Thank you both so much for the replies.

The IBS diagnosis was given after a couple of bouts of RUQ agony that landed me in hospital for a week or two each time. I had ultrasounds and an endoscopy which showed mild gastritis/redness of the stomach lining but nothing around the gallbladder, which they had initially suspected. I do get a "stressy stomach" sometimes and there are some foods that set it off, but I feel this is pretty normal with most people, it was the pain that was terrifying. As they couldn't find anything, they tested me for coeliac and some food allergies and all were negative. What is interesting is that after the 2nd facet joint injections, my back pain and nerve symptoms spread upwards and included rib pain that was incredibly similar to the RUQ pain I had - I do wonder if it's more a neurological issue related to my back rather than the gastrointestinal issue it was presumed as. That said, the hospitalisations came at a time I was on strong oral painkillers and was the reason behind me going on the patches.

I have tried to get hold of my MRI report but they have told me it is not allowed, it only gets sent to the doctor that requested it, not to patients. At my last hospital (under a different NHS area) I was sent a copy of an old MRI, so I think it's a local "rule" rather than a legal issue. I have asked to be sent a copy by the consultant once he receives it, he might be more forthcoming. Saying that, I won't see that consultant til AFTER the neurosurgery team.

I know what you mean about finding the right doctor, and I do think that half the problem is that these doctors are looking for what they specialise in, rather than the whole picture and history which might be out of their specialty. Once they have ruled out what they know, it's not their problem any more. I often feel like they are just thinking "What do I tell this woman to get this over with til next time?" and that it's more about time management to some of them than "fixing" me. Because of the amount of time between appointments it sometimes feels like I am meeting them for the first time each time I go and that the majority of the time is spent going over old ground again. Does that make sense?

As for the SCS, I have a hunch that is what the doctor was hinting at. When I shared this hunch with the GP he agreed but that's mainly because that's the only op we can think of that the Chronic Pain Service would be talking about under my circumstances and lack of diagnosis. It's a big thing to consider though, especially if there's an option that deals with the cause itself. Of course we won't know if there is without a diagnosis.

Swimming is the only exercise I can think of that is low enough impact for me. A 15 minute walk around the local park has my heel and back in a lot of pain even on sticks. I feel that if I don't find a suitable exercise solution that I *can* actually do without too much repercussions, this problem is going to get worse. That said, I have been this way for months and it's only since the Pregabalin that I started gaining weight, as I try to eat healthily. More so now! Portion control is everything, which is quite hard when you're awake 20 hours of the day and fairly "stoned" on meds that aren't taking the pain away. I used to comfort eat a lot but have knocked that on the head, although some nights I lie awake remembering the days when I could get away with snacking through pain lol. I think overall my calorific needs must be minuscule because of my inability to move around much lol.

I used the Nefopam again last night and the last two times I have used it (not at the full dose I'm allowed either) I have had quite frightening experiences. The night before last I had it in my head that if I shut my eyes I would see something terrifying, and ended up awake most of the night with the room spinning, something that sounds really silly when I'm not "under the influence" but shows the psychological effect on me at the time. I just wasn't mentally capable of telling myself what an idiot I was being. Last night I woke up nearly being sick in my sleep and had moments where even sat up in bed I was falling back asleep and dreaming very vividly within minutes, then waking. This repeated all night with each dreaming period being between 10 and 20 minutes. I have been feeling very nauseous and have had a killer headache much of the day, but that's not surprising when I have lost so much sleep. It's gone now but what a hangover! I won't be touching it again. I said that the night before last though and last night turned to it in the hope the previous night had been a one off, it's so hard to not try anything when you're in that much pain. I just want one night of good sleep, it has been months now. I don't know how much of my exhaustion is that, the medication or whatever's going on with me!

On the plus side I said 6 months ago that I would not be able to go on for another day and I've done 6 more months. There have been milder days and there have been really bad ones but I must be stronger than I thought, even if I feel like wailing "Woe is me" all the time and spend my life apologising for being useless!

Thanks for all the support, it really means a lot xxx

In this country by law, you are allowed to get all your medical records including the actual MRI and the written report. Is this not the case in your country? ginnie

It's a lot more complicated here, you generally have to fill out a lot of forms and pay for the privilege and then it often takes months to get anywhere. You also have to have a good reason to see them, and it is at the doctor's discretion as to whether they will let you see them.

I remember how difficult it was to get my and my son's medical records from his birth after medical negligence, and how many hoops I had to jump through, only to get a copy that had been altered to suit their case after the fact (but that's another story!).

ETA: On a completely unrelated subject, I forgot to mention a strange new "symptom" - very strong clicking in the correlating area of my lumbar spine where the tender skin covers (roughly L2-L3 ish?). This happens every time I sit up from lying and quite often on standing or sitting from standing too. I know everyone's joints click a bit at some point but this is very loud, I can even feel it in my teeth and my husband often tells me it's "not normal" in astonishment. It seems to be originating from the area of flesh covering the parts of my spine that are extremely tender to the touch. A casualty doctor has noticed the tenderness and said it feels like I have more than one bulging disc from the pain I got from him running his finger over it. Does anyone else get this level of clicking and grinding?

I tell you, that would tick me off in the worst way. Whose body is it anyway. yours or your medical staff? Don't like how they work it for you overthere, you should be able to see anything you want. Your body belongs to you. wish things could change....ginnie

Thanks Ginnie - I wish that too. That said, we do get our treatment mostly for free so we are lucky in that way. My husband and I were watching "Monsters Inside Me" the other night and were amazed though how quickly people in the States can access specialists, did they depict it correctly in that you can contact a specialist yourself or do you still need a referral from a general practitionner? I suppose that depends on your insurance though too? Thanks for the virtual hug too lol, needed that

For the most part, you do need a referrence from your PCP to get into see a specialist. The wait time is short where I live. I needed spinal fusion, and was in the OR in one wee time.
Hope things work out for you Kathy. We all look for answers. ginnie

Kathy --how are you doing this week?

