Hi everyone

I thought I would try out this board in case any of you have any ideas. Rather than type the whole history out again, here is a link to the thread I posted in the spinal problems forum:

http://neurotalk.psychcentral.com/thread183880.html

That goes into depth about my history, including microdiscectomy at L5/S1 in Jan 2011, and bilateral facet joint injections in May 2011 (moderately successful) and November 2012 (very unsuccessful).

My symptoms, in order of how much they effect me are:

Chronic and constant high grade lower back pain, some focused on L5/S1 where my herniation is, but most slightly higher up, around L2/L3. When asked on a diagnostic level whether pain is worse in a morning on getting up or after exertion, the answer is both! It is at it's worst first thing in a morning and after "overdoing" it. However, it is also bad at rest, meaning I get very little sleep (on average 2 hours a night since September).

Radiculopathy 1 - constant high grade burning and loss of touch sensation in outer and front of both thighs, spreading into groin, lower back and top of buttocks. This pain is not covered by the level of my herniation. This and the pain cause me to fall a lot, I get weak legs a lot and am now walking with a rollator or elbow crutches. Because the numbness and tingling spread to my saddle area, I don't have much sexual sensation at the "front" (sorry, trying not to be graphic) and also have mild incontinence depending on levels of pain/numbness.

Painful and abnormally loud/strong clicking/crunching in a specific area in my back, which feels to be around the L2/L3 area. This happens mostly on sitting up from lying down, or on standing from sitting, both of which are always very painful for me anyway. I know clicking is fairly normal but this is to an extent where I can feel it in my teeth (!) and seems to freak out my family with how loud it is!

Radiculopathy 2 - Sciatica down right leg, the cause of that's covered (herniation). It's fairly high level but I'm used to it. It doesn't bother me nearly as much as the burning.

Problems with hot and cold temperatures when it comes to my hands, feet and pain levels. My feet and hands go "see through" and ache badly, then sometimes flush. The radiculopathy means my feet "burn" in warm water. My sister has Raynaud's and this might be a hint towards the cause, although I feel it's related to the other issues more.

Intermittent clunking movement in coccyx - upwards on sitting, downwards on getting up. Sometimes painful, sometimes just a bit touchy. It feels like the motion of clicking in a seatbelt.

Intermittent numbness in outside edge of hands (little finger side). Tested negative for carpal tunnel.

My back pain and nerve symptoms seem to be spreading upwards since my second set of facet joint injections (which were unsuccessful to the extreme and made my pain levels far worse). I get shooting pains in the back of my ribs now too.

I am on buprenorphine patches (35mcg a day over 3.5 days), Pregabalin (300mg a day) and nefopam (1 tablet 3 x a day). I am tolerant to the patches and have been waiting to see the pain clinic as an urgent case since last September because of my high unmanaged pain levels (bearing in mind I saw them in April 2012 and therefore am not waiting for a referral, just an appointment). The pain clinic have not been helpful at all and keep cancelling and rearranging appointments for further and further away. They also forgot to order my MRI last April and I only got it THIS February, and even then it wasn't the full spine one I was meant to have, only a lumbar one. My GP point blank refuses to change my meds without me seeing the pain clinic first, and has stopped my breakthrough pain meds (Oramorph) because he doesn't want me on two opiates. Therefore I have been "unmanaged" pain wise since last September.

My pain levels are currently around 7-8 as general everyday pain, with flares of 9s and even one or two 10s. I have had to go to Casualty on several occasions because of heightened levels of pain and therefore incontinence and saddle anaesthesia - obviously just for those embarrassing cauda equina tests which are always negative. I think they fancy me.

Anyway, I had pinned my hopes on the new MRI that was done in Feb. I completely expected it to show more than one herniation and/or other problems as my pain is far worse than when I had the first herniation. I got the results yesterday and other than a bulging disc at L5/S1 and foraminal narrowing at that level on the right side, it has shown NOTHING. The GP says that none of it explains my pain (other than the sciatica) and that my appointment with the neurosurgeon will be a waste of time - he congratulated me on the results as if I would throw my sticks away and profess to be cured! I am still going to the neurosurgeon but I am gutted that it's likely I will have to get another referral to another doctor and wait another year for more tests and no diagnosis in the meantime. I feel like people would be fair in thinking I was a faker based on all this with no proof.

My GP recently gave me blood tests for "the works", when I asked about other causes of chronic pain like RA and Fibro (which I don't think this sounds like). He didn't tell me which he did, he just said he was doing the lot (before anyone says, I know "the works" would include a hell of a lot of tests lol, but he meant the ones he considered appropriate). When he rang with the results he said I am not diabetic (I knew that), and that I can't have any autoimmune diseases as it would show up on the others which were normal. However, he rang back the day after saying one of my levels was abnormal and could I come back for another test. He said as I'd had flu the week after the test, he wanted to recheck it. Smooth muscle antibodies I think it was? I looked it up at the time and it doesn't seem to have anything to do with my problems, as I don't have liver problems. I have yet to have this done as I had flu for a month and have been fairly immobile since.

Possibly unrelated issues: IBS, diagnosis given after two hospital stays for gastritis and RUQ pain (agony). Gall bladder was suspected, but nothing showed up on tests. Still get bouts of RUQ pain very infrequently but now wondering if it's nerve related as the character of pain was similar to the pain in the back of my ribs after the facet joint injections. It burns and is stabbing.

Has anyone else had this sort of experience? Has anyone had an MRI not show a mechanical back problem up? Or does this ring a bell for any other conditions?

Does anyone have any ideas for suitable replacement painkillers as I am going to have to come off the Butrans and don't trust the GP to give me the appropriate level to cover my pain (he is really nice, but has a special interest in substance abuse and therefore has accidentally put me in withdrawal twice when I was a new patient). I need to find something that would go up to a similar coverage level as the Butrans or slightly above without the peaks and troughs of normal (non slow release for example) tablets, or with a way around them. My GP is unlikely to prescribe me any breakthrough pain relief so having proper coverage is essential. My pain clinic appointment is not until the end of May thanks to them cancelling it yet again because of doctor absence. They won't offer me any nurse appointments or even support group in the meantime as I asked (and I know they're available to others). My neurosurgeon appointment is on 30th of this month and I am hoping that this flare doesn't get any worse in the meantime, and that he will take over prescribing.

Sorry for the long post!

Many thanks

Kathy
xx

ps. I hope this posts because it's taken me 2 hours to type while laid on the bed waiting for any relief from the painkillers!