Is there a point back pain is actually taken seriously?

[Cornettoninja]

I’m fed up! I’ve had lower back pain for years. It fluctuates between normal struggling to get up from a chair/carry/bend to full on can’t move on occasion. I can’t sit or stand for any length of time without getting stiff and being in pain. Sitting at work causes tailbone pain bizarrely - it is a shit chair though.

I’ve done physio, Pilates, sports massage and although they all provide temporary relief it’s all back to square one within hours. I’m tempted to go to a chiropractor or osteopath but I’m reluctant to shell out more cash without knowing exactly what the issue is but my GP isn’t convinced by my argument of knowing whether there is something identifiable going on would mean I could target a solution better so there’s no imaging they’ll let me have.

I exist on ibuprofen (am fairly concerned about my GI tract to be honest) and co- codamol and now I believe it’s causing issues that weren’t there before because my posture is wonky due to the pain; I now get sciatic hip type pains.

I raised the possibility of psoriatic arthritis especially since my skin psoriasis dramatically improved when I was pregnant and I had zero problems with my back whilst pregnant too but was brushed off.

I’m fed up and pissed off. I’ve had this about a year before my dd was born (she’s now almost 4) and it’s been really hard going with all the physical stuff that goes with having children. Is it really the case that nothing will ever be investigated or looked at? Is the constant pain really something I’m expected to just live with without even investigating to see if there could be other options?

just to rectify - my back problems started a year before I got pregnant - it was fine while I was pregnant!

Sorry to hear you’re in pain. I had a terrible back and yes it was taken seriously but it did take ages and unfortunately you do have to try everything before you get to the real investigations.

Mine was a while ago now but as far as I remember the order the nhs did things was

Pain killers - I ended up on strongest dose co-codemol, strongest dose naproxen and Prozac with top up paracetamol.

Physio - had to do a course and follow up for 3 months. It didn’t help at all so the physio referred me back to GP.

GP sent me for an X-ray and then referred me to a more qualified physio (I can’t remember his title but he could order MRI’s etc) and I had to do 6 months with him.

Again that didn’t help so he sent me for an MRI which confirmed that three of my discs were worn completely away.

He then recommended epidural injections. I had 3 over nine months and when these didn’t help I had three at once and had to wait 6 months to see if they helped.

When they didn’t help I got referred to a surgeon and ended up having spinal fusion surgery. Which sorted me out and I have been fine ever since but it really was a last resort.

I know people who have been on the same ‘journey’ and some have improved at each point so you can’t predict what will work for you - you do need to try everything. But you also need to keep going back when it doesn’t work. Stay in the system and make sure you move on the the next step if one doesn’t work.

By the end I literally couldn’t sit down for more than 5 minutes and was really really struggling. I think also if it comes and goes on seriousness they are more likely to stick with painkillers as it’s not classed as chronic

Good luck

Chiropractor was the only thing that worked for me. I tried nhs physio but it didn't work. It took a few months of seeing a chiropractor weekly to sort my back out. Now it's healed completely. I had the same issues as you, lower back pain, struggled getting up, bending down....

Thanks Chelsea26. It just frustrating to spend even more time on things that may or may not work rather than someone just having a look!

I’m also finding people’s patience is wearing thin with me. If I need a bit of help or leeway because it’s a particularly bad day then I don’t get the feeling anyone has any patience with me or feels they should support me when it’s just ‘cornettoninja going on about her back again’. I really don’t play on it and push myself probably more than I should in an effort to make sure I’m not pisstaking but it’s really hard. I feel either there’s a better way to deal with it or if I could say I had a definite issue with xyz things would just be easier all round.

@squiglet111 did you ever find out a cause for your pain? I’m a bit concerned about doing more harm than good. I don’t know how I’d cope if it got worse because I’d tried to fix it.

Unfortunately, even with a diagnosis there’s not loads that can be done. I’ve got a condition whereby my lower back is in pain the majority of the time. I have to move regularly because no position is comfortable for more than half hour. Heat pads are great as is strengthening the muscles with targeted exercise. Always carry a spare coat or similar, the cold makes us naturally tense up which makes the pain worst. Stop caring how people react. You’re entitled to help if you’re in pain.

A physio sent me for an MRI after refusing to treat me further and it spiralled from there. I had a 5hr op for cauda equina

Are you hyper mobile? I am and your pain sounds like mine. Locking legs back while standing causes me to seize, as does sitting in anything other than straight positions. Bending knees slightly when standing helps immensely

I have the same issue - mine is upper back and started when my twins were born and I was pumping. It’s painful all the time but then I have episodes where it completely seizes and I need a few days of diazepam. I’m already on morphine and naproxen for another condition.

Just about to start another course or physio.

Weirdly have had the tailbone issue for years but it’s not as bad as it was - it hurts when I’m sitting but then the pain explodes when I first stand up. It’s awful.

I hope you get some answers

Is your pain worse in the morning and eases during the day? Have you got any nail changes with your psoriasis or anything else that points to it being psoriatic arthritis?

Normally frankly there isn't much that can be done for back pain other than exercise and pain killers but if you do have psoriatic arthritis, and there is a high chance you have, then that can be treated.

NICE recommends that all patients having treatment for psoriasis should have an annual check for arthritis so it doesn't sound like you are getting that for starters.

