Yes it's me. For those are wondering who is. It's a looooooong woeful tale of misery and pain brought about by degenerating L5/S1 vertebral disc.
So, medically this is where I am:
Had second spinal pathway (assessment point) appt with 'clinical senior physiotherapist' who works with the neurosurgeons. He agreed weakness of foot flexor on left leg, and some muscle weakness/atrophy in the calf, along with numbness and not being able to get anywhere near tippy toes on that foot, agreed that indeed things have probably got worse and that indications are the nerve is trapped/damaged (either or both) (yes, probably happened when I was told to do 'cobra' with force x 10, 4 times a day despite not being able to stand straight due to back not liking it - literally as soon as I was forced 'upright' the nerve pain shifted from right leg to left leg and BADLY). He also said he suspects I have an unstable spine, and that if disctectomy was not required, spinal fusion is very likely the best option now (different from Aug 2012)
MRI at the end of December. Results show 'indications of disc bulge that warrants discussion with neurosurgeon' and a letter was sent to say that this, along with evidence of planter flexor weakness, and some other jargon, the neurosurgeon has 'kindly' agreed to see me. YEY! I got this letter mid January, fabulous, not long now!
12-15wks wait. 4 months. To just have a chat with the guy. But, hey ho, at least I am on the waiting list now. And at least I am having a good run, with good positive thinking to push the pain to the back of my mind and I was walking straight so it seemed I was doing well, last 'episode' was over christmas, but recovered well. Yes, the odd few days where it 'goes' but I am learning to manage those episodes with carefully planned rest/medication/exercise contigency. Except, NO.
About two weeks ago it 'went' again. Really. Fucking. Badly. I should have gone to hospital due to level of pain, but in fact, I was at home on my own with two children one of which was poorly (another story). Goodness knows how I managed it. But I did. It took until sunday this week (10 days?) to stop the muscle spasms, which were going higher and higher. I was physically unable to stand straight, not just due to pain, but the back refused to go that way. Like before. So, I did the cobra exercises. Just 4 of them.
And now, the worst possible pain imaginable down through from my back (but not there particularly) down deep in my left buttock, hip, thigh, calf, right into my foot. It feels like something is going to snap. The pain when I take a step is agony, and although I can straighten, I can do that AND walk. My leg has to be bent outwards a bit when I walk and I can't put pressure on it.
And my back keeps 'buckling'. If I knock into something it gives way. If I twist wrong it gives way. I stood up from the chair yesterday without thinking, so did it normally, how I used to, not slowly, and as soon as I got to the almost standing position - BAMM! pain and collasped back into the chair as my back gave out.
I CANNOT live like this any more. The pain is unbearable and my meds are not touching it. It is now keeping me awake at night, I can't find any position with no pain. I have tried so hard. SO FUCKING HARD! to get on with life. How can I make it through like this until April or May? And then god knows how long before any surgery? My life is fucked. It is taking it's toll on every single aspect of my life - my relationship is at rock bottom, although luckily we love each other enough to recognise we need to make some changes, and that we want to and are talking about things now my work, well, I am hardly there, next to useless when I am. I will very likely lose my job at some point this year, certainly decrease my salary as I go onto half pay. Let's not talk about my children, they are rocks, but, even DD is feeling it now.
So. Apologies for the extraordinarily long rant to get to the point. But, where next medically? My GP has referred me to pain clinic (there is a waiting list of a month or so) I have no idea why they didn't do this before, I have asked, but heyho. And I have been given pregabalin. I have been given this before, but didnt take it as I am scared. I have tried amytriptiline and gabapentin and both turned me into a zombie-like person, I could not function. Although amytriptiline worked well in terms of nerve pain relief. GP gave me a lower dose and I took the first dose this evening. What else can I do?
If I go to the hospital, will they be able to give me steroid injection into my spine to numb it? God I so want to do that. Go to hospital, have some fucking powerful drugs and be left to sleep for a few days with no pain. Then I can get up and get on with it again.
How the Heck do I get through the next few months when I can barely get myself up and dressed in the morning, let alone have any life? Any techniques for coping (don't say counselling...).
