Visit to the rheumatologist: aka how not to scream (just)

So yesterday was my trip the rheumatologist.

As regular readers may be aware, my back has been in a very bad flare for nearly four weeks now. It’s been getting steadily worse and on Monday I was pretty much at the despairing stage. It’s incredibly difficult to concentrate on important work stuff when you’re feeling that way so on Tuesday I started doubling my usual dose of Arcoxia (strong anti-inflammatory) from the usual 60mg per day to 120mg. I am now on the maximum dose of the strongest AI they could prescribe me.

Didn’t touch it.

So by Thursday I was understandably not feeling my best.

Dr S. was running late so I had half an hour in the fabulously uncomfortable waiting room chair before I saw him. We had the usual “How are you doing?” conversation and I reported that my back was really quite uncomfortable. He read the letter from Prof G. and agreed to send me for physio at the hospital. It’s better than the limited stuff that the physios as my local surgery can do, but still not specialist stuff. However, it’s better than nothing and Dr S. recommended that I show them my letter from Prof G. when I see them so that they can start reading up on how to treat me. I’ll even give them a copy if they really want πŸ™‚

He was about to turf me out when I reminded him that my back hurts really quite a lot. He asked where so I described and showed the location and he began checking it.

That’s where the screaming comes in.

I’m hypermobile. This means that my joints can really flex an awful lot. Usually my back is incredibly flexible. Less so than it used to be due to twenty months of constant pain, but still pretty damn flexible. The first step was asking me to bend backwards as far as I could.

Er, I hardly got back at all before I went “Urf” quite quietly, which was better than the screaming I really wanted to do. Yes, it hurt. Grrr.

Then I had to straighten up. Um, ow. There was whimpering. And deep breaths. And, according to Mum, a very peculiar expression that is apparently my “Bloody hell that hurts but if I open my mouth I’ll yell so yeah” expression. Now I know why my colleagues look so odd when I’m having a particularly bad twinge.

I am definitely not repeating that experience.

I then bent forwards and put my hands flat on the floor with no problem, as usual, and tilted sideways in both directions just as far as normal.

Dr S. looked very odd when I turned around and sent me off for an X-ray pronto.

This was uncomfortable, but not to flexing my back proportions and they gave me a gown that closed at the back, which made me very happy.

Then it was back to Dr S. where I waited. And waited. Mum had to leave for a church thing and I waited some more.

Finally, Dr S. called me in and looked at the X-ray. All the bones are where they should be, no massive gaping holes where discs should be and just some inflammation around my lumbar fascias.

All that pain for so little visible result? This is my body all over.

He does at least believe that there is pain and says it will eventually get better. When I’m older and stiffer. In the meantime, because I’m not sleeping, he’s prescribed me a low dose of amitriptyline to hopefully act as a sedative and muscle relaxant (so I can finally have some sleep). It’s apparently quite good for nerve pain in those doses, according to my lovely pharmacist. I see him again in three months “Because we should probably keep an eye on you.”

I’d booked an appointment with my GP today in case Dr S. couldn’t sort me out, so I decided to go to that anyway to update him on what’s happening and check the ami-whatsit isn’t one of the drugs my body doesn’t like. We had a nice little chat, I confessed that sometimes I feel like I’m crazy to have so much pain for apparently no reason, and he was lovely and reassuring about it all.

Both my doctors seem delighted (and a little surprised) that I intend to continue working despite all of this. Go me.

If the ami-stuff doesn’t work, Dr M. the GP told me to give him a call in a week or so and we’ll review it and see what else we can try. He’s a lovely, understanding man.

Thus ends this week’s instalment of “ArcheryGirl and her wonky body”. Taking the first dose of the new stuff tonight and with any luck I’ll still be able to function tomorrow. I thought it was best not to experiment on a work night!

Hopefully the next instalment will be my hip MRI where I’m now praying that something will show up to prove my sanity.

5 Comments (+add yours?)

  1. CK
    Oct 06, 2007 @ 06:30:13

    Hi there – I too have EDS (Type 3) or hypermobility. The one things Ive learned is that our MRIs/xrays rarely turn up the amount of damage that one would expect with the pain levels. The idea is that we’re experiencing soft tissue or micro-trauma throughout the day.

    Having said this – it is good for MDs to rule out structural damage with the MRIs/xryas.

    and yes, you are sane. EDS just requires a greater disconnect (‘it shoudln;t hurt this much!”)

    Reply

  2. archerygirl
    Oct 06, 2007 @ 11:49:29

    My doc is nicely reassuring about my relative sanity, which always helps πŸ™‚ One of my docs thinks that there is structural damage to my hip (tear in the cartilage). He was apparently amazed that the other docs hadn’t done an MRI to rule out structural damage before putting it down to the EDS/hypermobility. Heh. So I’m going to be really interested in the outcome.

    I’ve got used to having relatively little visible damage when compared to the actual pain experienced, but thankfully my docs are not trying the “it’s all in your head, it will stop if you want it to” routine with me. Although one of them did have a “why on earth would you think you’ll dislocate something with crazy physio moves?” moment before checking my records – including the multiple dislocations from such complex tasks as walking – and looking very sheepish. He agreed that my physio may want to do some research before assigning exercises…

    Heh.

    In my more sadistic, malicious moments I get great satisfaction from being a medically confusing individual to my docs who have never dealt with one of us before πŸ™‚

    Reply

  3. Idetrorce
    Dec 15, 2007 @ 17:19:42

    very interesting, but I don’t agree with you
    Idetrorce

    Reply

  4. Trackback: EDS Alert Newsletter No. 21 « EDA Alert Newsletter
  5. Trackback: EDS Alert Newsletter No. 19 « EDA Alert Newsletter

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