The Back Pain Emporium is Open For Business. Browsers Welcome. Thread 7

[MatildaTheCat]

For anyone experiencing back pain it can be a terrifying time. What is wrong? Who can help? How long will this last? We,on this thread are here to support you;offer empathy and help to navigate the almost impossible task of getting a diagnosis and the right treatment.We are not doctors but people who have trodden this path slowly and painfully. We also chat a LOT and welcome all newcomers. It is strictly non competetive regarding pain and no niggle is too minor.

Those who have long term back problems know that the best way to help manage back pain is to internet shop for shoes, bags, and back support devices. Those who are new to back pain, these are important lessons to learn. And here within this thread is where you will learn those lessons.

You will also find other helpful advice on pain management, different treatment options from hydrotherapy and physio to surgery, experiences of others navigating the big and scary medical world, both private and NHS (and abroad from the UK) too, as well as issues around work, being a parent while managing pain and disability, and the impact on the relationships around us. Not to mention the pain of dealing with claiming disablity benefits. .

Between us all, we have a huge wealth of knowledge and experience, and more than the practical advice, the jargon and information, we know what back pain is like, how much is affects everything around us, and sometimes, all we need is to have people listen who Get It.

We talk painkillers regularly,sometimes drink , have hot water bottles and wheat bags galore, and hold hands a lot. It's potentially all very Unmumsnetty as we do actually show some lovin' from time to time, although we Never Ever call each other hun.

If you have advice, need advice, need a hand to hold, want to do some shopping, then come in. We are friendly. We talk a lot. Come in, have a and say hello

Previous thread for anyone interested

Cauda Equina Syndrome Essential reading for new acute back pain sufferers.

I should mention that when the back is really acute,the person is really ill. I couldn't eat, lost a lot of weight, couldn't sleep properly, doped to the eyeballs and frantically scared. It does improve. Really 'bad' backs it is likely to be a long term problem. Not acute but there. It is possible to live well with this but the acute phase needs proper management.

If any doctor or health care person says to keep moving and try to carry on as normal tell them to Fuck Right Off. I wish I'd rested much more at the beginning. Not quite bed rest but certainly not that far off.

Pav, I would have done the whole thing before. I would do a small chunk now but sadly no more than 4-500m. Not enough really?

matilda that would be plent! That is what I was thinking, some of us might want to do it, and could manage 1-2 lengths, some, like you (maybe me one day), could do a few more (which is actually a lot). I have no idea how much I could do when I am able to, but absolutely don't think it would be more than 3-400m once I am fully recovered. But, we could get others with back pain involved, and that I think would be the best bit about it, it would not be about how far we went, but working collectively, to achieve something as a group that would mean a lot to us. We could do 3k easily if we all did a couple of lengths, get MN to support us, set up a FB page, make a big deal about it, about how collectively, people with chronic pain can achieve things and make a difference.

matilda oh god yes to telling people to fuck right off if they tell you to keep moving. When you have acute back pain that causes you to scream with every movement, why the fuck would you move? I remember keeping going, trying to be 'normal' for so so long, going to work hunched over unable to stand straight, I was literally bent over right angle style, until I eventually got sent home from work in tears, off for 5 weeks after being told not to come back until I was much better. And looking back, even during those 5 weeks wondered what the fuck I was doing. It did me no good whatsoever to 'keep going' and probably made those 5 weeks longer than they would have been if I had gone off sick earlier.

Once you get to semi-acute and then chronic, introducing a little bit of movement is good, but not 'normal' activity until you know what the hell is going on at the very least.

Thanks for the info Matilda and all the other ladies to - this is priceless, to be able to tall with people with first hand experience.

I don't work so that's one less thing to worry about thank goodness. WRT holidays, we are doing a fly/drive in the South of France. I'm delighted you are all so positive about travel and getting out and about!

Marcelene I actually broke out in a sweat reading your description of your DH this evening, I was like that not long ago and while it will pass, I only wish I had the capacity at the time to get seriously medicated to cope with the most acute phase. He sounds desperately unwell and may need something extra to get a handle on things. It's brutal. I really feel for him

Pavlov and Matilda thank you very much for the helpful replies. His pain is mainly on the right side of the back and down the leg, with some numbness and tingling in the foot. I have looked at the link, he doesn't have those symptoms but has noticed some slight prickles around the anus and nether areas. Has told GP about it.
Still can't find a position to sit or sleep comfortably, he is getting panicky about another night of no sleep. So am I actually, I was up all night with him last night but I work full time and I can't function with no sleep. Just hoping the diazepam will knock him out.

