The Liver Doc, GP and the Corkscrew Spine

I am feeling very low. Some of it is exhaustion, I think, and some of it is The Pain, and the rest of it? Well, the rest of it is probably just me.

Anyways, Doctor updates first. I saw the Liver doc last Wednesday – lovely chap, actually had some good knowledge of EDS. He’s not convinced that The Pain is being caused by the liver, so he wants to check the pancreas and the duodenum. I have an endoscopy on Thursday and a CT scan on Friday. I don’t like the fact that I didn’t get any answers as such, but I do very much like the fact that a doctor is listening at last and that things are moving a bit quicker now. He’ll be the one doing the endoscopy and I have another appointment with him for February 8th.

The following day, Thursday, I went to see my GP. I think I’ve already said that he’s quite an affable fella and has two or three other patients who also have EDS, so he isn’t ignorant of it at all, (like so many other GPs are). He is also trained in Accupuncture, which is offered for free at the surgery. (I’ll be getting that regularly, once we find out what The Pain is.) At the top of my list of things to talk about – and it was a physical list, as I’m very forgetful – was the fact that my toes and feet keep ‘switching off’ (they go blue and ice-cold). For once, my body decided to help me out instead of always being against me, and my feet started ‘switching off’ whilst en route to the surgery. By the time I was sat before the GP, the big toe on my right foot looked like that of a corpse. He had a look, felt it and straight away said, “Raynaud’s Phenomenon. Do you know what that is?”, to which I replied that I did, as my mother has it in her hands. He told me it was rarer in the feet and could be a sign of an autoimmune problem, so I asked him if I could now see a Rheumatologist. He scribbled on a bit of paper and said, “Yes, no problem”. Result. I’ve been trying to get an appointment with Rheumatology since I was first diagnosed 10 years ago, but my old GP was always very resistant (due to her ignorance of EDS).

Then he asked me if I wanted the results of the x-ray I’d had done on my back the week before. I’d forgotten to put that on the list! Of course I wanted to know, so he preceded to read out the list of what had been found. Kyphosis, Scoliosis, Lordosis, vertebrae displacement at C7 and Arthritis of the neck. He said that my spine was “twisted every which way it can be, like a corkscrew”. Another brilliant result. Now, I’m aware that sounds odd – why is she pleased about having so many things wrong? – but I have been begging for a back x-ray for years due to the trouble I’ve had with it and my mother was constantly taking me to the GP about the fact that I couldn’t stand up straight. Finally getting one and then having all of your thoughts validated by a doctor, (which seems to be very difficult for EDSers), is a wonderful thing. I just wish I could turn back the clock and have a go at all those people who, over the years, have grabbed me by the chin and pushed my back in, saying, “you need to straighten up girl!”

One surprise though, is that what the GP thought were extra ribs, are in fact rock-hard muscle. He was quite shocked by that, as he was convinced it was bone he had felt.

The only thing that displeased me about the appointment, was the fact that I have given in and taken my first step on the ‘Pain-Relief Ladder’ – the only way is up, baby. Well, I say first step, I have gotten to this point before and asked for pain-killers, only to reject them after a couple of days because I hate feeling so doped-up. I just know that this time there is no going back – not unless the accupuncture works a miracle, that is. It’s just Co-Dydramol at the moment, which doesn’t touch The Pain, (in fact it makes it worse, sharper), nor does it get rid of the joint pain, but does make me feel ‘away’, so I suppose that’s a difference of a sort.

I’m hoping to get a decent amount of sleep tonight, because tomorrow morning I’ve got a couple of friends coming over who I haven’t seen since I became ill. I’m looking forward to seeing them, but I am anxious about it all the same, because I know I look so different now, and not in a good way! I know it won’t bother them, as in they won’t think any less of me, but I know it’s going to shock them and I hate seeing that look in people’s faces. And to be honest, I’m worried about what I’m going to have to talk to them about apart from illness and pain. Hopefully they will have enough gossip to keep the conversation going.

It would be lovely to feel like myself again, or to feel like any kind of human being, to be honest. I’ve resigned myself to the fact that I’m probably going to be on anti-depressants for the rest of my life, however much it still niggles me. It is very difficult to escape depression when you are have chronic, constant pain, however many other blessings surround you.