial dislocation by angry, knotty muscles.

When you don't treat my pain, you make me feel like a liar, you make me feel like you don't care, you make me feel like someone who isn't worth taking the time to treat and then by extension you make me feel like someone who deserves to be in pain.

I don't know how I let you inside my head enough that you are able to make me feel like I'm someone who deserves to be in pain that doesn't really exist. You make me doubt my own senses.

Do you know how many times after our appointments I've had to stop taking all my medications, to get the full burning picture of pain back just to prove to myself that I wasn't making it up?

The thing that scares and confuses me most is that if you were sitting here in front of me I wouldn't be able to tell you this. I would ask for something for the breakthrough pain, you would refuse (I'm on plenty of opiates for someone of 24 you would say, you don't want me to be really sleepy and zombied tomorrow, I need to learn to cope with pain and not be reliant on painkillers, I'm lucky really because I don't have rhumatoid arthritis and have I given any more thought to taking that herbal remedy that's an unproven treatment for a disease I don't have?) and I would cry. I would beg. You would tell me that I really should stop taking the tramadol regularly, because you're obviously building up tolerance so of course it won't help.

Beanie would try to fight my corner for me, but because she's a medical student, she's obviously doing it to be a know-it-all, not because she's the one who holds me and strokes my hair, sings to me, distracts me, loves me when the pain is unbearable.

And anyway, because this is the truly relevant question, how's my mood? I say that it's fine, that I'm not in pain because of depression, that I was very depressed for a very long time but I'm not anymore. You will tell me, with no apparent understanding of the irony, that chronic pain can cause depression, y'know. I will not shout you're telling me my pain is all in my head but that the pain is causing the pain to all be in my head, while refusing to treat the pain or the serious psychological pathology that you are claiming is the thing causing my life to fall apart?

Nor will I shout when I *was* depressed you treated me like I was making it up, like I wasn't worth wasting time on and therefore like I deserved to be depressed. Sound familiar?

Nope. Once again I would just get the message that I am a liar who deserves to be in pain.

That is too messed up. What's the point of practising assertiveness when that's not even the problem? When it's just that I'm dealing with "health" professionals who make me feel like I'm not worth self-advocating for? How did this situation end up in such an awful mess?

I'm so scared that this experience is going to poison every GP relationship I ever have. Logically I know that there are good doctors out there. I know some of them. But pretty much every doctor-patient relationship I've had has been so screwed up that I can't trust that it will ever be better. I'm so worried that the new GP will see my old notes, with lacklustre descriptions of a young woman with a mental health history, chronic fatigue and chronic pain, and just draw the same conclusions as you have obviously drawn about me.

You know what I should say? I am worth fighting for. I will not let you devalue my experiences and my work in caring for my own body. I will not let you devalue the experiences and caring work of Beanie and other family and friends. I will not let you make me doubt myself or my body anymore.



  1. I'm really sorry you're going through this and wish you the best of luck with a new GP practice. I've been very lucky, having been in a non dissimilar situation with trammadol not touching my pain in my mid-20s, especially as I have ME and some people with that label - especially if extended to the huge umbrella of CFS - don't get pain at all.

    However, the best thing that happened with my pain was seeing the pain specialist. Since then, I have had one new GP responding with shock and horror at my meds, but then I just explained it was what the pain specialist thought appropriate. Sometimes (like, at the moment), the pain edges up beyond what I could live with long term, but I feel much safer than I used to because I know I could always ask to be referred back to her.

    I have been very lucky with doctors generally, but the pain specialist was one who really treated me like we were two experts discussing a problem - I was an expert in my experience, she was an expert in pain medicine and together we worked out what to do. She also gave me advice about looking after my body that was new to me. Not that all pain specialists will be so dreamy, but still.

    This, incidentally, isn't advice - I've got a feeling you've mention pain clinics recently but can't find it now - but just maybe, a little bit of hope. I really hope you get the GP sorted asap though, and in time, shake off this sense of being disbelieved that these experiences have given you.

  2. Thanks for this =] It really helps to hear that other people have had positive experiences, because it's more evidence for the there-are-good-doctors side of my brain!

    "I was an expert in my experience, she was an expert in pain medicine and together we worked out what to do" >> this is so important. I want to work in partnership with my doctor - not have one who doesn't listen to me, or on the other foot be like a previous GP who would do / prescribe anything I even suggested without any pro / con discussions.

  3. You need to see another GP and you you need to do it now. This is not the way you should be having to deal with chronic pain. I have definitely been in your shoes. It's horrible. I am reasonably fortunate in my practice as I never see the same GP twice. I know this sounds daft but bear with me. The GPs look at my notes and get confused. They don't have enough time to read it all in the 8 mins that we have for the appointment. I basically tell them what I need and they give it to me. It has taken me 11 years to get here. I now basically don't take any crap from GPs because they are not specialists, they have to look up stuff in a book that I know off the top of my head, because I am a specialist in my body. It is was this shift in my own head about taking control and not taking any crap that has transformed my treatment. Once a GP sees someone who is calm together and unflappable, and won't be deterred unless there is a damn good reason for it, they tend to listen. There aren't any shortcuts to getting to that place I'm afraid. There are no magic wands I can wave to help you suddenly click into Robo-Patient mode around the medical profession. It is a hard won and exhausting process. Just know that with every little triumph you fight for and win, you will get stronger.

    I hate that you are having to go through this. It's horrible and it's unnecessary. Are there any other GPs within your practice that you can see? My first step to gaining control was seeing a new member of the practice about 3 years ago who happened to be an anesthetist before joining the practice. She knew about pain control and gave me more info in 8 mins than I'd had in the previous 7 years. I only saw her once, but it really helped. After that one good experience I was less tense before an appointment which makes a big difference.

  4. Thanks Stitched Together. Tomorrow I'm picking up my month of repeats from my GP and then I will be registering with a new one later this week. I think that going into a new GP with a diagnosis and a wheelchair will already make me more 'convincing' than for the practice who knew me before this happened, at least I know that I will feel more confident. I value continuity of care but the relationship with my current GP is so poisonous to my wellbeing that I think I need to start over with a new practice. The new one comes recommended by a fellow bendy, which seemed a good place to start =]

  5. I'm having similar problems with my GPs. "You already take a lot of tablets", they say, as if having multiple impairments is a lifestyle choice.

  6. "Can you switch my lactulose to docusate because lactulose gives me bad stomach pain?"
    "Then just stop taking it"
    "If I don't take it my tramadol makes me constipated"
    "Then stop taking the tramadol"

    Luckily for me docusate is available OTC so I'm ok for the moment.

    I have *never* had any problems getting an asthma inhaler.

    We've chosen to be disabled to give us an excuse to be angry (we are awfully emotional, us women)

  7. So sorry your experience is so very different from mine. I have a lovely, lovely GP who sometimes comes to see me at home because he thinks it will be easier for me - not because I need it! And although he gets a bit edgy about how much morphine I'm on, I've changed pain clinics and my new pain specialist is much more realistic about the morphine than the previous one so if my GP needs to check he gets a reasonable and sensible reply! Really hope things improve for you with a different GP. A good GP is a very valuable asset :)

  8. I'm really sorry you've been going through this. I've been suffering a lot since September and going through the NHS system with plenty of tests and medications to try to bring my pain under control so I do know just how awful it is especially when you're told there's nothing more they can give you. I'd seriously suggest going to another doctor because this just sounds horrendous and you deserve a better standard of care than you've been getting.

    It does get better which I know when you're in agony you probably can't see but you will get better care soon. You have to. You're in too much pain to be ignored and there really are good doctors out there.