Have a look at the leaflet below, go back and ask for a rheumatology referral and don't give up until you have got one

www.psoriasis-association.org.uk/media/InformationSheets/PSORIATIC_UPDATE.pdf

It did get better for me but not until I took it more seriously, didn’t push through the pain, did daily gently yoga and got a decent chair / desk arrangement at work.
As a matter of H&S your employer should assess provision at work.

@BetterEatCheese one physio did say that I was hyper mobile (which sounds faintly ridiculous if you knew me ) but I just don’t understand why nothing suggested works!

@Mumofboth, it’s not so much caring what people think it’s just a noticeable vibe of people offering less and less and an air of begrudgingly helping when asked (DP and work being the worst for this). It’s just not a nice feeling and I feel like they think I’m malingering.

@AnnaMagnani it does take a while to get going due to stiffness in the morning and I generally have to wait for the ibuprofen to kick in to have any meaningful chance of moving around. I don’t think the pain is necessarily worse though. I can’t turn over in bed without waking though.

I haven’t really looked into psoriatic arthritis aside from knowing it’s a ‘thing’ but I wanted to explore that to open up further management options. I’ve never had an arthritis review mentioned to me which will shock no one I’m sure!

I’ve not noticed anything with my nails but don’t really take much interest in them anyway really; what kind of things should I look out for?

For me, the things they worked were squats, sitting straight, bending knees, being very careful. Ibuprofen and paracetamol back to back for a couple of days if in very bad pain. Have you heard of EDS? (Joint hyper-mobility syndrome) - I'm wondering about this for myself right now

Being hypermobile means muscles don't support the skeleton so muscle strengthening exercises are essential, and avoid muscle stretching exercises

Ask for an mri and a referral. It will take forever but start the process. I have stenosis and various other back issues, I find daily yoga really helps. With back pain it's mostly guesswork without seeing an mri

Not being able to turn over in bed is also a big issue for me.

so muscle strengthening exercises are essential

See, I’ve been doing the physio exercises (had a six week course through work back when I started having problems) for years and Pilates for two years, you’d think they’d have made a difference by now! I’m really careful not to push too hard and stop if something feels ‘off’. I was thinking of getting one of those electric-shock muscle things to help strengthen any muscles I can’t effectively do myself without pain/causing myself injury.

I was warned off yoga for back pain after I practically crippled myself

I have heard of EDS but I don’t think I match the criteria personally.

Hi op with back
Pain you just have to keep pushing for referrals im afraid.
I was only taken seriously ( after 27 yrs of bad backs ) after slipping a disc. Managed to get GP to visit me at home after being in bed for 3 weeks unable to walk unaided and looking after a 5 month old. They took one look and called an ambulance. Cue surgery2 days later.
Then 7 yrs after that i was having problems walking again, went to GP she sent me for immediate MRI and surgeon had to do emergency surgery.
The problem is having a bad back makes you walk differently sit differently behave differently and places strain everywhere in your body which makes everything worse.
I've since had a hip replacement and due another ( at 52 )
So much of this could have been avoided if somebody had listened early on.
Keep on at medical professionals until somebody listens

@Cornettoninja if you read the leaflet it states clearly that if you have psoriasis you should see your GP straight away if you develop backache as it is a sign of psoriatic arthropathy and you should get a referral to rheumatology.

I'll have a look at the NICE Guideline as it says there is one as this isn't my field but from your story - you need to see a rheumatologist ASAP.

OK have found more information on the NHS website here:

www.nhs.uk/conditions/psoriatic-arthritis/

And here:

www.sign.ac.uk/assets/qrg121.pdf

The Scottish Guidelines are always v good and it makes clear that any patient presenting in General Practice with psoriasis, back pain and significant early morning stiffness should be referred to rheumatology straight away to prevent damage being done to their joints by the arthritis before treatment starts.

This sounds exactly like you so please go back to your GP and get referred. As you can see from both sites, there is a lot of treatment available for this to keep the arthritis under control, as it's an immune condition, so please make sure you are seen by rheumatology.

@AnnaMagnani thank you so much . I will definitely bring that info to my GP’s attention.

@AnnaMagnani, reading through your links had made me a bit teary to be honest, just to have someone take what I’m saying seriously is like a weight being lifted. Honestly I’m really grateful you took the time

You need a referral to rheumatology because you have psoriasis and joint pain.

It's in the nice guidelines so your Gp can't quibble with you.

I have PsA and AS.

I have back pain 12 years post spinal surgery for a slipped disc. I have seen everyone there is to see and been told its "nerve memory", over sensitive pain systems and all sorts.

A random stranger (in here actually) mentioned Dr John Sarno where I discovered Tension Myoneural Syndrome:

en.wikipedia.org/wiki/John_E._Sarno

and this led me to Dr Georgie Oldfield:

www.georgieoldfield.com/

And long story short my pain is vastly reduced and I take hardly any drugs. Its bizarre but true honest and I am not alone. You can get rid of chronic pain if you have this too. I've only had to shell out for 2 books (against from a million HCP visits in the past). Its not easy to keep up the positivity and I still do get tired and sore but for once my back is not stopping me and I hardly think about it unless its sore.

If I can help just one other person it will be worth it.