Thought I'd update you all on what happened after my last post.
Well, I rang the GP practice to get admitted to hospital and a GP rang me back. I'm not entirely sure how to judge what he said, because I know there are some that would agree with him, but it came across as really unfair and unkind. He said I should just learn to put up with the pain and stop putting on them. He said he wouldn't come out for a home visit (which I didn't ask for) but would see me at the practice if I could get up there, however he would not be prescribing anything (again I hadn't asked for that, I needed admitting). I was really upset after coming off the phone but felt that if I didn't get myself up there I wouldn't get any help. So I tried to get dressed, and that's when I had a bad fall. My legs couldn't hold me and I hurt my knee and back falling, and couldn't get back up. Baz was extremely distressed by this and rang 999.
An ambulance came, by this point I couldn't feel my feet at all and my back was spasming so much I was struggling to breathe. The ambulance team were amazing and gave me IV morphine and a "gas and air" thing to breathe through for the pain. Then, when I was "stoned enough", they got me into the ambulance and to the hospital casualty department. I saw a doctor there who had to do the cauda equina test as protocol, and she said that because I already had an MRI done she was admitting me to control the pain and probably to have surgery the next day. I was taken up to an Assessment Suite ward.
On the ward I saw their consultant who sent for a neurosurgeon. They kept me on IV morphine (directly in rather than a drip) and I was still in pain. the neurosurgeon reviewed my MRI and thought it would be best NOT to operate at the moment as my symptoms didn't align with it (which I knew already and agreed with). The plan at that point was to get my pain consultant (you know, the one that keeps ditching me) out the next morning. They said their number one priority was to make sure I didn't go home unmanaged, I was so relieved by this promise that I was quite tearful. I had been due to change my buprenorphine patch that night but the ward didn't have any, and I said I wanted it changing to a new med, so they left that for the pain team to work out.
Morning came and went and the nurse told me that my pain consultant had been rude to her on the phone and refused to come down. He said to "stick another patch on her and send her home to see me at her normal appointment". I was heartbroken at this point. By this point I had not had my usual buprenorphine patch and I had a killer migraine - possibly from withdrawing (bit early but could've been) or the morphine. Either way I was in a lot of pain from my back and also couldn't open my eyes or stand up because the migraine was so bad I thought something was badly wrong.
I said the pain consultant's answer wasn't good enough and reminded them that they had promised not to send me home unmanaged. So they got another of their consultants out, and this was where things got a lot better. He was the assessment suite consultant, but also works with patients with fibromyalgia. He said my problems seem a lot like fibro, but not widespread enough, although that doesn't mean I don't (or do) have it. By this point (late afternoon) I had had to admit to myself that the buprenorphine must've been working a bit for me as my back was much worse without it. He said I am getting tolerant, but that doesn't mean it's not working at all. So he suggested that for now, he gives me some temgesic to "top up" when I have a flare like this, which would give me more control and a better idea of if it's working at all. He also upped my pregabalin to 450mg a day (150mg in morning, 300mg at night). He also wanted me to try Cymbalta for the neuropathic pain and for the (understandable) depression the pain is causing. We had a good long chat about how exercise and mood effect my pain and he came up with some great ideas for me to try, including ignoring the pain clinic's ban on exercise and/or physio. He thinks I will turn out to have one of the chronic pain disorders like Fibro as it is clear from the tests they ran that the pain is not being entirely caused by my back problems which are minor in comparison.
So I came home last night with the pain clinic having begrudgingly said that they will now see me in April, although they refused to give a definite date, and I will believe it when I see it - they'll probably send me an appointment and then cancel it again lol.
I decided to only start the Cymbalta last night, rather than the temgesic and pregabalin rises as well, so I could judge any side effects or changes in pain specifically to each. I woke up this morning (after my first full night's sleep in over 6 months) and could FEEL MY THIGHS!!
I know it's early days but I do feel that doctor listened and understood and that's half the issue. The other half is being able to have control back and he totally understood my fears of being seen as a drug seeker (and agreed I need a change of GPs, but I have to do that carefully). If I can help myself during the flares, the less likely it is I will have to seek help elsewhere and get seen as a drug seeker.
All the doctors I saw in hospital think the spinal chord stimulator is a high probability in suitability for me now, especially when they considered that I don't want to spend my life on high level drugs. All the doctors said it's likely that whatever is causing the pain, the nerve damage to my thighs is probably permanent. All of them understood and all were very nice. And they've ALL seen how unhelpful the pain service have been to me and to them. So I do think as much as I am still at home and still wobbly and sore, I am in a much better position now than I was at the beginning of the weekend.
I'm really sorry for my down posts, and embarrassed about my typos on valium! I know I'll get low again, but I also know that there ARE people who care out there if I can access them. I am going to send the nurses and that doctor a card to say thank you. xxx