30 July 2012

♫...What's in your head, in your head?...♫

Well... my jaw pain, allegedly.

Getting told that your physical condition is psychosomatic is disturbingly common. In the past it's happened to me but only over a period of a couple of months, and it wasn't a serious condition anyway.

In 2003 or 04 (I remember it was when I lived in Golders Green, which was from June '03 to June '04) I finally told my GP that I had trouble making out what people were saying, especially if there was any background noise. It had been a problem for about a decade but I'd not bothered to see anyone about it. As hearing loss caused by a fractured stapes is common in osteogenesis imperfecta my GP sent me to the Royal National Throat, Nose and Ear Hospital to get my hearing looked out.

When my hearing test came back fine, the registrar told me that I was mad and purely imagining that I couldn't hear. He referred me to hearing therapy to "teach [me] how to hear". The hearing therapist was horrified at how I'd been spoken to. She also gave me an actual diagnosis which explained all my hearing issues: Auditory Processing Disorder. Yes, it's a brain condition rather than an ear condition; but there's nothing imagined or "mad" about it. It's essentially 'sound dyslexia'.

I've had another case where I was told that I didn't have the medical condition I do actually have, but instead of being told I was imagining it; I was told I had a different medical condition. For years I was told that I had nothing wrong with my sinuses, that I was having migraines instead. After a couple of years of Idiot Registrar not being able to spot inflamed sinuses when they literally sneezed on him; he finally deigned to look at a CT scan of them. "Oh, there is something wrong with your sinuses after all" was his comment upon re-entering the room.

Rather ironically I now do have migraines caused by my sinus problems going untreated for so long. The lack of treatment damaged the nerves in my sinuses and you have nerves that run through your nose and into your brain. The damage to these nerves triggers migraines in me. So thanks for that little gift, Idiot Registrar.

My jaw became an issue about 3 years ago. The muscles started spasming and it subluxed pretty regularly. I would often wish someone would stand on the right hand side of my face to keep my jaw where it was supposed to be. One day I remember @BendyGirl tweeting that she'd just stood on a friend's pelvis to reduce it; so I responded along the lines of "great! Now get down to London and stand on my face to keep my jaw in its socket."

Over the years my jaw problems have progressed. I reached a crunch point in the first week of February this year: My jaw hurt so much that I spent the whole week so bombed on morphine that I didn't even notice when I re-fractured the metatarsal I'd originally fractured 6 weeks earlier. And my jaw was still more painful than I could bear.

So I went to see my GP and he referred me to maxillofacial. The referral was rejected and my GP was told to send me to the Facial Pain Clinic at the Eastman. He did.

So I went to the Eastman on Wednesday expecting an examination of my jaw, some x-rays and general usual hospital appointmentness.

My appointment was at 9:30, which was about when I arrived at the building. The clinic I was going to was in an area marked "2" so logically I went to the second floor. Area 2 isn't on the second floor. Then there was the orderly jamming the lift door open with a laundry cart with me inside. I mean I was inside the lift, not the laundry cart. By the time I reached clinic reception I was 18 minutes late. They refused to see me for "being half an hour late". Which is odd because I hadn't realised that we now had 40 hour days.1

I go to a lot of hospital appointments. Wednesday was my second appt in the space of 6 days. I think this is my first appointment ever that was running less than half an hour behind schedule which was why I was quite laid back about not arriving at the hospital bang on the appointment time. Smegging typical that the first time I encounter a hospital running on time reception is staffed by punctuality obsessives. But then I guess they would be the people who'd get a clinic on schedule.

They wanted me to go home and come back in September. Of course, I now know that it wouldn't have made a damn bit of difference, but at the time I was reduced to begging.

The doctor agreed to see me but I was then subjected to more tutting and eye-rolling from reception because I hadn't filled in my pre-appointment questionnaire, having banked on doing that in the waiting room.

I will say one thing for the clinic reception/waiting area: It's got aircon. Presumably because they also handle a lot of private patients. I guess if there's going to be a silver lining to the recent NHS Act it might be that with 49% of beds going to private patients we start to see hospitals that aren't all ovens.

The appointment itself lasted an hour which is unusual. You'd think that would be an example of excellent medical care, wouldn't you? Except it was 58 minutes of asking me about depression and 2 minutes of examining my face. Which really tells you what the clinic is all about.

