Author Topic: Degenerative Disc Disease and the Pain Clinic - Advice, Please!  (Read 10123 times)

devine63

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Hopefully your pain guy will be helpful about it then - as using a powered mobility aid is one way to do more without wearing out your own joints!
regards, Deb

NeuralgicNeurotic

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Ditto.

I used crutches for years because the NHS said I didn't need a  wheelchair.   I now have completely knackered shoulder and wrist joints.  So please don't let that happen to you.

Since  I bought myself a scooter, my life has been so much better.

I prefer a scooter as I feel safer going up and down kerbs but others prefer an electric wheelchair.

This is pretty much the situation I've experienced. Crutches are fine in the short term, but not only did I develop problems with my wrists and shoulders after using them for a couple of years, but a pre-existing problem with my neck was badly aggravated. It seems contradictory to think that doing less in one respect enables you to do more, but it is actually the case! It took me a long time to decide to buy a scooter for myself, but now, I wouldn't be without it. Prolonged sitting causes my pain levels to accelerate temporarily, so I need to carefully ration the time I spend using the scooter, but it's still very, very useful.

I hope the pain clinic will be helpful for you, Badger, and I wish you all the very best. Please keep us posted about how you're getting on, and remember that we're here to give you whatever help and support we can.

 >hugs<

badger

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Thanks, again, everyone for all the advice and support.

I went to the pain clinic again and he said I was doing everything I should be doing, even asking him hundreds of annoying questions whenever I see him. He said a lot of people get so dejected they just want him to make decisions for them and he said he feels helpless because he only gets to see patients every six months, so it's a bit glib to give advice about what to do for the rest of the time.

We talked about the epidurals and he said that even a slight reduction in the intensity of the pain is a good thing, but that I do need to do a bit of work to accept that no matter what I do, it's not going to get any better. He said that my age was a major factor in decisions we'd have to make about treatment. Apparently, with this kind of injury, I should be on morphine type painkillers, but he said the slow cognitive decline wouldn't be worth it because it'd mean no more driving and, probably, not being able to work any more. Similarly, the risks of surgery are so high that we shouldn't consider it as an option unless something radically changes. I'm pretty relieved that he thinks that.

He said to take the full lot of painkillers rather than modify them according to how much pain I'm in. I'm going to talk to the GP about slow-release tramadol, too. He suggested taking paracetamol, but I think it tips me over the amount of drugs my liver can handle and I started to feel really sick within a day or two. I should be getting a liver function test soon.

I asked him about using a wheelchair on days when it's particularly bad and he explained why he'd said not to. Apparently, with the kind of injury I have and the amount of painkillers I take, I won't notice pain until discs are bulging quite far out already, so sitting and bumping around would be about the worst thing I could do in terms of risk. He said it's going to be really hard for me to accept, but that I have to get used to doing less walking around and expecting to be able to keep up with anyone else.

As a part of the treatment plan, I'm seeing a therapist for CBT around how I respond emotionally to pain and to look at strategies for telling people I can't do things they'd like me to and to take away a lot of the sense of guilt or responsibility I seem to feel when I say I have to stop doing something or that I can't do it.

Other than that, I've got to keep going to the gym as much as I can, but not to increase weights, just to focus on core strength and gentle stretching (I can just about shrug when it comes to touching my toes. I'm about as flexible that way as your average zombie, I think.).

I think I've just made it sound a bit gloomy, but I think I needed to hear all that so I can deal with it in similarly certain terms.

I'm also at the top of the local housing register for level access accommodation. I've got an interview on Thursday about a flat that they think would suit me. That would be pretty exciting, being able to live by myself and not to fall down stairs every now and again.

