Author Topic: Degenerative Disc Disease and the Pain Clinic - Advice, Please!  (Read 10120 times)

devine63

  • Guest
You're welcome.  Let us know how it goes on Friday

regards, Deb

badger

  • Bronze Member
  • ***
  • Posts: 16
Just back from the clinic. It was a bit of a quicker appointment than I think I'd expected, but the doctor has a plan and some practical suggestions. He's said I should change around the painkillers I'm on so I'm taking tramadol regularly and zapain occasionally, rather than the other way around, for one thing. He's also suggested using crutches instead of a walking stick so it's more stable and less strain. He's booked me in for an epidural, saying that it might stop the burning pain down my legs from sciatica but that it won't restore the numbness or my mobility, but numb and not in pain is better than numb and in pain.

If that works, then it means they'd plan for 2-3 epidurals a year, depending on how I react to it. If not, they'll look at other surgical options.

So, I popped to the mobility shop by the hospital and they've got some wonderfully comfortable crutches in pillar-box red. Within about ten paces of walking with them I could feel the difference - much more stable and less painful, and a fair bit quicker, too. Not sure if I've got the stamina for long walks with them and the practicalities of having both hands full is going to take a bit of getting used to, but they're quite liberating. Also, being bright red it's a bit harder for people to pretend they didn't see them on the bus or wherever.

NeuralgicNeurotic

  • Charter Member and Volunteer
  • Super Hero Member
  • ******
  • Posts: 7373
Sounds as though it was a really productive appointment, badger. Thanks for letting us know >thumbsup<

Danslatete

  • Charter Member
  • Diamond member
  • ****
  • Posts: 355
Badger, get yourself a good quality rucksack. One with waist belt as well as over shoulder straps and those outdoor mugs with the lids on, i can say it really helps. I took some time to get used to crutches and the hands did get sore.
Crutches do help you to stand more upright. I lost both my feet for about 18 months, after i had the first surgery one came back slowly the other was still a penguin flipper. After second op the other foot came back and so did the muscle spasm and nerve pain hit me like a wall. I took about 4 years to get a good recovery from that, and sorry to say it has gone down hill slowly since then. I am still on naproxen and pre gablin and solpadol (codeine 30 paracetamol 500) which at the minute i manage to suit me. I also have diazepam for when the muscle pain is so bad that i cant sleep.
I see the pain clinic every few months for accupuncture and i get meds reviewed yearly.
I get a lot out of my pain clinic although some people are a little resistant to some of talking treatments.

Mabelcat

  • Charter Member
  • Hero Member
  • *****
  • Posts: 1603
I'm glad to hear it all went well for you.  I've had mixed experiences with my local pain clinic which seems to specialise in offering endless assessments but little actual treatment so I just seem to sit on waiting lists.  They don't seem to be geared up to people with extreme fatigue as well as pain.  They offered me hydrotherapy which was great but they seemed not to understand that the hour each way in the car was too much.  I'm also apparently functioning 'too well'!

badger

  • Bronze Member
  • ***
  • Posts: 16
Thanks everyone!


Danslatete, it sounds like you're on quite similar medicines to me - I think Zapain's about the same codeine/paracetamol ratio as solpadol, but I also have naproxen and diazepam for when it cramps during the day. He's said to switch off the zapain because taking two four times a day is 4g of paracetamol every day so is a bit too much, so I'll be shifting onto tramadol instead. the back specialist I saw said that acupuncture might help me a little but it'd be more like the kind of distraction a TENS unit provides than helping to recover sensation. It's a little gloomy to be told that the epidurals won't help with that and may not help at all, but it sounds like it's worth a shot for me.

He's said that once we've found out if the epidurals work well, then we can look at whether or not a talking therapy would be good. It's quite strange to hear him say it's all very much in the early days at the moment when I've been in this much pain for a year now, but he seemed pretty confident that it will be manageable.

