Chronic pain - how do you cope?

[Grockle]

I have chronic lower back pain (due to hypermobility, herniated disc & related sciatica) which doesn't seem to respond to painkillers. It hurts so much and is so wearing. If I could lie in a hot bath all day, I'd be ok but I have to go to work. I'm now on amitrypiline but that doesn't help (nor does it help me sleep which is another problem). I just don't know what to do. I've tried co-codamol, solpadol and DPs tramadol. Has anyone found anything that helps? I'm so fed up and have such a cocktail of drugs to take every day. It's making me miserable.

Hi Grockle sorry to hear you are suffering in such a way.

Have you been refered to a pain clinic? What dose amitryptiline are you on? If it's not working go back to your GP and ask about upping your dose. With a herniated disc and associated sciatica you also need to get to a physio (DP's resolved within 8 weeks after a combination attack of amitryp and physio) but it was truly horrible watching him go through it.

Me, I have fibromyalgia and get sciatica down both legs and 'sciatica' down both arms, I am on 50mg Nortryptiline daily (2 in the morning and 3 at night) and take diazepam and codiene when I get a nerve pain attack. The trick is preventing them rather than treating the pain so avoid known triggers - I can't swim as this sets my arms off, and walking long distances sets my legs off.

I would say I am coping, I was, but i'm not anymore. I hate being like this, I was in tears on Sunday at how useless I feel. I'm exhausted, being in pain is wearing me out and wearing me down and I want it to just stop :(

Sorry I can't help. I know the 'theory' of how to help but really, it's so so hard to put into practice :-( My tips:

Get a good GP/Pain Clinic Dr who listens to you and can work with you to get a good medication regime

Physio, Physio, Physio - don't underestimate this!

KEEP GOING! Seriously, rest is very much over rated, keep going until you want to stop, keep going that little bit more THEN stop

Heat and Cold

CBT

Someone will no doubt come along and tell you thats all crap and don't do it, but it's my way of coping :o or not. :o

Good luck!

Thanks for replying, MrsCustard. Not been referred to pain clinic but have had physio. I was discharged as the physio said I was undoing everything we were doing by going into work (I work with small-ish children).

When I've been desperate, I've stoled DP's diazepam and that does help but my GP won't prescribe it (he also thought that when I said I wanted to be hit by a bus, I was much better and to go back in 4 weeks). I do keep going, I'm just so very tired!

Sorry it is hard for you too.

It may be you need to be signed off work for a few weeks and focus on your physio to get better.

How far down your leg does the sciatica reach?

Diazepam is addictive which is why they won't prescribe it for longer than 7 day stretches for acute pain. If you can cope without it then do.

DP has just chipped in with:

Lay flat on the floor legs stretched out
Sit on a hard backed/hard seated chair
Do your physio or you'll never get better

He also sends his sympathies and walked off rubbing his back :o

I'd second going to a pain clinic, they can offer everything from tenze to accupuncture to massage to fentynal patches!

Also are you under a rhumatologist? I'm at the physio's response to you - what do they expect, you to give up on your work, they should be helping you find a way to solve the problems around you working not leaving you high and dry.

I've got hypermobility syndrome and I've had some shocking phisio too - I'm now under the clinical lead physio for rhumatology and she is brilliant. As someone who had to give up work due to pain and fatigue I'd also say do all you can to get your job adjusted to suit you - reasnoble adjustments are what you are entitled to and you need an assesment from a qualified occupational therapist. I think this can be done through 'access to work' if you don't have an ocupational health department at work - ask HR. Don't let it get to the point you start needing lots of time off - it's hard to get back to where you were if you deteriorate and tackling problems before you need to stop is easier and better for you in the long run.

You don't even need to give up work, be signed off for 3-4 weeks, intensive physio, get the herniated disc resolved and the sciatica under control then start to manage your HMS. Acute pain first!

I saw a rheumatologist who said it was a herniated disc & referred me to the Physio. It didn't help much. The pain comes and goes - it's always there, usually just a dull ache but often it gets quite bad and makes me want to cry. The sciatic pain (when bad, goes down my thigh) is bearable because I know it will go away, whereas the achiness doesn't ever completely go. Am just fed up.

Hi, I will third the need for a pain clinic. I havent been yet (on list for what you have by the sounds of it) but I believe they are brilliant.

I have two disc prolapses as I am hypermobile in my lower back and the discs seem to slide about at will. The sciatica is horrid but mine goes into my feet as the nerve is a bit shot. My biggie is when the whole lot spasms when the discs try to leave.

I am currently on diclofenac and co-cocadomol daily and have started on gabapentin. I didnt like amitryptilene at all. I am increasing the dose of gabapentin very slowly so I am not a zombie at work and the pain clinic will prob want me on something like that anyway. I too have a secret diazepam stash for emergencies!