Some gems from the consultation included his incredulity that the pain clinic have never sent me for counselling. Like talking about my feelings is going to stop my sinuses from hurting or cure my osteogenesis. I consider myself genuinely blessed to go to one of the few pain clinics where they don't go in for the bullcrap touchy feely stuff and just prescribe painkillers.

When talking about my sinuses he asked the question "and did they actually find anything wrong with them?" He was obviously working on the assumption that I don't have any real physical conditions and I just have conversion disorder. I'm surprised he didn't question my OI and claim I'm making my scleras blue by being miserable.

I should've foreseen what my diagnosis was going to be when I explained that because of my hypermobile hands I do things like unscrew bottle lids with my teeth and he was totally unperturbed. People who care about my oral bone health usually go batcrap over that; even though my lack of useful hands make it non-optional.

He clearly didn't believe me when I explained about the subluxing jaw. He kept saying "but you've never had your mouth get stuck open and been unable to close it..." He seemed incapable of understanding that hypermobile joints dislocate easily, but they go back in pretty easily too. During the incredibly brief physical examination he exclaimed that the distance I can open my mouth is "very good." I'd bet my cat's whiskers that before my jaw became problematic I could open it even further. Despite his acknowledgement of the existence of hypermobility, he wouldn't accept that I had it in my jaw and clearly didn't believe my jaw had ever come out of its socket.

Notably he didn't ask me if I'm on bisphosphonates; a common treatment for osteogenesis. An important question given that it could cause osteonecrosis of the jaw. (I'm not, so that's not my problem.)

Unsurprisingly my diagnosis is that my jaw pain is psychosomatic. The cure? Group therapy. Really. They don't just have psychologists on hand at the facial pain clinic though; they even have shrinks ready to dole out psychiatric meds rather than accepting that sometimes people have something wrong with their jaw.

Without any medical training myself I presume my knackered joint is causing my muscles to spasm in the same way that my weak hand joints cause muscle spasms when using a pen. Yes there is a stress element to it: Tense muscles get worse when you're more tightly wound generally; just ask anyone with cerebral palsy. But does that mean CP is psychosomatic? Of course not.

But what I am sure isn't psychosomatic is the crunching noise my jaw makes when I yawn or chew. It sounds and feels just like the crunching noise my right ankle often makes: A joint that's had its worn-outness confirmed by MRI.

So now I know why maxillofacial rejected the referral: They obviously saw citalopram and amytriptiline on my drugs list and assumed there's nothing physically wrong with me; I'm just nuts. Despite the bone disease...

What can I do now? Well there's not much really I can do except go along to therapy and talk about my fucking feelings even though the flapping up and down will make my jaw worse, if anything.

Other suggestions for treatment include "a relaxing activity with a physical element like yoga or gardening." Logic fell over and died at this point: I already garden and my jaw fucking hurts.

I'm also supposed to get some exercise. You know; like the miles I push and the swimming I do. I may have been priced out of going to the gym but I don't spend every moment of the day gawping open-mouthed at the telly. That noise you can hear? It's logic turning in its grave.

I love the NHS. As I've explained before a really important thing is giving feedback because that's how you help something you love function better. So hear this NHS:

You could save a fuckton of money if you stopped denying people medical help for years while they get worse claiming that the patient is "just depressed". It's the worsening which is where you lose the money. An assumption of conversion disorder should only be reached once you've ruled out all logical physical possibilities. It should never be a first stop before you've even carried out an examination. I know at least 10 people, probably more if I asked around a bit, who've at some point been diagnosed with conversion. One does actually have CD that fits, the rest were eventually given a physical diagnosis.

When I got home I was emotionally shattered from a shit appointment and physically shattered from driving back from visiting my dad in Colchester hospital the night before. I immediately crawled into bed. Thank goodness for cats: Betty decided to take my mind off things by lifting her tail up, reversing in and then sitting down on the pillow with her anus about 3cms from my nose. Finally something to laugh at on a miserable morning.


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1 Thanks to Robin for the maths help with that one. @Uppo1963, @latentexistence, @PatParslow, and @indigojo_uk all answered my question also; but Robin got there first.