What dose of diazepam has he been prescribed? And how much does he weigh roughly? Unfortunately being in a panic will definitely make his pain worse because he can't relax. Can you tell us exactly what he has med wise and we might be able to advise? not a doctor but midwife for 25 years prior to all this

Ps going to bed very soon!

He has diazepam 5mg, co-codamol 30/500 and naproxen.

Sorry, I missed your post last night.i hope he coped. The diazepam dose could be increases if needed. I take 5mg when I need it and am a small woman. Also, no doctor will advise this but when it gets bad at night I've taken all my meds and then had a drink. Strictly not medical advice but I'm sure it's surprisingly common.

Hopefully the spasm will subside today but get further medical help if you need it.

Yes agree hols are still possible with a bit thought - I couldn't get to Cornwall in one anymore but can still make it to Lakes or Yorkshire or anywhere in Scotland with a few stops. The 4 hour flight to Malta was a bit much but 2 hours to Majorca completely doable. Sunbeds are a bugger too lol.

Sorry your hubby is so miserable with pain Marceline - nice of you to post for him! Back spasm is the worst as we mostly know but on the plus side it gets better fast and the only way is up. We get the misery and depression too and that too gets better as you see light at the end of the tunnel. We all think "oh no not again" when we are having a bad time but they get to be further apart and you cope better.

Wish I could join you Matilda but sadly years of learn to swim classes got me nowhere - still terrified!

Lol Pavlov I was the same many years ago - HR begged me to leave in the end - I am much kinder to myself now and sounds like you are too though not sure you will be ready for work in 3 weeks. Is that 3 months already up?

Hope you lovely lot have an ok day and lots of drugs!

Good morning and thank you Matilda. He took a double dose of diazepam last night as well as everything else and eventually collapsed in exhaustion. I think he slept for around 4 hours for which I am grateful, unfortunately the leg pain seems to be worse rather than better. I'm not even sure this is spasm, the last time this stage lasted a few weeks until he got the cortisone injection.

Matilda, do you think it's worth asking the GP for stronger painkillers? I have read other people use pain medication that seems quite a bit stronger but he hasn't been offered anything else. He seems not to be able to manage the pain so far with what he's got, and I'm worried about what this is doing to him.

Thank you Alli for the encouraging thought. He can't quite see the light at the end yet but it sounds like you've all been there!

Marcelene, if the leg pain is terrible then that is nerve pain and opiods like codeine or tramadol aren't terribly effective. Nerve drugs like amytriptiline and/ or gabapentin can work extremely well I take both. If it's a case of 'oh this has all happened before' definitely go back to the GP and state clearly what you want/ need. And some people do not respond to codeine, quite a few, so it's worth trying tramadol to see if that makes a difference.

Foot the time being, though, it's a case of waiting out the acute phase which is hell on earth. Oromorph is useful for topping up the codeine or tramadol if necessary. We have all, indeed been there unfortunately.

marceline is your DH taking 1 x 30/500 co-codemol? He can take 2 of those, so 60/1000 (max dose for both codeine and paracetamol) but as matilda said, leg pain is nerve pain and suggests sciatic or femoral nerve is either impinged or inflamed. It's really useful to be able to go to the doctor and ask for what you need instead of relying on them to tell you what is needed. I found I got somewhere much faster when I asked for further investigations, to see a physio, a neurosurgeon etc than when I went in saying 'help, don't know what's going on'.

Also, two other points in case you have not absorbed some of the other posts to other people. First is, as he is quite immobile and is taking codeine, it's worth him taking some movicol or other med to help his bowels keep moving as codeine, lack of exercise and lack of food intake (which might happen if he is in pain, taking meds can reduce appetite etc) slow down the digestive system and constipation is very common, best to avoid that straight away as it can make the back pain worse. Second thing is, he should ask his GP for a stomach protector such as Omeprazole as he is taking regular Naproxen, if he does not have this prescribed already, to reduce the risk of stomach ulcers (NSAID meds increase the acid in the stomach, which is why it's also important to take with food, although that can be as simple as half a slice of toast or some yoghurt or a glass of milk). I am amazed at how many GPs prescribe long term use of NSAIDS without automatically providing a stomach protector.

I slept shockingly last night due to another night of having a child hot water bottle in bed with me, and another one on the other side this time. I slept in an awkward position as DS (5) kept pawing at me, curling into me, over me, and also was shaking with fever at one point so I stayed awake to keep an eye on him, kept moving to get his drink, give him medicine etc. Woke this morning with killer leg and back pain, but leg pain has eased since getting up and stretching it out by moving a little. Now mostly have leg pain.

pavlov/matilda You're giving great advice here. I would agree to ask the GP specifically for what your husband needs. I also got drug (lyrica) for the nerve pain but only got that when I went as far as A&E. My GP never even mentioned such an option existed. I should really have had it a good month beforehand Similarly, I didn't realise I should have had something to protect my stomach until the good ladies here mentioned it.