Now I do not like physios, I have been to too many rubbish ones which have nigh on crippled me and all contradicted each other. THey all go 'ooh arent you bendy' and then crunch things too far and recommend swimming and that arching thing which means I can be in bed for weeks.

I have an osteopath who helped me through pregnancy and the years after and every so often when v bad and recommended one on one pilates to get into a routine with a specialist type pilates person who understands hypermobility and can help strengthen the core. I would recommend a combination of osteo and pilates when you can rather than physio (but thats just me).

And the heat / cold is a lifesaver - cold when its critical and then the combination after.

And the pillows for the various posisitions as recommended above.

Hope that helps.

Oh and get back to the GP and get referred to the pain clinic........!

Thank you. I don't know how to get a referral to a pain clinic - can I just ask my GP? He thinks it's all in my head - I am now depressed (partly because of the long-term pain and discomfort) and he thinks everything is down to that & ignores the fact that I was ill (long-term illness still being investigated) and in pain long before I got depressed.

I get weird cramp in my back in the night - is that spasms? It wakes me up

Heat is good - the pain goes when I am in a hot bath or in bed with the electric blanket. But I can't spend my life in bed! Much as I would like to.

The cramp in the night could well be spasms if they wake you up, that is what my GP prescribed me the diazepam for, for emergencies. I have them saved for when in dire need!

Pain clinic, well I have been waiting a long while and I got the referral after all other avenues had failed. I have had MRI's and seen lots of consultants and had a couple of injections.

Different consultants said diff things, they all said I was too young to operate on just yet really, lets wait, have an injection etc.

THe last one said the nerve damage was too severe, too late for an operation (you think after 17 years!?!?!?) so off to the pain clinic.

I would say change your GP, yes pain can cause depression, living with something like this, that pervades every aspect of your life is bound to have an effect. You need someone on your side.

Write it all down, every symptom, what you have tried etc, and go and see a different GP.

And dont ask directly for diazepam or they will write you off as a junkie with depression - say the spasms and twitches keep you awake and wake you up!

Good luck.

Hi,
I haven't read the other replies, so I'm sorry if I repeat what others have said.
I have multiple endless chronic health conditions, but my spine problems include a incomplete spinal cord injury, 3 previous burst vertebrae fractures , spinal stenosis, spondylyosis and spondylyothesis.
I've had a few spinal surgery already and I'm expecting more.
The pain is so severe it's horrible :-(
I currently take morphine and fentanyl for my spine pain. I'm possibly starting the relatively new drug palexia too. Ive tried all sorts of pain medication.
What I currently use takes the edge off the pain but still leaves me in a lot of pain.
Some people use a TENS but I find that aggravates my nerve pain.
I use ice packs (which I prefer rather than heat packs )
I've had on and off physio and hydrotherapy since 2007 when the spine problems started.
Because the nerves and spinal cord slightly damaged I can't use my bladder or bowels properly, so I take medication for them and use catheters and a peristeen.

I have had spinal injections but they havent helped me.

www.painsupport.co.uk
I've been a member to this website for a few years, very helpful!

Eeek, I can tolerate the pain if the only solution is injections in my spine

look, your experience doesn't sound great. And Reeny, I have nowhere near the kind of problems you do, sorry yours are so severe. Thanks for the link

I have a bad back and am moderately hypermobile in my spine and other joints. I did have the local anaesthetic and steriod injections once at the nearest chronic pain clinic (about 10 miles away). I swore that I would never have the jabs again unless the Dr marked off where the injections were to go in and then put me under GA to do the job. The pain of the injections were bad enough, but the 1st 3-4 days after were excruciatingly painful and the better effect of the jabs only lasted 5 weeks before wearing off.

I am now on Transtec patches which release 35mcg of buprenorphine per hour, celecoxib 100mg, pregabalin 50mg in morning and 75 at night and mycrogynon 30. This seems to be doing OK for the time being and I'm hoping it works this well for a long time, but I can't see it lasting as long as I would like it to.

Reeny how are you doing these days? Are you having any surgery in the near future or is it going to be further on?

Will have to leave you good ladies as I have a nasty virus that DD passed on to me (thanks DD, just what I've always wanted) and it's causing me to become quite lightheaded, so I will go on to bed and see you in the morning.

Take care

My first injection was lovely, well not lovely, but you know what I mean. Fantastic doctor and the benefit lasted 8 months.

The second was done by a muppet, or perhaps someone on work experience, horrid, and it didn't help.

I would have another, will try anything, if I ever get to the pain clinic!

