Back Again! Back Pain Support Thread

[PavlovtheCat]

Only right I start the new one seeing as I was responsible for the last one ending so abruptly !

This is a support thread for people with back pain (that does not even cover the description of hell that back pain causes). It's for all types of back pain, for long term posters with chronic pain (including those on the upwards journey to recover), short term advice through tough acute episodes and all the in betweens.

We moan, winge, share successes, guide each other and hand hold through the maize of a million medical routes and options, treatments, investigations. We internet shop as a form of pain relief, drink wine, take strong painkillers, eat cake and we go through lots of heat packs!

We don't always have the answers but we do have a lot to say about it all

Here are the links to our previous threads:

www.mumsnet.com/Talk/general_health/1871592-The-Back-Story
www.mumsnet.com/Talk/general_health/1992406-The-Back-Story-Continues
www.mumsnet.com/Talk/general_health/2023274-More-Terrible-Back-Stories

Oh bummer that you got more to do! I can probably help with the caffeine related one I drink so much of it i am probably half made of the stuff. The drinks part of all that sounds good My bp is really stable too, similar to yours, goes down to about 110/60, was steady throughout both pg though, even when in active labour and actually giving birth, although was 110/55 with ds. apart from when midwife took it just after an almighty argument with my sister, and it had rocketed to something so high the midwife came back later to recheck it, and again the next day! it had reduced again fine though.

Not sure what's going on with DS. He is 4.5. Quite a sudden extremeness of being demanding, i mean he has always been prone to tantrums where dd never was, but not as often as now. He wakes up and is hungry, but won't eat before having a meltdown, he is always asking for things he can't have and knows he can't have, like toy story for the millionth time, sweets before dinner, sweets after dinner when he had some after lunch, not wanting the pudding offered, then wanting it in the front room, then in his bedroom. Involving some kicking (not with any force, just seems to be frustration), and, worst, he keeps reverting back to baby speak. He says 'me want dinky' 'me hungy' 'get me dinky now!' and does it in a baby voice. He also wants cuddles more, won't leave me alone for 2 mins, but not necessarily wanting happy cuddles, but wanting to paw at me while making some demand I can't give him. He is also acting quite jealously of DD, won't let me cuddle her without crying, or trying to climb on top of us. This evening, after he got up 5 times at least and DD was having her story, I tucked him in, said I was going to lay and cuddle DD for 5 mins, then I would come in for a 5 min cuddle with him. He spent the entire time wailing that I was taking too long. He is rude a lot, calls his sister horrible names, says he does't like her etc too, makes me so upset to hear him speak like that to her.

He is about to start school in september, I wonder if there is some anxiety there, as it's been talked about a lot over the last couple of weeks. He also is good friends with a boy who talks in baby talk to his parents when he is trying to get his own way so I wonder if he copies him. This boy plays more roughly than DD/DS do, has toy guns and whatnot, and his play is definitely more fighting and stuff, and he is much bigger size wise than DS. DH thinks his behaviour is often worse when he has been around this boy (in his class at preschool and going to school with him too). I don't necessarily think the boy is a bad influence, or means to be, but DS appears to want to please him, gets upset if we don't let him go dressed as a cowboy or in his batman pjs as 'xx wants to see them, he has not seen them!'

well, I got that out right?!

and meal times are a bloody nightmare, either it's tonight's issue with pudding, yesterday he wouldn't try the fish or potatoes, even though fish pie is one his fave foods, they were not together, they look yucky, smell yucky, and he refused to eat a bite. DH took it personally as he had spent a while cooking it. He is not a great eater at the best of times but has been improving slowly over the last year, thought we had cracked it, but he has gone backwards with his eating (sometimes, not always, went out for brekky yesterday, he ate lots, after having had it at home before we went out!, yet says he is hungry all the time so maybe we just need to drip feed him constantly, maybe that's it. growing.

DD is growing. She is eating and eating and eating and eating. But, she recognises the hunger feeling so maybe DS doesn't recognise it so well, and where DD eats mostly anything given to her, including fruit as a snack, DS refuses most things we offer him at the moment.