Mabelcat, I'm sorry to hear that. I'm quite lucky in that I live near to a pool and gym and they've been just brilliant about helping me out with figuring out what exercises I can or can't do. They also do some very gentle exercise classes, some in the pool - might there be something more local to you than the hydrotherapy place? I don't know enough yet to base an opinion on the place I've been to, but they definitely seem more focused on getting you out of pain rather than dealing with fatigue. He'd said I need to keep as active as possible, I told him I do go to the gym or swim about three or four times a week, but there's usually two or three days a week where I have to spend most of the day lying down because walking is just too exhausting when your leg doesn't listen to what you're asking it to do. He seemed to think that's not a particular problem. Kind of cuts back how much I can work, though, which is a bit of a bind!

It does seem like there's this perverse situation where on the one hand you're offered support because you need to get back to functioning, but if you get back to functioning, the support isn't as readily available and you have to let things get bad again before you can get the help that would have stopped it from getting bad again!

Danslatete

  • Charter Member
  • Diamond member
  • ****
  • Posts: 355
I have done hydrotherapy and other rehab treatments, from alexander technique and physio and traction, chiropractors, manipulation, streching the sciatic nerves, accupuncture, tens the list is endless. I just started yoga. I think i will give anythng a try. I have had epidural injections with steroids and anti inflamortary stuff. Drug by the bucket load and in many different doses and 'methods'.
I did in patient rehab for 3x 5weeks after having the surgeries.
DDD is a horrid disease.
All i will say is please take care of your stomache and make sure you take the omeperazole or whatever stomache protection they have given you.  I got ill will diclofenac and with ibruprofen( which at large doses are liike horse pills.) because i either forgot or just didnt realise how important they were. It led to me being anaemic for a long period of time..like years. 
Dont give up on exercise, always try to do something even if it is just moving around regularly. If you are able then keep the core muscles in good order.
All the best !!

badger

  • Bronze Member
  • ***
  • Posts: 16
I've been pretty lucky in that I've not had stomach trouble at all yet, but it sounds like a good discussion to have with my GP if this is likely to be a longer-term thing.

I've not done hydrotherapy specifically, but I really enjoy swimming as it gives me an hour or so of feeling like I'm fit and can move quickly. The gym's good, too. I've managed to find a set of exercises which don't put too much pressure on my back. It was funny, a few days ago, one of the gym bunny types said "You can lift a lot of weight!" in my head I couldn't help but add a "...for someone who can't walk properly", which is a habit I've really got to get myself out of because on anyone else I wouldn't use those belittling caveats, but I seem to do it to myself, which is just silly.

I've had physio, but they've said they can't do anything beyond let me know what exercises to do and then send me off to get on with it. Acupuncture is okay for relaxation but doesn't do anything about the pain. TENS just seemed like too much hassle and kept making me jump.

The crutches are much easier for getting around, and I'm more stable, but I'm still getting used to them, catching them on kerbs, or shoulders getting tired so they scrape on the floor, that kind of thing. I guess it's something I'll get used to - maybe take it a bit easy on shoulder exercises at the gym, they're going to be getting enough of a workout!

It is a horrid thing, it's the vague prognosis that makes it difficult. The thing the doctor said about this being very early days yet, even though it's been a year of constant pain and going back and forth to hospitals for yet more MRI scans when they're worried about cauda equina (I got some of those "red flag" symptoms that are a bit embarrassing). The prospect of a cycle of injection, recovery, decline then another injection doesn't exactly fill me with delight. I really, really don't want to get surgery. I've already had one failed nerve op which has left my hand weak and numb, so I'm exceedingly wary of more.

badger

  • Bronze Member
  • ***
  • Posts: 16
Just wanted to offer a little update on how I've been getting on with this.

Shortly after the last set of posts, I had an epidural injection which seemed to help a little. A couple of weeks of horrific pain, then about two months of it taking the edge off the pain from sciatica, but no real change to the grinding (presumably arthritic?) pain in my spine. The epidural has now worn off and I don't think I was really prepared for how hard it would be to get used to the pain again when it came back. I've got a car now, thanks to Motability, and that's given me so much freedom and a lot of relief from the pain I was getting from using a bus or from walking to places from the bus stops.

