Author Topic: Degenerative Disc Disease and the Pain Clinic - Advice, Please!  (Read 10119 times)

badger

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Hullo all,

About a year ago, I had a pain in my side which I've had on and off since I was about 18 and was acute enough that I went to hospital with it. 18 years after I'd first reported the problem, I finally had a spinal MRI and they've diagnosed with multi-level degenerative disc disease. They said the MRI showed just one disc that had any of its contents and even that one wasn't any good. The pain I was in was because one of the six slipped discs they could see had split apart and the loose chunk had lodged in my spinal nerve.

I've gone from being someone who regularly could enjoy athletics to being in constant pain and can only walk slowly, with a stick, and with a lot of pain, despite being on masses of painkillers (zapain, tramadol, naproxen, diazepam and amitrypteline). I had previously had nerve problems with my arms and with migraines and the like, but this has been the first time when I've had no choice but to disclose that I'm disabled. It's been quite a blow to my pride, even though I've had a lot of support from family, partner and friends.

They've said they don't want to go in to operate because there aren't enough healthy discs to know which ones to fuse, that once they started, they'd have to fuse them all, so I've been referred to the pain clinic, who I'll be seeing this week.

I've had to cut right back on work because I struggle with travelling and although I manage to get to the gym most days, I'm struggling in a lot of areas of life. I'm on the council waiting list because I can't wash at home and because I need level access, but they're not putting me in the category where my current housing worsens my health and I don't understand why.

I suppose I'm not entirely sure what I'm asking here, beyond wanting to try to talk to people who've gone through something similar, rather than friends who I start to feel guilty because of how upsetting it is for them not to be able to do anything to help me.

I've read through the information booklets for the Pain Clinic, but I'm not sure how they work or what to expect from it. I'm surprisingly nervous about it - when the appointment was pushed back, I got horribly upset and I realise that I've been holding it together on the hope that the pain clinic will be able to help me or at least guide me to a point where I can accept that this pain just isn't ever going to go away. I'll admit there are days where the prospect of being in this much pain constantly for the rest of my life almost makes me wish that the rest of my life wouldn't last particularly long.

I guess what I'm looking for is any advice from people with similar experiences of DDD or going to a pain clinic, or just a bit of a "yeah, I get that too" from other people living with chronic pain. It's a weird shift in lifestyle and identity and I know I've really not entirely got my head around it yet, so tips or thoughts or whatever would be really appreciated at the moment.

Sorry for the slightly panicky rant, I promise I'll post some perkier things, too.

KizzyKazaer

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Hi Badger and welcome to OuchToo - first off, here is a place where we never need to say sorry for sounding less than happy!  It's natural for you to feel all sorts of conflicting emotions if you've become newly disabled.  Feel free to post about them as much or as little as you like  >thumbsup<

Pain, painkillers and pain management are frequently discussed topics here (and on the main board, Talk) so I'm sure someone will be replying to the more specific details in your post sooner or later!

Fiz

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Hi Badger, I have ddd too, though I have to say yours sounds far worse than mine. My pain varies, I have lost 2.5 stones in the last 3 months and that has helped. Before I was in pain constantly all the time, but now I have some pain free times. There is much I can't do, I can't lift or carry or bend forward and sometimes the pain is bad. I can't travel on buses (when they lurch around corners it jars my spine), can't carry in heavy shopping or pick things up from the floor or low table etc. Getting in and out of cars hurts but is better if I can open the door wide.

I will be interested to hear how the pain clinic helps you and what they do to help. I have heard good things about the pain clinic, so I hope you find it helpful. I had some physiotherapy, I only made a couple of sessions as I have MH issues too and the social anxiety got me but I did learn some good helpful techniques. I learnt how if I bend my knees slightly and tip my pelvis forward, it takes the weight off the 2-3 discs that are really damaged and I can stand and queue in much less pain like that, before learning that, queing for anything was impossible as standing still is painful.

I applied for a DFG for adaptions in the bathroom, not being able to bend meant I couldn't get out of the bath so needed a shower. My need was deemed as 'substantial' and the wait I was told initially would be 6 months but turned out to be 18 months, but now I have a shower and can wash without pain and it's marvelous. The first time I showered and washed my hair and had no pain I cried with the relief! But I am very mobile and find walking no problem usually as long as I am not carrying anything.

