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.

The rheumatologist looked at my back & said its a herniated disc but no need for an MRI. So no, not had one. Sounds scary for you. Have you made a complete recovery now?

Maybe I should try getting this looked at privately - I wouldn't know where to start.

Thank you. I'm going to Google private places near here. No idea what to look for but I'm wincing with pain and I'm miserable. How did you find yours? I'm exhausted from trying to carry on. I will be very clear next time I see my GP that I cannot carry on like this. Yesterday, I just sat there looking glum. I think he wants to get rid of me before I cry!

I've just spoken to my local Nuffied place and they need a referral from my GP

If they could have done it tomorrow I'd gladly have paid the £477 they were asking. I get pins & needles & a numb bum if I sit in a funny position but it resolves as soon as I move about. Everyone gets that though, dont they?

Right, I have an appointment with a chiropractor tomorrow. I have no idea if it's the right thing to do but I can't figure out what else to try and I need to feel like I'm being proactive.

Hi Grockle,
If you can face it, I'd advise going back to the GP and asking directly about a pain management referral. If the symptoms of numbness are new or you haven't mentioned them to him before, definitely worth telling him as that may be significant. If you then did get a referral to the pain clinic, normally that would mean you'd see a Consultant for a medical review, during which they would be looking out for any "red flag" symptoms that point to something that needs further investigation / potential surgery. If you don't have those "flags" then you may not need scans etc but they can review your meds and some pain clinics offer injections, depending on the type of pain - there are a few different options you can consider, and then you should be able to discuss having help with non-medical management options too.

And just because tests have not shown anything does not mean there is "nothing wrong" - you have pain, which is definitely not nothing - and you deserve help. It is so frustrating that finding the right help is not straightforward but hang in there and please consider going back to your GP!

I'm going back in 4 weeks but will make an appointment to see him sooner if this doesn't subside in the next few days.

I didn't mention the numbness because I thought everyone got it when sitting and it didn't occur to me to mention it. My GP tends not to ask questions which means if I don't tell him everything, he doesn't know. And often, I don't know to tell him things because they don't seem relevant or I forget as I feel like such a nuisance.

Thank you all for the support.

Thank you, tough. That sounds scary but, having read the description, it doesn't sound like me. I'm glad they saw to you quickly once they worked out what it was.

I have now pinned all my hopes on the chiropractor having all the answers tomorrow

Update: Spent 2 hours with chiropractor. Back next week for x-rays & treatment but I feel much more hopeful. If nothing else, at least he listened, was sympathetic and didn't just dismiss me with a handful of prescription meds that won't help.

If I can solve all this with exercise & occasional heat, I'll be very happy. Especially since all the drugs I've tried haven't done a thing (except help me sleep - I miss the amitriptyline).

Next thing is to solve the tinnitus problem.

Hi grockle, you say you get the numbness and pins and needles when sit in a funny position?
All my life (even before my spinal troubles) if I sat awkwardly, or leaned / in a certain way I got pins and needles/ numbness etc.

Hope you get it sorted!

I haven't been on because I've been in loads of pain, a severe flare up.
I'm just hoping this spinal op will help, even though they have said it may not take any pain away at all.
Im waiting to see neurologist too about spinal cord stimulator and intracathetal morphine pump.
I need to cry :-(
Always putting on a front to people and smiling even though I'm gritting my teeth in agony

Hope you are ok Reeny. And everyone else.

I saw the chiropractor and had x-rays. Apparently my pelvis is twisted (not uncommon) and I may have a prolapsed disc right at the bottom. So, I'm having massage therapy & physio for a couple of weeks to see if that loosens the muscles & eases the pain. I also have weird ribs but that's irrelevant!

Hi Grockle.

I have hypermobility, too. The thing that helps me most is having 8 paracetamol a day, every day - either as plain paracetamol or co-codamol, depending on my underlying pain levels. Amitriptyline does nothing for my day to day pain, but it does help me sleep through it. I was told i could take Gabapentin if the amitriptyline was no good and my sister has done well on that, though has now been changed over to pregabalin. I also find naproxen handy to have to hand to deal with the regular pulls and strains I suffer with - I find that particular useful for nipping neck pain in the bud.

Nothing is 100% effective, though. I find sitting in the same position for long periods more pain inducing than being active, but i also find things like holding a paintbrush or ironing painful. I find that the key is not to do any one thing for any length of time, which i know would be difficult if I had to get to work every day.

I have been given some really useful exercises my my physio and found hydrotherapy worked wonders for my lower back and unknotted my hips and buttocks - a lot of my pain is caused my muscle tension. She also referred me to a "community" pain clinic which turned out to be at the other side of the county (huge rural county), difficult to access by public transport and clashing with the time I needed to pick the boys up from school. Bit crap, really. She also gave me the chance to try out a TENS machine, which i find useful for the burning pains in my knees.

If you're not getting any physio input, i can definitely recommend it.

Hi all,

I'm suffering from thoracic outlet syndrome and have been off work since November 2010. had surgery in September 2011, then emergency lung surgery due to an error two weeks later. The condition has loads of nerve involvement as well as vascular compression.

I'm hoping to get back to work in June. I'm on big doses of gabapentin and nortriplyn but still have break through pain I'm thinking that a pain clinic referral might be good for me. I haven't got over having a chronic condition yet. My family thought I might die in September. Its all still there.....

Pantaloons - apart from the impossible location and timing of the pain clinic (and the fact that it was held at the elderly day care centre of the hospital, which I ofund, rightly or wrongly, quite insulting) I was quite infuriated by the questionnaires i got from the pain clinic. Yes, I am taking my prescribed medication and no, I am no more depressed than you would expect of someone who deals with chronic pain and 2 boys with ASD, one of them being very difficult and, to use a fab US word, ornery. And no thanks to the group sessions I would be offered if I passed whatever test i was supposed to pass for entry into the world of pain management.

I am tempted to try out osteopathy, which others have mentioned - I click, crack and creak a lot and whilst a lot of clicks have that internal queasy quality to them and some are downright painful, occasionally I can click in a way that brings so much relief and helps me to relax the muscles around a painful joint quite naturally. It might be expensive, but I could do with a periodic cracking back into shape.

Thank you all. The chiropractor does manipulation (clicking). I find the same - that I can move in a certain way and my back clicks or crunches and I have a sudden relief from the aching & sciatic pain. All my joints click though so I guess my back is no different. It'll be interesting to see if it helps in the long term. I'm not sleeping well and although the amitriptyline didn't help with the pain it really helped me sleep & I miss it!

Grockle - I have nortriptilyne in place of amytriptyline from my GP. I found it much better for pain - and I also sleep much better through the pain with it - 8 hrs a night.

There's a large private clinic in our nearest city with osteopath, chiro and various practitioners.

Sounds like you got more benefit from the trippy pills than you thought, grockle - the sleep really is restorative (I call them trippy pills because of the wild dreams i have on them!)