Marceline I guess the lesson is to be specific and assertive when dealing with the GP. It could spare your DH a lot of unnecessary pain.

On a separate note, I have a guy in fixing my dishwasher this morning who has had a microdiscectomy on two separate discs. Turns out he went to the same neurosurgeon that I have in mind myself to check my mri. He had only good things to say about him so happy days! Small world.

Hope your pain eases through the day Pavlov

I meant to say I have mostly back pain, not leg pain should proofread my words! It's not eased any further than since moving about to ease it, but, I am not resting as much as I would like as DD is off today along with DS, and her temp has just shot up, so I am running around (ok, not running!) checking temps, getting water, something to eat, meds, sick bowls, putting on a film, cuddles etc. DS has been in tears because he is upset he gave DD her bug, and really is tearful about everything at the moment. I am such a bad mummy as I thought there was a significant element of DS not wanting to go to school because her brother was off, although I had some doubts last night as she was proper grumpy and over dramatic in the way she does when she is about to come down with something, but, her mood and temp were fine this morning and she and her brother were larking about happily despite her only having a small dose of calpol (as we were not convinced). Poor little love, she is now feeling proper rotten and has 38.5 temp.

Schmeegle that's good news that your plumber guy has had surgery with the same guy. Reputation is a really good indicator (or, in some cases lack of reputation). My second surgery, from which I am currently recovering from was a as a result of a second opinion from a reputable surgeon, who was recommended by two separate people here. Do you know how long until you have the formal results back form the MRI?

Spunea like you're having a horrendous day Pavlov, I am in awe of you. Thank you again for your sound advice. Dh has omeprazole, it was given as a matter of course, which is good, he's also been taking laxatives as he is aware of the side effects from last time. He is waiting from a call back from GP, I have told him what to ask for and to be specific. Fingers crossed.

That should start with 'Sounds like'. Autocorrect is doing my head in!

Gotta love autocorrect, it recognises words that don't even exist over sensible options for words!

The biggest problem is that the children have sofa each so I can't lie down easily I have my orders for lunch. Ds wants porridge with honey in, and a plan cheese sandwich. DD wants a toasted cheese, tomato and onion sandwich, with american mustard and some mayo. Nothing fancy then I have been waiting for DH to come home with soup for lunch, but he's taking his time so I am gonna have to just do what they've ordered

and good that your DH has omeprazole and laxatives. IMO much better to deal with constipation before it becomes a problem.

Bad news, GP has refused to prescribe anything else at the moment, said that the next option would be morphine and he is not about to do that. He wants dh to give the drugs he has a chance to work. Seems that the other treatment options Matilda mentioned have not even been considered. Unfortunately dh was not very specific in his request. He usually is very good with this kind of stuff but he's really struggling at the moment and I'm at work. Oh well, we'll have to try again tomorrow. But most likely another night from hell...

Morphine is not a great med for nerve pain really. I am surprised GP has not offered nerve meds. There are 3 main ones offered - gabapentin is the go-to usually as it's the cheapest, then amytriptiline (sometimes this is offered first), then if they don't work, pregabalin, which is the most expensive, and they are usually offered when there is leg pain/nerve pain. If you/he have the time/inclination/energy, it might be worth going to look for the local PCT/CCG guidance for treatment/investigation of lumbar back pain, to give him an idea of the usual routes followed, as they are normally a standard route. So first is low level opiates/NSAIDs, then higher level opiates/NSAIDS/muscle relaxants, then nerve meds are added accordingly. I'll see if NICE have a guidance sheet for you to look at.

It is still early days for him. I know that doesn't help him right now going through it as he is, but this acute phase takes a little while to subside, and then hopefully he can focus a bit better on asking for the nerve meds. This acute phase is the pits as it seems to go on forever, and the end doesn't seem to come quickly. That is not to say he won't need further treatment longer term.

Sarah Keys has a good book that might be worth a read too - Back Suffers' Bible.

this gives a bit of info about the treatment routes hcp should consider.

Marceline I agree with the advice above. The GP seems to have skipped the nerve med stage, even if it is early in the case of your DH. Personally, once I got over the first day or two of feeling drunk on pregabalin (lyrica) I found it really helpful.

I also must admit that during the acute phase, my wonderful DM gave me massive hot whiskeys on one or two nights that pretty much knocked me out. God I love that woman

An update on my hunt for a neuro referral - I enquired with the secretary of the doctor recommended to me and the wait list for his private practice is 5 weeks! I have another recommendation so will check out that wait list this afternoon.