Quick update from me, I saw the GP today and she prescribed diazepam and cocodamol. She says it is a muscle spasm and will get better over a few days. The diazepam is for a relaxant and the other a painkiller. It has been slightly better today. Good luck to all of you and thank you for all the help and advice.

ah my two are same- dd eats most of what is offered, at least tries, but I get a small push with back of ds's hand on things to mean he doesnt want it, all the time! he is 4.5 too, I think around 3 they develop their self so much more, and they do a massive overhaul of what they like /dont like whereas before they went along , now everything is scrutinised "do i like this?" and sometimes it gets a no when it used to be a yes- even dependant on mood. things he used to like are popping off the list and new things popping on, cant keep up!
tricky when i cant even ask what he wants- but im starting to show pictures more to see if he can show me preferences and when we go shopping me an dh will usually let him have something if he proffers it to us- encouraging the communication. today it was sunblest white finger rolls- and he ate 2 at dinner so im all for that
it is sooooo annoying when they dont try stuff- but im trying to not even watch- just offer a range of foods and run!
glad you are feeling bit better greylady, that is good news from the doc, dont start doing things too soo in case it twinges again

Grey lady. I had pretty bad muscle spasms all the way up my back and neck. Robaxin worked a treat for me.

Hahaha! At your wicked lies, not the useless massage. Every cloud, though...

I get a great massage which really helps but only at the time. No real lasting effect at all. Still go, though because it's lovely.

Did the physio also advise some internet shopping whilst you rested?

Nice one, Tough! Shame about the massage though. You'd expect deep tissue massage to be a bit more than gentle patting!

Tough, you're a fibber after my own heart (at times).

Poo to crap massage pats though. Was he frightened of hurting you? Bizarre.

Hello- can I join you all on here? I have an ongoing back problem- started after my DS was dragged into the world in a rough, but successful CS. Since then, have had almost continuous lower back pain. Managed it for about 2 years by going to the osteo (lots) and almost emptying my bank a/c to them! In the last 2 years I have started seeing my GP. I have had one round of physio, and about to start another. Currently my back is unhappy, as busted my calf muscle at the weekend, which has thrown my posture out, leading to a limp and constant lower back ache. The GP today has had a prod, and determined that I need to see the physio again. He thinks it's a facet joint/sacriliac joint problem. My range of motion is fine side to side, but very poor front to back. I have been given 500mg of Naproxen. I have no idea if I should be pushing for further investigations. To date I've just kind of sucked it up, and have kept as active as possible, despite being in a fair amount of continuous pain- but this morning burst into tears about feeling continuously rubbish. I've recently signed up for a pilates class- hoping for miracles.

Forgot- that GP has also added in some nerve trapping stuff, as my thighs feel sore down the fronts, and down sides of hips too. My mother has determined that if I was a horse they would have put me down by now!

Tough, I've felt like that (what was the point of having dragged my sorry arse to one or another appointment and miss out on x, y or rest.
Bummer!

Winner, welcome! Sounds like you've suffered enough. DO push for further investigations!

Winner - Try pushing for an MRI. I have a similar experience of endless osteopath/physio, mostly private and expensive, getting me nowhere. My route to an MRI was via the pain clinic. I have slipped (herniated) disc, this can cause symptoms of sacroiliac joint dysfunction - which I thought I had. Pregnancy can make a minor herniation much worse and often we ignore pain in pregnancy as we are told it's normal and will go away after the birth. I now wish I'd pushed for the MRI earlier as suggested early on by one physio, or gone private if they refused.

Ok a me post now, I'm a bit of a mess which is made worse by it being half term and having a cold and cough.

I asked for a referral for physio. GP referred me to an acute service run by private contractors. Because I had seen them before they can't see me again, even though last time was for post pregnancy pain and now is for a slipped disc. The GP who referred me first time told me the only physio option was this private service where I get four sessions and then nothing else because that is the way it is in the NHS. I was sobbing hysterically during this appointment when she also refused to send me for an MRI or any other potential service to help me, except the pain clinic which I asked for, she didn't suggest it.

I was told by the private clinic that there is a chronic service because they have a box to tick if I don't meet the criteria which explains this. So the GP lied outright about the availability of physio in the area. She also refused an MRI without examining me declaring only people who might need surgery get MRIs and I don't need surgery. I haven't seen or spoken to this GP since.

I called the Dr surgery to ask for a copy of my report so I could see a private physio. The receptionists couldn't handle this request so got the GP who made the neurosurgery referral to call me, she is very new and junior. When she called I asked her about the availability of physio aside from the four sessions. She confirmed longer term physio is available and I'm now being referred there. The GP who lied to me about this is a partner in the surgery so should have known this service was available. I'm gutted she misled me on this. Is this a ground for a complaint? Should I do it or is it not worth the stress and likelihood that they will just lie about it?