Do keep me updated with how the pain clinic goes. I take various pain killers, tramadol works well for me on my bad days.

devine63

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Hi Badger

welcome.  I can pick up a few things from your post, so I will concentrate on the practical stuff.

1.  home access to bathroom etc - ensure that you contact your local area Social Services dept., talk to the duty social worker initially (should be one any time in office hours).  Tell them you need assessment by an Occupational Therapist to see what adaptations can be made to your existing home bathroom etc (if it cannot be changed, that will strengthen your case for a move)

2. transport and work: you should be entitled to help from the Access to Work scheme (https://www.gov.uk/access-to-work you have to apply rather than your employer doing it) which can assist with transport costs (including taxi instead of other types when needed) and also may help with an ergonomically designed chair and adapted computer equipment if that is helpful, depending of course on your kind of work.   

You are entitled to ask your employer for "reasonable adjustments" to help you to manage your workload (e.g. I have my hours adjusted so that I can travel at quieter times and I do core hours at work (10-4) then some work at home to ensure I do full hours).   If necessary one can ask for some changes to role / workload (e.g. swapping things you find hard to do for other duties) and ultimately they can consider you for redeployment to another role if you are unable to do your current job at all.

3. 
" but they're not putting me in the category where my current housing worsens my health and I don't understand why."

Write and ask for an explanation, if you don't get a satisfactory answer try local elected councilor and / or your MP - and when yu write to them, draw on the advice from the British Institute of Human Rights (http://www.bihr.org.uk/documents/policy/changing-lives-second-edition ) and phrase your complaint in terms of breach of your human rights [it will probably be the dignity one].

4.  Have you submitted a claim for Disability Living Allowance?   You may be entitled and it is paid to people who are working.

Let us know how it goes,
regards, Deb

 

badger

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Thanks for the comments!

Deb - the pain team should hopefully be able to sort me out with the home access stuff, but it's privately rented so the landlord would never let us remove the bath for a walk-in shower, which is what I need. I'm freelance, so I've been able to talk to access to work and have a nifty sit/stand desk and a good ergonomic chair that I can work at for short bursts, but the best paid parts of my work involve travel at awkward times, so I've lost those clients. Luckily, DLA and WTC and Housing Benefit all came through for me without any real trouble. I'm not sure whether to be pleased I got middle-care and higher-mobility pretty much by return post or horrified that I'm so clearly ticking the boxes.

The MP here won't help. Every time he appears in public, he harps on about wanting to cut the amount paid in benefits and doesn't know the difference between ESA and DLA. Nasty piece of work, scaremongering and touting the usual Tory line about "the idle poor". Hopefully, I can get the pain clinic to press the case. It should be pretty obvious that if I can't safely use the washing facilities at home, my health is going to deteriorate, but when I said this to the housing office, they said "Oh, you're in a good band already" like I should be grateful to be in the wrong tier. They've also just started rehousing everyone they're making homeless with the bedroom tax and are putting them above everyone else on the waiting list.

Anyway, I'll keep you posted on that, I've been pretty lucky with other things going through easily enough so fingers crossed it won't take forever to rehouse me, but I have been on the list for a year now and I'm kind of wanting to not schedule everything so I can go to the gym first and shower! The leisure centre people think I'm super-keen, though!

Fiz, I had physio as well and it helped get out of the worst part in the beginning where I just couldn't do anything without the pain jolting me, but now it's settled into just chronic stuff, the physio had to admit that they'd done all they're able to try, so until something medical changes there's no gain in me having another appointment to go to. They did give me lots of nerve glide exercises and things like that, which really helped.

I've heard great things about the pain clinic, everyone I've spoken to who've seen them has said it's been great for them, even the woman who had a nerve in her neck burned away so it went numb said the pain of the procedure was worth it.

Anyway, I'm up late because I'm sore and I really should try again to get to sleep. Thank you all so much for replying, it's nice to feel like it's not quite such unexplored territory.

