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Original poster

Chronic pain - how do you cope?

107 replies

Grockle · 13/03/2012 20:50

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.

OP posts:
Original poster
Grockle · 18/03/2012 19:58

Thanks for all the suggestions. It's not excruciating, just relentless and waring. I want to do yoga but I don't know how to fit it in - I work FT and am a lone parent. I need to do some juggling so I can start. My GP won't sign me off work so I have to keep going. Will continue to amitripyline til I see him next and then see what he says. He's redoing my blood tests since the one that indicates inflammation came back a bit higher than it should have. I'm just fed up.

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BoffinMum · 18/03/2012 20:49

It sounds like your GP isn't all that sympathetic - is there another one you could see? In terms of yoga, it might be good to get a teacher to come around to your house to teach you the basics, perhaps, for a few sessions?

Reenypip · 18/03/2012 20:52

I can't do yoga or Pilates as I don't have much feeling in my legs and in a wheelchair.
Maybe I should create something that only involves the upper body. I was even thinking of creating my own exercise video / dvd for disabled people.

Hmmm what could I call it?

Reenypip · 18/03/2012 20:56

Avenged, surgery could be any day now just waiting for my call.

Anyone else tried the relatively new pain med palexia?

I'm thinking of trying it on top of what I already take. As its new, it's not on my safe list of drugs (another condition of many of mine, is porphyria). So a little apprehensive incase sets off an attack.

BoffinMum · 19/03/2012 00:05

You could try - I was wheelchair bound and it did me a bit of good. You just do the bits you can do.

lookbutdonttouch · 19/03/2012 10:01

I am a bit hypermobile so yoga is out for me, I do not need anything that makes me any more stretchy. Pilates all the way! Swimming is the devil's work.

Def do the bits you can, but start slowly is my recommendation.

I spent the weekend feeling great and clearly overdid it. I am now on every pill in my arsenal and wearing my SI belt as back up so I can work. Trying to avoid that 'pop' or the 'slow slide' of the discs. Dont want any more time off work. Crutches in the car just in case too.

The SI belt is so special, makes wardrobe choices fun as they give me a flat bit across the bum and then it all splurges above and below - hmm, nice.

Sounds petty in the face of some of your way more serious problems but it is the little things that can get you sometimes.

Original poster
Grockle · 19/03/2012 17:39

I didn't know you weren't meant to do yoga if you are hypermobile - I've done it lots in the past Confused

My back is causing me no end of problems atm - the pain is horrible and I feel stiff and sort of hobble which probably won't help either. If I sit, it's not so bad but standing and walking brings tears to my eyes. I'm a miserable old moany thing these days.

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lookbutdonttouch · 19/03/2012 19:30

As I was understood it yoga made you more bendy while Pilates is all about strength and the core. If you are hypermobile then its core strength you need.

I did ballet and all sorts for years, never realised the damage I was doing.

It is horrid. I do understand. Sometimes I just want to stop and give up.

Frontpaw · 19/03/2012 19:51

Pilates does help with the strengthening. Yoga just hurts if you suffer from back problems. I used to be able to bend like a pretzel - which I thought was a good thing.

I now worry about the man in the circul who used to fold himself through a barrel.

Original poster
Grockle · 19/03/2012 19:53

Yes, I used to be like a pretzel too. I do need pilates, I do. I have no core strength - which is why I have back problems. I must see if I can sort something out.

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BoffinMum · 19/03/2012 20:04

Seriously, both are good, Pilates and Yoga. Both promote core strength. In yoga you are supposed to be working within your own capabilities, and the point is not to become more stretchy, it's about achieving control and poise and avoiding damage.

lookbutdonttouch · 19/03/2012 20:39

Oddly despite my back issues, I can still bend like a pretzel. Which means the docs say I must be fine. My core strength has def up and gone.

Boffinmum, perhaps I had a bad experience with yoga. It did not help and my Osteo made me promise not to go again but to try Pilates instead.