On top of that, the junior GP dropped into the conversation that surgery is very unlikely because they don't often do surgery. How likely is this to be true considering all the warnings about CE and not being allowed to lift the kids, bend down or having to take laxatives so I don't strain on the loo? She kept emphasising I'd be seen quickly because she marked it urgent. She now thinks it's not urgent as the wait time was six weeks for the surgeon but didn't know whether the surgeon had seen my MRI scan - Is this likely and it is likely I will need to ensure the surgeon is sent a copy of the scan (this is mentioned in the letter but I assumed they'd already have requested a copy).

Anyway if surgery is not a likely outcome I am still going to be suffering, having to take these drugs and being at risk of CE. I'm going to refuse any facet joint injections - not worth the risk but I may consider an SI one as that is where I feel the highest amount of pain. Plus are injections going to stop the other symptoms, the muscle tension, spasms and bladder issues? I'm also confused about the direct referral to a surgeon without trying something else first, I've had no treatment since diagnosis except extra pain relief.

The other issue is whether I will get the truth out of the surgeon - being NHS are they likely to avoid surgery due to cost. If I go private will the answer likely be different? I've found a private surgeon near family (so far away enough so the surgeons don't play golf together as someone mentioned earlier) with surgery costing around £6k. But are they more likely to say yes to surgery because they get my money? I only want surgery if I need it and it will help improve things. My husband keeps suggesting taking to his sister's friend (don't get on with his sister) who is a neurosurgeon but I don't have a copy of the MRI to show him anyway.

Help, I don't know who to trust and I know you guys have a better idea and more experience in some cases :(

Sorry for the rambling mess, I'm driving myself a bit mad. I'm trying to book a physio so I can assess what is and isn't potentially part of the disc and so I can explain this better when I see the surgeon. I've started wrong a detailed description of all my symptoms to get it all clear. It would be good to check the pelvis as that was previous reported as pulling up on one side and my right leg was twisted due to the muscles contracting.

Ok.

GP number one is an idiot and yes, I would consider a complaint but the best you could hope for would be an apology and it might be awkward to continue at that practice.

Since you are getting mixed messages about physio I would consider contacting the Practice Manager and state your concerns and ask for clarification of the local provision. He/she will be obliged to find out and address your concerns.

Now, this is the bit that is making me really furious. NOBODY other than the neurosurgeon knows whether you are a suitable candidate for surgery. Your GPs know absolutely fuck all nothing about it. They are not trained in the speciality and have absolutely no business telling you any of this shit. Please listen no more to them. When you finally see the surgeon he (they mostly seem to be he) will look at the scan, examine you and discuss your options. He may suggest surgery and explain the risks and benefits. He might refer you for injections and review you Ina few months. He might suggest you change meds....you see? None of us can predict what he will think.

Another thing is really disgraceful is the GP telling you how fast you will be seen etc. again, entirely beyond their control or remit.

I'm so sorry you've had to put up with this crap. You have been poorly treated. Ask the Practice Manager also for a copy of the local Spinal Care Pathway. See if it has been followed.

I wish you the strength to get through the next few weeks. In your position I think I would be tempted to try to see the consultant privately and then transfer back to the NHS for treatment. It's probably possible, I've done it quite a lot to avoid the waiting for clinic appointments.

Hope that helps. In short ignore your stupid GPs opinions and wait for the opinion of the person trained to give it. xxx

queen completely agree with matilda the only person who can make any decisions about suitability for surgery, risks, options, timescales for surgery, risks etc is the neurosurgeon himself. no-one else is qualified in any capacity to make a surgical decision.

The only other person who has some semblance of whether you fit the criteria to see the neurosurgeon (and again, not if surgery is suitable, but if you meet the criteria to be considered) is the spinal pathway physio or other trained professional who works closely with the neurosurgeon. but even then you can challenge that decision and go straight to the surgeon. There are things the GP must look for and consider referral upwards if they exist - leg pain, no improvement after 6 weeks and with the usual treatment of painkillers, physio, back pain specialist treatment such as osteo etc. has been attempted, and that referral upwards should be to go to the team that looks at referral to neurosurgery where MRIs etc are done, or directly to neurosurgery if MRIs etc are already completed. The chronic pain clinic should not be considered until other options have been considered, including surgery, unless it runs alongside it. It is not meant to be a replacement service for proper intervention to repair damage.