NeuralgicNeurotic

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Hi badger

Just a few more points about the Pain Clinic. I know that some people here attend separate clinics for actual pain relief (medications, physio, pain control procedures) and for pain management (usually a more psychological approach). The clinic I attend offers both, and I am waiting for my consultant anaesthetist to arrange a place on the psychological management programme for me. Like you, I was an extremely physically active person before my pain became overwhelming, being very into hillwalking and distance walking - loosing this has cost me a huge chunk of my social contact, and something which helped to keep symptoms of my mental health condition under control. If you're finding the process of adjusting to your new situation difficult, it might be worth exploring at your appointment what options are available for psychological pain management, and also for straightforward emotional support. The pain clinic is unlikely to offer the latter, but may be able to advise you on how to access such services.

Hope this has made sense - I'm a bit waffly this morning. The problem of identity is a tough one to struggle with, but you'll get there.  :-)

badger

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Hi NN,

Yes, your post made total sense. Bit less grumpy today, but too sore to manage to do anything particularly involved. The local pain clinic here is a a one-stop shop! I'm really hoping I can get to see their OT and the psychologist because it's that stuff I think I need the most help with. Seemingly, pain control won't give me proper use of my legs again (at the moment, one's totally numb or painful and the other one's on its way to being the same. Can still walk - ish but I have to look at my feet to be able to tell where they are!), but I'm having too many days where the pain level gets desperate. Psychological/practical stuff should hopefully help lessen how often I get those, but safer long-term painkillers would also be good - I suspect my liver's not going to be able to take this for long!

Getting used to doing less is hard, I keep trying to fill my time with other things. This kind of condition really doesn't go well with ADHD (which I also have!).

Sunshine Meadows

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Badger,

I don't have DDD and have not been to a pain clinic, so can't help in those areas but I can identity with

Quote
I'm not sure whether to be pleased I got middle-care and higher-mobility pretty much by return post or horrified that I'm so clearly ticking the boxes.

 >bighugs< even when the 'brown envelope contain news of a successful claim it never feels like good news. Still it will help with day to cost and buying things that make life easier and also more enjoyable.

I don't know if you have a car and drive but if you do and driving is becoming or is already too difficult you might want to look into getting hand controls for your car eg I have a accelerator on my car http://www.elap.co.uk/motoring/vehicle-adaptations/electronic-hand-controls/over-ring-accelerator/. It means on the occassional good days I have I can grab the freedom to be me.

Something else is try not to read the Daily Mail or other papers with hate stories in it is just not worth it especially while you are getting your head around having to claim and being disabled. One thing I try to do is listen to those who are close to me and who I chose to be friends with and not any silly divvy who might look at me sitting and telling me I dont look disabled. Bit more difficult than it used to be now I use a wheelchair.

Welcome to Ouch Too.

badger

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Hi SunshineMeadows,

Thanks for that - I'm waiting at the moment to see if I can have my driving license back, I had weird migraines that they weren't sure whether or not they were seizures, so erred on the side of caution. Seemingly, they could have been caused by my back, it now transpires! Luckily, I've not had one for a couple of years, so I'm going to be looking into whether a car is affordable - I'd definitely be using motability if I did!

The acceptance thing is hard - at the moment, I'm stubbornly using a walking cane and trying as much as I can to walk, but I'll admit quite freely that when I've gone through an airport and they offer wheelchair transfer to the gate, it's made my life so much easier and the journey less painful that I'm wondering if a wheelchair might help me get around with less pain than I have at the moment. It's definitely on my list of things to discuss when I go to the clinic. At the moment, I'm not getting out and about nearly as much as I'd like to, so anything that helps me to get out and doing things is a definite plus.

Thank you! It's good to be able to have a think out loud like this.

devine63

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Hi Badger

glad to hear you are already getting some of the help I recommended, that's good.  Not sure I understand why A2W cannot help with your work / transport issue - their support is not a one off, it can be reviewed and changed over time.

It can be very difficult to make the adjustment to having an impairment, so don't beat yourself up if it takes time - it does, lots of time!  As for the wheelchair thing: how about a halfway house?    What about using a motorised scooter to get to local shops etc.?   Or use a shopmobility scooter if you go to a local high street or shopping centre?    I used one at Beaulieu Motor Museum last year - it made all the difference not to have to stand and walk so far, less pain etc..
 