Hi avenged, hope you recover from your virus soon. Having chronic conditions and then an infection on top is very difficult.
I'm waiting for more spinal surgery, been waiting 31 weeks now.
This time they are going through my abdomen as well as my back. So I'm a bit apprehensive on recovery and post op infections, as there will be a wound on my back and my tummy.
My current scar from my previous spine surgeries runs from the bottom of my neck to my bum, it's really long.
At my last foot and spine op, I caught MRSA which was all over my body and in my wounds, and got into my blood too (possibly through femoral line). I also caught C . Diff. At the same time, and was extremely poorly and had time in ICU.

(MRSA in blood - septicaemia)

Afternoon ladies . I'm not feeling much better today, and I haven't eaten much over the last 4 days because my throat has been so bloody painful with this virus, so it's been mainly water and effervescent multivitamins, lots of Ultra Chloraseptic, strepsils and tea. Even eating soft foods like mushy peas is painful. Coughing and sneezing is also sore on tyhe old throat. I can just about get my painkillers down me neck so that's something.

Anyway, enough about my boring life, how are you good wimmin today? Are you feeling OK/bad/not great/not too bad or all of previous . I hope you're all doing OK. Did you get a good night's sleep last night? Just wondering as a a good night's sleep can work wonders for moods, which in turn can help you deal better with your pain.

Reeny you really sound as if you're going through the mangle ATM. I hope you're keeping your chin up? You're a brave lass. You know, I can't begin to imagine the pain you're goung through, it must be excruciating .

Make sure you are eating ok - your body needs fuel!

My back is knackered - its crappy design basically, and years of bad posture, heavy loads, bending too much...

I swear by my osteopath - after years of chiro, physio, painkillers..... and mediatation/hypnosis to take the focus away from the pain as I really really hate painkillers (especially the horse tranquilisers the doctor gives you). I learned some techniques for 'turning down' the pain using hypnosis/visual imagery.

I have to say that its not bad all the time. Most days it is twingeing but a couple of times a year, something pops or tears and I am flat on my back for a weeks or so, then hobbling around like I have a poker stuck up my bum for about another 3-6 weeks.

Alcohol is bad too - you don't move around so much in your sleep with a few drinkies in you and it makes you really stiff!

It's been really rough for a long time, but I'm slowly learning techniques to try and cope.
Many people are surprised when they see me as I always have a smile on my face no matter what I'm going through.
I do get down moments but I normally hide them away from everyone (expect my immediate family who have to go through everything with me, so they only see the true suffering)
I try and find a positive out of a negative.
I'm trying to practice mindfulness too.

I try and take sips of smoothies when I'm too ill to eat

I found these 2 articles brilliant and have given them to friends and family to read, to help them understand what it's like having chronic illnesses and living in pain.

www.butyoudontlooksick.com/articles/written-by-christine/chronic_illness_feelings/

www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

I'm now obsessed with spoons lol and have even made my own spoon jewellery.

Hi OP, I've had v similar problems to you in the past. Not everyone gets over it, and I'm in awe of some of the posts I've read here. But my story is that you can get over at least some of what you're going through. I am now mostly pain-free and do a lot of running and yoga (through choice, it isn't obligatory for those who get over pain ). It took 5 years, but only about 1 of those years was hell.
What I found helped was cranial osteopathy, acupuncture and pilates. They are not generally available on NHS but my specialist recommended me to try them and fortunately I had the cash.
I know how hard it is to summon the energy to ask for referrals, but please do try everything you can! Because clearly different things work for different people. I had crap NHS physio but great NHS consultant: he said don't have op, gave me the injections but they didn't work, but he did do some acupuncture and convinced me that was a way forward for me. Others have clearly had much better physio experiences but less good with consultants.
If you decide to try pilates, look for a physio-trained pilates teacher. I also use custom-made orthotics - they cost a packet but can help tremendously if you have sciatica. Again, it took some digging round to find someone local who could make these.

Also - do try and rest. I know it is frustrating to hear your day job makes it worse, but if you can't take sick leave easily (do think about it, if you can) then just lying down for 30 mins per day can really help. On the floor, with a towel under your head. Also I found alcohol helped now and again, and a good cry, chocolate and magazines. In the long run, it has all made me much less likely to overwork and overdo things generally - but I have a privileged life with a very secure job so I'm aware that may come easy to me.
Stay well, and let us know how you're doing.

You have my sympathies. I had no joy with amitryptiline either, but this worked quite well:

Morning: Rheumalgam (slow release anti-inflammatory), 30mg codeine phosphate.
Four hours later: 2 x 500mg paracetemol, 30 my codeine phosphate
Four hours later: ditto
Bedtime: ditto

Breakthrough pain: 5ml oromorph (bad days only)

Plus a bit of gentle yoga taught by a good teacher, and very gentle self-mobilisation.

If I had a pound for every idiot that pronounced swimming to be a miracle cure I'd be paying George Clooney to rub in my liniment of a night time.