The prospect of 8mths plus before surgery and then 3 months recovery. I am not going to be anywhere near normality for another YEAR! presuming of course surgery is suitable.
Sorry. I am sure you are not going to get this far. But if you do, fucking well done you!
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General health
Lumbar disc problems, constant pain. Where next?
PavlovtheCat · 06/02/2013 21:23
What denial said 
I had acupuncture with my physio, I don't know if it made any difference, hard to tell because I was just getting used to the tramadol then but I can tick it off my 'things I've tried list'. Stopped with the physio for now though as he felt there wasn't anything more he could do until my pain levels were better controlled, so here I am, lying on my electric blanket, waiting for the appointment.
eleanor yes, it did a number on me and I gave it a good 5wks to settle down on it! Well, the pregabalin is not too bad, but I am taking slow release tramadol with it, and that makes me wired at night, so it seems the two are counting each other out. I feel droopy eyed and a little 'drugged' on it, but, I am on the tiniest amount possible! 25mg at night only. Because I also struggled with horrendous side effects with gabapentin on a low dose, and thus the doc thinks I am overly sensitive so is starting me on 25mg. My other GP gave me 50mg twice a day and I was not happy about taking it. This GP knows I am scared of the side effects! It means though that I doubt I will see any huge changes in pain levels any time soon as I know it's going to need titrating upwards.
My pain levels have plateaued out for the most part. My back is stiff and sore. My leg pain varies between reasonable (5/10) and severe (7-8/10). I am finding lying down is actually the worst position to be in, unless curled up in a ball, which is not usual for me. If I lay down, basically my inner thigh right by my groin goes numb and so does most of my foot, not the tingling numb I have had pretty much constantly, but properly numb like when you lay on your arm so it goes dead. Same with standing straight upright, I am slightly stooped as, as soon as I straighten the same thing happens, as well as increased pain in my buttock, hip and thigh, numbness increases majorly. It is like I can actually feel the nerve being trapped. Funnily the pain sort of 'snaps' or 'goes' like my back does when I move without thinking. It catches my breath and makes me gasp out loud.
So I called neurosurgery today and the person I need to speak to is the neurosurgeon's secretary, and guess what? she is on annual leave until next week. The person who was going to try and get it expedited would have, apparantly sent the email to her directly and no-one has access to her emails in her absence. There is nothing on my notes to suggest that I have been expedited (I am guessing that is the word for being bumped up the list) or that an email has been received by any other person, and so please can I can I call back on Monday afternoon once she has had a chance to check her emails? (in a professional and polite way - Do One Love).
I also called the central unit dealing with my pain clinic referral as someone was meant to call me back yesterday and they didn't. And they shut for training today at 11am and so can I please call back tomorrow or leave a number to be contacted on when they are available to return my call?
Not much luck on the medical contacts front. Oh well, tomorrow. it's not like I am working or anything
I have upped my pain meds, well I say that, the tramadol. I have been trying to reduce it as, well I don't like it, and for no real reason that I am dependent on it and hate being dependent on any drugs where I can't just stop them. So I had reduced down to just 50mg (splitting the capsule. Bad Me) and taking codeine sparingly. but, I just cannot do it like that any more. The tramadol is not really helping the pain very much, but it's making me care significantly less and improves my mood . So back to 200mg (100 x 2 daily) plus 50mg as required on top up to 400mg (not done that yet though, as that will properly wire me).
I am just going to have to succumb to the meds again.
eleanor yes, indeed, that is where I am flummoxed. I don't really know where to go. 5/10 is ok really! I can manage on that, not great that I need to, but yes, numbness continues, continues to bother me, and nothing being done. I think, the best option is, wait for pain to increase to above 8 again, then A&E. I can't see any other way now.
denial I know, I was warned! I was just being hopeful, and actually hearing it threw me, especially being told it would be even longer than I thought for consultant appt.
fish sorry you have sacroilliac pain issues, that is not a great pain either is it? 
Private is, I suspect going to have to be an option for consultation appt. DH and I are going to have to look at finances, and I am going to have to convince DD that baked beans are nice . I mean, if it has to be done, and there is no choice, we will do it.
How bloody crap that people even have to pay privately, to see the same bloody person that they would see in 4 months on the NHS.
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