As for managing the ADHD - it is your brain that needs to be kept busy, not so much the body, so have a wide variety of different brain tasks you can choose from - e.g. I like logic puzzles, my partner is into Sudoku, my mum likes complicated large jigsaws, I also spend chunks of time on my family tree using ancestry.co.uk and so on .....that's 5 things you can do from your desk....there will be plenty of others.    Or get involved in local politics and start an online campaign now to get your lovely MP voted out - the election is only 2 years away!
regards, Deb



NeuralgicNeurotic

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Hi again badger

Just further to the point Deb made about Shopmobility, they also offer scooter and wheelchair hire (as opposed to signing one out from a centre), so you can decide what suits you best before investing in it. They usually have a range of manual and power wheelchairs and a few different types of scooter. I did this before buying my own mobility scooter, and the local branch couldn't have been more helpful. If you can't make it to their premises, many schemes offer assessment at home. Might be worth checking out.

You should be able to find a branch near you on this site:

http://www.shopmobilityuk.org/

badger

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Thanks Deb and NN,

The trouble getting to work is that it's quite far from here and whether I go by train or car, it's just too painful to be able to get through it. They've been great, offered me a budget for a support worker if I need help beyond asking mates for a hand and things like that. It's just the simple thing that I can't comfortably travel long distances without being wiped out. I'm finding work nearer to home, though, and that's starting to pick up, so hopefully I'll be a bit more financially independent soon, too.

I hadn't thought about using shopmobility as a try-before-you-buy kind of thing to take wheelchairs/scooters out for a test drive. It might also help me to get my head around the psychological step involved if I can sort of see how it feels doing it rather than thinking about it. There's one in the town near here, so I might give that a go next time I have to head up!

Thanks for that, it's really constructive advice!

ditchdwellers

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I attended a pain management programme and found it really informative and helpful.  Before you go to the clinic, it may be worth keeping a diary of your pain noting if certain activities cause flare ups or ease the pain.  You may begin to see some patterns emerging, eg time of day, activity, weather etc.  If you annotate your notes in some detail it will help the pain consultant and psychologist see how they may be able to help you.

Pain management programmes vary considerably from clinic to clinic, so its a little difficult to say what to expect.  I would suggest going in with an open mind and be prepared to try anything (within reasons!) that may help.  I have found that I need to use a mixture of approaches to get me through the day and it varies from day to day as to which approach is most effective.

I use a wheelchair outside and found it quite liberating once I got my head around the whole idea of being a wheelchair user.  For some reason, I was reluctant to accept that I needed mobility assistance and the time spent dragging myself around on crutches was wasted once I realised how much more I could achieve using a wheelchair.  It definitely helps the pain andfatigue and makes days out an enjoyable possibility.  Now I use my chair as much as possible when out and about so that the small amount of energy I have goes a lot further!

It may be worth contacting Access to Work about a wheelchair if you feel it would help you in your working day.  Ask for an assessment and see what they suggest.


devine63

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Hi Badger

might it help with the travel to work if you could stay at a hotel halfway to the place?  Cut down your journey time?   That might make the travel possible....
regards, Deb

badger

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Thanks, Ditchdwellers!

It's funny, that was my thought when I used a wheelchair for airports, that it felt so much more comfortable that I'd probably wind up saying I was wheelchair-liberated or something really silly like that.

I haven't kept a diary particularly (ADHD kind of stops any attempt to do that and the painkillers are stopping the ADHD meds from working properly) but I know that although I'm always in pain to some degree or another, it's worse after I've been out and about for more than an hour or so and it doesn't enormously matter what I'm doing that isn't resting, if I have an even vaguely busy day, the next day is just exhausted and I'm in a lot of pain. I try to pre-empt this with painkillers, but I know I'm not finding the right balance between getting out for my sanity and taking so many painkillers I'm out of my head when I get out!

Before I go to the clinic on Friday, I'm going to make a list of things I want to ask them about (housing, mobility aids, seeing a psychologist, medication and so on) because I'm sure I'm going to get a bit flustered by it! I've heard nothing but good things about them - well, apart from that the thing they do to burn a nerve away so it doesn't hurt is incredibly painful - so I'm just really hoping I can get solid, sensible advice rather than keep on trying things that might not be helping long-term.

Deb - it's an idea, yeah, but I have enough trouble sleeping on the bed I have that I would worry a bit about hotel beds! In any case, I'm finding more work locally already, so I'm quite contented that it'll pick up with time, especially once I've had a chat with the pain clinic and know what I should reasonably expect of myself.

Again, thank you all for the help with this, it's really appreciated.