I have had an MRI scan nearly a year ago. My pain had worsened and spread to Si joint. I am being referred to a surgeon. Will he request a more up to date MRI ? Should I ask for a newer MRI?

he will probably need an up to date one but he can request one himself if he needs it. my neuro said, prior to my surgery when we discussed potential for me to put it on hold, that he would need a new MRI if surgery was considered after a year, and not if it was considered within a year, or the last MRI, to be sure what was going on was the same thing causing pain. I would think that would apply to most neurosurgeon views re MRI?

My pain levels have reduced significantly for the last just under a week. I am very impressed. I have now got increased stinging, leg pain and it is very specific from my back and down my right leg, so while I know I am feeling good, I know for sure there is something there, and that it is likely disc related somehow. Sounds awful to appreciate pain, but feels good for some isolated clear and obvious pain and not the all encompassing pain that has gripped me for such a long time. It is increasing slowly, and I suspect that the increased stinging means it's on it's way to how it was again, but, for whatever reason, the relief has been welcome. I have had a couple of days not using the crutch, or only taking it as a precaution in case I trip/it changes it's mind. I even went to see Maleficent yesterday and sat for almost 1.5hrs with not too much stiffness (probably why I have increased pain today).

I have just bought Birkenstock toe-post sandals (can't remember that proper name). OMG. Amazing. I was unsure at first as they were quite rigid, very moulded, and I have weird gaps between my big and second toes and it seems to widen them a little so felt unsure if that would be a problem. But, after a couple of hours of getting used to the mouldings settling to my feet, they are so so lovely! room for my toes (I have two hammer toes, second longer than first, broken a few times I suspect) to stretch out. I seem to have flatter/wider feet than I used to, don't know if this is flat arches or not, but these shoes just let my feet move without restrictions. I was very nervous getting them but they are lovely. the 'strap' goes quite far back toward the heel so no having to pick feet up at the back like with some flip-flop style shoes. I tried some other styles of birkenstocks but they were too heavy at the back. These seem to correct my posture - is that even possible?

Thanks for responding to the ramble. I am completely flummoxed as to why the first GP lied, although I now recall her asking me to come back to discuss my mood and how I was coping - that makes me even more angry as a huge part of my depression and isolation is the back problem and the hopelessness HCPs have left me with. Presumably she thought I was making it up. I probably will complain once I find the energy. I've seen her once and only ever had one appointment with her offered, which I declined.

It might be a good idea to ask about the spinal pathway. I never encountered this, partly because the pain felt more pelvic. Either way I wasn't given any option apart from four sessions of physio and a referral to the pain clinic. I did recently google for info on any spinal assessment team and found nothing. I did find the musculoskeletal physio thing I'm now being referred to - if the GP thinks surgery won't be the answer then I'm guessing physio is the only other way to reduce herniated discs so I may as well start ASAP. And yes she is rubbish and has no authority, she also hasn't seen the scan image! I spoke about an appointment I had with a friend and she knew it was the same GP and told me she is a registrar GP.

And yeah going to a pain clinic without any investigation or referral, except four sessions of physio which I shouldn't have had as it's for acute conditions under one year, is bizarre. To me the pain clinic was the point you accept it's not going to fixed completely or quickly and it's more about managing pain. The pain Dr did roll his eyes when I said the GP refused my request for an MRI.

I'll go get the report tomorrow and check whether I need to and how to bring the MRI image. Hopefully I will speak to a private physio and book an app. If I did go private to the surgeon would I need another GP referral or just call her (yes it's actually a woman) secretary? I presume it's going to be £250ish. Although I'm ok to wait really as the medication is helping a lot and I have no crazy spasms, just normal pain (and a supply of diazepam).

Pavlov, I'm glad it's less painful all over. With there just being one pain it's more likely that is the true pain without all the nasty spasm pain joining in. Any nearer to identifying the right second opinion?

So could it be that you currently have disc type pain but the vertebrae are stable? Whereas sometimes the vertebrae slip and you get the worse all over pain?

If so, maybe just maybe a fusion would at least help.. Mind you, not to rain on your parade but I have goodish days then crap days for no apparent reason. Sometimes even goodish weeks. Though to clarify, I always need big doses of analgesia, but sometimes nothing really helps. Other times I get awY with activities I thought I'd suffer for.

So I find it all a bit random but love the fact that you are feeling a little better.xx