7 comments:

  1. Anonymous10:57 a.m.

    Hi Lisa - I have hms/eds and also get a lot of jaw pain - I am also in a group of us in Manchester - nearly all of us have jaw problems - it is extremely common with hypermobile people - I was also sent to a pain clinic about 5 years before actually seeing a rheumatologist and getting my diagnosis which is known as the 'bull**t years' (it was a touchy feely one' despite a physio there assessing me they didnt look for or spot the hms. It was another physio who spotted it. Im wondering if your gp or this pain clinic your at would refer you to a physio as they do seem to be a bit more up on hms probs than they used to be. coincidentaly also have inflamed sinuses and a lot of migraines - but was told by neurologist they werent related? (((Big Hugs))) and I hope they see sense with this and you get the treatment you recquire - which is physical for a physical problem!! xxx ♥

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  2. God, it's depressing that there are people in the medical profession that are so bad. And ultimately I'm not sure I wouldn't file this kind of dismissal of the patient's needs and medical evidence as a form of disability hate.

    Fingers crossed you eventually negotiate your way around the disablist f*ckwits and get the treatment you need. Do your OI peeps not do maxillo-facial, can they recommend/refer you to someone sympathetic/with a clue?

    As for amitryptiline - try finding someone with Chronic Pain who hasn't been prescribed it at some point!

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    Replies
    1. I'm going to ask the OI specialist when I see him in October.

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  3. I'm really sorry you've been through this. It has only really happened to me once (surprisingly enough, given my diagnosis - I've had a few doctors who gently implied a psychological element, but only one who was like this). Fortunately for me, I spent the appointment in giggles, and it was only a GP I saw when my regular GP was away.

    "An assumption of conversion disorder should only be reached once you've ruled out all logical physical possibilities."

    You also need some theory as to what's being converted, so to speak. If someone has not experienced any stress or trauma and they have unexplained neurological symptoms, it is probably more useful to accept the absence of diagnosis than to treat them as if they have a mental illness. Being treated as if you don't know your own mind - when you feel fine but are being told you are actually in great mental distress - is fairly damaging. And to be honest, when you have a mental illness and physical symptoms, it's fairly damaging to be told that your mind is manifesting these symptoms, unless there's very strong evidence to suggest actually true.

    The default position, if symptoms are unexplained, should be that symptoms remain unexplained. In this case, your symptoms aren't even unexplained, so it is truly appalling.

    Also, group therapy for people with jaw pain? Really?!

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  4. OFFS! I should be shocked at this but I won't be. Ignorant disablist fuckers. Assuming jaw subluxion is in your head FFS. A friend of mine with HMS has had jaw issues and they sound really scary and vile.

    I know the RNOH pain clinic who I saw 9 years ago managed to find a good line between acknowledging psychological impact and not dismissing people's real issues. I got proper painkillers from them and a friend who mid-rehab did crackup cos of stuff in their head got permission to delay the second half of rehab till they were in a better headspace. The key is working with it, not assuming :(

    I see disabled clients in my job every day who push incredibly hard like we do to live-with annoying impairment shit. Many of them get the psychosomatic crap and it's SUCH a joy to find an actual trigger/cause that they can avoid or rectify and give the unholistic egotists in the medical profession the "you didn't see this person as a person" "if you'd looked at onset occupationally you'd see correlations!".

    GRRR. I hope your GP is an unimpressed as you are as a stinky letter from them might actually get lstened to, but FFS! And what the fuck do you do now :(

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  5. I agree that a psychosomatic diagnosis shouldn't be given until physical causes are ruled out.
    Just wondering, has anyone ever said to you that psychological treatments can be very effective for pain even when it has an entirely physical cause? So offering counselling or group or something else talky isn't necessarily saying it's all in your head. It can be "so you've got this pain, which is crap for you, and we've got drugs and painkillers etc for you, but also try out [insert talky therapy here] because it can help you find ways of managing the pain. And if there are other ways of managing the pain, you can reduce the painkillers and still have pain controlled, and therefore be less off your eyeballs on painkillers"

    The example that I always think of is endometriosis - it's got an obvious physical cause, and in an operation it can be clearly visible in the pelvis, on the ovaries and bowel etc, and samples of it viewed down the microscope show abnormal tissue - definitely a physical problem, causing often severe pain. It can be treated with surgery or hormones or painkillers to treat the physical cause, but people also find benefit from mindfulness, patient groups, hypnotherapy etc even though it's a physical cause.

    Would be interested to know if anyone medical has ever put that concept forward to you. If they were to, would you be more likely to accept the psychological treatment if you know they weren't necessarily thinking it was a psychological problem?

    Hope your jaw improves.

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