Dr Google Says I am Probably Dead Already.

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How many people with chronic back pain also have generalised  systemic pain? I do. How many of you have diagnosis for those aches and pains that has a different cause than injury or Degenerative Disc Disease? I don’t yet.

I have many aches and pains that appear to come hand in hand with chronic pain. I’ve diagnosed myself with so many conditions I Dr Google even suggests I should probably be dead by now. I don’t want to be ‘sick’. That’s not the reason for my searching.  I want a reason for being in all-over pain. I don’t want to think it’s just back pain causing it all. Because, if that’s true, it really does fucking suck.It goes without saying that my back pain is ever present. To greater and lesser degrees of intensity but a constant nevertheless.  Sometimes though, I also have whole body pain. When this happens my hands hurt; my feet hurt; my blood hurts; I feel nauseous, often I vomit. I am exhausted. Like the flu but without getting the flu. I have flare-ups of skin problems: little blister-like spots on my face; bigger ones on my ears, and on my feet. Often, a ‘flare-up’ of these symptoms would indicate a massive flare-up of back pain. In fact, in the first couple of years I could predict a flare-up of back pain by my blood hurting in my hands, feeling sick and throwing up. Now often I get these symptoms without an increase in back pain, possibly as back pain is already quite high.

Needless to say I have spent a long time trying to figure out what this might mean and how it links with my lower back problems. I have some theories, of course I do! So does my GP, and others around me.

  1. It’s intervertebral disc leakage from a tear in the disc; leaking into my bloodstream and nerves, my body reacting to the toxic gunk that comes out. The problem with this theory is that since my discectomy in June 2013, as far as I know any tears are no longer there. I personally loved this theory of mine (no evidence to back it up!). healthcare professionals didn’t have much to say about it.
  2. These flare-ups are bugs: a common cold, a virus, etc. This is my GP’s favourite theory. It goes like this:  ‘Normal’ people get colds. But Degenerative Disc Disease means I have chronic inflammation in my lumbar spine, so for example it’s at ’50’ where people without chronic inflammation have markers at 0. When people/I get a common cold, normal inflammation rises to 50, but my spinal inflammation rises to 100. Thus increasing the already present inflammation and causing even more pain. And all the other symptoms are what other people with bugs would get, but i don’t feel it as quickly/quite the same until I am proper sick, due to it all being masked by pain medication and anti inflammatory medication. It also means that I don’t respond as ‘normal’ people do when I am sick, i.e. resting, more fluids, etc, because I don’t realise I am unwell.  Then I get rundown and this causes skin infections etc. Possible. It’s probably the most plausible. But, I get these ‘bugs’ an awful lot.
  3. I have Ankylosing Spondylitis or some other Inflammatory Arthritis. I return to this one occasionally as I keep going ‘oh! I have that!’ to various symptoms etc. I’ve not specifically mentioned it to my GP but have asked if I could have inflammatory issues of some kind and he pretty much laughed. No. He doesn’t think I have any of the symptoms, but did a CRP test to shut me up. And it was ‘normal’. Although, I was not mid flare when blood was taken and he didn’t do an ESR test. Strangely though, this week, I saw a locum GP and the first thing she said was ‘have you been tested for Ankylosing Spondylitis? Do you have a family history of this?’. Then she ruled it out, saying that the surgeons would have looked for and ruled it out before surgery. Not sure if she means they would specifically rule it out or if it would have been visible on MRI. Either way,  this theory is certainly not taken seriously by my GP. Research suggests that trauma or other environmental factors can ‘trigger’ Inflammatory arthritis in those who may be pre-disposed to it, so it’s still a reserve theory.
  4. I have something wrong that is nothing to do with my back pain (like a thyroid problem), and it’s a red herring, because it’s easier, and cheaper to blame one thing and treat that, than try to find another piece of the puzzle among thousands of possible pieces.
  5. It’s a reaction to my medication. This is the overall healthcare professional’s favourite! Despite having no correlation to the dose or type of medication being changed, and flare-ups occurring when not on medication. It is, in my honest opinion, Bullshit. And as above, easy and cheap.
  6. There is nothing actually wrong with me. It’s all in my head, and I am what is medically termed a Hypochondriac. I would like to think not, as I ignore most things until I have to mention them to the GP when too much to bear. But, this does mean I go with lists as I wait, wait, wait, and then take all my (individually minor to him) problems there at once. So, I may either be one, or the GP thinks I am one.