Avenged · 19/03/2012 21:29

Hi Reeny. I hope you get that call soon and make a good recovery. It would be great if you were to keep us all up to date about how your operation goes.

val4 · 21/03/2012 18:57

Hi there,li

I also attend chronic pain doctor. I have various problems generally arrising from previous heart,thoracic and neck surgery. My doc thinks I have problems with intercostal muscles and also have scar tissue build up in neck and chest.Ihave had previous surgery for disc problem and surgery for shoulder problems. I am also on amitripolene and zanaflex at night and tramadol during the day. I still have days when the pain breaks through and I feel misearble and useless. I have 4 children and when i am bad I need to take more meds and take to bed. I hate doing this as my chidren range from 5 to 12 and it breaks my heart that they know that some days there mom needs to stay in bed (i have a chidminder who takes over). At my last visit to the pain doc he has suggested that I get a lYDOCAINE infusion, which he says should give general pain relief that could last for weeks! I am going in to hospital for this procedure, in 2 weeks so hopefully it will help and stop all the flare ups of pain.It is really difficult living with chronic pain as I have good days and bad days. when I am good i tend to overdo things as i am so relieved to feel "normal", and then I pay for it for tthe next few days. Chronic pain is not visible to outsiders and i tend to keep it from most except close family and close friends. Sorry for going on so much but I would love to know it any of you have experience of Lydocaine infusions Thank you.And i hope that you all get relief and a break from your pain.

Original poster
Grockle · 21/03/2012 21:58

Oh Val, that sounds awful Sad

I've had a heatpad stuck on all day and my back has been ok. Now it's come off, I'm in pain so I really think the heat pads help. But they're so expensive - if I use one every day, it'll cost a fortune

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Reenypip · 22/03/2012 15:50

Hi grockle,
Do you find heat packs help your back more than cold/ice packs?
I'm the opposite, I find cold/Ice packs help it more for my spine pain. But warm packs when I get pain in hands/shoulder.

lookbutdonttouch · 22/03/2012 15:57

Hi

Reeny can I just say they are keeping you waiting far too long and you have been so patient. I really hope you get the call you want soon.

I find heat helps with the pain the most, heat packs thing I keep for if I am going somewhere sort of special and if I am in lots of pain iyswim. At work or at home I stick to a good old hot water bottle or a microwave thing. The heat things you stick to you that are costly are for special occasions!

On the other hand if it has 'just' gone / popped then I do cold first, to get the inflammation to calm a bit first.

Original poster
Grockle · 22/03/2012 17:33

I haven't tried ice packs but the heat works wonderfully. I use a heated blanket and hot water bottles at home but can't do that at work so I need to find a way to use heat whilst I am out and about but that does not cost a small fortune.

Maybe I'll try some peas later.

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Original poster
Grockle · 25/03/2012 19:15

I have now burnt my back on a hot water bottle Blush

On the plus side, the pain disappeared while I was using it. It was SO hot and lovely and it all seemed fine til I realised the following morning that it was blistered Shock

So, now I have burns AND back pain Angry which I am trying to relieve with a hot water bottle

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lookbutdonttouch · 25/03/2012 19:49

Oh no! I have had big red marks from a hot water bottle but never burnt!

Oh poor you, I do hope it gets better soon.

When it does, try a (slightly cooler) hot water bottle at work. Much cheaper than heat packs. I have one of those tiny ones in the office. Guess it depends on what you do. ....

Original poster
Grockle · 25/03/2012 20:02

I don't have a sitting down job so can't really use a hot water bottle. Need to figure something out because it's a nice, cheap, drug-free solution

OP posts:
Reenypip · 25/03/2012 20:33

Grockle, I'm sure there are self warming patches that can stick to the skin? Maybe could give them a try if on your feet and can't use hot water bottle

Original poster
Grockle · 25/03/2012 20:48

You can get them, Reeny, they just cost quite a lot if using every day. I do have some but try to ration them, otherwise it costs £40+ a month. I'd gladly pay that to not be in pain but money is tight

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lookbutdonttouch · 26/03/2012 09:25

Hmmm, I thought that when I posted it, prob only works if you have a job when you can sit.

How about a hot water bottle with a big velcro belt to hold it in place? You will have to wear floaty outfits over the top......!!

BoffinMum · 26/03/2012 15:36

Hospital grade TENS machine might be an alternative to a hot water hottle, but you have to use different settings from in labour - pain clinic could advise?