I'm also receiving counselling as a part of a belts-and-braces approach to trying to get on top of this. I'll be seeing the pain management clinic again next week and I'm not sure what the next step might be. There are still a lot of times where the tramadol I take isn't enough and I have to take diazepam and naproxen as well and a fair number of times, nothing at all touches the pain and I can barely move my leg without wanting to bite someone because of the pain. I had one of those days yesterday, trying to walk (with crutches) all of the few metres to the corner of the street and had to take it two steps, pause, set my jaw and try again. On days like that, it's just hellish and I find myself wishing I had a sneaky wheelchair hidden in my jacket pocket or something so I could still move about at all without that intensity of pain.

I know the pain clinic doctor's quite against me even using crutches because he thinks I should just not walk at all if it hurts rather than pushing myself, but it's impossible just to stop working or going anywhere or doing anything just because I'm in pain. I might have another talk with him when I go in next week to talk about mobility options, it's just (excuse the pun) a big step to have to think about it even!

Thanks again for all of the messages with advice and support. It's almost 18 months now, and it's still really difficult, so hearing from others is an enormous help.

devine63

  • Guest
hi Badger

it's great to hear an update from you, thanks for making time to do that.

Reading what you said, I am struck by something - I hope I'm not going too far down the "stating the obvious" route!
You do know, don't you, that you don't need anyone's permission to start using a powerscooter outdoors?  You can even get some which can break in two to fit in the car ....   There is no reason you have to struggle and waste too much energy walking - lots of disabled people use a wheelchair or scooter for such reasons rather than can't walk at all reasons.   Why not go somewhere with a Shopmobility unit and try one out?  I used one recently at the national Motor Museum at Beaulieu, it make a huge difference to how much I could enjoy the day.
regards, Deb


ditchdwellers

  • Charter Member
  • Hero Member
  • *****
  • Posts: 3238
Badger, it took me quite a while to get my head around the idea that using a wheelchair would increase what I could do, rather then limit it.  I felt very self concious the first few times I used one, and now I wouldn't be without it.  I now have both a manual and a power chair and use both under different circumstances.
Using them means I actually enjoy a day out and can last so much longer than I would dragging myself around on crutches getting exhausted and in agony.  I've not used a scooter as I have problems with my shoulders and hands, but lots of people here use them, and like Deb find them very useful for day trips.
You can ask for a referral to Wheelchair Services from your gp and they will be able to advise you better.

Yvette

  • Guest
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.


Achesnpains

  • Charter Member
  • Gold Member
  • ***
  • Posts: 74
It took me quite a while to come round to using a scooter , as it had done to using a stick. I guess that was part of the transition from AB to disability for me. It was hard to use the scooter at work as I was always meeting people I'd known before I was ill, but it's now 7 years on & I wouldn't be without it. In some ways I think i had to get really fed up of NOT going anywhere to make me realise how much freedom it would give me.
I will confess to being a bit grumpy at airport though as I feel like I turn into a piece of luggage!

Yvette

  • Guest
And it isn't just about freedom - it is about being in less pain too!

badger

  • Bronze Member
  • ***
  • Posts: 16
Thank you! Once again, that's all really solid advice. I think the trip up to London I just had really underlined that I need to think seriously about what my mobility options are. There were a couple of days where I'd done far far less than I'd wanted to, but still wound up almost in tears trying to walk by the afternoon. If there'd been a shopmobility in central London, there really wouldn't have been any question about it.

I suppose my reasoning for wanting to talk to the pain clinic doctor about it is that he'd said that I shouldn't be pushing myself so hard to maintain a level of activity that I was used to, because it'll speed up the deterioration of my back. I think it's fair to say there's a fair chunk of fear holding me back about things like that, irrational though it is.