If you have any theories to add, or any ideas on the theories I have aired about what might cause my chronic pain other than back pain, drop me a line, or link me to more blogs/websites. I’ll try to revisit these theories from time to time.

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Doing Nothing is a Skill

Doing nothing is a skill; one that I am really not so good at. I am not a very good patient while recovering from my microdiscectomy. I am not great at the art of staying in bed. I have done too much really and today I am suffering for it. To be honest I have had increased pain for a few days, having spent a lot of time outdoors on Sunday and getting up and down from the ground; I felt fine at the time, but not now! Since then, pain has crept back in and I am now left with nagging aching nerve pain down both legs but in particular my left leg. I also have some localised pain that reminds of how it felt as I came out of surgery, really internal. It also feels like it might ‘go’ again at any time and I have to remind myself that this part of my back pain, the misaligned vertebrae, that is not fixed.

I also need to remind myself that a microdiscectomy sounds like a simple surgical procedure but they did cut right down into my back to my spine, they did cut muscles, remove bone and push ligaments and my sciatic nerve away (maybe others too), and cut away the disc, leaving it ‘open’; it’s going to take time to heal! Yes! I was told this, I was told 4-6 weeks recovery, but, I felt so good in the first 10 days; I felt like the 4-6 weeks were cautionary and that I was recovering significantly faster than that! I even reduced my codeine as I didn’t need so much of it and for some of the day was managing fine with just paracetemol. I have read on some back pain specialist forums that increase in nerve pain around 2 weeks after microdiscectomy is normal as blood flows back to the nerve which has been restricted for a while; it’s also been irritated more by the surgeon, and allow for as long to recover as it was compressed for. So, I am not worried that the pain means something more sinister. I just feel rather daft for running before I could walk so to speak. I was thinking I would be ready to go for a swim on friday, I have been walking a lot and have started bending a little – I mean come on, R is doing a sterling job at looking after me, the children and trying to keep on top of our home, but he is no miracle worker and things on the floor are dangerous, and bloody annoying! – but, feel like I have taken a big step backwards so am slowing right back down again.

My advice for anyone having a microdiscectomy is – you WILL feel fabulous for the first week, you will feel like it has gone brilliantly and that means you are recovering quicker than everyone thought you would. Please slow it down, and remind yourself that your pain is not a guide right now, that reduced pain will make you think you can and therefore should be doing more. You used to be guided by your pain levels but now you have to tell yourself not to do something like picking washing up off the floor, pulling chairs out from the table. Please take it really, really slowly even if you feel ok, as a miscrodiscectomy is NOT a simple non-evasive procedure for you. It’s simple for the surgeon performing it, but it’s still major surgery for your back. You will just have to learn to read more books, watch more films, catch up on some fabulous blogs and Do Nothing!

It’s Been a While: I’ve Had a Micro-Discectomy and Other Things.

I have been silent. I have had writers’ block. I have had reduced pain. I buried my head in the sand and stopped wanting to talk about my bloody back pain; talk about a pain in the back. I have plodded, and managed with lower level pain. Not disappeared pain, but bearable ‘let’s pretend it’s ok’ pain. Stoic. Just waiting for a date for my L5/S1 Lumbar micro-discectomy.

I stopped taking Tramadol about a month ago. How about that? It’s been worrying me, using this drug, and I feel fine without it. Great in fact. It’s been R’s 40th birthday; we went out for wine tasting and I wore heels; we had a party/gathering and I wore Fly London Wedges. I looked fantastic that night with my new dress, new haircut (even if I say so myself, as did others), and red glowing sunburn; I drank alcohol as I had no opiates or nerve blockers in my system, and it was great as alcohol dulls pain; I got drunk; we went out for post partying breakfast and I struggled to bend down to pick something up from the floor. And that was the end of the ‘good phase’. I could not get out of the car coming back from breakfast and we holidayed in a yurt for the following five days, up a steep hill, with a LOT of painkillers and the lovely diazepam to keep me going. It was actually fab, but despite backpain (you got to just get on with these things right?).

