Hi Leesa

Thanks ever so much for your reply. It means a lot! This might take me a while to type as I can't sit to type today and also have RUQ pain today (and tummy problems) on top of my pain so might have to keep coming back to this.

Last time I got an appointment for the pain clinic was last April (not counting the facet joint injections as I didn't get a consultation with a doctor then), and as I was leaving the doctor asked me to consider whether I was ready to have more surgery. It was a passing comment and my answer was and still is a resounding yes if it will help. But I didn't know then they would keep me waiting over a year to see them again. The request for an urgent appointment went from my GP to them after I hadn't heard from the pain clinic by September last year, so it's not just from now til May that the wait entails - at the very least it's from September and to be fair I should've already seen them by then too. By October I was in such a bad "flare" (which has carried on since at the same and worse level without break) that I was begging them to see me, and their response was to send an appointment for the end of April (next month) which they since cancelled and postponed due to "doctor absence" til the end of May. It has been a total farce, especially considering the people who are meant to deal with me in between (ie. GP service and out of hours GP service) automatically assume I have cauda equina and send me to A&E every time I ask for help. Accident and Emergency can't help for pain, and rightly tell me it's the pain clinic's job, but won't let me go without a cauda equina test that is, well, degrading in the extreme lol.

I am not convinced I have Fibro (yet) as my pain is still fairly localised and to get a diagnosis here in the UK I would have to have at least 11 of the pressure points. There are some similarities that make me consider it, such as the sensitivity to touch in my lower back, but that doesn't tie in with the right places. Not yet anyway. I do think there is a neurological issue going on and I still am sure the lower back pain itself is from a problem there, even if it doesn't show up. That pain is different to my leg and feet nerve symptoms, it is hot and angry and grinding. When I flare up that specific part of my lower back is red hot to the touch and even someone gently stroking it is agony. With the buzzing, burning numbness in my thighs, it feels "wrong" having someone touch it - I can feel the pressure but not the sensitive nature of skin touch there. So that's not really a pressure point either. I do have IBS and migraine too though, but never really linked them to the pain other than in the cases where it was clear that medication had irritated either. Ginnie on the spinal problems board suggested RSD/CRPS but that doesn't quite fit either.

As for the SCS, that's where my thinking is headed too. Over here you have to fit certain guidelines though AND find a clinical trial. I know my pain clinic is part of the clinical trial but I just feel like I can't rely on them to do anything other than fob me off til the next appointment, so I daren't put any hope into that appointment. I do need to work out what a neurosurgeon can or can't offer me, as I have that appointment at the end of this month. At the time of referral though we all thought that the MRI would show something up that a neurosurgeon could operate on, and at the moment that's looking unlikely. I am trying not to get too depressed about that but it's hard when you've been waiting so long for even basic help. Each avenue is taking months or years, there's no "We'll do this test next month", it's all waiting lists and putting up with disabling unmanaged pain in between at a constant 8 or 9 level, with shooting pains of 9-10. I think they think because I've had to cope for so long, it can't be that bad, but the truth is it is that bad and it has been that long purely down to bureacratic mistakes on the doctors' parts, whether it's poor communication or forgetting to order an MRI. And each time something doesn't work, or tests don't show what it is, I have to wait another few months for a new referral or next test - why not get it all done at once lol.

My biggest worry, and it seems redundant and pointless now it's been so long and is so likely now, is that the nerve damage will be permanent. Everything I have been told from day one is that the sooner things are identified and treated, the less likely this will be. Well four years and counting, still waiting for a diagnosis, never mind the solution! It seems criminal and not just because it's me, I'd feel the same for anyone.

I am not sure if I've answered everything there, but my RUQ pain has got so bad I'm going to have to lie flat for a bit. I hope I'm not heading into hospital again with it, it's been 3 years since that happened last and I really don't need it!

Thanks

Kathy
xxx