Hi - thanks ever so much for asking after me, but I'm not so great today. Yesterday I tried a little trip out - we only live a couple of minutes' walk from the city centre so tried for a pootle down to the town to look for some relief from the heel pain (shoe shopping). Couldn't manage it and came home in agony, had to get the bus home even though we're so near, it was awful. Spent the night feeling like I had been kicked in the privates and back and with both heels in a lot of pain too. Got up this morning to a letter from the pain clinic, they've cancelled my appointment at the end of April and put it even further back to the end of May. Gutted is an understatement. At least I have the neurosurgeon appointment at the end of this month.

I rang the GP for help with the pain and it was like he wasn't hearing me, does that make sense? He kept saying that he can't change my medication until I've SEEN the pain clinic. He then completely changed this by offering me more nefopam. I am disgusted at myself because I said yes because he clearly wasn't going to offer me anything else. I can't believe I said yes to it when it made me feel so scared the last two times. He is giving me some cream for my heels, no idea what as he didn't say. Regardless of all that though he has not addressed the back and groin pain at all, and I can't get out of bed for it today. He wanted me to increase the Pregabalin despite me saying my nerve pain wasn't helped by it and I was gaining weight. I didn't dare tell him I came off it. Why would he be fine increasing the dose of a medication that's not working and yet not helping me find another one that might? It's no wonder people turn to illegal drugs.

He has referred me to occupational therapy as I said I need help at home (adaptations for example) and something to help me get out of the house. I can't cope on the crutches any more, it's not enough. I can't get in the bath, my husband has to help me and I'm not a light person lol. He is also blind so I should be looking after him, not the other way round.

Feeling very despondent, my pain is really bad, the buprenorphine isn't touching it any more and hasn't been for months and neither is the pregabalin on the nerve symptoms. I can't get mobile, because it makes things worse, and when I'm immobile, the pain gets worse. What can I do? I will try anything. I can't just lay here and get fatter and fatter and have them turn and say they left it too long to operate because I'm too heavy or the nerve damage is permanent. I really don't know what to do any more.

I am so sorry that you are having these problems. The med. you ditched, I did also, as it effected my mood and did nothing for my PN.
My son is an OPT. That route is a good way to go, but you need more than that. You need to find a doctor in sink with what you need in medications. It sounds like your needs aren't being addressed adequately, or you are not being listened to.
I know it hurts to move around, but this is the best path to more independant living. If you can get regular physical therapy as well, that may help with your mobility. You will loose weight if you get a bit more active. I sit in the garden on my butt to do the gardening. There really is a benefit to any hobby you engage in. I did loose weight, and found I could walk alot better when I did. I sure wish you all the best Kathy. Your husband is wonderful, and I am glad you have him in your corner. ginnie

Ginnie you're amazing, thanks for the reply. You're right that Baz is a diamond, I couldn't have got through any of this without him.

I had a good night the night before last for pain, the nefopam worked wonders for the first time. I laid in bed with an icepack on my heels and watched a film while I was comfy, sounds like nothing but it made everything better for a couple of hours. Didn't last long but it was still worth it!

Went out yesterday, saw some family I haven't seen in over 10 years - weird but good. After that my sister offered to take me to Ikea for stuff for the house. We spend hours there normally and I was a bit nervous but knew I could use the trolley as a walking aid lol. On the way to get into the car, I slipped on some mud and went flying. Landed on my bum and my wrist, and twisted my ankle. I was covered in mud and my daughter and niece were straight to me to try and help, but were holding back the giggles. My sister saw I had fallen and rushed to help me and did exactly the same thing. That was it, we were hysterically laughing more from the shock than anything, but we looked a right state! Covered in mud and laughing like madwomen. It was strange but apart from my ankle I didn't hurt at that point, so we got cleaned up and went to Ikea. It was at that point the pain hit and I was very sore last night. I thought I had torn my ankle but I can put weight on it so I can't have. Sharp pains up my shin but I think it's just been "shocked". My coccyx is killing, but I am REALLY lucky my back wasn't hurt more.

Today is Mother's Day and my kids have surprised me with gifts and spending the day with me (they're normally out with friends). It has been lovely! I don't need gifts, just them to be happy and safe because that's what matters to me. My back is very sore but they're insisting I rest after the fall. I am going to try for a gentle walk with the dog later. I think that's the key to the exercise, because the dog needs to lose weight too and it doesn't take much to go to the park, let her off for a game of fetch to wear her out and they have benches to break the walk up. Polo (the dog) is also very aware of when I'm sore as she's a little nurturer and worrier! She never pulls when I'm unsteady or slow. It's not far from home either (and daft as it sounds it's also handy that the hospital is on the other side, as we've had to go there from the park before haha!). I will make sure someone's with me to be safe though. It does hurt to move around but when it makes someone I care for happy, it's worth it. The park walk is a good one because everyone loves going, Polo goes crackers for a game of fetch and that makes everyone happy. She's known for being a bit of a stresshead, so when she's genuinely joyful and giddy, it is lovely to watch her relax and have fun - she's a rescue dog so she deserves all the fun we can give her.

I'm gabbling now, probably the nefopam, possibly the chocolate too lol. Thanks for the reply, I hope you're ok? Happy Mother's Day to the mummies out there too.