On Tuesday, having returned from holiday to just one day’s work before going off sick again, the neurosurgeon’s secretary called me; “How would you like to have your surgery tomorrow morning?’

So, this is what happened

Tuesday 18th June in the morning, I was called by the secretary, a simple yes or no, she will call me back with details. In the afternoon I got the details of where I need to be and what time. A mad rush followed, sorting out new jimjams (didn’t bother), cleaning and drying my finest pants (I had to take em off, waste of effort) and supervising R cleaning the bedroom so it was lovely when I came home. We organised childcare etc and I spent a little bit of time trying to calm down a very worried little Summer Girl, ‘what if you sleep for too long mama? I don’t want you to go!’

On Wednesday 19th June at 6:20am I said goodbye to my tearful Summer Girl, my slightly nervous R, and a Winter Boy who wanted to wave at the mini cab taking me to the hospital – there was no point disturbing the children’s routine, and it was last minute so who could have them at that time in the morning? It wasn’t an emergency so R did school run as normal – by 6:45am I was stood in a queue of dozens of other people waiting for their ops. ‘Fucking Hell’ I thought, ‘I won’t be seen first that’s for sure.’

Wrong! At 7am I was booked in, 7:15am wristbands put on me, a million questions asked by a student nurse (including, ‘are you pregnant?’ about 10 times). At 7:25am I was seen by the Registrar who told me I would be having a bilateral micro-discectomy and I signed the consent forms. I changed into the very fetching gown and stockings provided, keeping my lovely clean M&S knickers on. At 7:45am I was seen by the anaesthetist who kindly let me know he will ensure I will be provided for drug wise when I wake up. Not reassuring, as that suggests I will be in a lot of pain! I missed seeing the Consultant as I was busy contemplating whether or not to keep my pants on as I got changed when he looked for me.

At 8:43am and having been told my neurosurgeon prefers his patients with their knickers off, I was answering the following important question in the anaesthetist’s room: What Makes a Perfect Manhattan?

Next thing I know, it was 12:30pm and I was fucking freezing lying on my side in the recovery room. Not for long, as I got warmed up by a lovely blanket thing that blew air all around me. (I need one for home, but apparently you can’t buy them).

AND NO PAIN IN MY LEGS!!!

Thursday at 3:30pm – I left the hospital, having been discharged as ready and desperate to get home, with one of my best friends in the world having brought me a proper take away coffee for the journey home.

I am still waiting for the pain to return. I have done too much today, and so am actually hurting a little, and in truth I do have a little pain in my legs, but it’s throbbing pain which I think may even be referred pain. There are no stabbing pains as I lay down or sit, so feelings that my leg will snap off, no pins and needles (a little fuzzing). There is some numbness in my toes and that might never go away, but. FUCKING YEY!

The Technical Bits

No fusion! I had a left sided decompression, instead of the anticipated bilateral decompression as the surgeon didn’t want to remove bone from both sides; he said this would leave my already unstable vertebra even more unstable and the risk of fusion would increase significantly. Apparently this means a slightly increased risk of right sided prolapse in the future and need for further surgery, but he felt that was a better risk than doing it now when right sided pain was minimal. I agree. Actually.

The incision is Tiny. Really tiny. Hardly even hurts.

I am moving! I am walking! I can’t sit for too long, or stand for too long. I have a granny seat on the loo. I am trying really hard not to do too much, but I feel…NORMAL! Apart from nagging pain, which is healing pain so it’s good pain.

A success! I do have to wait and see, as it’s still early days, but I am pleased with my microdiscectomy surgery!

The misaligned L5/S1 vertebra is a backwards misalignment and could have been caused by injury to the vertebrae.  The Clever Mumsnetter, DillyTante, uncovered the likely cause of my back trouble, especially as this is NOT degenerative in my case, and all information since continues to point toward this being right.