Thanks Ginnie, you've been so kind. I don't seem to fit in with RSD as someone on another board suggested it a while ago and I read into it - I don't have any skin, hair or sweat changes in the areas that are effected. I do get swelling in my right knee but that's not an entire limb and I can't think of anything that set this off, like an injury, like they say in the info I have read.

I had a good mope and cry last night, how daft is it that I'm disappointed about a relatively normal MRI! I honestly don't know what the possibilities are any more, I presumed that because the symptoms were so much worse than at my last herniation that this MRI would show maybe the reherniation at L5/1 AND a problem at L2/L3 or throughout the lumbar spine that would correlate with the leg symptoms. I am completely dejected. I know I still need the cervical MRI but that wouldn't explain the leg symptoms even if something showed up that explained the more minor hand issues.

Does anyone know any non-mechanical causes of this level of radiculopathy? I don't feel that I have meralgia parasthetica as although the thigh burning ties in, the positional aspects that relieve/exacerbate things don't and I am not known for wearing tight clothing (not with my figure LOL). Also that wouldn't explain the back pain higher up from the L5/S1 area. I think it would be too much of a coincidence to have an entrapment further down the nerve too, although not impossible I know. Just seems that all my problems feel connected, the thigh burning started at the same time as my disc herniation. If only that level served the outer thigh it would stop me feeling like I'm going crackers!!

My old pain consultant believed I have a "floating coccyx" from a fall off a stool in 2008/2009 (can't remember when), as I can feel a "clunk" when I sit down and had severe coccyx pain after the fall. I don't know if that makes anything more likely, although that's likely when the herniation got bad.

The only other thing I can think of that is mechanical rather than systemic is spinal instability, as that would tie in with the clicks I get where my pain is, but if I had that it would have to be at L5/S1 for a starter (so not where the higher pain or clicks are) and I would think that if it was a problem higher up, it would show up on an MRI? In fact if it was instability at all it says online that an MRI would diagnose it. So that's another one down.

Given that arthritis would've shown on the MRI, and have negative RF in my bloodtests, and no other bloodwork that suggests autoimmune, I can't think of a single thing else I could explain this by. I just have a horrible feeling they're going to think there's nothing wrong or that they will make me wait another year for a referral to someone else - by which point I won't be around as I can't do this. If I find out that the nerve pain is permanent damage from having waited so long, I am likely to go mad.

After all this, I really can't bear the thought of me having no options left. I've already had gabapentin and lyrica and they didn't work. That's all they're likely to offer me if they can't find anything. I was really hoping for something to show up that they could fix as I have no other options left other than putting up with this for good.

Don't go crackers yet OK? Have some hope that this can get better. Ask your doctor to put you on B12 shots. I have PN, and this helped me. I do have a kind of nerve damage, and it got a bit better over the course of this last year. I am wracking my brain trying to figure out what has happened to you. Something set the nerve off, there has to be something to calm it.
Have you tried lidoderm patches? It is a numbing agent, most insurance does cover. As far as the cause, ask MrsD. I don't know if she saw your post, but you can PM her. She is brillant in figuring this out. Re-post also on our home page mabe, to draw more response. Have you used the search up at the top in the blue bar? type in nerve damage and see what pops up. someone here on this site, should be able to relate to what you are going through. Don't let the docs. push you aside. this isn't in your head, so don't let them tell you it is. Fight, it is your life and quality of life you are after. Make sure those doctors know that. I do care, and just wish I new more about these kinds if neuro problems. I am in your corner...ginnie

Hi Ginnie

thanks ever so much again for your help. I've written out a long reply in the chronic pain forum thread I started the other day. I can't type any more now, pain and meds kicking in. My heads fuzzy or I could post the link in here. Bad bad day yesterray. Maybe better days coming from what came of it. xxxxxx

my pain clinic appointment has been cancelled again, theyve put it to the end of july. when baz gets home i'm going to get the gp to admit me to hospital, it's all i can think off. exuse the typing/typos i have had diazepam and it hits me like a ton of bricks. only got enough for today though.

Hi everyone

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

Today was my neurosurgery appointment, and the consultant was really, REALLY lovely. He showed me my MRI, and although the report said I had a bulge in the disc I had the microdiscectomy on, he showed me that it's really tiny and is just a little bit of scar tissue. He said it's enough to cause my sciatica (which I knew) but there's nothing there that needs intervention from a neurosurgery perspective. I asked him what he felt was causing my burning pain and leg weakness and he showed me that the corresponding disc for that area (L2/L3) is absolutely great with no impingement on the nerves. He then asked me if I'd read about CRPS and told me that's what his diagnosis is. I know that's not a great thing to have, but oh my Lord I'm so relieved to know, to just know. All this time with a diagnosis of "lower back pain and radiculopathy" and I don't have radiculopathy at all. I want to dance and tell the GP to shove that in his pipe and smoke it, as my Grandad would've said lol. Not really, I want a good relationship with the GP but at least I have something I can say, "This is what it is, this is me". I'm sure I'll get low about it soon but for now, I'm just grateful to the consultant. Also, the best bit is that he's writing to the pain clinic to ask them to consider me for the SCS. A very very good result today. xxx

Kathy, I wonder how you are doing today? I have had many of your same symptoms and have facet joint disease with L5 radiculopathy causing my thigh to be numb and painful feet, making it very difficult to walk at times. I would love to hear from you!

Kathy it is a long shot because it is a very rare condition associated, in the majority of cases, with long term use of steroids, in fewer cases with obesity, but sometimes autoimmune. The physical cause is an accumulation of fat around the spinal nerve, causing compression and consequent 'neurological deficit' - neuropathic pain and mobility problems. I have it and the clinical name is Spinal Epidural Lipomatosis; if you search the web for that term you will find corroboration of this post and pictures of how it appears on an MRI. I hope this doesn't raise false hopes, but after all you are going through, all possibilities, however rare, need to be considered.

Wishing you all the best.