Thanks again for all the help. I may well be asking inane questions about new feet for crutches soon. Just had them replaced and they're still quite a jolt. Similarly, I might need a new walking stick - the wooden one I have bends if I have to put my weight onto it. But these are pretty minor worries in the grand scheme of things.

devine63

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hi Badger

sounds as if your pain guy is at least willing to explain things properly, I find that's a very good start!
regards, Deb

neurochick

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The suggestion that you take paracetamol is based on the fact that it provides a good "base" for the other more powerful painkillers like tramadol and morphine which results in the more powerful medication working more effectively.  If you are unable to take it then that's unfortunate but it is very worthwhile if you can manage it.  You are unlikely to actually feel the paracetamol itself doing anything for your pain but it is working away making the action of other drugs more efficient and effective.

There is also plenty of evidence that when you have chronic pain conditions, its more effective to manage the pain with a steady dosage taken every day rather than either going without and "living with it" or actually under medicating then continually increasing the dose when the pain becomes too much to bear.  I know it seems counter-intuitive - you think you are doing the best thing for your body by taking as little medication as possible and then dealing with the regular pain flare-ups by taking more until you feel that the pain has improved.  The reality is that under-medicating pain can cause chronic pain levels to increase in the long term. 

It is certainly the case for the condition I have where trying not to take pain medication is the worst thing people can do as it further over-stresses the misfiring peripheral pain nerves and brain/spinal column pain pathways.  The long term damage this causes and the hard-wiring of the pain signals in the brain become more established and less treatable.  This in turn causes more pain and a horrible cycle where the patient is actually making their situation worse without realising.  Unfortunately, too often doctors don't properly explain how the medication they are prescribing is supposed to help chronic pain.  They also fail to explain properly why they prescribe the pain medication in the specific way that they do.  Then patients make their own assumptions about their medication and not unreasonably think that taking less is bound to be better or that the medication "must" be causing them long term problems without knowing what the reality is.  Doctors and pharmacists could do so much more to help patients understand why they prescribe as they do and I'm sure it would save many pain patients from taking matters into their own hands and inadvertently making their situation worse.


ditchdwellers

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Excellent explanation Neurochick and exactly how things were explained to me at the pain management course I went on.  I take paracetamol as a base for fentanyl and it works well.   I hope you find the right drug regime for you that still allows you to function.

badger

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Thank you all for being so supportive.

I wish the paracetamol wasn't too much for my liver, I suspect it's teetering on the edge at the best of times, though, with me taking medication for ADHD and HIV as well as the chronic pain. Part of what he explained to me about the bad days when I can't cope was exactly what you said there, neurochick, that the more pain control I have most of the time, the less chance there is of breakthrough pain. Seems like the times when I get breakthrough pain are really clearly when I've overdone walking and either the muscles have gone into spasm or the discs have been squashed out of place again. I'm one of those lucky people who get that nerve clumping thing where all the nerves in the area panic if one of them's hurting, which makes for interesting scattered burning spots on my legs.

Definitely agree about not under-medicating, I don't buy into that idea that suffering's noble. I think it borders a bit too closely on treating an impairment as a moral judgement and that's something I'm really not okay with!

I really did feel the difference with the paracetamol in terms of pain, but annoyingly, I just couldn't tolerate it. Same if I try taking naproxen regularly, but with that I also get the sore stomach on top. At the moment, 100mg of tramadol three times a day and amitriptyline in the evening works okay, with diazepam and zapain for days when it doesn't cut it, but if I take the diazepam, paracetamol, naproxen or zapain regularly, I start to feel really unwell after a couple of days. It's frustrating, to say the least.

My GP's been really good with having discussions about painkillers and so's my pharmacist, so I think I'll go back to them again and talk it through. Should be having a liver function test next month, so that'll be a basis for a discussion about tolerance. Fingers crossed, but yes, I won't under-medicate! I have far too much I want to be doing to lose any time to pain that I don't have to!

ditchdwellers

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Have you tried taking omeprazole to protect your stomach from the effects of nsaid's?  I need it for taking ibuprofen otherwise I end up with a sore stomach too.
Juggling drugs with side effects is never easy.  I hope the liver function tests provide some answers.