One Rusty Old Body In Need of a Tune Up! Trip to the Pain Clinic

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Ehlers Danlos Syndrome, Spinal cord stimulator

Tomorrow I go back to St Thomas’ hospital, London to the Pain clinic and it struck me that this is where my new life as a blogger began.  Three years ago I was first seen in the Pain clinic for the start of physical and psychological interviews to assess my suitability for a spinal cord stimulator trial.  Just over two years ago I became the recipient of an implant.  So much has changed in this time.

The last time that I was seen – approx 20 months ago – I walked into the clinic and was able to report that the scs had made a huge difference to my pain but we made a decision not to try to link it in to my neuropathic bladder damage.  Tomorrow the clinical nurse specialists might be surprised to see me enter in my wheelchair, albeit a smart burgundy number, rather than on my sparkly walking stick. File_000 They might be shocked to learn that my autonomic nervous system has become increasingly worse since the implant onto my spinal cord – merely coincidence, I couldn’t really say – causing me to regularly have severe dizzy spells, faints and difficulty controlling my body temperature.  I did dislocate several joints whilst I was on the residential 2 week pain course so this wouldn’t be new, but the fact that my right shoulder is out of place more than it is in and the faints generally knock a few body parts out of alignment might raise eyebrows.

All in all I think we can safely conclude that the body is behaving more like that of an eighty something, rather than a forty something (no, my own kids….I have not yet hit half a century!).  So it feels like time for a tune up……last week it was the cardiologist – heart still ticking, although the pipework could be in better nick!  Saggy vessels were the delicate descriptors for the network carrying the blood of yours truly.  Yesterday it was the turn of a new consultant – the upper gastro intestinal – to cast an eye upon this beauty.  She deemed a camera necessary to check out the fuel pipes and investigate the pains and possible paralysis of the stomach. Something to look forward to.  Next week there is a trip to the bone man – yes Mr Orthopaedic Shoulder Specialist is going to look at the dodgy joints, check the scan which will show a classic dislocation and hopefully come up with a solution to glue the arm permanently in place and all with minimum pain.  I think there may be a visit to the rheumatologist on the cards sometime soon, but don’t want to be greedy.

Rusty body

So tomorrow I hope that I can have a tune up – maybe the frequency and bandwave of the stimulation increased and widened to cover my right hip and leg too.  At the moment it covers the chronic, constant nerve pain in my back, left leg and foot – the result of nerve root damage in the lumbar spine.  The pain in my hips is different and is caused by a mix of arthritis, recurrent dislocations and stretched ligaments/soft tissue.   But the whole host of chronic pain types are all as a result of my Ehlers Danlos Syndrome, literally a pain in the neck that has gradually overtaken life, but no use whinging as my kids remind me daily!  So when the nurses express surprise to see me so altered,  it won’t be because the scs isn’t working – would I have it done again?  In a heartbeat as it has given me  a way to manage some of the pain.

But I am hoping that with their little box of tricks, that looks very like a mechanics electronics box for tuning a modern car, the nurse might be able to switch on a couple more electrodes, alter the band width, tune in some good music and drown out some of this other bl**dy pain.  They might not be able to get rid of the rust, but will report back when I am wired for sound!

30 thoughts on “One Rusty Old Body In Need of a Tune Up! Trip to the Pain Clinic”

  1. I am sure you have you down times Clare but I am always being amazed how many including you with chronic conditions find that indomitable spirit to look it in the eye… I hope your trip was a fruitful one and they could work some magic with box of tricks… You are one amazing lady 🙂

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  2. I probably shouldn’t chuckle but you do word things very well Claire! Wishing you all the very best for today – hoping you get wired for sound and that the pain can be dialled down a few notches! I think with what you’ve got going on, seeing a rheumatologist could be a good idea (mine has been reasonably helpful), but obviously getting the shoulder looked at and sorted is a priority for next week. Keep us posted – all the best!!  ♥
    Caz x

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  4. Tracy

    Best of luck today Claire, I’ve followed your journey with EDS and your SCS. You are a very strong lady, able to looking on the bright side with all that you are going through.
    Can I ask about EDS, my nephew has been diagnosed with hypermobility syndrome type 2 – He is 4 and has put his hip out already. He is very physical, climbing, running and falling all the time. He seems to have a huge pain threshold – rarely cries despite having obvious injuries. I’m wondering is hypermobility syndrome similar to EDS, or a condition that affects the joints, but not organs? He is seeing a paediatric rheumatologist and a physio (occasionally). Would you suggest anything else?
    Thanks Tracy (navchic)

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  9. A tune up indeed! Wow. This really is quite the journey and to see you smiling in your “burgundy number” is a true and beautiful miracle. Having gratitude for all the good you have while you work through the bad is an inspiration. Clearly, you have loving people around you, from your doctors to your family and even your blogging community! I’m keeping my fingers and toes (and my eyes if I could) crossed for you to wish you a good and thorough tune up that helps you shine ever brighter.

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  13. Oh my goodness, Clare! I hope they are able to help you out and relieve some of the pain and joint issues. EDS sounds like such a difficult condition to deal with, but you do it with humour and style. I really enjoyed reading your recount of the journey so far. By the way, I love the colour of your wheels!

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    1. It can be a challenge – hardest when so few doctors know much about it and it can affect anything that has collagen. For years I didn’t even realise that it wasn’t the norm to dislocate a shoulder in order to get a tight top off!!! Didn’t help myself with rowing and then nursing, but then I didn’t know….hopefully my girl (also diagnosed) can be forewarned. But we’re doing Ok, and if you have to use walking sticks by the time you’re 40 they should be pink & sparkly(my dad’s 40th gift to me)…..and likewise my wheels had to be a natty colour too!!

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  14. I’m in admiration of you, Claire. All the appointments, tests, not to mention the day-to-day challenges must be trying at times, and you must have a huge amount of resilience. I hope the professionals you’re working with are able to find some answers for you.

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    1. That is sweet of you – just got to get on with it and try to see the funny side. It has changed our lives but nothing is ever certain is it? Still others worse off, and if we can learn from me, then maybe my girl who is also diagnosed will avoid some pitfalls (if she will listen of course!!!)

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  15. Yes please do report back. SCS sounds very interesting and makes me marvel at modern medicine/technology. I love your references to music in your post and I also love the cheerful voice I hear when I read your posts.

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